I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: MattyBoy100 on December 09, 2006, 03:55:19 PM
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As mentioned earlier, I am now waiting for a transplant. I would like to hear from you if you've had a transplant and how it changed your life or, if you have taken the decision, like Epoman has, to stay on dialysis. What made you decide which one to choose and how do you feel about your decision now?
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I am still on dialysis but I have chosen to wait for a transplant. I never really considered staying on dialysis forever, for me the choice was between a living donor transplant (from my mom) and the transplant waiting list. Even though my mom and I were perfectly compatible I decided I was going to wait because I feel OK on dialysis, I don't want to put my mom through this, and because I would hate myself if I were to lose my mom's kidney. Getting a cadaveric kidney is much more comfortable psychologically since obviously the deceased donor doesn't need it anymore and if you lose it, well it's your loss and no-one else's. I think about it every day but two years later I still think I made the right decision.
I know a number of people here in Belgium who are on dialysis long term like Epoman and Zach but most of them can't have a transplant for medical reasons. I know just one person who actually chose to keep going on dialysis even though he could be transplanted. He's a really jovial and funny guy who's been dialyzing forever and loves everyone at my center. They're like family to him and he feels that if he was to stop dialysis at one point he would lose this very important part of himself.
I think there are a lot of people who are afraid of the operation, but mostly these people still go through with it because they want to be delivered from dialysis more than anything. I can imagine that if we were on the verge of finding a real cure to ESRD I would not be so keen on having that transplant. Maybe I would have a wait-and-see attitude and try to postpone the procedure until some great medical advance saved me from having to be cut open and having to take a cocktail of toxic drugs for the rest of my life. Unfortunately, I don't see this great breakthrough coming anytime soon, so I guess our best bet at this point is a transplant, even though the outcomes are always uncertain (a 'crapshoot' as Epoman would say). Right now the idea of a possibly imminent transplant is keeping me positive and optimistic toward the future. Of course I could end up disappointed but I'll take every year I can have without dialysis. I'd do everything to put them to profit and live a full life.
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I prefer Transplant. I am on dialysis currently waiting for a transplant on the list. I was on dialysis 7 months in 1999, and most of the time was just spent waiting for them to complete all the testing on my mom. She donated her kidney and wouldn't take no for answer. It lasted 5 years, probably would of lasted longer if I hadn't had 2 kids, but one will never know. However during those 5 years, I felt AWESOME, like I was never sick a day in my life. No side effects from the drugs or anything... woohoo.
I believe my kids are my life savers... without them, I don't think I would of had really any reason to choose dialysis since I hate it so much... of course this was before I found out about PD. I would never choose hemo again unless my kids were still young like now and I couldn't do PD.. I would do it for them. Right now the only thing that sucks... it never knowing when your gonna get a call saying theres a kidney available... the wait seems like an eternity, however it's only been 2 yrs. :lol;
So the bottom line, for me... Transplant is the way to go... and I am very excited about getting another one one of these days.
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I was on hemo for a year and by 3 weeks after the transplant surgery I was feeling better than I did on dialysis. It is now over 4 years later and I am still doing better every month.
Cora
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I'm on hemodialysis but with my eyes on transplant....8 years from now....
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God knows I have this decision facing me soon. I have a sneaking feeling they are not going to transplant me, but we shall see. Life on dialysis has not been that bad for me. It has been eight years and I just keep going. The Energizer bunny could take lessons from me! So anyway they are requiring more tests from me and I think they will find something. We shall see. I have managed to have a full ife in sotie of dialysis treatments three days a week. The clinic cares about me and I like the people there. Transplant seems to be trading one set of problems for another one. I need to thrash this out so you will be hearing the arguments both pro and con from me.
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Ive been back and forth with this decision, and, as it is right now, Ive delayed testing until springtime. Its all been too much too soon. Dialysis, though boring is OK for now.
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I am curious..... I see some people mentioning that transplant brings on it's own set of problems.... and I see negative views towards transplant. So, my question is what's so bad about transplant that you wouldn't want to try and get one? Did you have a bad experience or know someone who did?
The only reason I ask is because when I had my transplant, I had nothing but great things happen. I felt 100% brand new the SECOND I woke up from my transplant... I didn't even really register I was in pain b/c I felt so good from the working kidney... I wanted to get up right away and I pretty much did, I walked to the next floor and talked to my mom who was in way more pain then me. I didn't have any bad side effects from the meds, a little hair growth, but hows that bad? It went away after the dosage was lowered and I lived a very normal life, with no problems. So for me it's hard to picture anything bad about a Transplant. So i'm curious. ;D
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It comes down to what kind of life you want for yourself and your family. Do you want to be tired, listless, dependant on a machine, maybe unable to work, have co-morbid conditions caused by your treatment, and have a greatly shortened life expectancy? If you do then choose dialysis. On the other hand do you want to feel good, forget about dialysis appointments, enjoy life, and in short have a completely normal life? If that is what you want choose transplant. I passed the five year mark with my transplant last month. It was the right choice and if I ever have to make it again it will be the same.
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Obviously, since I just had a transplant a few days ago, I felt that was the best way for me to deal with this disease. There was no way I was going to spend any more time than necessary on dialysis. I do know that there are side effects to the immunosuppresants, but they have come a long way with those meds, even in the last few years. Prednisone, which is the worst one I ever see mentioned on this site, is not used nearly as much as it used to be. By week 14 I will be tapered down to 5mg per day. I had as much as 1250mg on the day of surgery, and I haven't noticed any terrible side effects. I was taking way more meds prior to transplant, along with dialysis, so I think the tradeoff is much better on the transplant side. Of course, I tolerate most meds very well, and I know that makes a difference.
To each their own...it's YOUR life and YOUR body. But, I will say, if you have information on transplants that is even a few years old, you may want to update your research. They have come a LONG WAY, and they are learning new things everyday. The surgery I had wasn't even available six years ago, and so far it has been very successful (at least at Mayo Clinic, who "pioneered" the positive crossmatch transplant protocol).
I will continue to be monitored, but, like angela515, I felt GREAT as soon as I came to in the recovery room. My body chemistry is getting back to a healthy state, my mind is so clear, I have so much energy that I can hardly sleep! And this is after having major surgery! :2thumbsup;
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Certainly transplants have a down side. The meds, the follow-ups, etc. But after doing both, I see a transplant as the next step for me. I have more meds, more labs to worry about, and more doctor appointments now on dialysis then I ever did post-transplant. Part of my decision may also have a lot to do with my age. I'm facing my second transplant before my 30th Birthday, and I just can not see doing dialysis for the next 50 years straight (God willing). I know I may be on dialysis again in the future, but everyone needs a break, right? My last break was 11 years, maybe the next will be 20!
Oh and Jill, the effects of the Predisone will show up in the next week or two, but once you get down to 5mg a day, they'll start to fade. I started my transplant workup last week and we talked about all the changes in medicine protocols since my last transplant. It seems that the meds they use these days have fewer side effects then the ones I was on for a over a decade, so hopefully the Predisone will be your only struggle. Oh and p.s. that stuff will make you hungry - don't give in to it's sweet tooth. It's a beast!
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In 89 I had a transplant and it was great. I noticed just how much better I felt within days of the transplant. Of course back in the day when hemoglobin was a whopping 8 anything was better.
At first it wasn't too bad. But the longer I was on the predisone the more the side affects kicked in. The imuran and the cyclosporin never gave me any trouble.
I do not really great having the transplant and would still do it if I was given the choice again back then.
However today I have put off a second transplant because of the predisone. I figured I can wait until no predisone protocol is used which it is now used by more and more transplant centers. However now my PRA level is so high (79%) that may never be an option. So it may be holding out for a better option in the future.
Many patients will get Cushings syndrome or the effects that are associated with it from the predisone and experience many of its symptoms. Most commonly the weight gain and moon face. Not only does the drug make people hunger but it also has the affect of making it easier to store fat vs building muscle. So one faces co-morbidities from dialysis or faces them from the transplant with the predisone.
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Just a quick note on Prednisone. Not *everyone* has all the side-effects from Prednisone. I have been taking very very high doses of Prednisone from 12-17 yrs of age. Then off and on for a few years after, and then I took Prednisone again after transplant until 2004 when it failed. I still currently take Prednisone once in awhile for aches and pains due to RA.
For me, I got the "moon-face" side effect. I never had acne, or got over-weight due to Prednisone. I didn't crave sweet things, and never craved chocolate or whatever. Due to being on very high doses for so long, (and were talking doses so high I was on Solumedrol (IV Prednisone) at times, the doses I was on you wouldnt be on after transplant..) the bones in my ankles started to deteriorate and I had both ankes fused together. So I got 2 screws in each ankle, but I can still walk even though I was told I wouldn't be able too... my surgeon was amazing.
Anyways, point is... not everyone has all the side-effects from Prednisone. Just like any medicine, it has side-effects... but that don't mean YOU will get any or all of them. They are however, possible.
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What are the potential complications of hemodialysis?
Your kidneys play a role in many of your body's systems. When your kidneys stop working, these other systems don't work as well as they did before. This can lead to various complications, including:
* Lack of red blood cells (anemia)
* Bone diseases
* High blood pressure
* Fluid overload
* Inflammation of the membrane surrounding the heart (pericarditis)
* High potassium levels, which can affect your heart rhythm
* Nerve damage
* Infection
* Heart disease
Dialysis of any type is a serious responsibility. Whether you choose to have hemodialysis at home or in a dialysis center — or you opt for peritoneal dialysis — your health is in your hands. Weigh the pros and cons of each treatment option with your health care team to help decide what's best for you.
What about medication?
While you're receiving hemodialysis, you'll likely need various medications:
* Blood thinners to prevent clots in the hemodialysis machine and tubing
* Blood pressure medication to control your blood pressure
* Erythropoietin to stimulate your bone marrow to produce new red blood cells
* Calcium, iron and other nutritional supplements to control the level of certain nutrients in your blood
* Phosphate binders to prevent the buildup of phosphorus in your blood
* Stool softeners and laxatives to manage constipation
Your doctor will do frequent blood tests to monitor your condition.
-------Read more at http://www.mayoclinic.com/health/hemodialysis/DA00078 "Hemodialysis for kidney failure: Is it right for you?"
What are the potential complications of peritoneal dialysis?
Peritonitis — an infection of the peritoneum and abdominal cavity — is the most common problem for people receiving peritoneal dialysis. To prevent infection, wash your hands before you handle the catheter, and clean the area around the catheter with antiseptic every day. Store your supplies in a cool, clean place.
Notify your doctor if you have a fever, if the dialysis solution is cloudy or has an unusual odor, or if the area around your catheter is red or painful. You may need antibiotics.
Dialysis of any type is a serious responsibility. Weigh the pros and cons of each treatment option with your health care team to help decide what's best for you.
What about medication?
While you're receiving peritoneal dialysis, you'll likely need various medications:
* Blood pressure medication to control your blood pressure
* Erythropoietin to stimulate your bone marrow to produce new blood cells
* Calcium, iron and other nutritional supplements to control the level of certain nutrients in your blood
* Phosphate binders to prevent the buildup of phosphorus in your blood
* Stool softeners and laxatives to manage constipation
--------Read more here http://www.mayoclinic.com/health/peritoneal-dialysis/DA00079 - "Peritoneal dialysis: A flexible treatment option for kidney failure"
What can I expect after a kidney transplant?
Even with the best possible match between you and the donor, your immune system will try to reject the new kidney. Your drug regimen will include medications to suppress your immune system. You'll likely take these or other drugs for the rest of your life.
Some of these medications may cause noticeable side effects. Your face may become round and full. You may gain weight, develop acne or facial hair, or experience stomach problems. These effects may decrease as time goes on.
Because medications to suppress your immune system make your body more vulnerable to infection, your doctor may also prescribe antibacterial, antiviral and antifungal medications. Some immune system medications can also increase the risk of developing or aggravating certain conditions, such as high blood pressure, high cholesterol and cancer.
Your post-transplant treatment will be a delicate balancing act between preventing rejection and managing unwanted side effects. Your doctor will monitor your treatment closely and adjust it as needed.
You'll also need to follow a diet designed to keep your new kidney healthy — although it'll likely be less restrictive than a diet associated with dialysis. You may need to count calories and limit your salt intake.
What are typical survival rates?
Most people who receive a kidney transplant enjoy a high quality of life. About 97 percent of people who receive a living-donor transplant are living after one year and almost 87 percent after five years, according to the Organ Procurement and Transplantation Network. When the organ is a close match, nearly 96 percent of people who receive a deceased-donor transplant are living after one year and more than 80 percent after five years.
------------ Read more at http://www.mayoclinic.com/health/kidney-transplant/DA00094 - "Kidney transplant: Regain your independence with a donor kidney"
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Dialysis of any type is a serious responsibility. Whether you choose to have hemodialysis at home or in a dialysis center — or you opt for peritoneal dialysis — your health is in your hands.
That's what I like about it. In some ways more control and more predictable.
8)
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My neph from the clinic came in yesterday and said my labs were so good it would be great for me to consider a transplant. I've been on hemo for 1 year and have given it much thought. So many ups and downs but I guess I will at least go in and get on the list and take it from there.
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bolta, as others have said in other threads, you can go ahead and get on the list, and if you get the call and decide it's not for you, you can turn it down. At least if you decide in the meantime that you do want a transplant, you will have been on the list and won't have to start from scratch, so to speak.
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Since I suffered greatly on dialysis and essentially lost my entire life, being too exhausted to do anything, and have lived an essentially normal life again since getting a transplant, for me the superiority of a transplant is so clear I cannot understand how anyone can even question it. What it all comes down to is that transplant recipients life twice as long as they would have on dialysis if they have no serious co-morbidities, but if they have diabetes, then they live three times longer with a transplant than with dialysis. I suppose if you would prefer to be constantly exhausted, trapped by being tied to a machine, suffering constantly accumulating medical deterioration, and facing an early death, then dialysis is the way to go. But most people in my experience would prefer the opposite of all those things.
I have a strong feeling now that I could never stand going back on dialysis. For me there are two kinds of death. In one kind, you are buried in the cemetery, complete obliviion settles over you, and nothing ever bothers you again: this I call 'Death with the Lights Out.' Then there is 'Death with the Lights On,' which is the living death of dialysis, where you still face all sorts of pain and stress, even though you are reduced to the helplessness of a corpse. Of the two types of death, I prefer the former.
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Of the two types of death, I prefer the former.
Of the two types of death I have a strong preference for neither. Not going anywhere soon except to the car lot for a new one.. :thumbup;
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Dialysis vs. transplant is something that I'm still struggling with. I've reached the point where I'm willing to at least go through the testing and get on the list and give it a try, but I'm still very uncertain and uncomfortable about several aspects of it. Since I've started home dialysis, I feel 100 times better then I have in a long time, and once I start home nocturnal (I do short-daily now), I have the potential to feel even better. My idea is that if I can get a transplant and it's successful, and I don't have any major side-effects, that's awesome and it's the best form of treatment. But if I end up having side effects out the wazoo and feeling worse then I did on dialysis, then I will be going through every day wanting my machine back. I wish there was a guarantee that a transplant WILL work with no side effects or problems, but that's simply not possible. Oh well, I'll just see how things happen.
Adam
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Adam,
What is home nocturnal?
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Adam,
What is home nocturnal?
It's hemodialysis performed at home while you sleep. It can be done on both a standard dialysis machine or the NxStage (but with NxStage you have to use an external heparin pump and nocturnal-specific cartridges). I should be switching from short-daily to nocturnal by the end of the year.
Adam
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I never heard of this and would be interested in finding out more. I don't use heprin, so I would just use a different cartridge? ( I am on nxstage too) Where did you hear of this? Thanks.
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I actually found out about NxStage nocturnal online (can't remember where). At first I had no interest in doing nocturnal dialysis because of the idea of sleeping while hooked to a machine, plus concern for possible dislodging needles. However, I've done some more research on it and it has appealed to me more and more. The main benefits of nocturnal hemodialysis are more dialysis, which equals feeling better and having better labs (I will be doing about 8 hours, five or six nights a week), and because the dialysis is longer and more frequent, all the pumps run slower so it's more gentle on your body. Most nocturnal hemo patients have no diet or fluid restrictions, and they can often go off of a lot of medicines (phosphate binders and BP meds). As for the equipment, If your centre offers nocturnal with the NxStage, you should receive an external heparin pump (heparin is usually required because the treatments are about four times longer than a typical short-daily tx), and you will receive the CAR-171 cartridges, which have an extra "T" for connecting the heparin pump. To my knowledge there wouldn't be any other equipment or supply changes, except you would probably use more dialysate for each tx because of the extra length. Well, that's just about it. If you have any other questions, there are a lot of people on here that can answer them.
Adam
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Adam,
What is home nocturnal?
Here are some questions answered about NxStage http://www.ilovenxstage.com/faq.html
and more info about Nocturnal Home Hemo http://www.homedialysis.org/learn/types/nhh/
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I never heard of this and would be interested in finding out more.
Nocturnal Hemodialysis is the gold standard for people on dialysis.
8)
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You're right Zach it is the gold standard. Hubby has been doing it for a year now on a fresenius 2008H machine and he really likesit. He sleeps during traetment had has all of his waking hours to do what he wants. Because of the long time hooked up it cleans potassium and phosporphus a lot better so you don't have much restrictions. Makes life awhole lot more "normal".
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I never heard of this and would be interested in finding out more.
Nocturnal Hemodialysis is the gold standard for people on dialysis.
8)
Really? That's not good news for me in the future then.
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I had a transplant in 92. It lasted about ten years. I have had kidney disease since i was born. I knew in my head that i would always have it. I was lucky though because it didn't fail { I say IT cause i was only born with one } until i was in my thirties. I have wrote about this in another thread. When i was faced with dialysis the first time i had a wife and two children. One was just a baby. My ex and her family and some of my friends told me i was crazy not to go on. " If you love us you will do this." Things took off. There was dialysis. I worked at the time and went to dialysis. My ex couldn't stand it. Other than her i had the support of everyone else. She found the whole thing a burdon on her and where she wanted to be with her job. My brother came into the picture and spoke of a transplant. The way my brother is and the people he knows the whole thing became a media event. Two fund raisers were done and around $30,000 was raised. We were in the paper and t.v. and even the radio. I remember seeing him right before they took him down to get his kidney out for me. I wasn't used to someone loving me that much. Afterwards there was the initial media attention then i was by myself. I was told the following: I was cured of my "disease" i would never have to worry about dialysis again. The transplant would last forever yes i was told forever. I believed them. I felt so much better after i woke up from the transplant. I was ready to live again. I had a new baby and my wife and daughter. We moved to another state a year after the transplant. She met a healthier man and divorced me. I wasn't even over the transplant. My mind couldn't fathom that. What about the "If you love us you'll do this crap?" At the time i made some decisions that I'm not sure were correct. Once i was separated she took me off the medical insurance. At that time around 93 or 94 my job couldn't insure me cause i was a high risk. I struggled for four years before i was able to get it again. I went on the antirejection meds again. My kidney lasted till 2003. I came back home to nothing. No more fund raisers. No more media. WTF? they lied to me man. I wasn't able to enjoy the gift of love my brother gave me. It was destroyed by greed and selfishness. I came home because family is better than nothing. I waited though when my kidney failed again. I did things i know i wouldn't be able to do. It was hard to face my brother. Now i am on dialysis again. The first time i had the catheter and went through seven of them. This time i went through six of them and finally agreed to a fistula. My old transplant coordinator told to take care of my new kidney. She said; "Keith you will not be able to handle dialysis again." Well i have. There is some reason i guess i am still alive. I have a woman in my life now who has been tested and is a match. No more promices. No more media. Just me.