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Kraig
Member
Username: Kraigg
Post Number: 6
Registered: 03-2007
| | Posted on Wednesday, June 23, 2010 - 04:30 am: | 
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I had a kidney/pancreas transplant almost 20 years ago now. I had to have the pancreas removed nearly 10 years ago, and my transplanted kidney has been headed south for some time now (I'm at 20% function).
Though I live in Southern California, I was able to get on a list in Chicago this past April.
After much thought, I've decided against that decision. I'm 52 now, and when I had the original surgery, I was 32, and it wasn't a lot of fun back then. I recall in those dark days that if I had to do it again, I would not. But then, I had young children, a thriving business, and lots of friends for support. Since then, my wife died, the kids grew up, and the business was closed. I had a nice home, now I live in a "manufactured" house. I'm on disability, and unable to go back to work.
I rarely see my kids anymore, they're just too busy with their own lives to ever drive the hour and a half to visit. I have to think about all the particulars involved with the surgery: Getting there on time, getting through it, getting home again afterwards, follow up, etc. Just doesn't seem worth it anymore. And what if there are some complications? Like I mentioned earlier, I'm no spring chicken.
Seems like my potential donated organs would be better suited for a younger candidate with a promising future. I got to experience life once, now it's someone else's turn. |
Ronzo
Member
Username: Dollar_down
Post Number: 3
Registered: 06-2010
| | Posted on Wednesday, June 23, 2010 - 04:49 am: |
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Geez Kraig- a noble , and BIG decision on your behalf! As I have had a fair 'kicking' regarding complications with my recent double , I fully understand your trepidation with going through it again!
HOWEVER- if you had the chance to be healthy again , this time armed with the knowledge you have now , and more importantly the strength you mustered the first time , would you live life differently?
Maybe you sacrificed your enjoyment for the good of your family and career/business?
Perhaps this a message to you that this time , it is YOUR time , do what you wanted to do , meet new people , may go a little wild?
Who's to say that the next recipient wasn't so nice to his new gift , or their body plain rejected , and the organs were 'wasted' , when they were really meant for you??
I admit that I am in a completely different stage of transplant than you , but we are similar in age , so I think I associate with where you are .
Personally , I think you should go for it mate , and give the rest of your life one hell of a thrashing , and live like there is no tomorrow, for as we know with us , sometimes there may not be!!
The very best of luck..... |
ed
Member
Username: Ed2001
Post Number: 52
Registered: 03-2010
| | Posted on Wednesday, June 23, 2010 - 07:16 am: |
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Kraig,
Sorry to hear that things haven't worked out over the years. Maybe things will turn such that your outlook will change.
I know how you feel as I face the same situation. I'm quite a bit younger than you and have had my kidney about half the time you've had yours. But like you the transplant experience has been quite grueling.
It's like life stopped and took a U turn then and steadily continued to drop over the years. My kidney is running at around 30%, and based on my current status, when the time comes, my decision will be like yours. Though my finances will probably will probably make that decision for me even before my kidney gives.
There's still a small part of me that hopes something really good happens that will change my mind, and I hope that something will cause you to do the same.
Best of luck my friend.
Kidney Transplant
April 2001 |
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Heather
Forum Leader
Username: Heather
Post Number: 2966
Registered: 05-2003
| | Posted on Wednesday, June 23, 2010 - 07:43 am: |
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Hi Kraig. It is easy to see you are depressed. Perhaps you could see someone about that first and maybe they can put you on something that will help you with that. As far as being taken off the list...can't you stay on the list and when the call comes..decide ...do you want to go for it or don't you? I don't know how that works. I wonder sometimes about my dad who I donated to 11 years ago. He is now 67 and I wonder if he would go through it again...I think he would say no..but I wonder if it came right down to it..would he? He has been through hell in his life physically since he was in his early 30s with all kinds of different things..3 different cancers, Lupus, CHF, heart bypass, valve replacement, kidney failure,..kindey transplant, on and on...and I do wonder what his choice would be. I hope it would be to retransplant. He had a heart attack while on dialysis so there would not be a big choice other than...the obvious..
I hope that you can find others here who have gone through the same hard places you are going through. I have been here since this sites beginning...and I know for a fact that the people here are wonderful, caring individuals all with their own stories...and struggles. Stick around and you will meet them.
Utlimately this is a very personal decision and there is another young man who made this decision not too long ago also.
Heather
Forum Leader - Living Organ Donation
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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deb.k
Member
Username: Debdotk
Post Number: 21
Registered: 06-2010
| | Posted on Wednesday, June 23, 2010 - 09:42 pm: |
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Although I do not know you and I have only been transplanted for 3 1/2 years, I also am your age.
When I had my tx I remember being so uncomfortable that I swore I would never do this again. Luckily I have not yet had to make that decision.
I also remember how horrible I felt before the transplant. Everything in life seemed like a mountain. From interacting with my beloved daughter to picking up a piece of paper. I hated any one or any thing that needed more of my energy.
I am so sorry for you, I can't imagine how difficult this kind of decision is. It is actually a decision we had to make at the very beginning of treatment, I just remembered that.I also have a poor support system these days, and that feeling of alone is frightening sometimes. Other times being alone to me is bliss.
Since I am also 52 I have to say you are still young, and when you feel better you will be able to work on your life, perhaps even make it happy again. I know thats what I am working towards.
Its strange that myself and some other people had a great life change to the worse after surgery? Did I misunderstand or any comments about that. Sorry to change the subject, the line in ed's post really stuck out.
Good luck to you - white, green,yellow,and red light have been sent to you via reiki angels. |
Rob C
Member
Username: Rob_c
Post Number: 236
Registered: 09-2007
| | Posted on Thursday, June 24, 2010 - 07:22 pm: |
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Hey Kraig, I am 15 years younger than you and I am already on my second transplant. I was a 20yo college student when I was diagnosed with FSGS. My life since then has basicly sucked. I really hope that by the time I need another one euthanasia will be legal in the USA. |
Kraig
Member
Username: Kraigg
Post Number: 7
Registered: 03-2007
| | Posted on Friday, June 25, 2010 - 05:14 am: |
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Thank you for your feedback, everyone. I did have a good 10 years or so, before my transplanted pancreas had to be removed. That time, I was in the hospital in Madison, WI, for just a few weeks over 6 months. Continuously! I certainly don't want to go through that again. Now that it's been over a year since I went through all the initial testing, they want me to go through it all over again. All of it, since it all has to be done on an annual basis.
One of the social workers here at UCLA where I do my follow ups, told me that they would not do a transplant on a patient that had only Medicare, which is the insurance I have. She said that the expenses would be too high. That's another reason: Broke, but healthy? Cash in the bank, but ill?
Maybe I'll win the lottery. Or meet a girl. Yeah, right, like any of THAT is going to happen! |
Diane
Forum Leader
Username: Mary_diane
Post Number: 555
Registered: 02-2009
| | Posted on Saturday, July 03, 2010 - 01:39 am: |
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Hi Kraig,
I really hope that you will reconsider Kraig. I am a 57 year old woman who had a liver transplant 18 months ago. I have actually done really really well from my transplant. I have some other underlying problems that have posed a real problem/
Since my transplant which seemed surreal with the amount of support that I received, I have also had a huge number of personal losses, that have stunned me and made a cheap B class soap opera look pale in comparison. I am also not back at work.
Last night I saw a video on Africa written and edited by Madonna called "I am because we are". It was about the huge number of HIV/AIDS orphans in Malawi Africa ( I have been there) The message they are giving these kids is that in spite of no odds at all, they can fight, be accountable and change their lives, and their lives are valuable and worth something. I watched these kids struggling against all odds. Kraig, we can do it. It made me feel like a Rising Phoenix, which will be my new icon. It's hard work, and sometimes it seems like we just can't do anymore, but Kraig, we can do it.
And guess what, there are new doors to open. Maybe one of them will be a lottery ticket, and maybe one will be a new and carrying partner.
Just do it!
Take good care.
Diane
Liver Transplant Nov 20, 2008
Vancouver General, BC
“Sometimes our light goes out but is blown again into flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light.”
Albert Schweitzer
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