Considering Donation... thoughts? advice? etc?

[Aikaterini]

Hey guys!  My dad has polycystic kidneys and is rejecting his last transplanted kidney (it lasted him 18 years... not bad).  When he first started rejecting I immediately offered him one of my kidneys and he freaked out and told me to never bring it up again so I dropped it.  Well this weekend I went home for a visit and he brought it up.  Apparently he talked to a doctor that finally made him see it from my point of view and he got to thinking about how his life could have been different if he could have donated to his dad (who died from Polycystic kidneys when my dad was 2).

Well now I'm the one dragging my feet.  When he first brought it up again I went to my ob/gyn and asked if it would impact me having kids one day.  She said it wouldn't that if I had a complication like preeclampsia they would just treat it and watch it more carefully than if I had two kidneys so I was all ready to start the testing.  Then my mom started bringing up more questions (like how she read a pamphlet on how life expectancy for the recipients increases but decreases for the donors), and I started looking on here and sites mentioned on here and saw some other stuff (like the decreased energy levels, the forgetfulness I read on another site, etc, etc).  Now I'm really dragging my feet about this.   Side note:  My dad is being wonderful with this. He says if I don't want to do it, even if they're wheeling us into the OR, just say the word and we'll stop.  He's also trying to get me as much information as he can and as many people to talk to as he can.

Here's my hang up.  I'm 24 and in relatively good health.  I am prone to migraines but that's about it as far as health goes.  I have one more check up before they rule me out as having polycystic kidneys.  I'm type O- blood so I already know that that test would work out.  I'm starting my career as a teacher.  I'm scared because if I have any of these complications (which one site stated was a 20% likelihood) I have the majority of my life with them.  It would be difficult to be a teacher and constantly forget stuff, or be too tired to function in the classroom.  Plus if any of this stuff happened after I gave my dad a kidney not only would I have to live with the health complications but he would blame himself for it too.  So while I am still thinking about donating to him, I'm worried, I also feel very selfish.  I also don't want to proceed with the testing until I am pretty sure I would go through with it. 

Any advice, thoughts, or anything else is welcome.  Thanks in advance for your help.

[Aikaterini]

I guess what I'm looking for is how likely it seems to be that I wouldn't be healthy enough to have a normal life after the donation.  Also whether or not my mom's pamphlet is right.  I know there's not a lot of information out there on how donation affects the donors but still.  Then any and all other information, advice, and thoughts.  Just realized my first post rambled a bit.

[tjhurley]

Who is the source of mom's pamphlet? I wrote that first because I don't want to forget to ask:) I am surprised they didn't test you first of all for polycystic.

Listen, it's okay to not donate your kidney. You are quite young, it's an exciting time for you. When you initially offered you may have been in a different place in your life. Your best interests are what your parents want more than anything. You should not feel guilty if you decide to not donate at this time. It's okay, it's important to listen to yourself regardless of facts and percentages. It is okay to not donate. Best of luck to you, Janet

[sherri]

Being a family donor is very difficult for all the reasons you mention. You love your Dad and want to see him well but at the same time, a family donor like a child or sibling shares some of the same genes and family history. I know as a sibling donor this was a very hard decision. I'm glad you are thinking about it and I believe your father really means it when he says you are not obligated. He will love you just for offering and maybe even feel a little relieved. There may be other relatives or friends who may be interested if your Dad's need is made public. One only needs to be compatible not identical so there may be other potential donors like spouse, siblings, friends etc. Donors are also now considered even into their 60's so one doesn't have to be young like you. There are a quite a few "older" donors on this forum who post. So if you decide donation surgery isn't for you, you can still help your Dad by advocating for him. There may even be a potential donor who is not compatible but willing to enter into a paired exchange. Lots of options to consider.

I also was curious to know what pamphlet your Mom got where it says that life expectancy increases for the recipient but decreases for the donor. There may be complications from any surgery including donor nephrectomy and some donors have suffered complications like bleeding, infection and even death in rare cases. But I personally have never read a study that says donors live less than recipients. If anything the research out there is that donors live longer than the general population because they are screened to make sure they are healthy enough to live with one kidney. Perhaps something was misunderstood.

The best thing you can do is to keep educating yourself. Talk to other young donors and see if this is something you feel comfortable with. You may also like to read the book called The Reluctant Donor by Suzanne Ruff. You can get it on amazon.com. Suzanne also has a family history of PKD and many of her relatives died before transplant and even dialysis was available. She tells a very real story.

All the best,

Sherri

[Fr Pat]

     I just wanted to support what Sherri posted above. While you continue to get well informed and to think things over carefully, work with your dad to make sure that his friends, co-workers, neighbors, alumni, church/synagogue members, club memebrs, etc. know of his need and of the possibility of living donation. This does mean giving up some privacy, but can be worth it. There may be a good donor of his own age right around the corner who would gladly step forward once the need were known. Some folks have received a kidney from their waiter, manecurist, bar-tender, grumpy neighbor, etc. as soon as the need was communicated. You could stand by as a "back-up" should this second transplant eventually fail years from now. I think your Dad would be happy to find a donor who (because of age and family status) might be better able to handle negative after-effects IF they should happen. So don't feel that you are the ONLY option.
   best wishes,
      Fr. Pat

[Aikaterini]

Thanks everyone for your thoughts and assurances that it is ok for me not to go through with this.  I'm still thinking about it but it's nice to know that it's really not selfish for me to be dragging my feet on this.  I'll find out what that pamphlet is from my mom. 

Also, at this point it's either me or a deceased donor for my dad.  He refuses to tell anyone about his need and gets upset when we do because he doesn't want people to know.  In fact when he and I were talking about things we would expect if I did give a kidney to him that was one of the things we talked about because I would want some people close to me to be aware of it, etc.  Also out of the family he's said he won't take one from my mom or uncle (his brother) because of health problems, my brothers because of family obligations, and refuses to ask anyone else. 

Luckily he is handling peritoneal dialysis MUCH better than he did hemodialysis so I have time to think about it and research without him suffering too much.  I know it's still not a fun life but at least it's better than hemo is for him.

[sherri]

Glad to hear your Dad is doing peritoneal dialysis. I have seen several patients on PD and they all seem to be quite satisfied with this method. My husband teaches at University of Maryland Dental School in the special patient care clinic. There is a regular patient on PD who comes for treatment to the clinic. My husband says his students usually know little to nothing about renal disease and dialysis options and this 77 year old gentleman teaches them all about PD, shows them his BP logs and explains everything about the process. He is doing quite well and feels in control of his treatment. Your Dad may be able to continue leading a very productive life on PD until a deceased transplant becomes available or if he changes his mind about making his need known.

 If he prefers not to become a known recipient to the community then I guess he made his decision about living transplant. You can also let him know that by not broadening his options it puts you in a very difficult and coercive situation because it means you or nobody.  He can also make his need known anonymously. In my community there have been several recipients who received kidneys from non related donors because their need was made public but their identity was not revealed until the donor had passed all the tests. A member of the clergy often represented to the recipient and let the community and congregation know that there was someone in the community in need without revealing their identity.

Keep us posted and let us know how things progress.

Sherri