DREAMSDAYZ
11-09-2000, 09:11 PM
More Information needs to be put out about all Transplants and the aftercare along with the complications that can occur at anytime before during and after transplants.
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mom
11-29-2000, 03:56 PM
I think this is a topic that can go right along with organ donation education. Did you know that in other countries it's the opposite of here? You are an automatic donor unless you specify otherwise. That is why the U.S. lags behind organ donations.
DREAMSDAYZ
11-29-2000, 04:54 PM
That is a good idea about organ donor education also. I don't know that we should all be donors if we don't want to be.
I think it should be up to the inividual.
I just have a friend that has had a heart transplant for 8 years now and the complications and medication are something
that I think need to be addressed here
as you can't find much in other places.
She is now anemic and having renal dysfunction from the anti-rejection medication and most transplant patients and the families don't know about a lot of these things until it happens to them and then it is all a learning process again. I do agree there isn't enough information about organ donation either.
I think it should be up to the inividual.
I just have a friend that has had a heart transplant for 8 years now and the complications and medication are something
that I think need to be addressed here
as you can't find much in other places.
She is now anemic and having renal dysfunction from the anti-rejection medication and most transplant patients and the families don't know about a lot of these things until it happens to them and then it is all a learning process again. I do agree there isn't enough information about organ donation either.
Charlie Weaver
12-15-2000, 05:51 PM
I am the wife of a heart transplant recipient. My husband was on the list for 2-1/2 years. His was not the normal transplant case because he did have complications afterwards, but I agree about more info needs to be out there. There is a transplant resource group based out of Baltimore, but I would like to see more resources. The amount of people that die each year from the lack of donations is really huge. My husband and I have requested to be donors, and this was our choice even before we found out he needed a new heart. But there is one thing that everyone has to be aware of too. I don't know if it is just Maryland or what, but even though you might have it indicated on your license, please make sure that friends and family members know about your decision. We found out that if my husband were to die and our daughters don't sign the papers for donation they will not do it. So PLEASE make sure everyone knows about it. Also a few of my friends said they thought they would have to pay if they were to be donors. That is wrong--all the expenses are paid by the recipient's insurance. There is no cost to the donor's family.
And more importantly, be ready to ride an emotional rollercoaster. I think we hit every high and low around, and it is normal.
If anyone would like more info they can get the info from the Transplant Resource Center. Your local hospitals should have the address, or if you want, I can post it here.
And more importantly, be ready to ride an emotional rollercoaster. I think we hit every high and low around, and it is normal.
If anyone would like more info they can get the info from the Transplant Resource Center. Your local hospitals should have the address, or if you want, I can post it here.
Jim M
02-21-2001, 12:03 AM
I am a heart transplant recipient. I also would love to see a message board labeled Transplants. There is a great deal of information available to people waiting for a transplant and to those who have already had them from transplant recipients.
DREAMSDAYZ
02-21-2001, 08:40 AM
Yes we do need on called Transplants so all the transplant patients can trade information and talk about this. My friend has nothing to go by except what the doctors can tell her. A lot of the time she is really scared. The heart she got had CMV and there isn't much out there telling about this. Then she also got Hepatitis C from the blood transfusion. Now that she is on dialysis from the renal failure she has so many questions and is even wondering if a kidney transplant is the way to go or not.
There insn't anything anywhere that I have looked about what happens to anyone after a transplant of any kind. She is going through so much that she doesn't understand.Here diet now is small because of the intake of sodium, phosphorus and potassium and she can't have dairy products but needs more calcium. All of this is so frustrating to her.
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There insn't anything anywhere that I have looked about what happens to anyone after a transplant of any kind. She is going through so much that she doesn't understand.Here diet now is small because of the intake of sodium, phosphorus and potassium and she can't have dairy products but needs more calcium. All of this is so frustrating to her.
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Kathryn
02-21-2001, 10:35 AM
After reading all of the above postings, I can see also that a Transplant forum would be of great help.
I have a relative who's husband will soon have a kidney transplant. It's very scary and I would like to know what to expect in their lives and decision making processes.
I also know that not eveyone can donate their organs. I've been told that because of my Lupus I can't give blood and no organ donations. That kind of made me feel bad because I had intended to consider doing so.
The transplant board would be helpful
Just thought I would voice my opinion as well,
Kathryn :)
I have a relative who's husband will soon have a kidney transplant. It's very scary and I would like to know what to expect in their lives and decision making processes.
I also know that not eveyone can donate their organs. I've been told that because of my Lupus I can't give blood and no organ donations. That kind of made me feel bad because I had intended to consider doing so.
The transplant board would be helpful
Just thought I would voice my opinion as well,
Kathryn :)
DREAMSDAYZ
03-02-2001, 12:04 AM
My friend is now online and would love to talk to others that have had kidney transplants or are on dialysis. She also has had her heart for 8 years and 5 months now and would love to talk to others about her experiance. She feels as though it will help them and her to talk about it. I have so many questions also since I have been by her side watching what she has been through. The worst part was her kidneys failing and now that she is on dialysis she is so much better! What she wants to know now is what is involved in a kidney transplant and what will she be going through when the time comes. Thank-you for listening!
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