Sunday, December 28, 2008

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




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

Thursday, December 18, 2008

Whining

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

Monday, December 8, 2008

dialysis

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!

Wednesday, December 3, 2008

Monday, November 17, 2008

An Interesting Bit of Information


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!!

Wednesday, November 5, 2008

Something New

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

Saturday, October 11, 2008

Friday, October 10, 2008

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.
~

Friday, October 3, 2008

The Results . . . . . .

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

Tuesday, September 23, 2008

Transplant Update

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.)

Wednesday, September 17, 2008

Results

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.

Monday, September 15, 2008

Prayers Needed!

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

Friday, September 12, 2008

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.

Thursday, September 11, 2008

Wednesday, September 10, 2008

Not Yet . . . .

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

Tuesday, September 9, 2008

Guess What?!!!!!!!!

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.

Monday, September 1, 2008

Hubby's in the Hospital

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.

Thursday, August 28, 2008

Test results

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.

Tuesday, August 19, 2008

August 19 - by 8 minutes

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.

Saturday, August 16, 2008

It's 1:00 AM . . . .

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

Saturday, July 26, 2008

Hello, World!

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.

Monday, July 21, 2008

I thought this worthy of a read.


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."

Thursday, July 17, 2008

Donor kidneys removed with single bellybutton cut


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."

Wednesday, June 25, 2008

Report

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

Monday, June 23, 2008

Appointments, appointments...



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.

Monday, June 16, 2008

Another Dental Update!

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

Thursday, June 5, 2008

Dental Update!

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!

Monday, June 2, 2008

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

. . . 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.

Monday, May 26, 2008

Memorial Day

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?

Friday, May 23, 2008

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!

Monday, May 19, 2008


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, May 16, 2008

Friday again

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?

Thursday, May 15, 2008

Too Many Choices


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!

Monday, May 12, 2008

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, May 10, 2008

Saturday

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

Wednesday, May 7, 2008

Thursday

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

Monday, May 5, 2008

Home Again

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

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

Friday, May 2, 2008

Dr. Appt.

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

Tuesday, April 22, 2008

A New Day Dawning . . .

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

Wednesday, April 16, 2008

A Bad Week



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

Tuesday, April 1, 2008

I can hardly stand the excitement!



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

Wednesday, March 26, 2008

Good News - Bad News!

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!

Tuesday, March 25, 2008

Waiting. . . . .

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 . . . .



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.

Wednesday, March 19, 2008

The Day After . . . . . . .



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, March 17, 2008

Monday, Mar. 17, 2008

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

Sunday, March 16, 2008





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.

Wednesday, March 12, 2008

Well, here we are . . . . . !

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!

Monday, March 10, 2008

Appt.

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

Saturday, March 8, 2008

Me again . . . .

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

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

Wednesday, March 5, 2008

A Record Breaking Day!



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

Wednesday, February 27, 2008

A Good Day


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!

Monday, February 25, 2008

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



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

Saturday, February 23, 2008

Brittle Nails



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.

Friday, February 22, 2008

Some good, some bad



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

Wednesday, February 20, 2008

Another good day!



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

Tuesday, February 19, 2008

Saturday, February 16, 2008

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

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.

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