August Already!

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

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

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

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

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

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!

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

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

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

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

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.

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

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!

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!

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?

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

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

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

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

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.