Donation

[laurielee]

About three years ago I logged into this website constantly.  Looking for answers to my questions on health problems from being a kidney donor with complications.  Gained alot of friends, especially Donna Luebke.  My frustration from my health issues took me away from this site, and chose to become silent about my health problems and pretend it wasnt there.  Which, the transplant doctors and other specialists told me it was just a "mind over matter" thing.  So, a few days back I  register to this site again, my memory didnt allow me to remember my old user name, lol.  I thought I had been off here long enough that I was emotionally stronger, and at a good place in my soul concerning the donation. Oh how I deceived myself. In fact, I think I have ANGER that has truly built up, and maybe just going out into a huge field and screaming might help relieve it all.  Reading about others complications, or their wondering if something is wrong, just brought back so many emotions that I sit here again wondering just how to get past it all.  When your in such pain everyday, and your body has deformities now, and a transplant center that turned you away over and over, tell me, how do I let it go?   I have heard so many times "Everything happens for a reason", I cant find a good or bad reason for this.  Just pure cruelty, and I DONT UNDERSTAND why I deserved this.

[Fr Pat]

Dear "Laurielee",
     I believe that I remember your past postings, unless the name change has me confused. As there are always new members checking in here looking for information, perhaps it would be helpful to them if you posted a link to your full stury, or described it again (although I imagine that it may feel frustrating to write it up again). There are new members here who are not aware of what you have been going through and would find it helpful both in making their donation decisions and in dealing with any post-donation problems.
     Thanks for coming back.
           Fr. Pat

[brenda]

Laurie Lee,

I too have had a bad outcome due to my donation and I also dropped out of sight until tonight - in my case for just a few months. I don't want to rain on others' happiness, but frequently reading the cherry posts here makes me want to scream at new members to NOT DO IT!  Similar to your note, I have found my transplant center (Georgetown University Hospital) treats me like I am either a histrionic woman or a bad patient because of my current health concerns (7 months after donation my GFR ranges from 37 to 42. That's where it should be for a donor who is in her 80's.)  I do not believe things happen for a reason; I believe we try to take what we can from them but that is not always possible or positive. Feel free to e-mail me directly.

Brenda

[mom2three]

I agree with Fr. Pat that it would be helpful to hear the stories of Brenda and LaurieLee who had complications from their donations. For those of us who haven't been LDO Forum members for years and years, it would be a reality check that not all donations go without a hitch. Please post your stories.  For people considering donation, they should have the advantage of hearing both sides and making an informed decision. Thanks.

[Orchidlady]

Agree. When I first joined the forum  4 years ago, all I saw were the good things. Everyone was so "rah rah" about donation and couldn't wait for their day to come, that I almost didn't return to the site. I was scared out of my wits, and felt like there was something wrong with me because I was so worried about the surgery and no one else seemed to be worried at all.

It is good to have both the good and the bad to review as part of the decision process.

[Aries7]

Laurielee and Brenda,

I also agree. The risks and complications are very real and can and do arise. If you are comfortable sharing your stories, I think it would be a great benefit to others. Please know I am wishing you both all the very best.

Linda

[Scott337]

I'm only less than a year here and donor only since fall 2010 so excuse my ignorance or naïvety but is there not a national organization that can help advocate for those of us who have complications and especially who are having trouble with securing adequate follow-up by our transplant centers.

It's great having information, positive or negative regarding making an informed decision about donation, but once the decision is made (informed or not) as I'm guessing both Brenda and Laurielee did due diligence in becoming as informed as they could prior to deciding to donate, who advocates for us in these cases where something goes wrong.  Certainly we recognize that not all transplant centers, surgeons or conditions of donation are equal.

I know that there are generally advocates inside most transplant centers that are assigned for both donor and recipient, but in cases where a grievance may be with the center or staff themselves, who advocates for us.

Finally, if there is no such advocacy, shouldn't there be?

Scott   

[lawphi]

Scott, you hit the nail on the head.  Not all transplant centers are equal.  My husband and I went through three different centers and I would strongly urge patients to avoid one nationally recognized center (low 20's in Nephrology). 

Some centers perform this surgery several times a week, while others do it a few times a year. 

[brenda]

Tonight I don't want to go into the many problems which occurred before and after my donation, but the primary issue is that my post-donation kidney function is too low. It is where a donor's GFR should minimally be at age 80. Although Georgetown University Hospital's response has been appalling, the fact is there is nothing to be done.  No amount of advocacy or even decently polite medical providers can improve or replace my kidney function.  I am not diabetic, my blood pressure is low, and I have no known kidney disease to treat.  I just didn't have enough kidney reserve to donate one of my two.  My recipient is in a similar position - her GFR with my donated kidney is lower than her pre-transplant GFR. 

In my case, the only advocate work to be done now is to push for national standards - and high ones - for future donors.  The recently published articles from Mayo and Hopkins touting the "safety" of donations from "marginal donors" (donors with high blood pressure, donors who are obese, etc.) do not have adequate length of time in followup and they encourage other centers to play fast and loose with donor criteria.  You can only imagine how I shudder when I read posts here wherein a potential donor asks how she can improve her labs to meet a cutoff she has missed in the first round of testing. 

I appreciate - more than you can know - this message board and all of your support. Please do not join the current fad of cheerily promoting living donation as a routinely safe procedure.  I believe the best work we can do for people with kidney disease is to support cadaver donation, health promotion to reduce diabetes/obesity, and research in kidney disease.  I personally no longer support living donation for anyone, though I certainly understand deciding to go through with it out of love for others.

It's been a really long day here - take care of yourselves.
Brenda

[Oldnslow]

Brenda & Lauralee,

I feel devastated by your experience.   I know I've been one of the lucky ones as has my brother (recipient).   I will say that I saw a noticeable difference in the screening and treatment of me as a donor between Henry Ford and Clarion.   Clarion took  the time to answer questions, follow-up, and they did go through a long list of possible complications that would have included what you have experienced.  Because it was my brother I proceeded.   My wife was seriously frightened, and is still nervous about my health which has been very good.   I  do feel extremely fortunate that all  has worked  out well in our case.

In your follow-up, has the transplant center been able to  isolate anything that would have been an indicator of the difficulty you've experienced?

Thanks
Oldnslow

[jennybebopper]

Brenda,

Thank you for sharing your story.  I'm sure it is frustrating to rehash details of such an experience, but it is truly valuable to those of us still on the decision-making side of this issue.  I'm sorry that your post-donation experience has not gone well, I wish the best for you here on out.  Thanks again.

Jenny