PKD & Dialysis . . . Where I Tell It Like It Is (Now featuring Transplant!)

April 2010

2010-04-12T19:41:00.005-05:00

Don't know if I can continue this blog, but think I will try and salvage it. My poor mind just doesn't want to function on anything. This week has been rather rough. Thought I started out with either a virus or a touch of food poison, then as the week wore on, I had no desire to eat whatsoever. Therefore, you know that classifies me as SICK! I've eaten very little, mostly cereal and yogurt. I finally figured it out - took only a week. The Bactrim they gave me for a possible uti has done a number on my stomach/gastrointestinal tract. (Oh yeah, I remember them saying something about double strength. oi) Anything I eat causes distress. No energy. cramping. I'm so tired of fighting something ALL THE TIME! I felt better than this before the transplant. If I could be assured that it never gets better than this, I'd gladly go back to where I was . . . on dialysis. That is almost blasphemy to all those kidney patients waiting with anticipation to get "the call." So many think transplant is the magic answer. Not necessarily so. My own daughter got a transplant two weeks ago. Everybody's situation is different. I'm glad my daughter got hers and hope she does well with it. As for me . . . . . . ? I don't know.

Jan. 2, 2010

2010-01-02T10:13:00.003-06:00

I'm not sure there's a good reason to even continue to blog. Seems like an activity in futility. A whole new year is started and I haven't figured out where the last one went. However, it is good sometimes to be able to read back over the posts and see where I've come from, good or bad, and see a little of where I am going, good or bad.

So, I am starting the year with tiredness, a slight sore throat, a desire for something different but have no great hopes of achieving much. That comes with the tiredness though.

Hopefully I'll get back in the swing of things after I've posted a few times.

~Later

August Already!

2009-08-11T10:55:00.004-05:00

Gosh! I've really let the journaling go by the wayside this summer. I've been totally deplete of energy, and had lots of joint pain. The dr. said my feet were swelling because of some med I'm taking.

Also, suggested I do a sleep study, that not getting the right kind of sleep could cause the fatigue. So, as I thought about it, yes, I've been going to bed later than usual. But I have to get up at 9:00 to take my meds, so I might not be getting enough restorative sleep. I KNOW, staying in bed til 9:00 may sound like a really long time, but it really isn't if you have stayed up really late. I have the sleep disorder related to fibromyalgia and if I don't get enough of the right kind of sleep, it really takes a toll on the body, and increases my pain. Being the analytical person that I am, I finally decided that this was causing my fatigue.

So, I plan to get myself to bed earlier and see if it produces the desired results. There is no need for expensive tests if I can figure out the cause of my problem. And don't get hysterical, I don't "diagnose and treat" all my ailments. Just when common sense suggests something that might help and can do no harm. I don't see going to bed earlier doing any harm, do you?

Along with physical fatigue, I've had brain fatigue. If you've ever had it, you'll know what I mean. It's a tiredness that is not fun. You can't explain it, you can't treat it with specific medication, you don't just bounce back with a nap, it affects your life in every aspect. And it brings me lower than low. Enough said.

Friday

2009-05-29T14:44:00.001-05:00

I emailed my dr. yesterday to see if he had my results. He said he got them today and that they were clear. Told me to try orthodic stockings for my swelling feet. Yipeee!!!

Wednesday

2009-05-27T11:00:00.002-05:00

I'm still waiting to hear from my ultrasound. My feet still get really swollen by night time, but the swelling in my arm seems to be lessoning. ~Later

Checkup

2009-05-21T13:34:00.003-05:00

Day before yesterday was my appt. at Vanderbilt. My creatinine was 1.06! We talked about several things and then I told him I had some swelling. My ankles and my right arm. He wanted to do an untrasound (venus doppler) but they didn't have an opening then. They called and asked if I could take one locally and I gave her my general physician's name and number and they called and got me set up for the test tomorrow, (Friday). My feet are swelling even more. The dr. thought I might have stenosis (narrowing of a vein). Whatever it is, I hope it is easily fixed. Seems like it's going to be something all the time. But then, it was something in life all the time before I had kidney failure. :) So we just do what we've gotta do, and keep on going. Life isn't fair, but it's still good.

Too Soon Old, Too Late Smart

2009-05-12T09:39:00.005-05:00

I've been having a difficult time lately. No energy, no motivation, just don't feel good, allergy/sinus headache, ears stopped up and severe pain in feet, knees, hip and lower back (most joints). Well, you might say, what's the problem? I've been trying to figure it out. I've considered everything from rejection to arthritis to who knows.

Had several days recently that I had to be up somewhat early and it's hard for me to get going in the morning. Sometimes I've found it helpful to only take one amitriptyline at night and I can wake up easier. The amitriptyline is used to enable me to attain stage 4 sleep which is the restful and restorative sleep. If you don't attain stage 4 sleep, you may sleep the night through but you won't feel like you slept at all. It's that "feel like I've been run over by a truck" feeling. This is one of my major difficulties with fibromyalgia. Stay up all night for three nights in a row and you will understand the feeling.

We've been dwelling on the kidney transplant and the balancing of everything from that point of view that I haven't thought a lot about any other problems. Finally, the light came on last night when my hubby was bringing me my meds and he asked if I wanted one or two ametriptyline. I said, "TWO! I'm not even going to get up tomorrow!" That's when the light came on.

Emily and I went shopping yesterday and were excited about finally having a whole day to ourselves. I only took one pill so I could get up and I had done that several days in a row. I was tired when I got up but expected things to pick up as the day went on, but it didn't. It just got worse and worse and worse. Just let me die! So, I took the two pills, went to bed earlier than usual, and I think maybe I did die for awhile. No, I didn't sleep late. Woke up early for me and couldn't go back to sleep so I got up. I am feeling better, however, and know with a few more such nights I will be as good as new. I consider a lesson learned. It's time I took things in hand. (No snide remarks from the peanut gallery, please.) Sigh! It's going to be a good day. ~Later

Kidney Walk 2009

2009-05-08T11:52:00.016-05:00

1. Emily and Jessica

2. - Ann -

3. Katie and Grandma, Banner Competition 3rd place.

4. Ann, Carey, Dr. Barr

5. Becky, Jessica, Ann, William, Jennifer, Elizabeth

6. Ann and Becky

7. Dick & Becky, William, Jonathan, Jessica, Ann, William, Jennifer, Delaney,Scott, Elizabeth, Libby; Katie, Janie and Chloe

8. Dicky, Becky, Jonathan, Jessica, William, Ann, William, Jennifer, Scott, Emily, Delaney, Libby, Katie, Janie, Chloe

9. Grandma and Chloe

10. Janie, Katie, Grandma, Chloe

11. Ms. Ann and Emily

12. Jessica and Janie

13. Banner

I'm Ba-aaaaack!

2009-05-05T09:34:00.007-05:00

It's been awhile, hasn't it? We finally had the Kidney Walk Sunday afternoon (May 3). The whole weekend was quite a deal. First we had a family reunion on Saturday and then the Kidney Walk on Sunday.

The Walk was kind of a whirl. We worked very hard and it showed. I was surprised to learn that our team was the top team fundraisers, I was the individual top fundraiser, and my dialysis center, DaVita,Inc, was the top dialysis center fundraiser. They also had a banner contest this year and I got third place in that. Considering I spent half the night before the walk getting it done I was quite surprised to even place.

Goody bags and tee shirts, prizes, food, old friends, and playground for the kids, I think everyone had a good time. When we first got there all the kidney patients, whether dialysis or transplant, received a kidney-shaped medallion with the Kidney Walk emblem and the words "kidney Champions" below it.

It has been very stormy with lots of rain for a week and looked quite stormy May 3. Although everything was wet, the weather held off for the whole walk and it was quite nice.

I don't know if I will be allowed to be a team captain or not next year, at least for the center, since I'm no longer a patient there. I'll have to check into that.
Here it is Tues. and I'm still somewhat wiped out. It's good to have one project finished and ready for a new one. ~Later

Dr.'s Appointment

2009-04-23T08:32:00.002-05:00

Yesterday was a long day. My appt. was at 10:45 and it was 11:30 before I was called back. The nurse took my vitals and put me in a room. The doctor didn't come in until almost 1:00. We have never had to wait more than a few minutes before. He did apologize and said if I'd make my appointments earlier in the day, the wait would be shorter. He doesn't rush people through and as long as they have questions he stays with them. I like that. I don't mind the waiting if I know that I'm gonna get the same courtesy. I try to have my questions written down so we can go right through them. Otherwise, I'll forget what I wanted to ask. It's very frustrating to go through the whole appt. routine, then leave and realize you forgot half the questions you were going to ask.

The dr. was pleased with my overall progress. Renewed a prescription. Added zyrtec for my allergy/sinus problem. Up until this time I've been seeing a doctor every week. He said this time I've been reprieved and come back in a month! Of course, I can contact them if I have any problems. I am very, very pleased with the whole results.

~Later

Vanderbilt today

2009-04-22T07:57:00.003-05:00

Well, these last two posts are a little whacko. Sometime when I have the time I'll try to figure it out and keep one that works and delete everything else.

I have an appt. today at Vanderbilt. Wow, when I think of some of the past appts. and see where I am today, I praise God for the passing of time. There is nothing left that needs taking out. PTL! At my last appt. with the urologist, the dr. asked if I had anything to say, or comments to make. I told him I did have one, that I thought anything they put in you while you were asleep ought to be taken out while you were asleep. I still stand by that statement. LOL

Most of my pain from CIPS is gone. My right foot and leg gives me some problems. Incision is looking good. Let's see, I need to build my strength badly. I feel like a marshmallow on a hot day. I'm a little shaky all the time. Emily has me in training for the Kidney Walk. You'd think I was running a marathon! Bless her little heart! (IWUE) ~Later

PKD & Dialysis . . . Where I Tell It Like It Is: Technical Aspects of Renal Transplantation

2009-04-17T11:28:00.000-05:00

PKD & Dialysis . . . Where I Tell It Like It Is: Technical Aspects of Renal Transplanhttp://f1.grp.yahoofs.com/v1/gKfoSYCZlG09ofavViC6-EMlYtN0_Jhx-shP4vKlCtNoyRvnOSkvC311-l2a_HgH2_42ZrIBA1spXYZMqS8YUa04Iglq/Surgery/adk5-14.ccc.QXD.pdf tation

Another Doctor's Appointment

2009-04-16T14:31:00.002-05:00

Yesterday was my last appointment with one of the doctors I've been seeing. And I am finally rid of the 29 staples they used to close the incision. Wonderful relief!!

I had visions of me journaling all the details of my journey through transplant, but somehow I've found it too tedious, yes, even for me. So, I'm managing to hit the high spots and hope that is helpful. All my days seems to run together. I have been able to see some improvement each week and that's very encouraging.

Yesterday after my appt. my dear sweet hubby took us to the Olive Garden. M--m-m-m-m-m-m-m-m-! One of my favorites! Didn't have time to do any shopping though. We just barely made it home in time to go to church.

The kidney walk is in about two weeks. I guess I'm prepared, but not as much as I would like to be. The surgery put me behind, but everybody has done well so I'm not complaining. Hope you will support the National Kidney Foundation wherever you live. It's a good cause.

~Later

I never have anything simple.

2009-04-11T19:48:00.005-05:00

CIPS is the diagnosis of my severe foot and leg pains I've been having since last weekend. I googled it and this is the best at explaining it in fairly plain English.
Calcineurin-inhibitor induced pain syndrome (CIPS): a severe disabling complication after organ transplantation.

The reduction of cyclosporine- or tacrolimus trough levels and the administration of calcium channel blockers led to relief of pain. The Calcineurin-inhibitor Induced Pain Syndrome (CIPS) is a rare but severe side effect of cyclosporine or tacrolimus and is accurately diagnosed by its typical presentation, magnetic resonance imaging and bone scans. Incorrect diagnosis of the syndrome will lead to a significant reduction of life quality in patients suffering from CIPS.

Bone pain after transplantation is a frequent complication that can be caused by several diseases. Treatment strategies depend on the correct diagnosis of the pain.

Now, in my own words. I have a deficiency of vitamin D and calcium in my system so it is drawing them from my bones which causes severe pain. The dr. put me on a supplement of calcium and vitamin D and the pain has begun diminishing. Right now the majority of pain is only in my right foot and right leg. I hope it keeps diminishing and will soon be healed. When it does I may just go absolutely and positively bonkers. Ya-hooooo!

Not Fun Stuff

2009-04-01T02:34:00.002-05:00

I've had an interesting, albeit painful, week. Starting during the weekend, I began experiencing pain all over my body; joints, muscles, feet, hands, elbows, knees, thighs, you name it. At first it was kind of like a good case of fibromyalgia flair up, perhaps caused by the weather. But, as time went on, I was noticing that nothing helped. I tried tylenol first with no results, and then I tried my pain meds from the surgery. It helped some but did not get rid of it, nor has it gotten any better the days hence.

I checked my notebook and it said to call the Vanderbilt team if I had pain or flu-like symtoms. I've never had the actual flu, but from all the descriptions I've heard, this would qualify. The nurse I spoke with said she had never gotten symptoms like this and didn't know what I should do. She called the dr. and he said to take 1 or 2 pain pills every 4-6 hours. He preferred one pill every six hours. So, that is where I am. I've also tried being very still and relaxed in the recliner and even tried using the heating pad.

I went to sleep in the chair and thought I could get some sleep, but later I awoke thinking it was early morning. It was early all right and still dark out. I got up and looked at the clock. It said 1:05 and I thought the clock must have stopped. I looked at a couple more clocks and they also said 1:05. I had not slept long at all. I'm anxious to get to my appt. tomorrow and see if we can figure out what's going on. I'm hoping and praying that I can get the drainage tube removed tomorrow. arrrrgh! Besides my aches and pains, my hands and feet have been cramping! I'm so ready to be healed. ~Later

Day 11 - Five Dialysis Treatments not taken!

2009-03-24T14:09:00.001-05:00

How are you all doing today? It's a pretty fair day for me.
Yesterday was really tough. I had swelling over the surgery
site, redness and irritation of the incision site plus the
drain access was very irritated and hurt all day. I finally
kept eliminating causes and finally decided the tube needed
to be anchored. It could move freely so every time I moved,
it was too, and basically digging in the same place.

Anyway, I built a bandage around it that would keep it from
moving. Also used some neosporin on it. Yes, I even called
Vanderbilt to the neph on call and he wasn't too excited
since I had no temperature. I very rarely get temps. Anyway,
I thought if he wasn't excited, I wasn't either. Did what I
could to be comfortable and I'm better this morning.

I'll be so GLAD when I get this drainage tube out. I will
feel so FREE!!!! I'm so anxious to just heal. What will I do
with my days when they are all free!!! I've planned on Tues.
and Thurs. so long I will have to get used to it. I'll have
to learn how to be a normal human being. LOL Well, maybe not.

~My bailout was nailed to a tree.

Wonders never cease!

2009-03-18T23:04:00.002-05:00

Oh. My. Gosh. Folks! Wonders indeed never cease. As you have been reading here I have been seriously considering going on peritoneal dialysis. I was well on my way to preparing for it. My joints, etc. have been giving me so much pain from lying in the dialysis recliner. I had my mind made up. I was ready. And then it happened. On Friday 13th, 7:00 AM we got a phone call that told us we had a kidney. What? A kidney? Yes, come and get it! So William and I got up and started throwing stuff together and headed for Vanderbilt Medical Center. We got there in good time, but then it was hurry up and wait. It was 6:00 PM when they wheeled me into surgery and 9:00 PM when they wheeled me out. Now I'm the proud owner of three kidneys! It's been kind of rough at times but I know that each day that passes is one day closer to healing. I don't have the energy to sit here for very long so the details will have to come later. By the way, surgery was Friday night, and I came home on Monday afternoon! I'm still pretty much in a daze.

Til next time,
~Ann

What do my kidneys do?

2009-02-12T09:15:00.005-06:00

Your kidneys are bean-shaped organs, each about the size of your fist. They are located near the middle of your back, just below the rib cage. The kidneys are sophisticated reprocessing machines. Every day, your kidneys process about 200 quarts of blood to sift out about 2 quarts of waste products and extra water. The waste and extra water become urine, which flows to your bladder through tubes called ureters. Your bladder stores urine until you go to the bathroom.

The wastes in your blood come from the normal breakdown of active tissues and from the food you eat. Your body uses the food for energy and self-repair. After your body has taken what it needs from the food, waste is sent to the blood. If your kidneys did not remove these wastes, the wastes would build up in the blood and damage your body.

The actual filtering occurs in tiny units inside your kidneys called nephrons. Every kidney has about a million nephrons. In the nephron, a glomerulus—which is a tiny blood vessel, or capillary—intertwines with a tiny urine-collecting tube called a tubule. A complicated chemical exchange takes place, as waste materials and water leave your blood and enter your urinary system.

At first, the tubules receive a combination of waste materials and chemicals that your body can still use. Your kidneys measure out chemicals like sodium, phosphorus, and potassium and release them back to the blood to return to the body. In this way, your kidneys regulate the body’s level of these substances. The right balance is necessary for life, but excess levels can be harmful.

No Title

2009-02-07T12:43:00.002-06:00

I was finally called. They are going to send me some information, video, etc. and then I will call them back and make an appointment to have a conference with them. I will be compiling questions I need answered and we'll go from there.

I'm in such a mood. ~Later

2009-01-29T01:11:00.003-06:00

Dialysis went fine today. They only kept me, and everyone else, on the machine for two hours because of the weather. Snow and/or ice has been predicted. Some of them almost had to spend the night the last time, so they wanted to get everyone through a quick session and sent home. I was so awfully disappointed that I was deprived of a whole hour sitting there.:)

A PD nurse was supposed to call me Monday or Tuesday but nothing so far. I'm waiting on three calls at present: (1) the PD nurse, (2) my glasses from Wal-Mart, and (3) my negatives put on CD, also Wal-Mart. The wheels that be . . . grind slowly.

~Later

A Royal Rant

2009-01-22T11:36:00.004-06:00

Well, okay. . . . here it is running right through January of the new year 2009. What has changed? I'm not sure. I've been out of sorts which I always seem to be of one kind or another. Sometimes it's hard to clearly define.

Daughter, Becky, who just recently started dialysis at age 42 is doing great! I'm very proud of her. She chose to have peritoneal dialysis as it afforded her the time to continue home-schooling her boys.

I don't know why I didn't give peritoneal a thought. I think it just seemed foreign to me, and hemodialysis is what my sister was on. But, after being on it for almost 2 years, it is beginning to get very old.

I made it fairly good while my access was in my left arm. I could still use my right arm to do things and I did quite a bit of hand sewing. But less than a year out, my fistula quit working and I had to have one put in my right arm.

So, what are the things you can do without using your right hand/arm? Watch TV. Read. Sleep. Pray. Very sloppy crosswords. Look out the window at the parking lot. Watch the nurses and patients. Are you getting excited yet?

I've dealt with a lot of depression in my life. It's part of my personality. Sometimes it gets me down, especially in the winter months with shortened days and no sunshine. You can see how this in conjunction with dialysis could prove not to be an encouraging thing for me.

All this to say this: I'm toying with the idea of changing to peritoneal dialysis. Just thinking about not having to go to the clinic and "hook up" for 3 hours, three days a week puts a longing in my heart. I wanna stay home! I wanna play! I want my time to be "my time."

Then being the analytical person that I am, I start thinking about the reality of it. Am I disiplined enough to do the exchanges as regularly scheduled? I'm a procrastinator. Time gets away from me big time. But, I would live in the hope of being able to use a cycler while I sleep. That way my days would be free! FREE!

I'm learning now that they say that PD (peritoneal dialysis) gives the best results. More level blood work results with fewer fluid and dietary restrictions. Several professionals I've talk with says that would be their chose of treatment.

I'm analyzing it to death. What if I go through all that and it doesn't work, or I don't like it? What if I go thorough all that and can't use a cycler? What if, what if, what if? Groan . . . . ! None of this is my choice. I think that is the problem. I HAVE TO DO SOMETHING whether I want to or not. And none of the choices are "MY" choices. I'm just trying to play the cards dealt to me. Sigh! I know, I know. I'm just butting my head up against the wall. I think I just needed to vent.

Any suggestions from my adoring public? LOL Until next time . . . . .

How Hemodialysis Works

2009-01-22T11:28:00.003-06:00

In hemodialysis, your blood is allowed to flow, a few ounces at a time, through a special filter that removes wastes and extra fluids. The clean blood is then returned to your body. Removing the harmful wastes and extra salt and fluids helps control your blood pressure and keep the proper balance of chemicals like potassium and sodium in your body.

One of the biggest adjustments you must make when you start hemodialysis treatments is following a strict schedule. Most patients go to a clinic” - a dialysis center ”three times a week for 3 to 5 or more hours each visit. For example, you may be on a Monday-Wednesday-Friday schedule or a Tuesday-Thursday-Saturday schedule. You may be asked to choose a morning, afternoon, or evening shift, depending on availability and capacity at the dialysis unit. Your dialysis center will explain your options for scheduling regular treatments.

Researchers are exploring whether shorter daily sessions, or longer sessions performed overnight while the patient sleeps, are more effective in removing wastes. Newer dialysis machines make these alternatives more practical with home dialysis. But the Federal Government has not yet established a policy to pay for more than three hemodialysis sessions a week.

It's all over but the shouting . . . . . . .2008, that is!

2008-12-28T22:34:00.003-06:00

Yes, Christmas is over, and as usual, we made it through it just fine. That's one lesson I have learned well, that this, too, shall pass. Often it passes into something worse, so you should never complain with the way things are. LOL

I've not been blogging a lot lately. One, the busy-ness of the holidays; and two, I've been trying to do the facebook thing. It's okay, but much too cluttered for me to keep up with. I got a comment on my blog today that was a real encouragment to me. "The Mom" said she had read my whole blog! She is either very brave or a real glutton. But, it does my heart good to think it has really been of benefit to someone else. I hope I'll be able to blog with a little fresher outlook during the next year.

Things have been a little unsettled at dialysis. A new dialysis center will be opening here in the Spring, but not Davita. Several of the staff has quit and will be working at the new place. So we have 4 or 5 new people running things now, and you don't know for sure who is who, and you can only hope that they know what's what.
~Later

Whining

2008-12-18T23:26:00.003-06:00

It's been awhile since I've written. A lot going on, and I just didn't feel like writing. Dialysis hasn't created any problems lately except the usual boredom, and depression. With daughter, Becky, preparing for dialysis at age 42, it's been an adjustment for me. Me on dialysis was okay. A relief in a way, I'd been expecting it for 25 years. Then there's the daylight savings time making it dark sometimes at 4:30. It closes in on me. It's been rainy and foggy and cold. I can't motivate myself. There's so much that needs doing. I'd just like to crawl into a hole for a week or so. That would be soooo helpful.

Well, now that I have probably cheered you up royally, I will leave.
~Later

dialysis

2008-12-08T14:25:00.003-06:00

Well, today was momenteous. First of all, the lady that usually sits next to me wasn't there today. Then I learned that the lady passed away over the weekend. That's 5 or 6 that has died since I've been taking dialysis. Depressing.

Also today, I was taken off 11 minutes early. Both feet were really cramping. I usually can make it to the end of my time, especially when they ease up on the machine (drawing fluid off). Not today. I was trying my best to get them to ease off but they just kept going, so I told the nurse I was about to have a fit! I never say anything except to ask how much time I have left. So, she said she would just take me off. That's fine with me if I can't get it to ease off. I feel like I cheated or something, but, Hey!

2008-12-03T14:40:00.001-06:00

An Interesting Bit of Information

2008-11-17T15:39:00.003-06:00

I have been having sinus problems for ...........well, actually, all my life. It's just a part of me. Sometimes it gets out of hand and I have to do the antibiotics stuff. This last time, I keep having problems and can't really get rid of it. Also, fluid behind my ears, and the glands in my throat swollen. First dr.'s visit I got a shot of antibiotics and a Z-pak. Already was using a nose spray. The sinus/stuffy head got better, but it did nothing for the throat glands and ears. Next came a round of augmentin. Didn't work. I've just finished with a round of (sp?) medrol dose pack (methylprednisolone). Still no affect. I mentioned it at dialysis to the neph. nurse practitioner and she said an ENT would probably be next, with sinus surgery. I told her, "I don't think so!" And she made the comment that someone with chronic sinus problems probably wouldn't do well with immuno-supressants. So maybe it was a good thing I didn't get the transplant. Rats! rats! Rats! RATS!!!! I am now on Allegra and that seems to be keeping it moving, which is a far sight better than trying to dry it up!!

Something New

2008-11-05T00:52:00.002-06:00

Well, I've done something recently that I've never done before. I got a flu shot and a pneumonia shot. Not at the same time. I had never been immunized before. Didn't really wanna be now but felt I should since they frown on giving you a transplant and killing your immune system if you haven't been immunized. My arm is very tender and sore. Oh well. ~Later

The Gift

2008-10-11T11:42:00.001-05:00

The gift

2008-10-10T15:53:00.003-05:00

Yesterday William and I went to Florence to stay with the boys while Becky went for her doctor's appointment. She has PKD the same as me. But she wasn't expecting to hear what they told her. She has 16% function. That means she is at the threshold of having to go on dialysis and must be making plans. Somehow, it was a lot easier to know I had to do this than to know that my child has to do it. There is really no way to be prepared, even when we know. It is always out in the future somewhere. She has the young boys (age 6 and 7 1/2) that she home schools and that is of great concern to her. I'm grateful that I had my girls at a young age, and they were grown before I had to deal with all of this. Things will be fine. It just takes some time to deal with it all. Becky has a strong faith in the Lord and I know she will be okay. And she has a great church family in addition to her 'family' family for support. Yep, it's going to be alright.
~

The Results . . . . . .

2008-10-03T15:16:00.002-05:00

I heard from Vanderbilt yesterday. They said, and I quote, "your donor has been declined." Not that the donor declined, but that she had been declined. You can glean whatever you may from that and you know as much as I do. They tell you nothing because of the donor's privacy. So there it is. And I'm okay with it, I really am. I was beginning to have doubts about it because they just weren't getting back to me. The LORD is still in charge, and if He says I don't need this one, then I don't want it. I'm still trusting Him for what is best for me. At least, now I can get back to my everyday life. Yeah! ~Later

Transplant Update

2008-09-23T17:06:00.000-05:00

It's been two weeks since I was called and told I had a live kidney donor.
I called Vanderbilt this morning . It's my case coordinator's day off. So
we chased around and they started trying to find out what they could.
The girl was actually very nice. My labs were compatible with the donor (and they called it a "her" so I won'tbe growing a beard or anything). The donor, however, has not completed all her testing. We have also chased my mammogram around the world but they finally decided I'm okay. Said if I didn't hear from them, call back in a week or so. Big sigh!

I'm trying to be very, very patient. (Excuse me a moment while I scream.)

Results

2008-09-17T09:30:00.003-05:00

My dr. gave me a shot of antibiotics and Rx for a ZPak. Said I had sinus infection, fluid behind my ear drums, swollen lymph glands. She was excited about the transplant. Said let her know when it was set and she'd be praying for me. I love my doctor! She is so cool.

Prayers Needed!

2008-09-15T09:46:00.001-05:00

I need your prayers. I'm trying to get a sore throat and sinus thing. I have a dr.'s appointment in the morning!

2008-09-12T23:50:00.004-05:00

Well, it was an exciting day at dialysis. I received the kit yesterday and took it into the center today. I had not told anyone there that I had gotten a call. I asked the receptionist if she could take care of this (the box) for me and she asked what it was. I said I'm suppose to send blood samples to Vanderbilt, and she says we send samples to them every month. I said, no, this is for my transplant, and she says, but we send them samples every month for that. I said Nooo, Angie, I got a kidney. This is so I can get my kidney. It finally dawned on her what I was saying and she screamed! Then she was screaming to the whole center that I had gotten a kidney. Then she told everybody who came into the center. She was so excited! I'm a pretty laid back person, but I told her I was shaking after her display of excitement! It was so funny. Then she called everybody that wasn't working today. Everybody was very nice and wished me luck, etc. I kind of hated to go in and say, "Hey, I gotta kidney!" when there are so many who have been there longer than me, and some that aren't candidates for a transplant. But they were all very gracious.

I Couldn't Resist Posting These

2008-09-11T13:35:00.000-05:00

More Than You Probably Want To Know.....but I find them fasinating!

2008-09-11T13:30:00.002-05:00

Click for close-up detail

Testing Before Transplant

2008-09-11T12:07:00.001-05:00

http://www.aakp.org/aakp-library/Transplant-Compatibility/index.cfm

Not Yet . . . .

2008-09-10T20:09:00.002-05:00

I realized after a comment that I didn't give a time frame. They are going to mail the kit to me to have my blood taken and then Fed-Exed to Vanderbilt for the test. If all goes well, we're looking at about a two week time period. They are also checking a previous mammogram to compare a more recent one to it. They didn't say why, so I'm not going there unless they tell me to. We've played a lot of phone tag yesterday and today but I think we finally got some stuff settled.

~Later

Guess What?!!!!!!!!

2008-09-09T18:45:00.001-05:00

I got a call this morning that was totally unexpected. I don't care how much you know it might happen, can happen, will someday happen, it's still surreal when it happens. No, I didn't win a sweepstake or the lottery. But, I got a call from the Vanderbilt transplant office. They said I may have a kidney!!! Let me explain.

This person was tested to see if they could be a donor for someone waiting on the transplant list. They were not a match. So the person told them they would still give their kidney and to put them in the computer. That's when they found that I was a match. And a live donor at that! I had thought I was destined for a cadaver donor if at all. I left it in God's hands. I did not know how or for what to pray for, so I left it in His hands, whether a live or cadaver donor, or stay on dialysis. I've just tried to take it all a day at a time. And then this morning, I got the surprise phone call! There is one more test before it's a sure thing. That's where they will mix some of my blood with the donor's blood.

If you have anti-human antibodies in your blood, they may react with the tissue type of a kidney donor, which means that you would not be able to receive a kidney from that donor. The antibodies in your blood would attack and damage the kidney immediately after transplantation. This is called "hyperacute rejection" which usually results in loss of the transplanted kidney. For more information check out this website: http://www.transplantexperience.com/kidney_body_faqs.php?f=o#5

This is possibly the start of a whole new journey. It, too, will have to be taken a day at a time. I'm excited, nervous, scared, anxious, ALL OF THE ABOVE! I don't know how I'll feel if it all falls through, but I know it will be okay either way. It will still be in God's hands.

Hubby's in the Hospital

2008-09-01T23:34:00.003-05:00

William had not felt well for several days. It's not unusual for him to have bouts of discomfort from osteo-arthritis and other maladies. But, he commented Friday night that he didn't know why his leg kept hurting. Well, that rang a bell and I asked if he thought he could have a blood clot. It had crossed his mind and we decided to get him to the emergency room. It wasn't long until he was sure that's what it was and tests confirmed it. Two blood clots in his right leg and one in his lung. William has had blood clots before, always after surgery. This time is independent of surgery. And there's nothing to do but wait. Frustrating.

Test results

2008-08-28T09:49:00.002-05:00

Last Thursday I had a day of tests. A mammogram, a bone density and a sonagram on the carotid artery. Got the results from the sonagram this morning. Possible stenosis (narrowing) on the right side. Appointment with the surgeon on Wed. The same one that did my last fistula surgery. He only sees patients on Wed. as he is in surgery the rest of the time.

August 19 - by 8 minutes

2008-08-19T00:07:00.004-05:00

Dialysis is still trudging along. I have been having a stuffy head, but it hasn't been bad. But this morning I awoke to a "stopped up" head. Enough to make me a little woozie. And my hearing seems to have an echo. Actually it's more like hearing someone else's phone conversation, part speech, part buzz.

Thursday I have a day of tests; mammogram, bone density scan and aortic scan. Oh goody.

It's 1:00 AM . . . .

2008-08-16T00:58:00.003-05:00

And I'm fighting the fact that I need to be in bed. Sleeping seems such a waste of time. If I could get as much done from 8:00 AM to 8:00 PM that I'd like to do from 10:00 PM til whatever, I'd be in really good shape. But life just doesn't arrange itself to suit my disposition. I'm a night owl. Not a morning person doesn't even begin to cover it. Anyway . . .

Dialysis is still going well. No problems except boring, tiring, etc. A nurse asked me today if I was feeling better. They have been giving me doses of iron and vitamin D. I haven't noticed that I've been feeling any better, but maybe not as bad as I do sometimes. Does that make sense? My weeks seem like they are about 3 days long.

I guess it is a good thing that I don't seem to have anything to write about. But, that's the way it is.

~Later

Hello, World!

2008-07-26T11:58:00.002-05:00

It has been awhile since I've journaled anything about dialysis, and that's because everything has been going boringly well. No problems. No surprizes! And that's a good thing.

I've gone totally simplistic. They sparingly tape the needles once they are in and I hold or allow the tubes to lay free. (I am very cautious to keep them from being caught or tangled). It seems that any restriction at all creates discomfort of some kind. When it is time to come off, I hold the site myself, as I've posted before. The top site is usually good with the 'super stopper sphere' they use. (Similar to a cotton ball only it's made of rayon and something.) The lower site is good after I've held it 3-4 minutes. I change to a bandaid and I'm good to go. I do wait until the basic 15 minute waiting time is passed. Some day I may go ahead and leave. I've still not had one bleeding incident since I've been doing this.

One day one of the attendants was getting the stuff to take me off, and she had the clamps. I reminded her that I didn't use them and then commented on me messing with their routine. She said actually she had learned from it, and said they had recently had another patient that bled afterwards no matter how much they taped or what they tried. Then she remembered me, and used less pressure, less tape, etc. and she did fine. So, she learned that the same amount of pressure is not good for everyone.

An elderly friend of ours is on dialysis now, and I visit with him sometimes. He's in his 80's and is finding it difficult to be tied down so long. He has multiple health problems, a 3 in 1 heart monitor/pace maker thingy and diabetes, emphysema, and bronchitis and says he never has any pain. Very fortunate. His age and health prevents him from being eligible for a transplant. He says he is ready to go home.
For those who might not know, he's referring to heaven. It's not a morbid statement. It's the hope and peace of a christian. And I think he's looking forward to it. We tend to think on these things when we face our mortality.

I thought this worthy of a read.

2008-07-21T14:07:00.006-05:00

TESTIMONY FROM TONY SNOW

This is an outstanding testimony from Tony Snow concerning
his fight with cancer. Commentator and broadcaster Tony Snow
announced that he had colon cancer in 2005. Following surgery
and chemo-therapy, Snow joined the Bush Administration in
April 2006 as press secretary.
Unfortunately, on March 23, 2007, Snow, 51, a husband and
father of three, announced the cancer had reoccurred, with
tumors found in his abdomen-, leading to surgery in April,
followed by more chemotherapy. Snow went back to work in
the White House Briefing Room on May 30, but has resigned
since, "for economic reasons," and to pursue "other interests."
---------------------------------------------------------------------

"Blessings arrive in unexpected packages, - in my case, cancer.
Those of us with potentially fatal diseases - and there are
millions in America today - find ourselves in the odd position
of coping with our mortality while trying to fathom God's will.
Although it would be the height of presumption to declare with
confidence "What It All Means", Scripture provides powerful
hints and consolations.

The first is that we shouldn't spend too much time trying to
answer the "why" questions : Why me? Why must people suffer?
Why can't someone else get sick? We can't answer such things,
and the questions themselves often are designed more to
express our anguish than to solicit an answer.

I don't know why I have cancer, and I don't much care. It
is what it is- a plain and indisputable fact. Yet even
while staring into a mirror darkly, great and stunning
truths begin to take shape. Our maladies define a
central feature of our existence: We are fallen. We are
imperfect. Our bodies give out.

But despite this -, or because of it-, God offers the
possibility of salvation and grace. We don't know how
the narrative of our lives will end, but we get to choose
how to use the interval between now and the moment we meet
our Creator face-to-face.

Second, we need to get past the anxiety. The mere thought
of dying can send adrenaline flooding through your system.
A dizzy, unfocused panic seizes you. Your heart thumps;
your head swims. You think of nothingness and swoon. You
fear partings; you worry about the impact on family and
friends. You fidget and get nowhere.

To regain footing, remember that we were born not into
death, but into life,- and that the journey continues
after we have finished our days on this earth. We accept
this on faith, but that faith is nourished by a conviction
that stirs even within many non believing hearts- an
intuition that the gift of life, once given, cannot be
taken away. Those who have been stricken enjoy the special
privilege of being able to fight with their might, main, and
faith to live-fully, richly, exuberantly -no matter how their
days may be numbered.

Third, we can open our eyes and hearts. God relishes surprise.
We want lives of simple, predictable ease-, smooth, even trails
as far as the eye can see, -but God likes to go off-road. He
provokes us with twists and turns. He places us in predicaments
that seem to defy our endurance and comprehension- and yet don't.
By His love and grace, we persevere. The challenges that make our
hearts leap and stomachs churn invariably strengthen our faith
and grant measures of wisdom and joy we would not experience
otherwise.

'You Have Been Called' Picture yourself in a hospital bed. The
fog of anesthesia has begun to wear away. A doctor stands at
your feet; a loved one holds your hand at the side. "It's
cancer," the healer announces. The natural reaction is to
turn to God and ask him to serve as a cosmic Santa. "Dear
God, make it all go away. Make everything simpler." But
another voice whispers: "You have been called." Your
quandary has drawn you closer to God, closer to those you
love, closer to the issues that matter-, and has dragged into
insignificance the banal concerns that occupy our "normal time."

There's another kind of response, although usually short-
lived-; an inexplicable shudder of excitement, as if a
clarifying moment of calamity has swept away everything
trivial and tinny, and placed before us the
challenge of important questions.

The moment you enter the Valley of the Shadow of Death,
things change. You discover that Christianity is not
something doughy, passive, pious, and soft. Faith may
be the substance of things hoped for, the evidence of
things not seen. But it also draws you into a world
shorn of fearful caution. The life of belief teems with
thrills, boldness, danger, shocks, reversals, triumphs,
and epiphanies. Think of Paul, traipsing through the
known world and contemplating trips to what must have
seemed the antipodes ( Spain ), shaking the dust from
his sandals, worrying not about the morrow, but only
about the moment.

There's nothing wilder than a life of humble virtue,
for it is through selflessness and service that God
wrings from our bodies and spirits the most we ever
could give, the most we ever could offer, and the
most we ever could do.

Finally, we can let love change everything. When
Jesus was faced with the prospect of crucifixion,
he grieved not for himself, but for us. He cried
for Jerusalem before entering the holy city. From
the Cross, he took on the cumulative burden of
human sin and weakness, and begged for forgiveness
on our behalf. We get repeated chances to learn
that life is not about us, that we acquire purpose
and satisfaction by sharing in God's love for others.
Sickness gets us partway there. It reminds us of our
limitations and dependence. But it also gives us a
chance to serve the healthy. A minister friend of
mine observes that people suffering grave affliction
often acquire the faith of two people, while loved
ones accept the burden of two people's worries and fears.

'Learning How to Live'. Most of us have watched friends
as they drifted toward God's arms not with resignation,
but with peace and hope. In so doing, they have taught
us not how to die, but how to live. They have emulated
Christ by transmitting the power and authority of love.

I sat by my best friend's bedside a few years ago and
saw the sting of cancer take him away. He kept at his
table a worn Bible and a 1928 edition of the Book of
Common Prayer. A shattering grief disabled his family,
many of his old friends, and at least one priest. Here
was a humble and very good guy, someone who apologized
when he winced with pain because he thought it made his
guest uncomfortable. He retained his equanimity and
good humor literally until his last conscious moment.
"I'm going to try to beat [this cancer]," he told me
several months before he died. "But if I don't, I'll
see you on the other side."

His gift was to remind everyone around him that even
though God doesn't promise us tomorrow, he does
promise us eternity, filled with life and love we
cannot comprehend, and that one can in the throes
of sickness point the rest of us toward timeless
truths that will help us weather future storms.

Through such trials, God bids us to choose: Do
we believe, or do we not? Will we be bold
enough to love, daring enough to serve, humble
enough to submit, and strong enough to acknowledge
our limitations? Can we surrender our concern in
things that don't matter so that we might devote
our remaining days to things that do?

When our faith flags, he throws reminders in our
way. Think of the prayer warriors in our midst.
They change things, and those of us who have been
on the receiving end of their petitions and inter-
cessions know it.

It is hard to describe, but there are times when
suddenly the hairs on the back of your neck stand
up, and you feel a surge of the Spirit. Somehow
you just know: Others have chosen, when talking
to the Author of all creation, to lift us up,
to speak of us!

This is love of a very special order. But so is
the ability to sit back and appreciate the wonder
of every created thing. The mere thought of death
somehow makes every blessing vivid, every happiness
more luminous and intense. We may not know how our
contest with sickness will end, but we have felt
the ineluctable touch of God.

What is man that Thou art mindful of him? We
don't know much, but we know this: No matter
where we are, no matter what we do, no matter how
bleak or frightening our prospects, each and
everyone of us who believe, each and every day,
lies in the same safe and impregnable place,
in the hollow of God's hand."

Donor kidneys removed with single bellybutton cut

2008-07-17T22:09:00.002-05:00

CLEVELAND - Brad Kaster donated a kidney to his father this week, and he barely has a scar to show for it.

The kidney was removed through a single incision in his bellybutton, a surgical procedure Cleveland Clinic doctors say will reduce recovery time and leave almost no scarring.

"The actual incision point on me is so tiny I'm not getting any pain from it," Kaster, 29, said Wednesday. "I can't even see it."

Kaster was the 10th donor to have the procedure done at the Cleveland Clinic by Dr. Inderbir S. Gill and colleagues. The 11th was done Thursday. Gill said the technique could make kidney donations more palatable by sharply reducing recovery time.

More than 80,000 Americans are awaiting kidney transplants. Last year, there were about 13,300 kidney donors in the U.S., and about 45 percent were living donors, according to the Organ Procurement and Transplantation Network.

The first 10 recipients and donors whose transplants used the single-incision navel procedure have done well, according to the researchers. They report on the first four patients in the August issue of the Journal of Urology.

Preliminary data from the first nine donors who had the bellybutton procedure showed they recovered in about just under a month, while donors who underwent the standard laparoscopic procedure with four to six "key hole" incisions took just longer than three months to recover.

The clinic says the return to work time for single-point donors is about 17 days, versus 51 for traditional multi-incision laparoscopic procedure.

"For me, that's huge so I can get back to work," said Kaster, a self-employed optometrist.

Patients of the new procedure were on pain pills less than four days on average, compared with 26 days for laparoscopic patients.

"This represents an advance, for the field of surgery in general," said Gill, who predicted the bellybutton entry would be used increasingly for major abdominal surgery in a "nearly scar-free" way.

"Will this decrease the disincentive to (kidney) donation? I think the answer is yes," Gill said.

Drs. Paul Curcillo and Stephanie King of Drexel University College of Medicine in Philadelphia developed a single-incision technique and Curcillo was the first to use the method to remove a woman's gallbladder through her bellybutton in May 2007. They've since used it for a number of different kinds of surgery.

Curcillo said the bellybutton procedure "will definitely make things better" for the donor. "A donor is one of the most altruistic people you'll ever meet. He's giving his kidney up. So anything you can do to make it better for that patient, they deserve it," he said.

Laparoscopic surgery revolutionized the operating room more than 15 years ago, replacing long incisions with small cuts and vastly reducing pain and recovery time. Researchers are now exploring ways to eliminate scars by putting instruments through the body's natural openings like the mouth, nose and vagina to perform surgery.

The method used by the Cleveland Clinic takes advantage of the belly button to avoid a visible scar. Gill said the procedure was approved by the clinic's internal review board as an extension of its laparoscopic surgical work. He has begun training other surgeons on the procedure. It is not used to transplant the kidney into the receiving patient.

Dr. Louis R. Kavoussi, head of the Arthur Smith Institute for Urology of the North Shore Long Island Jewish Health System in New York and the co-author of an editorial in the journal, said the method needs to be studied to determine if patients fare better. "The reality is that nobody knows if this is an advance other than cosmetic," said Kavoussi.

On Thursday, Scott Bolender, 39, of Washington Court House, received a kidney taken from his niece, Chanda Calentine, by way of her bellybutton.

"I'm just looking forward to getting out of bed," Bolender said in a bedside interview Wednesday.

Bolender, the married father of six children, has been unable to work because of Wagner's disease, an autoimmune disease that attacks the kidneys. He has been undergoing lifesaving dialysis since 2005.

Calentine, 30, of New York City, said she was thrilled to provide a kidney for her good-natured uncle and that she expects to do fine with a single remaining kidney.

She also said she was confident in the promise of a "nearly scar-free" post-surgical bellybutton but was prepared for the alternative. "A week ago I got a one-piece (bathing suit)," she said with a laugh.

The procedure involves making a three-quarter inch incision in the interior of the bellybutton and inserting a tube-like port with several round entry points for inserting a camera and other tools into the belly.

The belly is inflated with carbon dioxide to provide maneuvering room. The kidney is then freed from connecting tissue, wrapped in a plastic bag and removed through the navel when the blood supply is cut, shrinking the organ's fist-like size. The incision is expanded to about 1 1/2 inches to extract the kidney after the port is removed.

The procedure would not be appropriate for those who have had multiple major abdominal surgeries or who are obese, Gill said. Both conditions would limit the ability to look around the abdomen and move about instruments.

Kaster donated his kidney to his father, Phil Kaster, 61, of Canal Fulton, who was on dialysis for 10 months.

"When it's family like that, you wouldn't think twice," he said. "I'm glad I'm able to give somebody their life back."

Report

2008-06-25T23:07:00.002-05:00

It was a long day but not so very bad. The dr. said people with my statis usually get called in the second or third year. Only 8 vials of blood were taken, one EKG and X-ray. Just the riding and sitting wears me out. And of course, it was get up and go this morning. I just wish I could have a vacation from dialysis so I could catch up on some things. But that isn't possible, so I whine.

Monday the nurse practitioner told me to take the sensipar every other day. The dr. and nutritionist today decided that I shouldn't take it. They discussed halving it. I read on a website that it said do not halve it. They said it also says not to skip a day. So, everybody has an opinion. And the patient just does whatever they're told. Can we say yo-yo? Some day I may just get enough of all this.

~Later

Appointments, appointments...

2008-06-23T21:38:00.002-05:00

Dialysis is still going fine. I just get so tired of going. I have an appt. tomorrow at Vanderbilt for my 1 year checkup on the transplant list. They will do bloodwork (10 vials the last time I went), EKG and x-ray. Boring. Boring. Emily is coming along as driver. Bless her heart.

Another Dental Update!

2008-06-16T18:50:00.003-05:00

It's been a week since I posted and it's time for another dental appt. They had to send my lower denture back to the lab in Kansas I think. My teeth have been places I haven't. LOL! I was afraid I wouldn't be able to eat, but there is plenty I've been able to eat. Most all veggies can be smushed and eaten pretty well. I've come to realize how much we eat for entertainment. What I have missed the most is crunch! I can't wait to get me a big glass of ICE!!! Ya-hooooo!

Everything has gone real well at dialysis. I'm still holding my record of not having any bleeding episodes after dialysis since I've quit using clamps. Everything is pretty much the samo samo.

~Later

Dental Update!

2008-06-05T19:38:00.002-05:00

Hi all!
Emily took me today for my dental check up. Everything was pretty good except I told him one side was loose and didn't click in firmly. It was no big deal as it had come loose the day I got them, but just hadn't found a good time to go back what with all the other problems with dialysis, surgery, etc. It didn't hinder my eating in any way, so hey! Anyway, he said the housing was loose so he worked on it for a pretty good while. Spent two hours there (appts have never been this long but that was okay) and thought everything was fine. I got home and decided to see if I could tell what he had done. Took them out, and the housing stayed on the implant!!! Rats! So now, we have some more adventures to enjoy. O-be, Kay-be!

Ahhhh......rainy days and Mondays. . . .

2008-06-02T23:49:00.003-05:00

. . . Always get me down!!! It was quite disheartening to start the day out, especially with it being a Monday, with having to be stuck three times. They slice, and cut and sew and do all their stuff, but there is still going to be constant problems. Yes, I know that I just have to deal with it and take it as it comes. But, sometimes I just don't want to be a big girl. I want to whine, and whimper, and throw a tandrum, and kick and stomp and scream til I turn blue in the face. BIG SIGH! There. That feels much better now.

Memorial Day

2008-05-26T16:45:00.002-05:00

Dialysis doesn't take any holidays off except Christmas. We had our family get-together at Joe and Jessica's yesterday. We got a family photo which you can view in the "grandchildren" section. Dialysis went great today. Since I have quit using clamps I have not bled one time after dialysis! In fact, the site is usually ready to go after five minutes. After 5 minutes I take off any pressure, after 10 minutes I take off the tape and cotton ball. Then I watch it for another 5 minutes, put a bandaid over it and I'm good to go! And the bandaids stay clean! Why oh why don't they educate the nurses and patients in the possibility of alternative techniques?

2008-05-23T17:12:00.003-05:00

Another weekend and I'm looking forward to it. I had another near perfect day at dialysis. They have made an appt. for me with Dr. Martin to get the catheter out. I had hoped to get it out next Wed. but had to settle for the following Wed. It sometimes feels like it is pressing against something. I wonder if one has ever punctured anything? Oh well. I must exercise patience but I DON'T WANT TO!

2008-05-19T19:00:00.002-05:00

Another Monday come and gone. And would you believe it? Not one single iota of problems today. Everything went smooth as silk. I don't remember if I've posted it or not about me not using clamps any more. That whole first year, I was clamped and taped and bled, and with no avail. After deciding I didn't have much to lose, I started trying other stuff. Holding the site til the bleeding stopped and then watched carefully as I released the pressure to make sure it didn't start again. It did just fine. At first I was peeling the tape off as soon as I got home. Then it was using minimal taping. Now I leave with a bandaid. It has never started bleeding since I've been doing this, but I do watch it pretty carefully just so it doesn't decide to mess me up. I just think my veins and tissues are loose and can roll around a lot, but to do so is easy to dislodge any healing clot that has formed there. I will be so glad when I get this catheter out.

~Later

Friday again

2008-05-16T16:22:00.002-05:00

Here another weekend faces me, another week gone. Had to be stuck three times today. Couldn't get the top needle to work, even after jabbing it around to try and get it to work. I'm wondering about the little dr. that makes rounds. It's probably just me, but he's lacking in something. It could be a bedside manner. I went to Nashville to have the new access put in. I figured he was the one to release me to use it. But, this little dr. was just going to start using it himself because he thought it sounded okay. He was talking to the nurse more than me and I couldn't hear it all, but asked the nurse and she told me. I told her that when I had the other one done, the insurance people told me that I had to be released by the surgeon. She said if he asked about it I could just tell him why I had refused to use it. No problem. Today, he came in and saw I was using the new access and was all excited. Asked how long I'd been using it and I said 2 weeks. Welllll......., let's get this catheter out then. While I'm stuttering around, the nurse told him I'd been having trouble with the access. So that deterred him. It's not that I don't think he's qualified. He's basically very nice. He just seems to think I don't need to be consulted about what he's going to do. What should I do?

Too Many Choices

2008-05-15T22:48:00.003-05:00

My days just seem to run together. Going to dialysis every other day is like suspended animation. Church-dialysis-Tues.-dialysis-church-Thurs.-dialysis-Fri.-Sat.-church-Sun.-dialysis-repeat, repeat, repeat!

2008-05-12T22:02:00.003-05:00

Today didn't go so well. There was pain at the site just about the whole time. Finally it blew (infiltrated). I felt something on my arm and looked down to discover it was bleeding. Although I had an hour left on my time, they opted to take me off. Fortunately I did not have much excess fluid to begin with and I was almost at my dry weight already. It made a little knot and bruised some more. I can't help but be a little discouraged. I had hoped the new fistula was going to be the answer to the problems I've had. Looks like problems are just a fact whatever I do. This new arm sure is tender and more sensitive than my left one ever was. ouchie!

Any and all prayers gratefully accepted.

Saturday

2008-05-10T10:14:00.003-05:00

Yesterday I had a glitch at dialysis. The needle was sticking the back side of the vein and hurting. It's kind of knotty where it was and sore. And I was sore all over (every joint) from my previous day of galavanting and shopping (woo whoooo!), so it was a little rough lying there. I tried lying pretty far back but couldn't find a good place to lay. Toward the end I asked Mark how much time I had left and was told 16 minutes. I said, I've got to get up. He finished what he was doing and then came over and seemed to be getting ready to take me off. I said, what are you doing? "Taking you off." "But, my time isn't up." You're getting the gist of it here. He thought I was wanting off, and I was just wanting to sit up! LOL I told him that when I wanted to get off early he could know that something serious was wrong. He thought it unusual for me, but they never know. Some people do get off early sometimes. They had filled out my form and everything. They have to do that if you don't complete your treatment. Liability and such.

I have all kinds of little dark veins showing up on the inside of my arm. I told Mark yesterday that my arm looks like a Texas roadmap. He showed me his arm and said you could see his, too, (but they aren't as prominent). So I showed him mine again and said, yeah, but you don't have an interstate. (the scar) He admitted that no, he didn't have an interstate.

~Later

Thursday

2008-05-07T11:38:00.002-05:00

Here I am again! Just got home from dialysis. I have used my new fistula twice this week and so far everything is fine. No bleeding, and hardly any bruising at all. Just achy and sore from laying there, and after the trip to the dr. yesterday which always makes me sore just riding. When they sat me up my heart did the little flutter thing but has quit very quickly. Yesterday it lasted until the late afternoon. And always, fatigue. I went in at 7:00 this morning and got through early. They call me when they have a chair available early since I live so close. I'm very thankful that the center is so close to our home. When I left, a lady who was through at twenty minutes til 10:00 was still waiting for her public transportation at 11:15, and she has a very long ride to another county to get home. That's it for today. I think I see a nap in my near future. ~Later

Home Again

2008-05-05T13:57:00.003-05:00

I'm home from my first fistula use in my right arm. All went well. I used no clamps but applied pressure myself as I did in the left arm. And minimal taping. So far, so good. Thanks for any prayers you've sent my way. Now I have to learn just how much I can use my right arm and how soon after treatment. I have graduation announcements that I need to finish this afternoon. Wonder if my dear hubby would like to learn to use the corner punch??

I did have some minor heart palpitations during treatment, but I don't know if that was because I didn't eat breakfast this morning, if I was nervous (didn't think so), or if using the fistula with the catheter still in place, or just what. I did tell the nurse and she didn't get excited about it, so I'm taking a wait and see next time attitude.

~Later

Monday

2008-05-05T09:05:00.002-05:00

Monday's are not my favorite day, but I guess it's as good a day as any to start the week. LOL I start using my new fistula today. I am not looking forward to it but I'm resolved. I will use my numbing cream until I'm comfortable with it again. Before I started using the perma-cath I was comfortable with the needles and didn't use anything. That was six-seven weeks ago. I'm sure it's like riding a bicycle. You just get back on. Prayers are appreciated. ~Later

Dr. Appt.

2008-05-02T12:06:00.003-05:00

Wednesday I had my 6 week checkup appt. with the vascular surgeon who did my second fistula. He was pleased with the access and said it was ready to use. They will use it a couple of weeks to make sure everything is okay, and then I can call for an appt. and he will remove my perma-cath. I will be glad to be rid of that thing!

I asked the doctor if he would explain to me exactly what he did to my arm. And he did. There is a large vein that runs underneath the arm. He exposed the vein and then retunneled it (I don't have the details of this) up and along the top of the arm and then connected it to an artery near the inside of the elbow. I therefore have a long access area. A nurse at the clinic was impressed with it. I think the surgeon did a good job.

I told them at the clinic today that they could start sticking me again on Monday. I needed to continue my work on Sara's graduation invitations today, so I didn't want to start it today. That's it for today. ~Later

National Kidney Foundation Kidney Walk

2008-04-29T11:29:00.032-05:00

A New Day Dawning . . .

2008-04-22T14:05:00.002-05:00

Well, glory! Carey Barr (wife and nurse practitioner of Dr. Barr)was doing rounds at the center yesterday and I showed her my arm. She immediately ordered an IV dose of antibiotics and called in a prescription for 3X a day. By last night I was feeling like a human (almost). One of those cases where you don't realize how bad you were until you get better. My arm is still quite sore and swollen but I can tell a big difference. Even in my head, throat and chest as well as my arm. I am weary to death of this constant difficulties. I am so ready for something different. But I know that challenges are going to be the order of the day from now on.

~Later

A Bad Week

2008-04-16T17:43:00.007-05:00

I hope this is a week I will never again remember. It started Monday morning. It was really rainy, bad weather and I woke up around 5:30 in mega pain all over! Okay, so I immediately try to figure out what is causing this. Get up, take tylenol, get ready for church. After church go to the Brass Lantern to eat. That takes another 2+ hours sitting in awful chairs. Then semi activity until church time again. Two more hours of not hardly being able to hold my head up. So, was it the sitting, was it the weather and fibromyalgia, or all of the above. Went to dialysis, hurt some more, cramped some, just misery. And on top of everything else they gave me my fourth (I think) shot for the vaccine series for . . . . .shucks, . . . . can't think of it. Wait . . . . . .YES! Hepatitis B? C? Whatever. But because I am a dialysis patient I get double the amount that regular people do. And we're talking some serious pain, folks! And serious pain for the next two days. I could continue to whine, but I guess it wouldn't accomplish anything. Every joint hurts and radiates outward to the rest of the body. My head is pounding big time. Goose bumps everywhere. Not chills, just goose bumps. If the pain would confine itself to one or two places at a time I could handle it, but not THE WHOLE BODY!!! All I can do is lay there and plan my funeral, or non-funeral as the case may be. Enough? OK. ~Later

I can hardly stand the excitement!

2008-04-01T01:11:00.003-05:00

I haven't kept this up like I should, but I've been kinda miserable. Today (Tues.) marks two weeks since I had surgery on my arm, and all that went with it. The incision has healed well, but my arm is still very sore. It feels like pins and needles inside it sometimes. Can't use the arm much and if I do it swells something awful. I'm getting cabin fever, can't go anywhere, can't do anything, can't drive. I just KNOW that Spring has to be around the corner. I'm watching for it!
~Later

Good News - Bad News!

2008-03-26T13:19:00.001-05:00

The bad news first: I could not go to sleep last night. Went to bed around 11:00 PM and finally got up again around 1:30. I finally went back to bed and went to sleep around 3:00 AM. That just happens sometimes.

Now for the good news! Yesterday was pretty rough pain-wise. But after finally going to sleep, I slept soundly until I 'had to' get up, and for the first time, I awoke without immediately thinking, 'I've got to get some pain medicine.' I was not hurting. True it is still swollen, and still sore, and hurting a little now (yes, I'll take something, just had to tell you first!) but it is a WONDERFUL sign. Thank you all for praying.

Luv U All! ~Later!

Waiting. . . . .

2008-03-25T17:21:00.002-05:00

Right now I'm sitting here waiting for a call back to try and learn what I need to do for pain now that I'm running out of what they prescribed. Switch to tylenol? New prescription? Office visit? What can I do for this swelling? I think with all I've experienced, not being able to use my right hand/arm and constant pain is the worse yet. All prayers gratefully appreciated!

For a frame of reference I did some measuring. Right arm below the elbow is 3 1/8"
larger than the left. Right arm above the elbow is 2 1/4" larger than the left. Mid-forearm is 2 inches larger on the right. Wrist is 2 1/4" larger on the right.

Below is a photo that was used as a pattern for installing my fistula!! Great, huh?

One week after . . . .

2008-03-25T16:30:00.010-05:00

This is what it looks like now, one week later. The bruising is gone, but the swelling remains and it still hurts like the dickens! With the first fistula I took one pain pill, that's it. I'm still taking them a week later with this one and am still in much pain. One difference is that this surgeon said he went much deeper to locate a big vein. The first one that was done by another surgeon was not a large vein. That leads me to believe that all of my problems probably stemmed from that fact. When the first one was done, I was suppose to be at the hospital at 11:00 AM and surgery was for 11:30. At 6:00 PM the surgeon happened by the nurses desk (I was right in front of it) and saw his name on my door. "Is that my patient?" "I forgot about her." So what was suppose to be an outpatient surgery turned into an overnight because it was about 9:00 PM when I returned to my room, and they didn't want to dismiss me that late. So the whole thing makes me wonder: It was the end of his day so was he tired? Or maybe had plans? Was he in a hurry? Did he take the first vein he came to? They did a venogram the week before to map out the best veins, which I was told would be in my lower arm. Then he told me after surgery that the best vein was in my upper arm. All the incisions were in the upper arm. I'm not saying he lied. I'm just saying it makes me wonder, and how are we suppose to know all the right answers? Or even the right questions. I guess I'm medically challenged and I just say 'here I am, just do whatever you want to do to me.' Actually, I try to trust and believe that they know what they're doing. And I should know better than that. I think every surgery patient should have a personal liason to walk them through it and be there to ask the right questions for the patient. Handing out pages and pages of consent forms and lots of gobble-de-gook should NOT be used as a catch all for the hospital that the patient has been informed and understands everything, and are taking their own chances. All it does is cancels their liability.

This is a picture of my first fistula with some impressive stitchwork.

The Day After . . . . . . .

2008-03-19T13:42:00.007-05:00

Okay, here's the good, the bad, and the ugly. Not a pretty picture, I know, but I tell it like it "is". Got to Saint Thomas on time, got checked in pretty easily as we pre-registered before we left last week. The surgery went fine - as far as I know. I was asleep, so what could I know? I'm always amazed when I wake up in recovery to know that it has been erased from my memory. They gave me a pretty strong pain reliever on an empty stomach and that was quite interesting. I was awake and asleep at the same time. Now, don't try to convince me that isn't possible for I lived it! I won't try to explain it, just trust me.

The arm is pretty swollen and bruised, and sore. Each day will bring improvement I'm sure. It was rough getting up and going to dialysis, but I didn't take anything with me except my earphones for the TV, and tried to sleep. I didn't get too far with that. My feet were cramping before my time was up. Then I found out that they had put me on for 30 extra minutes. Kids, this is why it's important to learn your math, okay?!! 180 minutes is 3 hours, not 3 hours and a half! This has happened several times. I'm gonna have to start checking what they put me on for.. I sat there with cramping feet for 30 minutes that was totally unnecessary. Whine, whine!
~Later

Monday, Mar. 17, 2008

2008-03-17T13:37:00.003-05:00

Since I have been using the perma-cath for dialysis, I've start cramping an hour before time to come off. They do what they can, cut me back in the amount of fluid they are pulling off, and usually have to just quit pulling, occasionally give me some back. But, so far, it hasn't helped. I'm either going to have to change my dry weight, or quit drinking so much fluid and watch the eating of salty foods. Cramping in my feet, ankles, sometimes my hand, and sometimes the calf of my leg is the pits. Guess I need to get serious here.

I've got to be at Saint Thomas at 6:00 AM in the morning for surgery. I hope I get out just in time to be somewhat rested and "drugged" enough to be able to go to a meeting in Columbia for the Kidney Walk to get my information. I've got a project that I need to work on tonight for a display at the center. I know they would not feel bad toward me if I have to give it back without doing it, but it will sure make 'me' feel bad about it.

Hope you are having a good day! ~Later

2008-03-16T14:59:00.004-05:00

I found the following information on the web and found it quite interesting. I've asked the doctor if there was anything I could have done to prevent the access from clotting. They said 'no'. I hope to talk to the new vascular surgeon about this and hopefully get some answers. Also, I have this nagging dissatisfaction with the information I've been given about the old access. They do nothing about the clots that have caused this blockage. They say they can't go anywhere or be a problem. That doesn't make sense to me. I will keep searching for answers.

What is access clotting?

Answer: “Clotting” of the dialysis access is a common problem for the hemodialysis patient. Also known as thrombosis, clotting is actually the conversion of the liquid blood into a solid plug in the dialysis access. This plug stops the blood from moving freely through the access. Although clotting of blood when it is outside the body is normal and protects us from excessive bleeding when we are injured, clotting of blood inside a blood vessel is abnormal and is usually the result of sluggish blood flow through the vessel. There are a number of things that can cause sluggish access blood flow including poor blood flow into the access, narrowing in the outflow of the access, compression of the access and blood pressure drops.
Poor flow into the access is sometimes a technical problem with the original connection of the artery to the vein (on a fistula) or of the artery to the graft material (on an AV graft) at the time of surgery. Sometimes the blood flow into the access is poor because of diseased arteries due to diabetes, high blood pressure, older age or history of smoking. Narrowing of the outflow of the access occurs when scar tissue forms at the connection of the graft material and the vein. Sometimes the narrowing may already be present in the deeper veins at the time of the surgical placement of the dialysis access, especially if a patient previously had a dialysis catheter in the deeper vein, such as a subclavian vein.
Compression of the access may be accidental if, for example, a patient sleeps on the arm with the access or the patient is under anesthesia for a surgical procedure and the arm with the access is not positioned properly or if a blood pressure is taken in the dialysis access arm. Compression of the access may be intentional in an effort to stop prolonged bleeding from the access site after the needles are withdrawn following a dialysis procedure. In that setting, care must be taken to avoid excessive or prolonged pressure, especially if a mechanical compression device is used. Blood pressure drops occur when too much fluid is removed during dialysis. This may happen if a person gains muscle or fat weight and needs a dry weight increase. These blood pressure drops may also occur when a large volume of fluid is removed at a single dialysis treatment. If the blood pressure falls while the patient is still on dialysis, lying back helps to preserve flow through the access and administration of fluid will help raise blood pressure back to normal. Sometimes, patients experience blood pressure drops after the dialysis treatment is finished and they have already gone home. If this occurs, the patient should also lie back to help preserve flow through the access and take fluids by mouth to help raise the blood pressure to normal.
There are several things that a patient can do to help prevent clotting of the dialysis access. First, patients should attend all dialysis treatments and undergo routine monitoring of the blood flow through the dialysis access. If the flow decreases, a test should be performed to determine the cause of the problem. Problems with the inflow to the fistula or graft can be referred to the surgeon for surgical repair. Problems with the outflow of the access may be able to be corrected in the radiology department with “ballooning” or angioplasty of the narrowed section of the vein.
In addition, patients should be careful of the amount of fluid consumed and weight gained between dialysis treatments. Controlling the dietary salt intake can help to decrease thirst and prevent large fluid gains. Patients should also be aware of blood pressure decreases on dialysis and report them to their nephrologist. The nephrologist may increase the dry weight or re-adjust blood pressure medications to help to prevent future blood pressure drops.
As every hemodialysis patient knows, their vascular access it literally their “lifeline” which must be treated with the utmost care to keep it functioning properly. Clotting of a fistula or graft is usually due to an identifiable reason, and treatment of a clotted access should include, in addition to removing the clot, an investigation and correction of that reason, if possible, so that the access does not soon clot again. Unfortunately, some clotted accesses cannot be fixed, but in such cases the nephrology practitioner, surgeon and patient should try to learn the causes of the clotted access before planning any new access.

Well, here we are . . . . . !

2008-03-12T22:20:00.007-05:00

I got an appt. for 11:30 Monday. Went to the Vascular Clinic and they de-clogged my access all the way up to the shoulder! It gave him some trouble but he hoped it would work fine. My EKG did a funny little thing, changed rythmes and he wanted me to get it looked at. Said it probably wasn't anyting, and that it might be because I hadn't been dialyzed. It was too late for me to go home and then get dialized, so he called over to Saint Thomas Hospital and got me a place. So I went there to be dialized. While they were trying to get me hooked up, the access was re-clotting! So they did an emergency femoral catheter that is placed into blood vessels in the groin. It is used only when there is no other means of vascular access available and dialysis must be done immediately. Femoral catheters are only placed while the patient is in the hospital, and the catheter is typically only used once or twice at the most. *The patient must remain in bed while the catheter is in place.* (Really? No one told me to stay in bed except when they took it out!) I went walking and everything.

Tuesday morning they took me to surgery and did the subclavian catheter which they called a perma-cath. A subclavian catheter is a means of dialyzing the blood immediately after the catheter has been placed ('installed'). It is placed in the subclavian vein which lies just below the collar bone. It may be used for several weeks until a permanent vascular access is available. Subclavian catheters are covered with a dressing, which is changed with each dialysis treatment. Care must be taken to keep the catheter dressing secure, the ends sealed against the skin and the caps and clamps in place on the catheter. So, at the moment I had three accesses - left arm, right neck, and left femoral access, plus an IV port in my right arm. I told the nurse to not let them know that my right leg was free, or they would be in there wanting to stick needles in it! Tuesday afternoon they took me to have an ultra sound run on both arms. One, to see if the original fistula could still be used and if not, what were the prospects from the right arm. Tues. Mar. 18 I have to be at Saint Thomas Hospital at 6:00 AM to have a fistula installed in my right arm! I'm really disappointed because a fistula is suppose to be the cadillac of accesses. It's unusual for it to last less than two years, actually less than a year of use. If they are going to give out this fast it seems I will quickly run out of options.

Boy! Have things changed since I was last in a hospital! First of all, they had room service. You had to order all your meals. Well, I didn't know that. I couldn't eat or drink after midnight Sunday night, de-clotting, and then dialysis, etc. I did get a pack of crackers and water. After I was settled in my room that night I asked about supper. That's when I learned I had to order room service. It was close to closing time but I called and the girl said go ahead and order and she would see what she could do. I waited and waited. Finally the floor nurse brought me some raisin bran and jello. I have to say it was delicious. I was starving. I was surprised by some GOOD company Tues. night: Kathy, Jess and Jennifer and Corey and Emily. The next morning room service called and asked if I would like some breakfast. I said, "I can't eat!" and it was off to surgery. When I got through with the surgery, I slept a lot so I didn't get to eat until late, but I did get a delish pizza!I also got breakfast this morning, but just barely. No lunch , so I skipped supper too. It was time to get out of there. I had to do pre-registering before I left so that took forever and a day sitting in the waiting area. But, all things eventually come to an end and so did this. Goodbye, dear hospital.! I will see you again next week. Rats!

I've used up all my minutes on my cell phone so I've got to get more. We stopped at an all time favorite, Chick-fil-A! Yum! We finally got home around 8:30, my body guard waiting in front of the house. It was SO good to be home in my humble abode with my own personal mess. Ahhhhhh.......life is good!

Appt.

2008-03-10T08:17:00.002-05:00

I have an appt. at 11:30 in Nashville to have my access "unclotted", maybe that's de-clotted. Anyway, I'm on my way. Will fill in the details as soon as I'm able.
~Later. ~Ann

Me again . . . .

2008-03-08T20:02:00.002-06:00

I did go to the clinic. My access is clotted. I asked them how to change doctors (vascular, not nephrologist) and they asked if I ever went to Nashville or if I was interested in going to Nashville. There is a vascular lab there. I told them I was very interested. It won't be open til Monday morning though. They will try calling for me Monday morning as soon as it opens at 7:00 and let me know. I'm not going to eat or drink anything until I hear from them. I asked and they said there was no danger of these clots breaking lose or anything before Monday, so I'm okay with it. Pray that I can get in Monday morning and that it will be a good experience, and everything will be taken care of.

~Later

Saturday Catch Up

2008-03-08T10:14:00.004-06:00

I did indeed go to the Dr. Thurs. and sat in the waiting room for 2+ hours before I'm taken into the examining room. Told him what had been happening. He feels it with his hand and says there's a good pulse above and below the spot. Said they needed to use the space above the spot. I said that's what they did (duh) when they stuck me for the fourth time! He set me up for a 'test' on Tuesday to see what is going on. (It took the receptionist 15 min. to make the lab understand what kind of test they wanted. The couldn't find the right name on their list.) Pardon me for my attitude, but it just didn't seem to concern him very much. And maybe it doesn't. I'm sure he sees this stuff every day. I'm not an alarmist, but I don't want to play around if something needs to be done. Anyway, I go to dialysis Friday and everything goes well. But, this morning I wake up and feel my arm (you're suppose to check it every day) and I feel no pulse except a small one in the bend of my elbow. If you've ever felt, or even seen for that matter, a dialysis access you know that you can see it pumping a block away. Sooo, it's Saturday, which means trying to get ahold of someone, and a bunch of run-around. I think I will go to the center (it's only about 2 blocks from my house) and let them check it out and they might be able to get something going with the drs. I'm just not sure I want to see the same dr. who did my surgery and I saw Thurs. I'm not real confident with him.
Prayers gratefully accepted. ~Later

A Record Breaking Day!

2008-03-05T22:12:00.001-06:00

Yep, today we broke all records.............for sticks. I came home with four holes in my arm! There is one place in my arm that would absolutely not give them any blood. I have an appt. with the vascular surgeon tomorrow to see if he can de-clot the vein or some such procedure. I am getting so tired of this and having one mega pity party for myself. Somebody pass the dip. I'm tired. I'm depressed. And I just want to scream...... But I just don't have the energy. Yes, I know all the right things to tell myself, but right now I don't want to put on my big girl pants, so leave me alone, okay?

~Later

A Good Day

2008-02-27T21:13:00.002-06:00

Well, would you believe it? Not one pain today. Not one drop today. What is the deal with this thing??? Whatever it is, today you can color me thankful!

A Day of All Days! (PG-13 ....or maybe R for some, and you KNOW who you are.)

2008-02-25T14:04:00.004-06:00

What a day I had today! Where do I begin? First of all, It's 2:03 PM and I just got home. That will say something to those who know. I'm usually home about 1:00. I don't remember if I've told you about them having some trouble getting the upper needle in the vein because of scar tissue. They can feel the vein, and think it's right there, but when they go in, no success. The same today. And the access kept . . . uhhhhhh. . . leaking. And then hurting. Finally, with about an hour left on my time, we decided to re-stick me. So I had three needles in my arm. I didn't know they would keep them all in to the end, until today. It finally did okay until time to come off. More bleeding. I bet they had to change pads 10-12 times throughout the whole process. Anyway, I'm home with three bandaids. Hoorah! It had to be really trying for the nurses, especially since state inspectors walked in today!!! Rats! But, they performed with their usual excellent care.

Sigh! ~Later

Brittle Nails

2008-02-23T22:25:00.006-06:00

One of the things I've noticed the most since being on dialysis is the health of my fingernails. I've always had VERY hard nails and had no problem growing nice nails. But since the start of dialysis they have progressively gotten brittle, chipped, flaked, and in all around bad condition. I've asked everyone I know to ask and the only inkling of information was that they would check my thyroid function. I'm not sure what that has to do with the nails, but I finally came across a PKD site that confirmed my suspicions that it is related to the PKD.

I would also like to know what to do about the loss of my hair. As with my nails, I've always had very thick, healthy hair, but it is getting very thin in front and top. Would appreciate any info anyone has concerning this.

Some good, some bad

2008-02-22T15:21:00.002-06:00

Today marks about two weeks since I've been holding my access after dialysis. I did bleed some today, but not AFTER dialysis. It was during dialysis after I repositioned myself in the chair and used the wrong arm. Although the site did hurt today and I expected it to possibly bleed. During dialysis my blood pressure dropped and I felt like I might pass out. They adjusted the machine and we got okay though. Sigh!

~Later

Another good day!

2008-02-20T13:47:00.003-06:00

Today was another non-bleeding day at dialysis, except for when the nurse forgot to shut off the clip before starting me on the machine. :) They took labs today, several vials. I'm afraid that I will have to go back to 3 hours as the labs have not stayed steady. And I think I'm gaining weight. I need to cut back. But, they tell me I must eat to keep my albumin up. I've just been trying to follow directions. Yeah, that's my story and I'm sticking to it.

~Later

2008-02-19T12:39:00.000-06:00

2008-02-16T22:36:00.000-06:00

My computer completely died about a month ago and I am finally back in cyberspace. Hoorah! Does anyone remember me? I feel totally alienated! I have forgotten all my passwords, also! Rats

Some interesting things have been going on at dialysis! I've had trouble with bleeding afterwards, pain during and after, and other such wonderful events. The neph finally sent me to have a venous whatever to map out my access to see if stenosis was present (narrowing of the artery). The test was negative. After the test a nurse applied pressure, but it was oh, so gentle, and felt great. I talked with a nurse at the next dialysis session who was filling in for one of the regulars. She said that some professionals felt that the clamps were not good for you. Oh, really?! No one had ever mentioned that to me! So I've started experimenting and these are my results. Holding the sites myself with minimal pressure, for a minimal amount of time works for me! It works better if I take one needle out and hold it for about 5 min. before taking the second one out. I gently remove the pressure and watch it intently, in case of bleeding. So far, so good.

Today my favorite nurse was there. (All the nurses are great!) His technique just works best for me - one piece of tape and one bandaid per needle during dialysis. I told him I wanted to leave with just bandaids today instead of lots of tape, gauze and cotton balls. And that is exactly what I did. And it worked! I usually come home and take all the tape off and apply bandaids. I live very close to the clinic so there isn't that much extra time leaving the tape on. Some are of the opinion that the more tape and more pressure, the better it works. But, I've never been a partaker of "the norm." I think the problem is because my arms are very, how do I put this delicately, uhhhhh....., flabby. The veins tend to roll, and any pressure tends to undo what it has done.

So, I would suggest for anyone who is experiencing problems to not be afraid to try and experiment with new ideas after exhausting the "norm". I have been on dialysis since May 7, 2007, almost a year. I've asked every analytical question I could think of to try and decide what was going on. I listened to the professionals, and I added my thoughts. And now it is paying off. I hope it is a permanent good thing. If not, I'm still taking it one day at a time.

~Later

Thursday's Post

2008-02-16T21:45:00.003-06:00

THIS POST AND THE ONE BEFORE WILL BE OUT OF SYNC. THE REASON IS THAT A COMMENT WAS POSTED (SPAM) THAT HAD NOTHING TO DO WITH THIS BLOG'S TOPIC, NEITHER WAS IT POSTED BY ANYONE I KNEW. THE ONLY WAY I COULD REMOVE IT WAS TO DELETE THE WHOLE POST. I'M SORRY FOR ANY CONFUSION THIS MAY CAUSE. I HOPE YOU CAN STILL UNDERSTAND WHAT I'M TRYING TO SAY IN THE INFORMATION.

This first illustration (BELOW)shows the catherter which is a temporary solution to an emergency situation.

The arm access is an AV fistula. An AV fistula is the gold standard for vascular access for hemodialysis and is associated with the lowest failure and complication rates when compared with other forms of vascular access.

An AV fistula requires advance planning because a fistula takes a while after surgery to develop But a properly formed fistula is less likely than other kinds of vascular accesses to form clots or become infected. Also, fistulas tend to last many years, longer than any other kind of vascular access.

A surgeon creates an AV fistula by connecting an artery directly to a vein, usually in the forearm. Connecting the artery to the vein causes more blood to flow into the vein. As a result, the vein grows larger and stronger, making repeated insertions for hemodialysis treatments easier.

Arteriovenous Graft
If you have small veins that won't develop properly into a fistula, you can get a vascular access that uses a synthetic tube implanted under the skin in your arm. The tube becomes an artificial vein that can be used repeatedly for needle placement and blood access during hemodialysis. A graft doesn't need to develop as a fistula does, so it can be used sooner after placement, often within 2 or 3 weeks.

Compared with fistulas, grafts tend to have more problems with clotting or infection and need replacement sooner, but a well-cared-for graft can last for several years.

There are other options that I won't explore here. There are plenty of sites to find all you might want to know. I hope this might clear up any confusion you might have about dialysis.

A little education..............

2008-02-15T15:23:00.018-06:00

A catheter access
This first illustration shows the catherter which is a temporary solution to an emergency situation.

The AV fistula access

The arm access is an AV fistula. An AV fistula is the gold standard for vascular access for hemodialysis and is associated with the lowest failure and complication rates when compared with other forms of vascular access.

I have been amazed at the lack of information by the general public about dialysis. True, I am extra curious about things and never cease to love learning. I like to know what things are and how things work and why. True, there are some things that I care absolutely nothing about, like most politics or the price of eggs in China. But things that are an everyday part of life, I usually find very interesting, at least to the degree that I have a pretty good understanding of it.

I have yet to come across anyone who know anything about dialysis. Most people associate dialysis with the external access that is used in emergency situations. So, here is my feeble attempt at educating the world, as if the entire world will pass through the portals of my humble blog.

The above picture is the kind of access I have except that it is in my upper arm. It is called an AV fistula. A wealth of clinical evidence confirms that the arteriovenous (AV) fistula is the safest and most effective form of vascular access in hemodialysis. Yet nationwide, only 30% of patients with end-stage renal disease (ESRD) receive a fistula as their permanent access for hemodialysis. “A fistula is most commonly created using the radial artery and vein, though it can also be created in the upper arm using the brachial artery.

An AV fistula requires advance planning because a fistula takes a while after surgery to develop But a properly formed fistula is less likely than other kinds of vascular accesses to form clots or become infected. Also, fistulas tend to last many years, longer than any other kind of vascular access.

A surgeon creates an AV fistula by connecting an artery directly to a vein, usually in the forearm. Connecting the artery to the vein causes more blood to flow into the vein. As a result, the vein grows larger and stronger, making repeated insertions for hemodialysis treatments easier.

Arteriovenous Graft
If you have small veins that won't develop properly into a fistula, you can get a vascular access that uses a synthetic tube implanted under the skin in your arm. The tube becomes an artificial vein that can be used repeatedly for needle placement and blood access during hemodialysis. A graft doesn't need to develop as a fistula does, so it can be used sooner after placement, often within 2 or 3 weeks.

Compared with fistulas, grafts tend to have more problems with clotting or infection and need replacement sooner, but a well-cared-for graft can last for several years.

There are other options that I won't explore here. There are plenty of sites to find all you might want to know. I hope this might clear up any confusion you might have about dialysis.

Wed. Jan 9

2008-01-09T15:34:00.000-06:00

Had a very unusual day at dialysis Monday. My arm hurt and was sore as usual, and when they took me off I called William, told him I was ready, and when I hung up I started bleeding. So that was 15 more min. with the clamps. The second time they took me off I started bleeding again. Then again. It was 2:00 before I got home. The fourth time they took me off the clamps I made it but was very suspect, and didn't trust, but all was well after that.

Never a dull moment, huh?
~Later

The Pain of the Holidays

2007-12-24T10:51:00.000-06:00

I'm still in a good bit of pain. No strength in my muscles, therefore I'm shaky. Got to keep going. Elizabeth and Janie came and helped out Satuday, and Elizabeth came again Sunday afternoon. My living room looks wonderful, some of the presents are wrapped, But still have cleaning, cooking and heaven knows what else. My lower back, hips, knees, shoulders, head, legs, and feet all hurt! Doesn't leave much out, does it?

On the upside, dialysis went really good yesterday. I think we've figured out what is causing some of the bleeding. Because the center closes on Christmas, everything gets re-scheduled. Instead of Monday, I went Sunday. I swapped times with someone so I wouldn't miss church. I got up at 5:00 AM so I could get to dialysis at 6:00 and be through in time to attend. The choir was scheduled to sing their Christmas musical song, O Holy Night, where Emily sang the lead solo. A substantial portion of the choir was absent so the leader thought it best not to sing it as it's such a difficult song. Oh well, the best laid plans....... I did, however, get to enjoy Emily's solo, "One King", at our candlelight service Sunday night. It was beautiful as always.

Well, I must attack my day. ~Later

Wednesday dialysis

2007-12-19T14:46:00.000-06:00

I have been really sore for the past week or so; hips, neck, legs, everywhere. There is a reason for that, of course, and it was well worth it all. Friday after I finished with dialysis (I went in at 6:00 AM. argh!) When I got through and packed, Kathy and Corey drove me to Columbia to meet up with Emily who had to take a final that morning. I had first planned to drive myself, but since I've been bleeding fairly often after dialysis, I thought it might not be very prudent to do so. It worked out well. We had lunch at the Siberian Internet Cafe which was a really neat place. *** I suddenly realize this is turning into more journaling than just medical but I'm on a roll so I'm going for it.

Kathy and Corey drove Emily's car back home and Emily and I took off, headed for Crossville. We always have fun whatever we do and this was no exception. By the time we got checked in and made sure we could find the Play House without any trouble it was dark and time for nourishment, which we took care of at Ruby Tuesday's. We were pretty tired but couldn't waste a perfectly good night, so we found the cinema and bought tickets for Alvin and the Chipmunks! A really cute movie. We had about an hour to kill so we went to K-Mart close by as we don't get to go there much. I was hoping to find just all kinds of good stuff, and they certainly had the "stuff" but none that fit my needs for Christmas. After the movie Emily went for a swim in their indoor pool. I life-guarded. She could have drowned if I hadn't. heehee!

Saturday morning we packed up and checked out and headed to Cracker Barrel for breakfast. By the time we finished, looked around and left it was about an hour before our 2:30 PM show. So we just parked in the parking lot and talked. We do some of our best talking in parking lots, y'all!

We saw the stage production of "Oliver" and it was one of the best I've seen. And learned that there are some very intersting shows coming in the near future. Beauty and the Beast in coming again. We saw it a year or so ago and it was so great! I can't remember what time we got out, it was getting dusky dark when we headed for home. We weren't ready to give it up yet, so we got directions for an outlet mall in Mount Juliet. As we were approaching the area we spotted an Olive Garden Restaurant!!! omigosh!!! It was a sign! So we stopped. But, it was Saturday night and the place was packed. They said there was an hour wait, but we were not to be put off. We took our little signal light and went shopping for a few minutes. We got back and dined and relaxed and it was fabulous! ahhhhh! Then we were ready to shop some more. Not too long though. We had to get home, darn it! And it rained a lot and was very windy, which made for a difficult drive. Therefore, part of the reason for this post and why I am sore. Ha Ha Thought I'd forgotten, didn't you? Then there was the usual sitting 4 hours at church Sunday AM and PM, the meal sitting (I hate folding chairs), and busy afternoon making finger foods, playing with grandchildren, etc. So, Mondays are always a little rough, but I don't expect too much and just take it kind of easy at dialysis. It went fine. I even had a visitor which is a super plus at dialysis! Then, when they took me off, after clamp time, I stood up and proceeded to create a major crime scene! Rats! But everything is fine now. Thus, my adventures for the past weekend! Whew!

That's all for now! ~Later

Interesting Day!

2007-12-10T22:16:00.000-06:00

It was a rough day at dialysis today. It went normally for most of the time but toward the end I started feeling very strangely which signals that my blood pressure has taken a nose dive. They got that straightened out and then my feet, ankle and calves started cramping big time. They have cramped before but not like this. It just wasn't letting up. It lasted long enough that I was getting a little sick. I only had about 5 minutes left on the machine so they took me off. It was still a few minutes before I could stand up. Two kilos of fluid removal is about my limit. I overdid it with the salt and other stuff over the weekend and my weight gain was a little high. Not real bad, but I guess that is a relative term. The effects were high so that is what counts. I was pretty wiped out.

Educational Posts Coming!

2007-12-03T15:34:00.000-06:00

I'm putting together information here that relates to my experience with PKD and dialysis. The above photo is a dialysis chair and dialysis unit. This is very similar to where I go except we don't have dividing curtains between units. There are about 10 chairs at our center and they run three shifts.

Guess I Need to Be Kept Humble!

2007-12-03T14:26:00.000-06:00

I didn't write about the rest of my excitement Friday at dialysis. I was feeling really chipper after the Dr. gave me the additional 15 minutes, so when my time was up and they had the clamps on, I got up and put my pillows away, zipped 'em up, etc. I knew better than to be moving around doing stuff before my 15 min. clamp time. Made it fine until I got out to the car and started to put my stuff in the trunk, and then Old Faithful gushed forth. You have to immediately put pressure on it, which I did and then went back in for another 15 min. clamp on that particular site. Later when Emily came by the house, she came in and said, "What happened? It looks like a crime scene out there on your bumper!" Sure enough, I had dripped onto the bumper. Fine. I cleaned it up.

Today I made sure I didn't move for 15 min. with the clamps. But my access hurt anyway, but I thought it was no big deal. I got packed up without using my left arm, went to the lobby and called William and said I was ready. Hung up. Stood up....and proceeded to create a major crime scene in the lobby! Don't know what is going on with that, but experience is the best teacher. Any kind of pain or discomfort should always be addressed immediately! Evidently, the clamps were not positioned "just right" so the access could heal itself over. How many times will it take before I learn not to take anything for granted? I think I might remember from now on.

Noteworthy News!

2007-11-30T13:56:00.000-06:00

I am so excited! Guess what happened today?!!! The nephrologist did rounds today. I told him I had something for him. I've been saving this huge (fake) $100 bill. I told him I was prepared to pay him BIG Bucks for 15 more minutes off my time. In May when I started dialysis, I was on for four hours. Since that time my labs have been consistently good and I have had four 15 minute reductions and was at 3 hours for treatment. I was told that was about as low as I could expect. Today my time was reduced again and Monday I start at 2 hr. 45 min.!! I am so excited! Of course, if my lab results go down..... or up....or whatever they aren't suppose to do, he'll have to put me back at 3 hours, but I'm counting on them not going anywhere. Anyway, I'm only the third person here that has a time that low. Thank you, Jesus!!!

Oh, did I tell you I'm excited??? heehee

Another Week..............

2007-11-20T09:36:00.000-06:00

has uneventfully flowed into the past. Dialysis seems to have settled into a mundane occurance. I blink twice and it's time to go again. Some days seem more productive than others. And then it seems to catch up with me and I need a day of just doing absolutely nothing. But, sure as I do, it is time to go all over again. Then I feel like I'm wasting my life away. This is quite a balancing act. I know I need to schedule my life in a way where I can be more productive, but I've never been famous for my ability to do that. I'm a procrastinator by nature and have prided myself in my flexability. Which actually means that I can put a task off until the last minute and then stay up most of the night getting it done. If someone wants to do something, it's no problem for me to drop whatever I am doing and go. I'm still geared like that. I don't want to miss out on spending time with the person that asks.

The number one complaint at this time is the time change. When it starts being dark at 5:00 PM it is just too much! It seems to be a different kind of darkness to me. It closes in on me and blows its cold wind of discontent through my being, and holds me prisoner. Solitude is not a good thing during this time. I sink deep within myself alone and desperate, and unable to voice the need that overwhelms me. I need to stop here. Don't know if I can handle this much truth. ~Later

Better than I thought!

2007-11-13T14:27:00.000-06:00

My dental appointment went even better than I expected! Although I had been eating without pain, an adjustment made even a bigger difference. I thought just eating without pain was great and it was and still is. But after the visit, we went straight to Chick Filet. And not only could I eat without pain, I could chew anywhere in my mouth I wanted to. I know that probably doesn't sound like a big deal, but believe me, when you've had only one spot where you can chew, it's a BIG difference. And I could chew it well. Wow! So this is what eating really is like. It's the little things that can really make you happy. Ahhhhhhh.........
Thank you, Lord.

Woot! Woot!

2007-11-06T12:37:00.000-06:00

Just for anyone's information, who might like to know, since last week, I have been eating pretty much like a normal person - that means without PAIN! My gum is all healed! Now that's exciting folks! I'm scheduled for my follow-up appt. Thursday. I knew eventually it had to get well, but sometimes it seems like forever. Woot! Woot!

~Later

2007-11-05T17:13:00.000-06:00

Wow, I was sooooo... tired this morning. I didn't even take anything with me to do while on dialysis. Brought my ear phones and tried to drown out the sounds of the center, but at best I could only float in and out. My arm hurt today, just aggravating. I did bleed a little before they took the needles out.

I partied a little too much this weekend (aka eating too much from the forbidden food list). I can't keep doing that. I've got to spread it out more instead of pigging out all weekend. The machine was set to pull off the extra fluids and my blood pressure went really low at one point. I got to feeling really weird and told the nurse. They adjusted the machine and gave me some fluid back. I was so sleepy when I got home I could hardly hold my head up. Weird. It's bed time now and I'm wide awake!

~Later

All is well!

2007-11-03T00:01:00.001-05:00

I did bleed one day this week. But everything has gone really well. I've been working on some ornaments (sewing) and that passes the time really well. I was told that it might be possible to get 15 more minutes off my time if I ask. Two hours and 45 minutes would be really cool! I have done exceptionally well with dialysis. It's accomplishing what it is suppose to. I don't have any other outstanding illness. The fibromyalgia is painful at times but it isn't debilitating. Arthritis-type stuff is rearing its ugly head but I guess that is to be expected. Fatigue, sometimes. Yep, over all I think I'm doing pretty good. Emily is seeing that I am getting more exercise and I can really tell a difference there.

Stayed in bed. . . .

2007-10-25T11:40:00.000-05:00

I thought a day in bed, or at least half of it would be beneficial. I don't know if it was or not. Sure doesn't feel like it, but then I haven't been vertical long enough to actually judge the day. I could blame it on the weather. I could blame it on fibromyalgia. I could blame it on arthritis, bursitis, sinusitis, or old age-itis. I suppose it doesn't really matter. I feel like I've been horse-whipped. I'm really looking forward to this winter. sigh! I will feel better. I will! I WILL!

~da grandma