I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Neo on October 22, 2007, 09:43:41 AM
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This last week 2 people I know one that lives in miami my age got a transplant, and a lady I know well thats sits next to me in dialysis got a transplant. Dont get me wrong I was soo happy for them both especially the lady thats sits next to me in dialysis, in fact the day before she was called I was cheering her up and I had told her its not a question of if your going to get one, but when.. However I kind of felt like we were in it together if you know what I mean. I also was on the list about 3 months before her, so privately I felt really bummed out cuz it just felt like everyone was getting a kidney but me. I just am not a selfish person but it just kind of was a shock and I feel kind of hurt and down a bit. Just needed to talk to someone about it, why not my IHD friends :-\
EDITED: Fixed subject line - moved to Transplant Stories - okarol/moderator
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Neo, it is good to hear that someone else feels this way too. Of course, I am thrilled for everyone who gets a transplant. It is the news we all want to hear about because it gives us hope. But, it also makes us a little jealous--a normal reaction. I don't like feeling that way--it isn't like me to envy anyone. Then I start feeling selfish and thnk of all the younger people waiting for a new kidney (YOU) and am willing to wait longer if your age group gets one first. BUT, I want a tranplant too!! My family wants me to get one too. Oh well, waiting, waiting, waiting-but not patiently! Thanks for sharing your feelings :thumbup;
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Hi Neo,
The waiting is torture, especially when others around you get a transplant! Unfortunately it's hard to predict when it will happen for you because it's based on time AND tissue matching. If someone is a good tissue match with no antibodies to the non-living donor, they will get the call. All you can do is be sure all your stuff is up-to-date, and that your transplant coordinator has all your current info. I am sorry you are down, but try to cheer yourself on too - it's not IF.... it's WHEN!! Good luck!
:cuddle;
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Yeah. I know how you feel. I feel that quite few times, but I try to not let it stay too long. I acknowledge it, then move on. When it's my time, it's my time. Right now it isn't.
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I'm excited because I just got listed, but I feel what you're saying. I try not to think about when I will get the transplants - but to be serious, everytime the phone rings now my heart jumps! I'm sure it will happen for the both of us when we least expect it, but in the meantime I try to live life the way it is, knowing one day I will have a chance at a new life God willing
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I think that is completely normal Neo. Hang in there your time is coming.
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I'm excited because I just got listed, but I feel what you're saying. I try not to think about when I will get the transplants - but to be serious, everytime the phone rings now my heart jumps! I'm sure it will happen for the both of us when we least expect it, but in the meantime I try to live life the way it is, knowing one day I will have a chance at a new life God willing
Very well said JoePaul, :2thumbsup; Hang in there Neo, remember, patience is a virtue, your time will come my friend. :beer1;
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I can understand your impatience and I hope you get the call soon! Hang in there!!
Beth
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Just be happy you're not on dialysis in Canada, where the waiting time for a transplant is so long that the average patient dies before getting one. I remember when I was about two years into dialysis I suddenly noticed that I had never seen anyone in my unit of 48 patients ever leave because of getting a transplant. Many left because they died, but that seemed to be the only route of escape. As a male with diabetes in his forties, I had an eight-year life expectancy on dialysis, and the average wait time for a transplant in Canada was eight years, giving me a 50% chance of being dead before ever getting one.
For us the issue was not being jealous about someone else's good luck in getting a transplant first, but about being hopeless over the total unreality of ever getting a transplant in time.
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Hey nina can you put my post back into the dialysis discussion board? This doesn't belong in the transplant section I want my friends on the dialysis board to see this so I can get some more feedback... Thanks nina!
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Hi Neo, It is pertaining to transplants that is why it was put here, if someone has any questions, thoughts or any other inquiries about transplants, they will come to this thread. I hope you understand ;)
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This last week 2 people I know one that lives in miami my age got a transplant, and a lady I know well thats sits next to me in dialysis got a transplant. Dont get me wrong I was soo happy for them both especially the lady thats sits next to me in dialysis, in fact the day before she was called I was cheering her up and I had told her its not a question of if your going to get one, but when.. However I kind of felt like we were in it together if you know what I mean. I also was on the list about 3 months before her, so privately I felt really bummed out cuz it just felt like everyone was getting a kidney but me. I just am not a selfish person but it just kind of was a shock and I feel kind of hurt and down a bit. Just needed to talk to someone about it, why not my IHD friends :-\
EDITED: Fixed subject line - moved to Transplant Stories - okarol/moderator
Of course you feel let down. I was on Hemo for a year and had a really rough time. If you are waiting for a tx, then you want to get off the machine and it is very hard when people you know get there before you. On the other hand, you sound like you have the absolute proper attitude to get you through until your own transplant comes through. You are a bit bummed, but you are happy for the folks you know. That's the best balance you can maintain. Keeping a positive attitude, but acknowledging that it is hard.
Don't worry. You will get a transplant too.
Take care.
Cora
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Hi Neo, It is pertaining to transplants that is why it was put here, if someone has any questions, thoughts or any other inquiries about transplants, they will come to this thread. I hope you understand ;)
It's more about Neo's feelings about being (stuck) on dialysis while others around him are being transplanted. It is not any of this... "Have you had a Transplant? Tell us your story, good, bad or horrible. Thinking of a getting a transplant? Well you better read this section first. Feel free to ask questions related to transplantation." It's a matter of interpretation and I don't see any harm with it being under general discussion. Think about it.
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Thanks for your comment George but I think goofynina and Neo will work this out through PM's.
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It's frustrating isn't it... at 28 and having been on Hemo for 5 years I have seen my fair share of people twice my age and older get the call before me. It's hard to see the justice in someone who has already lived a good portion of they're life without dialysis get a transplant before someone who doesn't have that same opportunity.
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It's also true that the period of your life when you are on dialysis is very important for how much damage it does to the overall development of your life, including your plans for marriage, having children, building a coherent career, getting an adequate amount of education, going through all the psychological stages of development at the right time and in the right order. A decade lost to dialysis for a patient in his 20s can destroy the whole structure of his life, while a decade lost to dialysis for a retired person who was planning to be sitting on the front porch counting the cars with out of state license plates going by each day may not make as much difference.
while there is preference given on the transplant waiting list to children, since their neurological development and stature can be permanently affected by being on dialysis during this period of their lives, there seems to be no consideration for the different impact of dialysis on people over 18, and the young and old are just lumped together on the same waiting list.
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It certainly is a personal view depending on what age group you are in.
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The entire process is frustrating.
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I will second that!
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Frustrated as I may be I'm all for the best possible match scenario... I'd much rather wait for a Kidney that I'm not going to have to fight and end up back where I started in a short period of time - Disappointmentville.
Heres what I'm dealing with... My father had his second transplant a year ago, it's working great and I couldn't be happier for him, however at the same time he only had to do PD for 3 months before getting the call for his first Kidney, the second was also dialysis pre-emptive and here I am 5 years attached to a machine waiting and I have to sit and listen to him talk about golfing trips with his buddies to Pinehurst. FRUSTRATING
I only hope that I get a Transplant before my daughter gets to an age where she realizes her Dad is not like everyone else's.
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HI Neo,
I can only imagine how you felt. I know one thing though your TIME will come and so will my sons. A lady where my son has dialysis was to get hers a few weeks back something happened and it was called off. I told my son Dustin sometimes things just happen we can't explain. Just remember God has a handle on everything ;)
Lori/Indiana
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thanks for all your kind words and info. I'm 29 and I've lost most of my 20's to this, but its good to know people understand I feel much better. What would I do without you all!!!!! LOL
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I know how you feel. The hoops and hoops you have to jump through to get on the list are frustrating. Then the wait time is ridiculous.
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Then the wait time is ridiculous.
Waiting waiting waiting..........
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How ya doing Neo?
:waving;
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Hi,
Going thru the process of getting listed is in itself a major
accomplishment in my book.
However, the waiting is very stressful-my husband is listed
at two hospitals, and there are days when he will get totally
frustrated with the wait. There have been two transplants
that we know of since he went on HD, he was very happy
but envious at the same time. I think that mixup of emotions
is only being human. Praying that all who ar listed get the call very soon
Anne