Letter to my donor family

[robin]

I decided to remove this...just because. Kat kind of opened my eyes that this may not be something I want to be "everywhere", though I considered this to me more personal. Love to each of you...keep your spirits high...robin


     



   

[MissyMouse]

Wow ... that's all I can say ...

Wow

Mouse

[Betty W.]

Robin, what a beautiful heartfelt message. I read it two times you could feel the words coming straight from you heart.
The donor family should certainly appreciate the thought. I know I did !!! and I had NOTHING to do with it.
Love and Prayer, Betty

Thanks for sharing

[Squeaker1]

My Dear Robin,

That was an absolutely BEAUTIFUL letter.  I dont know how the donor family can not read into it, the heartfelt words you had to say.  We too, your friends, are so lucky and happy to have had you be able to receive this wonderful gift from them. 

We LOVE you Miss Bobbin Robin.......

Squeaker

[DougV]

Robin,

I'm glad you posted this.  I need to write the same letter myself, excepting I recieved a cornea instead of a liver.  I've been waiting, or is that putting it off, until the doc was satisfied everything is healed.  That will probably occur withing the next month or two. 

So thanks both for the ideas in your letters, of which I shall unashamedly steal, and for reminding me I need to do the same.

Doug

[robin]

Wow, Doug...never knew you had received a cornea. How great is that? Do you have to take any anti-rejection meds for it? I've seen them remove eyes for corneal transplants but you are the first recipient I've known. How long has it been since you received your gift of sight? Do you wish to meet your donor family? Keep your spirits high...robin

[DougV]

Robin,

Got it I think it was a year ago last March.  Takes forever to heal up as there is no blood flow to that area.  I had RK surgery to correct vision almost 20 years ago.  Cutting edge back then, long term effects not so good.  I ended up with badly misshappen cornea and really bad irregular astigmatism.  Depended on what angle I looked out of my eye how many images I would see.  Almost like the old TV idea of what it would look like looking through an insects eyes, excepting most of the multiple images were faint.  Left eye was almost unusable.  Right eye is bad but functional.  (Also had cataract removed at same time as TP.)  Now left eye can easily be corrected to 20/20.  Still some astigmatism but regular and therefore manageable now.

And yes I do take an anti-rejection drug and like you will for the rest of my life.  BUT, unlike your meds mine is a breeze.  Single eyedrop once a day.  And because my TP is on the surface even if there are ever any rejection issues they tend to be able to deal with it pretty easily by changing meds.

And would I like to meet the donors family, yes I would.  I know virtually nothing about the donor.  I gathered young adult.  I wish I new everything about the donor.  You know even better then me as yours was a life or death issue, but someone died to save my vision and even in death they thought enough of their fellow man to donate the last of what they had.  And that's a person I'd like to know more about.

And ya know I'm really pissed I can no longer donate.  I can see where no one would want my liver, but rest of my parts are in good shape, seems like there are probably tons of people who would take an additional five or ten years even at the cost of getting hep.  I think people should be given a choice.  You know, hey we gotta heart and it's good, but if we put it in you there is no doubt you'll end up with hep which may or may not kill you in twenty years.  So you wanna go now or you wanna worry about hep later.  I know what my choice would be.  And you can't tell me there aren't heppers that could use a part or two if I go.  To me the only way you or I can repay the gifts we have been given is in kind and we are not allowed to do that.  Pisses me off.

Doug

[robin]

Hey Doug...corneal transplants may come for elderly people as well. The ones I have seen have been all geriatric. Most pediatric cases are done at pediatric hospitals and they retrieve more than just the corneas. With the elderly, the cornea is often the only organ that is usable. How did I miss all that going on with you? I'm always amazed at how much I lost due to crazy ammonia levels.

I have been told that there are instances where they will consider using an organ that the donor is Hep C positive. It is usually a patient that has Hep C but then...that is the leading cause of liver transplant now. Think about it, the retrievals I've witnessed, they did no testing at the time but depend on a few key questions to determine if the "person" is a suitable donor. I was told that I ran the risk of HIV exposure and other communicable disease when they did my work-up.

Is there a process you are aware of to contact your donor family? I wrote my letter with no identifying information and sent it to my transplant coordinator who will forward it to UNOS. UNOS will send it to my donor family and if they wish to have contact, they will contact UNOS who will send me the forms so I can return them with my contact information. Lots of circles there.

I've got a good idea...down to two people that I think was my donor (both men) and I found on a piece of paper that my organ was from a male cadaver. I hope to make contact with my family.

Best of luck with you Doug and always keep your spirits high...robin 

[DougV]

Robin,

I didn't say a whole lot about getting a TP anyway.  Plus well, that was a few months before you got your liver, and let's just say some of your posts during that time were ahhhh, interesting. 

I don't remember the deal now but somehow I was told it was a young adult, but no other info.  It was the fourth cornea offered, first three were refused.  Problem with me was due to irregular shape of cornea replacement was much more difficult then normal.  Took an extra hour or so. 

Process for me contacting donor is roughly the same as yours.  I can see why they protect the donors family like they do.

And you still feeling good?  Sure hope so.

Doug

[Hank's mom]

Oh Robin - I hope that I can be when/if I TP. Though the family might have mixed feeling still depending on the phase of grief they are at - I cannot conceive of the heartbreak they went thru then followed immediately by doing the right thing/honoring the wishes of their loved one, but I think you wrote from your great heart and with the utmost respect to feel good as human beings.

Doug - I was told that I can get a liver from a hepper (considered a less than perfect scenario) since I already have HCV - but as is the case with typing the blood, the genotype etc., and as Robin said, making sure the liver doesn't also have HIV, HBA or B, or some other blood-born disease. No, it's not ideal, but if you have a tp team that is to be trusted - YIKES, if you didn't - so yeah, bring on the good parts, just before necessary.  

Be well,
Susie

[robin]

Susie...can you believe that Doug thought I had some interesting posts?  Gee, I love you people!!! I wish I could find someone that I sent an e-mail to when I was totally ammonia'ed up. It was like reading Old English and it is true, if you have an idea of what you are reading...it doesn't have to be readable or make sense...you can figure it out.

I'm happy that things have worked out with your cornea, Doug. Even though they act like they don't let us know anything about out donors, I know mine was a male. Yesterday I was talking with the coordinator and mentioned one of two options I felt were my donor (both cases documented) and one I specifically feel attached to and she said...you know you can write the family and I replied, you should get my letter tomorrow for them. So...thinking that I was right on with my intuition.

Susie...hope it turns out as easy for you as it was for me when time comes for them to call your name. Try not to have your phone line tied up at 3am posting online where they have to notify your extended family and have the police pay you a late night call.  Keep your spirits high...robin 

[debugz]

Robin...you are such a sweet soul.  Knowing you is our great gift and your donor family gave all of us out here that privilage. Hang in there my friend. We thank your donor family from the bottom of our hearts too.  If I end up doing the TP thing, I know I will feel that bitter-sweet gratitude that you spoke of as well-such a miracle at such a cost.

Love you Robin,

Diana

[Angel]

ROBIN
          WHAT A BEAUTIFUL LETTER AND WELL WRITTEN !!!! i'M SURE THE DONAR FAMILY WILL HAVE SOME COMFORT FROM YOUR LETTER !!! I AM SO HAPPY THAT YOU DID SO VERY VERY WELL... I PRAY THAT WHEN MY TIME COMES I DO AS WELL TOO YOUR EXPERENCE WITH THE TP HAS CALMED MY NERVES SOME AND I AM TRYING TO KEEP POSITIVE !!! GOD BLESS YOU ROBIN AND I KNOW HE HAS...BE WELL AND HAPPY   
                                                                                   ANGEL

[robin]

Thank you for your kind words, Diana and Angel. It is indeed a wild journey to transplant and initially, I didn't think I would survive it. Many times I questioned whether quality of life would ever come and I will say that I wish I had been better informed going into it but now I can understand what Hank (who posts here at times) was saying.

My wishes are to meet my donor family so hopefully my letter will allow them to make that decision. It is all in their hands as to whether we will meet.

I hope neither of you have to face the decision of transplant. I won't say I regret my actions in having a trasnplant but I will say, I don't think I would do it again. Keep your spirits high...robin 

[DougV]

Robin,

You really don't think you'd do it again?  May I ask why?

As you know I've failed tx twice.  I'm at that point where I'm healthy but need to start giving at least some thought as to what is next so I have to admit I am really curious as to why you might not do it again.

Doug