Transplant before starting dialysis

[sgcline]

My sister is a match for for me.  She just had what we think is her last appointment for testing to be a donor.  I have not started dialysis yet but do have a fistula.  I found out I had kidney failure in Oct 2009.  My numbers have remained study over the past year.  My doctor has been pleasantly surprised.  Because my numbers have been so steady, the doctor said it's a guessing game on how long before I would need dialysis.  I've been told having a transplant now is the best possible situation.  Has anyone else had this situation?  Did you go ahead with the transplant or wait until dialysis to have the transplant?

My sister has to boys (2nd grade & 5th grade)  I don't have any kids.   I worry more for her then I do for myself.

[MooseMom]

I have not been in your situation (I wish I were!!), but if your doctor is telling you that having a transplant now is the best possible situation, it's for a good reason.  Pre-emptive transplantation is the BEST treatment for ESRD for MOST people.  Why would you possibly wait until you were so sick that you'd have to go on dialysis before accepting a transplant?  I'm sorry, but that just doesn't make sense.  Why leave it to fate?  Why play this guessing game if you don't have to?  If you wait, there's a chance that your sister may become ineligible to donate for some random reason...one of her boys gets sick or she's in an accident or some other awful thing that will make all of you regret waiting.

While any surgery carries risk, your sister would actually be at greater risk having another pregnancy and delivery than having a kidney removed laproscopically.  When I was pregnant, I was in the hospital for 6 weeks, and I saw all kinds of awful things that can happen to pregnant women, and that's even before they actually go into labor and then give birth!  Did you worry for her during her two pregnancies?  While I would not want to minimize the importance of donating a kidney, it's a tea party compared to pregnancy and childbirth.

And if you want to talk about risk...well, dialysis is filled with risk each and every time you have a treatment.  Why subject your body to that?  The bottom line is that right now, this moment, you are in the best shape you will ever be for successfully enduring a major operation.  I don't know by your post, but if you are like the rest of us, your kidneys are not going to get any better, so you will not be getting any healthier.

You are truly, truly blessed to have the opportunity to save yourself from D.  I would sell my soul to have your problem.  So many of us have family members who don't give a 4x and are quite content to leave us to our doom.  God and your sister are handing you your life on a silver platter.  Take it, thank your sister from the bottom of your heart, live your life and make her proud.  Be a great uncle to her boys.  Find a way to help someone in need.  Be happy.  Don't be like me and become your own worst enemy.

[lola]

Otto had his 1st transplant without ever doing Dialysis, his Dr's claim it's the way to go as sometimes your body wants to have the dialysis instead of transplant so the kidney can take time to "kick" in.... FYI Otto was back to work FULL time in 2 weeks after his 1st......

[okarol]

If I were you I would get a transplant and skip dialysis, if it's an option. Why wait until you're so sick that you need life support? But that's my opinion, you should ask your transplant team if they recommend a pre-emptive transplant, and at what GFR they think is appropriate.

[sgcline]

Thanks for the advice.  I don't feel sick, so it's hard to remember some times that I am sick.  I am more worried about my sister then myself.  My doctor and transplant team are both saying it's the perfect situation.  I just needed to hear it from someone else.  I need to trust my doctor and team.  Thanks again!!

[MooseMom]

Thanks for the advice.  I don't feel sick, so it's hard to remember some times that I am sick.  I am more worried about my sister then myself.  My doctor and transplant team are both saying it's the perfect situation.  I just needed to hear it from someone else.  I need to trust my doctor and team.  Thanks again!!

When you say that you are more worried about your sister, why is that, if I may ask?  Are you worried about the surgery, or is there something else?  If it is just the surgery, well, think about how worried your sister must be about YOU!  Donating a kidney is nothing compared to life on dialysis; I'm sure your sister is much more concerned about you!

I look forward to hearing more details about your upcoming transplant!!!!  "Perfect" situations are so rare...you are so incredibly fortunate!

[kellyt]

Get that transplant!   Screw dialysis!   

[cariad]

I want to say this carefully because I do not want to come across as annoyed (I'm not) nor offend anyone, but I would seriously wonder about someone who doesn't worry about their donor (especially someone close to that person) more than themselves. Being a donor is an individual experience, like pregnancy or anything else involving your unique system, donation is almost always harder on donors than recipients, and has led to death in at least two cases I can think of off the top of my head. (there have been more, but I try to avoid those deeply tragic stories). Also, I can remember at least one posting from a donor who ended up losing her other kidney and undergoing a failed transplant herself. The recipient was her father - can you IMAGINE??!! These are real risks that donors face, and the big difference is that having kids or undergoing surgery to benefit yourself is leagues away from what a donor is doing. My donors both suffered more than most, but I would argue that spending 6 weeks in hospital after labour and delivery is highly unusual and is suffering more than most as well. I don't see the point in comparing people's suffering - it only ends in someone feeling minimised. Live donors are stepping up to do an incredible thing. Nephrectomies HURT. I fear getting my transplant taken out because it is so often an excruciating process.

Both of my donors went through a lot of pain to donate to me. I would never, ever say it was 'nothing', not even in comparison to dialysis. (very few people spend a lifetime on dialysis if they are able to get a transplant, so the options in this case are surely take a live donor or wait on the list).

I am obviously very close to this subject, and like I said, I am *not* offended and certainly do not mean to offend. I just know, sgcline, that your feelings are normal and expected and I went through exactly the same things myself, along with the guilt and the burning desire to broadcast to the world that my husband is simply amazing! (still in that last phase at the moment)

Good luck with your decision and your eventual transplant!

[MooseMom]

Thank you so much for that post, cariad.  Of course, worrying about your donor is, I would hope, a normal and desired response, and you are right, donation is an individual experience that could either go swimmingly, catastrophically or somewhere in between.  I apologize if I seemed to minimize the incredible gift and sacrifice shown by a donor.  However, I am not sure I understand how donation is almost always harder on donors than recipients.  Could you explain more about this?

As for my experience with pregancy and my hospital stay, since pregnancy/delivery is such an every day occurrence, we lose sight of the very real risks involved.  When pregnancy goes wrong, it goes horribly wrong.  I sat in that hospital long enough to learn that pregnancy, while a "normal" process, is a dangerous thing when it does not go normally.  The stories I could tell you about all the women I encountered and the problems they presented...it would be a good birth control method.  The fact that you perhaps chose to become pregnant or somehow expected to benefit from carrying a child becomes rather irrelevant when the process nearly costs you your life.  Your expectations don't somehow make the suffering easier to bear or more "acceptable" in some way.

Would you have decided that your worry over Gwyn would probably have made you decide to wait until you had to go on dialysis?  What would you have done in the poster's position?

[Sax-O-Trix]

I am hoping for a pre-emptive transplant in the next 8 weeks or so.  I am at 15% GFR, have been at 15% since July.  I was at 20% this time last year.  I have not had any surgeries to prepare for dialysis (no fistula or pd cath, yet)  Other than some very recent "brain fog"  (I can't think of the right words sometimes and seem to be more forgetful than usual these days) and I tend to fall asleep at 8pm, I feel pretty good overall.  Knock on wood.  Yet...

A sister and a brother stepped up to be tested.   I was lucky as both were matches.  My 55 year old sister was a 0/6 antigen, but was the first to go through the initial testing.  She stopped testing after the first day because the social worker didn't like the fact that her husband was not in favor of her donating and she is my children's guardian should something happen to me.  Pretty lame on a certain level, but okay.  Many spouses donate to each other, so the guardian thing doesn't hold water...

So, my 60 year old brother, a 3/6 antigen match, then went through all the hideous tests and seems to have passed everything.  We are waiting word from the team as to whether or not he has the final approval.  I am not counting my chickens before they hatch, just hoping we get to schedule the surgery the first week of Feb. 2011.  My neph told me at my Nov. appointment that we would schedule the surgery for after the 1st of the year "at your and your brother's convenience" if my brother passed his last test (which he did pass.) We'll see...

Do I feel guilty about all of this?  You bet!  I feel about 2 inches tall.  I wish more than anything that I didn't need for him to risk his life to save mine.  The fact is, I am a widowed parent of two minor aged children, one with Asperger's (high functioning autism).  My kids have already lost one parent, so I have to accept the fact that my brother is willing to help me and accept that offer graciously to give my kids the best opportunity to have at least one parent.  When push comes to shove, I am going to do whatever it takes to be here for my kids.

I understand your reservations.  Talk with your sister about your concerns and if she is still willing to donate, then go for it.  Good luck with your decision and potential transplant!

MM - it's my understanding that the actual surgery and recovery is harder physically on the donor than the recipient...  Something about the location of where the the donor kidney is extracted from (deep within the body) v.s. location of where the kidney is placed in the recipient.

[MooseMom]

Sax-o-trix, my son has high functioning autism, too, and I know that puts extra pressure on anyone who also has to deal with CKD.   My thoughts are with you.  There is nothing more difficult than watching your child struggle with something like autism.  And yes, you have to do everything you can to be there for your kids.  Wanting a pre-emptive transplant isn't the epitome of selfishness; while it is certainly true that others may sacrifice for your survival, still others need you to survive.

Your brother, if he does donate, is doing more than saving your life.  He is also ensuring that your kids have a parent.  These sorts of choices are never made in a vacuum; so many decisions, so much to think about, so much to risk yet so much to gain.  While guilt can be hard to live with, I suspect you would feel equally guilty if you did not do what you could to be there for your kids.

I hope all goes well for you.  As Cariad pointed out, you seem to be feeling what most people feel in your position.  So many, many people...myself included...would so love to have the opportunity that you have.  My own son is worried that I may die soon, and it breaks my heart to know that he just might be right.  I wish someone would step up for me and my son.  I know the time is coming when I won't be able to be there for him in the way that I would like.

[cariad]

Thank you so much for that post, cariad.  Of course, worrying about your donor is, I would hope, a normal and desired response, and you are right, donation is an individual experience that could either go swimmingly, catastrophically or somewhere in between.  I apologize if I seemed to minimize the incredible gift and sacrifice shown by a donor.  However, I am not sure I understand how donation is almost always harder on donors than recipients.  Could you explain more about this?

As for my experience with pregancy and my hospital stay, since pregnancy/delivery is such an every day occurrence, we lose sight of the very real risks involved.  When pregnancy goes wrong, it goes horribly wrong.  I sat in that hospital long enough to learn that pregnancy, while a "normal" process, is a dangerous thing when it does not go normally.  The stories I could tell you about all the women I encountered and the problems they presented...it would be a good birth control method.  The fact that you perhaps chose to become pregnant or somehow expected to benefit from carrying a child becomes rather irrelevant when the process nearly costs you your life.  Your expectations don't somehow make the suffering easier to bear or more "acceptable" in some way.

Would you have decided that your worry over Gwyn would probably have made you decide to wait until you had to go on dialysis?  What would you have done in the poster's position?

Hey, MM - horrifying that you had to go through all of that. My roommate from prep school tripped and fell 2 months before her due date, spent a month in hospital before having her daughter a month early, and then probably had to stay a while after delivery. Don't think she was ever in danger of dying, but I imagine it was a shock for her, thinking, as you seem to have done, something like isn't this supposed to be a joyous experience? I was the mirror image of your experience. I heard the words 'high risk' so often that I burst into tears during delivery and made Gwyn promise that if I died in labour, that he would be OK. Of course, nothing happened and I left the hospital after the standard two days.

I think I was in sgcline's position, more or less, so I'll just summarize: I knew kidney failure was coming for a good five years. I did not feel overly ill, either, just really, really tired and occasionally would vomit, couldn't eat, whatever. Also given to nervous collapses. I was not on dialysis and felt absolutely bizarre getting a transplant without what I considered to be real proof that I needed this. Difficult to explain, but I almost asked my GP Am I really in kidney failure? I started to imagine that maybe this was in my head, and other slightly unbalanced thoughts. Really, the only proof I had were numbers on a page, and that seemed like thin evidence to proceed with a transplant. However, now that I am on the other side, I feel so damn magnificent all the time and realise that there was something to this kidney failure story. I am convinced I could have gone at least another year, maybe two, maybe much more. We'll never know, because of course, I did exactly what everyone is suggesting sgcline do - I accepted Gwyn's kidney preemptively. I thought it would be hard to do so graciously, and I am not saying I am any model of grace and poise (for that would be a whopping lie) but I am helped enormously by having such a great relationship with Gwyn. I would struggle accepting from an acquaintance or a stranger - I don't know what I would do or how I would react in that situation, but thankfully I will not be finding out.

I do think that rather than deny the feelings or try to reason them away, recipients would do well to confront them and discuss them with their prospective donors. I hope it helps anyone in this situation to consider that many, if not all, of us have walked this path before them. I discussed my fears endlessly with Gwyn and I know it drove him crazy, but it was the only way I felt a little relief. Then there is my personal experience - both of my donors suffered a lot, but both of my donors are alive and doing just fine today. If my first donor had died from complications, or had any other severely negative consequences, then I probably would be making a very different argument right now. (My first donor also donated bone marrow, it staggered him for almost a year and the recipient died long before he recovered. That was quite a disillusioning experience for him and those around him.) 

I have read your comments that donors get something out of this experience, too, MM, and I entirely agree. Gwyn certainly has things easier now that I have the energy to help around the house, I am working more or less full time, I don't walk around the house depressed and angry and given to bursting into tears without warning. His kids won't have to watch their mom suffer at length. There are plenty of benefits, but also a great deal of pain and risk.

I don't know exactly why it is harder on donors, but I imagine that with organs, it is quite a shock to the body to have something removed so suddenly, as opposed to having something added which does not seem to pose as many problems. I'd guess there would have to be an adjustment period in which the remaining kidney realises it is alone and has to compensate for that. I really do not know, though, perhaps it is more to do with positioning like Sax mentioned.

Sax, I know I've said this before, but I do think you and sgcline are making the right decisions. It is a struggle, I think, to get to a point where one is able to convince oneself that it is OK to accept this gift. I hope your brother can donate and that you and he come through the operation with ease.

[MooseMom]

I can safely say that I have never either denied or tried to reason my feelings away!   No, I blubber them all over the place.  If I ever am in the position of accepting a live donor kidney, I will remember your advice and confront my feelings.  I won't be getting an organ from my husband, so I suspect that if I WERE to get a donor kidney, it would be from someone I didn't know well, and I'm not sure I could comfortably discuss my feelings with them.  But maybe that is exactly what would be appropriate for me to do...hopefully, someday I might be confronted with that conundrum!

You know, what you said, cariad, about it seeming to be just a bunch of numbers on a page?  I have felt EXACTLY that!...that this was NOT really me.  Even my neph said this, so now I suspect it is a common occurrence...knowing you have CKD but not REALLY knowing it, right?  And I have often heard of people getting a transplant and suddenly realizing just how awful they had been feeling for so long.  But I am slowing coming to understand that I truly do not feel as I think I would feel if I had working kidneys, and it is really sad to have to just sit and wait to feel worse and worse.  I know I should allow myself to feel some hope; after all, I am on the waiting list and feel fortunate for that, but I don't think I have the courage to hope.  I've never once let myself imagine what life might be like after a transplant.  If I don't hope, then I can't be disappointed.

It is this mindset that makes me quite incredulous that anyone would think of turning down a kidney given by a loved one so that you could avoid dialysis.  I understand the guilt, and I understand the worry for the welfare of the donor, but accepting this wonderful gift takes a large amount of grace and a certain amount of humility, too.  That's not easy, but it's a problem I would welcome!

You always give me so much to think about, and your posts are always good guides.  I really value and appreciate that, cariad.

[cariad]

My own son is worried that I may die soon, and it breaks my heart to know that he just might be right.  I wish someone would step up for me and my son.  I know the time is coming when I won't be able to be there for him in the way that I would like.

Someone will step up for you both, MM, either someone like your doctor or the family of a person who has died prematurely. I know it's not the same as having a family member leap up and elbow their way to the front of the testing queue. Shame your husband has been excluded. It never even occurred to me that Gwyn could be excluded, so I guess I got extremely lucky that he breezed through the eval just as I'd pictured he would.

I had/have serious issues with my first donor. We argue a lot and end up just avoiding each other most of the time. I have never thanked him for his donation, and used to think he milked the story shamelessly. Going through this a second time, with a clearer view of what my first donor faced, I would say I have much more respect for him (though I don't see myself ever thanking him. Anyone who feels like judging, please keep it to yourself. I could explain all the factors for days and still not give a clear picture of this complicated situation).

There was a nurse who worked the night shift when I was in hospital for the week before my second transplant. I told her my story and she said "You are so blessed! You're loved." I took her comments in the spirit in which they were intended, but inwardly I was thinking Don't do that. Don't try to tell me I'm lucky or that I am so loved. A lucky person would not be here, and I've hardly been treated with love.

Now I see that much differently. Really, I do think I'm lucky in so many ways, and it was anger and fear at the time that soured that moment. I would be much more effusive and sincere if someone were to make those comments to me today, because I really see it now. I am hoping your chance comes soon, MM. For you and your son. 

Oh, I just read your next posting. Thank you, truly, MM. I often think I am just mindlessly babbling and boring people silly, so I really take it as a great compliment that you got something out of this particular ramble. I think it takes a huge amount of bravery to accept from a stranger, because like you said, how scary and awkward to discuss personal feelings with them.

I think you've really hit upon some very important truths in your coping strategy. I think we all need hope, we need to be brave enough to let ourselves hope, but I am utterly useless at this, so cannot help. I so understand the drive to do this to oneself. I am an accomplished pessimist and I tend to downplay everything and not tell anyone about any major possibilities in my life. I told no one about my pregnancies for fear I would miscarry and then have to go back and explian, I was not happy that Gwyn told my father about his job interview because I knew my father would phone every few days and ask, and if things had not worked out, who wants to field those questions. I get this self-preservation extinct. I know my transplant is going to last a good long time, probably for the rest of my life, but in most areas of life I have no confidence and am always shocked when anything goes right.  I feel like I cheated myself out of sharing a lot of excitement with others over what could be, and often what eventually came to pass. So, I have no decent tips on how to muster up the courage to change this behaviour. I think recognising it is an impressive first step, though.

[paris]

It is harder on the donor because they are a healthy person and  they have major surgery to remove an organ.  The recipient is sick and suddenly has a kidney that is working.   I admire anyone who would be tested, let alone donate.  People can be amazing.  I hope and pray that donors will be found for all who are waiting.  And pray especially for patience --- that is the hardest part!