Letter to my donor family

[robin]

Doug...I was not convinced of having a transplant was in my best interest before I was listed but felt obligated to go through with it because of my family. My feelings were mixed in that I had not cleared, I've had a good life and with the shortage of organs I felt perhaps it would be better allocated elsewhere.

But since organs are easily obtained in my state as it is a new program so not many listed, it happened and it has taken me 9 months to where I can say I've passed the point of totally regretting it. I still question if it was a good use of resources (both organs and finances) but since I'm past that part of the decision making process...will spend my time being grateful.

I would recommend (very strongly) that one do more research into the entire process. Part of my problems have stemmed from it being a new program. All the coordinators were fired and the new ones are much better. For a long time, I was on my "own" and it was only getting info from Hank that helped me understand everything. When you are sick, it is NOT the time to try to do intense research on transplant so maybe I missed the boat before I went to "board".

But, knowing what I do now, I am still comfortable with the fact that I have had a great life and have no regrets and that if "we" start to fail then I fought a heck of a battle but would not do it again, for anyone. Maybe this will change once my white count gets up enough to even consider treatment. They did stop my second "back-up" anti-rejection med because my whites are staying too low. They want me up to 4.0 without adding anything like Procrit...I was hanging around 2.1-2.4.

Most people I talk to would be more than eager to retransplant so I think it is only ME that has this feelinlg. I spent many years working with dying patients and have a different "feel" on it. I still have more fear of living than of dying. Crazy, probably. I am forever grateful to my donor because I feel that it was supposed to happen at this time in my life for some reason that I don't understand. It is a great thing to have happen to you...an unselfish gift that few will receive. I guess I should have been more ready for what to expect at the time and down the road.

I honestly thought I'd be back at 100% within about a month. I seriously was THAT uninformed and I'm a nurse. Goodness knows what a person who is confused would think, had they no medical background. I also had an extremely easy course after my liver. One lady I e-mail spent 2 months in the hospital after her's and then had home health for two months after she came home. I had everyone to my house for Christmas, put up a tree and cooked dinner at one month. LOL.

Keep your spirits high...robin   

[hanklive39]

Hi Robin, Hi everybody!!!

Do ya miss me? I didn't think so until I read this post, and must say that I was rather touched by your letter to your donor family

I'm speechless in response to you mentioning me in such a positive light However, it's you who really deserves praise for what you've managed to convey to your donor family in a way that I too wanted to help them understand a little bit about myself also, and how their relative did not die in vain... In fact their death was instrumental in saving a total strangers life that had all but given up on the possibility of receiving the "Gift of Life."

You probably know this already but, there are NO coincidences in life!!! at least that has been my experience so far ,and hopefully you've experienced that epiphany also. Why am I mentioning this???

Well, let's just say that a few minutes ago ,I was responding to another of your posts with respect to you asking us whether or not you've been acting or posting stuff that read a bit and I quote: "dingy" when just as I was about to post it a firefox update appeared and I unintentionally shut down my browser!!!
Wouldn't you know that I was complimenting you about how well you were being read as - since your transplant/transformation which I strongly believe happens but, that's another post in the future so, then I was not mad like I would've normally reacted if something like that happened to me in the past... Instead, I decided to get the browser opened up again as soon as I restarted the laptop, and when I did, this wonderful post appeared right before my eyes as if divine intervention took over, and I was suddenly being noticed by my higher power whom I choose to call "GOD!!!"

Well after that experience, I knew there wasn't any coincidence in reading this post, and beautiful letter you sent to your donor family!!!

Robin, you never fail to amaze me, and this is coming from someone who doesn't impress that easy so, consider the amplitude of my compliment to you and your beautiful , and revealing spirit which you managed so gracefully to transmit, and share with in the letter you to the Donor family!!!

I believe your letter should be used as a model to look upon by other folks who are wrestling with the very notion of writing to a donor family, and having a hard time coming up with something substantial to convey towards the donor family as heartfelt as you have - I really mean this!!! I hope UNOS selects your letter as a good example of what this type of letter should be composed of in order to help other post transplant recipients that are struggling with what to say to the donor family.

You've come a long way baby!!! May God continue to bless you the way he has because the lord knows, you also deserve it!!!

Btw, Thanksgiving is just around the corner Robin so, plan on celebrating two birthdays this year my DEAR FRIEND!!!

Now that I've got that written and out of the way, I would like to end this reply by briefly "esplainin" as Desi Arnez used to say in "I Love Lucy" as to why I've been scarce in participating, nad replying in this forum for some time... In case anyone is wondering, it's NOT because I couldn't post any pictures anymore because of a problem with the software that runs this website - ohhh no!!!!

The reason I haven't participated  in here as of late is because a whole bunch of changes for the better have occurred in my life in the past two months or so...
I was recently appointed the position of Senior Welding Instructor at a very reputable state technical college and have moved from Pittsburgh in order to accept the position and live in a new community that so far, has welcomed me with open arms!!!

I'm having a blast, and my health couldn't be better!!! For instance, My diabetes has virtually been eliminated by simply following a diet and exercise plan that has not only bought down my AC1 level down to 4, it has also helped me in losing 82 pounds off my body and let me share with you al something that I really need to do soon... I need to find a good tailor or seamstress because my clothes are just way too big on me nowadays!!! Hence, my body really appreciates the newly found feeling lighter!!! Say goodbye to SSDI!!! for now - that is!!! I've been working full time for two weeks now, and I feeeeelllll GGGRRRRRRRRRREATTTT!!!!! My liver just keeps hummming away as if it was always there in the first place, and the viral activity is so low that they may consider giving me a break so htat my body can take a short although, much needed vacation from some of the rather mild side effects of the combination therapy which has kept the "Dragon" at bay for quite some time now!!!

I do want to comment about why i too share your feeling with respect to having to go through another transplant but, as a courtesy to you Robin, I'll defer to your response first... I do have some very strong feeling with respect to this issue yet, I'll wait for your reply to DougV who I also hope is feeling better since his own transplant experience!!! 

However, this is your post Robin, and I just wanted to share with all of you how touched I was by Robin's letter, and give you all an update of what's been happening with me as of late so, I look foward to continued participation in also being a part of this family we have here!!! I do miss my fellow Heppers!!!!

Respectfully,
Henry
 

[Helen]

Wow Hank!

 Thats great news. You sound so happy, Im glad to see you back and posting. 

[Betty W.]

Hank, what a nice letter, and such good news. You have the right to feel good about what you have accomplished. I do appreciate you sharing you news with us..It makes me feel good when one of my friends has done well. Congratulations on your new adventure....
Love and preayers ..Betty

[MissyMouse]

Hank,

'Bout time ya showed your mug around here.     We always miss you when you're not around.

Mouse

[Hank's mom]

Hank aka Henry -

So very glad to hear of your happiness in the good things that found their way to you - Bout Time! (We always get to say bout time after now don't we?)

Susie

[robin]

WOW...GOOD for you Hank. Don't know if you have had time to catch up on posts, but there have been several references to you in other posts while you have been AWOL from the board. We do miss you.

I'm so excited that you are feeling as well as you are and have been offered and accepted a job promotion. Then it continues to get better by reading that your glucose is in better control, you are in dire need of a tailor (though if you were female...it would mean busting out the credit card and becoming a mall rat), and you are obviously feeling and we are seeing a NEW and IMPROVED "Hank". How great. I just can't express how happy I am that things are going so well.

Not sure how great the donor letter was but I hope it conveyed some of my feelings. I want to give credit since you bragged on the content, our "Emkins" did my proof-reading and corrected my commas and eliminated my redundant words so I didn't sound like a total Arkansas idiot. I mean, I wanted the letter to be my words...but corrected. LOL

Hank, did you write a letter to your family? I haven't found but one person who has made an attempt to write the donor family and they didn't hear anything from the letter. My TX coordinator didn't give me any kind of turn around time so far as an expected response but I suppose that is due to the length of time it might take the family to decide what they want to do.

I'm serious with my comment that you were my "mentor" so far as the entire transplant experience went. The journey would have been less positive had I not had your guidance. I'm pretty sure that either I would have had a major mental breakdown or my team would have had one but I would keep telling myself that I needed to give it at year. You were right but I still could do without some of the sides but I could do without all the sides of liver failure. I give my thanks to you, Hank. One thing about it, we share an experience that no one else can really understand the complexity of. I feel lucky to have not had a horrid time on treatment because if it had been anything like transplant, I would not consider it again. Being a recipient is absolutely the hardest thing I have ever done in my life.

Sitting here clapping my hands for you, Hank. I'm proud that your life is going so great and I'm proud to be your "lil sis" in the liver department. Big hugs... and always keep your spirits high...robin         

[hanklive39]

YA'ALL ARE THE BEST!!!!!!

THANKS FOR THOSE WARM REPLIES

I'm going to try my best to slowly be a regular participant here just as soon as I get totally settled in my new surroundings but, if anyone needs to get in touch with me personally, please refer to my e-mail address: hanklive39@hotmail.com because, I plan on being real busy for at least the next three or four months!

Yep, I inherited a major mess here at my new position yet, with a bit of effort and persistance & dedication, I'll get things organized to the level where it should be and hopefully the school will once again have one "jewel" of a welding technology program as a result of the combined efforts of both my students and myself.

So, once again thanks everyone for your kind words, and hopefully I'll log on more regularly in the coming months

Respectfully,
Henry

[beingbecky]

Wow Robin great letter..I am usually not too much of a cry baby  but your letter brought a tear to my eye.

Becky

[Lee]

Robin,What a truly beautiful letter, which I am sure brought tears and peace to the family who gave the gift.  I truly believe they needed to know of you, and from you, it has to ease their pain to know how their family loss brought life to yours.  You truly are a care-taker of body, mind and heart.  God bless you for that.Blessings,Lee

[robin]

Thanks Becky and Lee...I just wish they would answer me and be willing to meet. I'll write again next year if I don't hear from them and I really don't think I will. Keep your spirits high...robin

[KatNyerHAT]

Robin,  you should post this letter on your liver transplant blog.  I think it truly expresses your feelings shortly after tp.

 
Kat

[robin]

Kat...I did debate that issue but then this forum is different from my transplant blog and I want to wait before putting it there. Bet you will see it posted though in that arena before too much longer. Keep your spirits high...robin