WHY DO I NEED TO TRY FOR A TRANSPLANT

[Seaweed]

I would like to understand , why I need to really chase the transplant game !!

I have been on cycler pd for several months now, and I think its a god send , and I realize some people are having a hard time either Hemo or PD  which doesn't work for them.

But someone at the age of 60 I'm pretty healthy, I mean I got my lumps and bumps and some ache and pains but what do you expect at 60

yesterday I went down to Scripps in San Diego , (which i choose them because they wont use steroids unless necessary) so I have to go back next month because they approve to take me and put me on the list .

I'm moving forward because of the wife and kids,

Scripps told me this and what to expect when we call you

your going to be in he hospital for 3 days and your going to feel like crap when we let you out
we prefer you live down here for the next month because you'll be seeing us twice a week for the 1st month
were going to load you up with about 50 pills , which by the end of a year you'll be down to 3 pills

The Truth is, I'm more scare of a transplant then anything , I'm happy the way thing are now , I don't mind the late hook up or the alarm going off













1

[Angiepkd]

If you are happy with the way things are, then you should continue!  Transplant is not a cure, but another form of treatment. I do home hemo and am fighting for a transplant.  I want to be free of that machine. I want to eat cheese and drink as much water as I can.  I have hereditary PKD, so lots of dialysis and transplants in my family.  From what I have seen, transplant is wonderful.  However, I have read some stories of transplant patients who had problem after problem with rejection or meds.  I guess it's kind of a crap shoot.  What works for some may not work for all, and everyone has to make their own decisions based on the information they have.  I would do more research. Speak to some of the experienced people on this site. They have both good and bad stories to share about all the different treatment options.  We are so lucky to have all of this information available.  I like to leave all my options open in case I have a change of heart. If you would have told me I was going to put in my own needles and do home hemo 5 years ago, I would not have considered it.  But here I am doing it now.  Best of luck to you in whatever you decide, and I hope the cycler pd continues to work well for you!

[galvo]

I'm 71, have had 4 heart attacks and numerous blood transfusions. So I won't be getting a transplant. Doesn't worry me. I'm quite happy on HD in a wonderful centre, and I'll continue on this until Jesus wants me for a sunbeam!

[obsidianom]

I would like to understand , why I need to really chase the transplant game !!

I have been on cycler pd for several months now, and I think its a god send , and I realize some people are having a hard time either Hemo or PD  which doesn't work for them.

But someone at the age of 60 I'm pretty healthy, I mean I got my lumps and bumps and some ache and pains but what do you expect at 60

yesterday I went down to Scripps in San Diego , (which i choose them because they wont use steroids unless necessary) so I have to go back next month because they approve to take me and put me on the list .

I'm moving forward because of the wife and kids,

Scripps told me this and what to expect when we call you

your going to be in he hospital for 3 days and your going to feel like crap when we let you out
we prefer you live down here for the next month because you'll be seeing us twice a week for the 1st month
were going to load you up with about 50 pills , which by the end of a year you'll be down to 3 pills

The Truth is, I'm more scare of a transplant then anything , I'm happy the way thing are now , I don't mind the late hook up or the alarm going off













1

I am going to wade in carefully here as a lot of people have strong opinions on this issue.
I had a new patient visit me the other day. As I got her medical history what really struck me was ------she is currently on her THIRD cadaver kidney . She has averaged about 2 to 3 years per kidney before they failed. This third is lasting longer and is in its 4th year. They seem to have a better handle on her this time with her meds. She became diabetic during this whole saga , probably from the prednisone she is taking as one of her anti rejection meds. She is also obese now and is about to undergo bariatric surgery (stomach stapling )  to lose weight .  She is about 35 and looks 55.
Now you can make of this as you want. She is happy with the outcome . She supposedly feels ok now. However she is diabetic and on insulin and oral meds with fair glucose control. Her weight isnt helping. The prednisone can cause weight gain also.
I think one take home point is kidney transplant is a TREATMENT as some others have wisely stated here. It is not an end all of kidney disease. For some like my patient it is worth it. For others it is not.   No matter what it is a rocky road either way.
My wife and I decided not to go the transplant route for her. She was condidered a "good candidate" by the transplant docs. and her brother offered to donate. Yet with all the issues that go with transplants and the meds, we decided that home hemo dialysis is better for her. Doing 5 days per week is almost as effective as a cadaver kidney transplant. Also we dont have the increased risk of cancer that the transplant meds bring on. She already has a high risk in her family history. Yes its a lot of work . I had to change my life to do this for her almost 20 hours per week. However I see how well she responds to dialysis each time we hook her up and it makes it worthwhile. I am thankful we can do it ourselves at home .
Now if it were me with kidney disease I might consider a transplant. I am more active than her physically (I am still an athlete and always have been) and could handle the meds better after a transplant. Yes I could do my own dialysis but it would be harder than doing it for her. So in my case I would look at the issues differently.  ----And that is the point .
As a doctor one of the lessons I have learned in 25 years of practice is just how different each patient is. What works for one may be horrible for another . There just isnt one answer for all. You have to look at the pros and cons carefully and balance them.
I beleive someday artificial implantable kidneys will be the best answer for all. Until then we each have to look at what is best for ourselves. Despite the name of this place, dialysis isnt horrible for everyone. In fact some like my wife do very well on it and dont mind it at all. Others hate it and a transplant is the best option.

[Dman73]

I think, if you qualify, everyone should have the experience of a successful transplant. I had one for 14 years and it allowed me to do many things (easy travel, eat & drink and get my commercial pilots licence). I remember every day when I left for work I gave thanks for this special gift knowing full well that it was only temporary. It gave my body a chance to rest and build up after being on D for 14 years. What did me in was that someone at work brought in some pink grapefruit from their backyard and the leg swelling was masked by some hip surgery that I had and didn't realize I had a problem until 1 year later when my creatinine was higher in a lab test. They tried to to treat me for anti-rejection but I knew it was all over and had a new fistula created. The rejection of that kidney was one of the most difficult experiences that has ever occurred in my life.

Now I am 63 and am waiting for the passage of the Lifetime Immunosuppressive Drug Coverage for Kidney Transplant act to pass as I am retired and on disability with no prescription coverage. I have spent 12 years on D2 and do well with my treatments by watching my fluids & diet.

Go for it, get listed and Good Luck ...

[jeannea]

You don't HAVE to do anything. I recommend taking your time to educate yourself thoroughly. Read everything you can. Ask questions. Maybe they can set you up with a transplant recipient to talk to. There are problems with dialysis. There are problems with transplant. Think about your risks and benefits.

BTW: i don't believe for a second that you'll ever be down to 3 pills or even 3 prescriptions. Dialysis or transplant. Not gonna happen.

Make the best decision for you. Since you are married, share what you learn with her and discuss things. Eventually you'll know what you want.

[Michael Murphy]

I agree for me transplant is not a option I realized right away the fact every two years I have a cancerous or pre cancerous mole removed that the immune suppressants of a transplant would kill me. However I really did not want a transplant.  I am 63 overweight, and a heart attack survivor.  Every day I get up is a victory.  My parents when I was a child thought sunburn was good for a child gave em Vitamin D.  They also let me ride a bike without a helmet,  Times were different in the 50's. Transplant just bothers me I want to go out with the original equipment.

[cariad]

I am going to wade in carefully here as a lot of people have strong opinions on this issue.

Amen to this! I shall attempt the same.

I never know what people want when they ask this question. Do they want us to try to convince them to get a transplant or do they just want our permission, so to speak, to stay on dialysis? Or something else that we're not picking up on?

There are a number of people on this site who will be on dialysis for life, either by choice or circumstance. Have you tried HD? If so, how did you find it? The primary concern I have in reading your post is that you are happy with life on *peritoneal* dialysis. Many members on PD are positively thrilled with it, the trouble is that that modality is not effective forever and they must all eventually transition to hemo, some smoothly, others not so much. From what I've read from members here, 10 years on PD is amazing, and 18 years is record-breaking. Odds are great that you will find yourself on hemo sooner rather than later. If you would still prefer hemodialysis to transplant, then off course you don't need to go through the eval. I would go through with it just to keep your options open, but that's all they are at the moment, options, not requirements. I think the hospital is being a bit irresponsible telling you that this is how you WILL feel and for how long. I felt awful for a month, then gradually improved and felt about normal by 3 months, but I had a very complicated transplant. I think I was on about 10 meds at discharge, 50 is a gross exaggeration. Some people report feeling refreshed and ready to tackle the world the day after the operation. A lot of it is luck.

In the end it's your life and you can absolutely do what you want and we can support you whatever decision you make.

[cariad]

I'll continue on this until Jesus wants me for a sunbeam!

Aw! Such a delightful image. And what a sunbeam you'll make, galvo!

[Shaks24]

I agree with you. My D care team told me I was a great candidate for transplant and signed me up for the program in my town that begins with a half day detailed educational presentation encompassing all the details. At the end of the session they asked if I wanted to move forward and I told them no. I see it as exchanging one set of challenges for another that has additional risks and possible complications. They told me to contact them should I have a change of heart. I am 55 and for now content doing PD. In the end its a personal choice that we have to make.

[okarol]

If dialysis is working for you, that's great.
The wait time is 10 years here in Los Angeles for type O., so my daughter is registered at Scripps Green too, awaiting her 2nd transplant.
We are hoping to find a living donor, possibly to enter a swap program.
She is doing ok on PD, but we know the side effects of living on dialysis, so she is hoping to get a transplant.
Both treatments have risks. You have to make your best informed decision.

[RichardMEL]

Totally agree with what all the others say - you don't HAVE to go for a transplant if you'd rather not. Or rather, as per the subject you don't NEED to do it.

Now, the medical types may well suggest that you're healthy other than CKD and thus a treatment of transplant could really give you "back" a lot that you may not have while undergoing D... but if you are perfectly content with PD cycler and where you're at then sure.. why take the risk at this point. As with dialysis, tx has its own risks.

I have a transplant. I love it. It is a gift... but it is just another form of treatment. I am a firm believer in people being able to be free to choose for themselves.

I am surprised by what you report you were told - only twice a week for clinic/labs in the first month? I was doing labs daily for the first month.. but each unit is different.

To say you WILL feel like crap after the surgery I think is a bit much. Everyone reacts differently. I woke up and felt well groggy and stuff but apart from that I was doing OK.

If it scares you then just inform Scripps that it's just not for you at this time, but things may change with your pd, or lifestyle or whatever.

I think most people, both medical and otherwise, assume that transplant is what everyone wants. Having had my gift for 3 years now - for me, yes it is what I wanted and I love every day with it. I'm not you (lucky you! ) and everyone here is different. There's no right answer to this kind of thing I think.

Surgery like this is fairy major and there are risks and so on and how you feel about that is important. Now I think the stats say something like 95% of tx's are still good at 1 year out, up to maybe 50% at 5-10 years (I don't have a link for this) so the odds are reasonable, but again it's a choice. it's not perfect - though technology, meds etc (and a no steroid protocol is GOOD!!!!) are always improving -  and may not work for you.

As for the pills and so?  Sure, you get quite a bit initially but they soon trickle down to not much as things stabalise. I am sure you have meds to take right now anyway, so is there really a big difference exchanging one lot for another? I think the most pills I had in a day post-tx was closer to 20 or 25 anyway - 50 seems extreme but... each case is different.

Do what feels right for you, and what seems to work for you, your family and your lifestyle.

[Deanne]

My transplant was one week ago tonight and it's been a hard week for me. PD was much easier and I mostly felt normal. However, the docs tell me I'm doing much better than average and recovering at record speed. My expectations were just too high. I thought the pain would be gone after a couple of days. I thought I'd leap out of bed, be able to walk a mile and be fully independent. It didn't matter to me that I was told it would be otherwise. I forgot how prednisone kicks me in the rear. I'll be tapering down on it until July.  I take about 50 tablets a day for now. Most will go away over time. It's a challenge.

I'm still glad I went through with it. The challenges I need to deal with will lessen and I already appreciate the nearly restrictive free diet. I'll love this part once my appetite returns. I have to force myself to eat yet. I hated the PD dietary restrictions.

I understand much better now how transplant isn't right for everyone. It's important to do what's right for you. If you get a transplant because you feel pressured into it, I think you'll have a hard time with the challenges I feel and you'll be less likely to be compliant.

[KarenInWA]

I can say as someone who is over 2 years post-tx, that I am not only taking 3 pills a day. Nor did I start out taking 50 pills a day.

I did come in to the tx clinic twice a week for the first month after tx, then it went down to once a week.

I personally did not feel like crap when I left. I have a high pain tolerance, so my pain was minimal. The only pain I had was when getting in and out of bed, which for me was easy to manage by being careful. Everyone is different. I brought home pain pills and never took them.

My appetite was small initially, and I think that was due to absorbing one of the tx meds *too* well. One of the side effects of Myfortic is stomach issues. That was the one drug that gave me the most issues in my first year, but that was remedied by taking me off it for a few times, and lowering the dose significantly.

KarenInWA

[noahvale]

*

[Cordelia]

My neph told me that the longer I'm on dialysis, the higher the risk of having "other" problems crop up, like heart problems, etc that may prevent one from being able to have a transplant.

I was healthy my entire 2.5 years on hemo dialysis.  My neph encouraged me right from the start of my renal failure to get a transplant. He advised me Not to wait until my health got worse on dialysis.   I was 38 at the time of my renal failure in 2010.  I've been transplanted 10 months now.

I have no idea if PD is any different, if its hard on that heart also, I don't know.

So for me, personally that's why I decided to do it sooner rather than later.  Its a very personal decision. I was scared also and that's completely normal to feel that way.

[MooseMom]

I became a member of IHD when it became obvious that I was headed toward dialysis.  I did a lot of reading and a lot of researching on many different sites.  The more I learned about dialysis, the more frightened I became.

Then my mother had surgery to repair an aortic aneurysm, and the surgery resulted in renal failure.  She had to begin emergency dialysis and spent the last 5 years of her life having in-clinic D.  She was unable to get a functioning AV fistula for 18 months.  I saw all of the access problems she had to endure, along with all of the other corrosive side effects of dialysis that always seems to crop up.

My cousin had to start dialysis because years of undetected hypertension destroyed his kidney function.  He started on hemo but went to PD, and quite quickly he developed peritonitis which nearly killed him.  He went back to hemo and was rescued by a living donor.  He is now thriving and has his own business.

My neph and I fought long and hard to do anything to keep me off dialysis.  There was nothing, NOTHING, that terrified me more than the image of me being on D.  I had years and years of unrelenting anxiety as my renal function deteriorated.  The day I had my fistula created was truly the worst day of my life.  There are no words to describe the depths of my terror.

When I got "the call" after being on the list for 2 years, sure, I was scared of the surgery.  But several years ago, I had had a hysterectomy, so I had some idea of what it would be like to recover from major abdominal surgery.  I have to say that my recovery from a transplant was like a teddy bears' picnic compared with recovery from the hysterectomy.

The only major side effect from the immunosuppressants I've had was a bout of neutropenia which was no great surprise and was quickly and easily solved.

I certainly didn't have 50 pills to take after the surgery!  Like others have said, you get quite a few prescriptions on your way out the hospital door, but most of those are dropped after either 3 or 6 months.  I certainly take fewer pills now that I did right before surgery!

My tx center is in another state but still is only an hour and a half away; there was no talk of me having to live up there.  How far away are you from San Diego?

I had labs done twice a week, too, but I had them done locally via Quest Diagnostics.  Results were faxed to the tx center and were mailed to me (I could also call them for results if I chose).  So I don't know why you would be required to live in SD just for labs.  Telecommunication technology is great!  I'm sure they have fax machines in San Diego!

And Cordelia is right.  The longer you are on dialysis, the higher the risk that your overall health will be compromised by D, and the harder it will be to get on the list and/or recover from surgery.

Perhaps if I had had to begin dialysis after all, the terror would have abated.  It's true that the fear of the unknown can be monumental.  But for whatever reason, my fear of dialysis FAR outweighed any fear I had of transplant.

I strove for transplantation because I believed it would be better for my family than if I were on dialysis.  A healthy life with a tx meant that I could be more help to my husband and could travel to see my son (he lives abroad) than if I were on dialysis.  Being on D meant that I wouldn't be free to be with my son if he needed me.  Most of us have to take into account how our decisions may affect our families.  But at no time did anyone lobby me.  It was entirely my decision.  It should be yours, too.

Good luck with whatever you decide. 

[Seaweed]

We'll I thank you all , it's not that I don't want to go on the list , it's just the doc will drag Thur every test they think of just to get on the list.
I'm a typical guy we don't run to the docs for every twitch or itch.

I'm trying to be proactive , and even tho am healthy  now , the big question what will I be like 5-10 yrs down the road
We'll nobody can say , the more you research the subject the less you know.

I'm going to move forward with the list , but I'll be honest , I got a dam short fuse , this excessive testing is getting out of hand
Then we wonder why health care is expensive.
But if it takes 5-7 yrs to get kidney ,we'll I'm happy with that too.

[cariad]

I'm going to move forward with the list , but I'll be honest , I got a dam short fuse , this excessive testing is getting out of hand

Everyone has a short fuse these days!

I am going to be blunt. Keep that fuse in check, pick your battles, or don't bother pursuing a place on the list. If you blow up over being asked to do additional testing or similar they are going to reject you for emotional instability which they will perceive as non-compliance danger. San Diego's program is small so perhaps it would matter to them if you were not listed, but I rather doubt it. You are right in the middle of the most degrading part of all of this, they have all the power over you, and most of them will remind you of this frequently. If I were in your situation and I was doing this for my spouse and kids, I would just put my head down and do it. Once you are on the list you shouldn't have to deal with the transplant team very often.

[MooseMom]

Seaweed, cariad is correct in suggesting that you keep your temper in check.  This is a great time to learn patience because even if you are loving PD, there will come times when THAT treatment will serve up plenty of obstacles.

Even a "typical guy" understands that trying to get onto the transplant list isn't like running to the doc for every twitch or itch!  LOL!

I was given a long list of tests I'd have to undergo, and I took the time to find out what purpose each test served.  Once I understood, I was actually happy to get them done.

Here is what you generally need to understand.  The tx team need to know that you are healthy enough to survive the surgery.  They want to see that your heart is strong enough, hence the cardiac testing.  They want to see where your major blood vessels are.  Kidney transplant is essentially a vascular surgery.  That's why you will have CT scans of the abdomen.  Post tx, the immunosuppressants can accelerate the growth of malignancies, so they want to make sure you don't have cancer before giving you these drugs.  They also want to make sure you don't have any active infections which would, again, rage out of control with the use of these meds.  Hence the TB tests and dental workup.

If there is a test you have to undergo and don't understand the reason for it, just ask. 

I do have one suggestion that made the world of difference to me while I was undergoing the pre-tx testing.  If at all possible, and if you don't have one already, get a fax machine.  You will save gobs of time if you can fax results to your tx center.  Oh, and keep a copy of every single piece of paper you encounter, ie, requests for testing, letters confirming appointments, results, etc, because there WILL be some piece of information that gets lost in the shuffle!

I personally never felt any degradation.  Never occurred to me to think of myself in this regard.  I was the captain of my ship.  I got exactly what I wanted and did so without a single cross word but did so with plenty of smiles and kind comments.

[galvo]

And, when you feel like a good rant, come on here and yell your head off. We all understand the frustrations this disease can cause.

[cariad]

I personally never felt any degradation.  Never occurred to me to think of myself in this regard.  I was the captain of my ship.  I got exactly what I wanted and did so without a single cross word but did so with plenty of smiles and kind comments.

I think it is degrading to be told that you have no choice, you must undergo invasive testing to get the carrot they are waving under you. I am not saying that it is a matter of seeing oneself as degraded, but that it is an infantalizing system overall and I cannot help it, I worry about what some of these unconscionable hospitals will say or do to people who don't have the knowledge or experience to call them on it. I felt like people at evals had too much interest in me (trust me, it got creepy at times) and desperately wanted to have me as a patient, but they also wanted to put me in my place so to speak.

I think it is also degrading to be told that in actuality, everything is a test. What other group of people with a serious illness are treated this way, forced to play these little mind games on top of everything else? If you are fine with the testing, that's obviously the ideal way to be, but I can also understand why it would work someone's last nerve to have to interact with some of these hospitals. USC, for example, is legendary for their ability to lose test results. This is deeply personal information, and they don't have any clue where it has gone. Ask anyone, it is a universal experience if you have tried to list with them. If only I had known.

I think the difference between us was that I was not new to transplant as you were, I knew exactly why they wanted these tests, but I also knew that some were unnecessary. They seemed to think the problem was I didn't understand, but in fact I completely understood and that annoyed many of them in some way. Unnecessary tests cost me time, money, and sometimes pain. I had to hire babysitters or impose upon friends every time they pulled something new out of their "hat". My husband would have to book off work if it was a test that was going to be in any way incapacitating. As Chris once said to me about Northwestern "Every time you get past one obstacle, another magically appears" which is them in a nutshell. I am the picture of politeness in medical situations until I have been given a reason to behave otherwise. I have been given many reasons, I don't always act on them, but I will if I have to, definitely if it involves my kids. For me, it is important to see how these centres will treat someone like me, someone who has been through a lot when it comes to ESRD, is deeply cynical toward the medical establishment, who knows what they can and cannot tolerate, is not afraid to speak up for herself, and has a husband who will not hesitate to intervene, too. I've been doing this almost literally my entire life, I feel if nothing else I have earned the right to have these procedures done my own way.

I think with evals there is some intangible factor that comes into play, you will get a sense of whether or not you and these people have the same approach to illness. I use my experience as an example for my kids all the time. I could have just stayed with USC (*shudder*) or UCSF (love them but was never practical) or Madison (*shudder*) or Cedars (indifferent) but this was such a massive part of my life back then, I had to keep looking for the perfect place for myself, and I am so lucky to have been able to do that as I know full well not everyone can. I am also so lucky to have found my doctor at Northwestern; I am convinced he is the absolute best in the world.

[RichardMEL]

Yes, the testing can seem endless, and maybe repeating the same thing a few times - but the way I saw/see it is that it is all to benefit YOU in the end isn't it? Sure, it's frustrating, time consuming, and so on, but better than just picking a kidney at random and sticking it in It has to be right for YOU (by right I mean "best match") and the only way to figure that out is to do all this testing.

And if you think the testing is frustrating, you must be aware that waiting on the list, past the testing, can be just as frustrating in its own way - when you have no idea of where you are at and a call could come in 10 minutes or, seriously, in 10 years. That is the nature of the best I'm afraid.

Cariad gives very good advice (as usual) and try to take the intent to heart as being a good one.

And on the idea of wanting the kidney to be the "5-10 year one" - don't we all!! That's the lottery we play... that is the lottery I am still playing 3 years into my own transplant. Nobody really knows just when or how. You can have some idea based on how you go from labs to labs, but there's no guarantees. The way I look at it is each day is a gift. Each day where I'm not faced with that machine is a bonus.. and the longer I get to enjoy these freedoms, the more grateful I am. That's just me though.

Still medical science is improving in leaps and bounds, medications and treatments are ever improving life expectancy of transplants, and that is very positive for all of us.

3 weeks ago I met a man who was living with a kidney from his mother. He is 31 years in and doing great. That inspires me!

best wishes,
richard

[Dman73]

Don't forget, the testing is not black and/or white and like the movie "The Right Stuff" they are trying to psych you out and push you to the limits to see how you react and if you are compliant.

You will win however because you know their game and you've read the posts from people who have been through it on IHD. Be patient and positive as it will all be a memory when you are doing your favorite thing and nursing a Big Gulp.

[MooseMom]

I feel very bad for all of you who had such a terrible time...  Cariad, especially you, since you had such a bad time at Madison whereas I had a brilliant experience with them.  Maybe they changed their attitude over time.

I guess I am just lucky because I never felt like anyone was trying to psych me out or push me to the limits.  I never felt resentful or offput by anything about the whole process.  Perhaps I just had the good luck of being seen by people who treated me with respect and even good humor.  Or maybe I was just a good little soldier who didn't really care about anything but getting a transplant and avoiding dialysis.  My case was pretty straightforward; there was nothing special or complicated about me.  I'm pretty simple.  Maybe that worked to my advantage.

I hope that you, seaweed, will go into this process with a modicum of good grace.  If you go in burdened with resentment and cynicism fueled by what you've read here, you will not have a pleasant experience.  Good luck to you!