I have stage 5 failure. My GFR IS 10. I had my first kidney transplant in May 1995. This will be my second. I am meeting the transplant surgeon, nephrologist and anaesthetist this Wednesday. They will let me know if I am suitable to go back on the transplant list. I am really really nervous and scared they will tell me I am not suitable due to my history. I have a lot of complications. Can anyone please tell me how these appointments went and if they weren’t successful, why. The first time around I went on an emergency list and didn’t go through this.
thanks for listening xxx
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DoylerOz
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My first question is what EMERGNECY list for transplant did you go on. I did not think there was such a thing. And if there is such a thing, how did you get on it.... what was the criteria?
I am familiar with the path to transplant. Most of the folks I know go through a long an involved evaluation process that takes months. Every orifice is checked, ever organ evaluated, blood tests galore, dental and so forth. Then it takes the board even longer to decide. I went through it twice, once denied; second time accepted with time earned.
Can I ask you why you were refused? And did you have to wait long to try again? I am in Ireland. So maybe it is different. It was also in 1994. I was put on this list as my access was failing. So I was very lucky and received my first transplant after 2 months on the list. I did dialysis for a total of 12 months.
oh wow, That was a good run for that kidney wasn't it? I was refused because they said they found ischemia in my left ventricle, but only 6% and then they said I was overweight. Turns out I was NOT overweight, and was below their requirement for years. And so, I demanded they rerun the heart tests and they all came back with no issues whatsoever.
Well done you. Sometimes you need to be your own best advocate don’t you. I have been really lucky. Sidney (pet name) has been amazing to me. I would love to have reached 30 years. Buy you never know! My husband is going to be tested to be a donor. I am just really nervous as my own team have told me the surgeons may not take the risks. Just cannot wait for Wednesday to be over. Xx
In Ireland we call it a transplant pool, it’s not if you’re on top of the list your first for a kidney. The way it works is when a deceased kidney becomes available then all patients that are really sick are tested first, then patients who have high antibodies and hard to match are tested second then the rest of the pool until they get the best match. It’s not really an emergency list but you’re checked first against every kidney that becomes available. I only learned this when I was going through it myself .
I’m in Ireland aswell. Basically you have to be fit for surgery . They will look at your weight, heart, blood pressure, etc . I was on dialysis for 8 years and got my kidney in ‘20 . Try not to worry everyone has to go through these tests before transplant. Good luck and keep us updated .
Hi Tina. I am delighted you have had yours. It makes such a difference doesn’t it. 8 years on dialysis was a hard journey for you. My nephrologist down here has done all the pretesting. So fingers crossed. I am usually so calm about things having lived with a kidney transplant since 1995 but I have got myself in a right tizzy. That won’t help my blood pressure 😂 I was getting worried about the appointment and probably just need to stay calm. There is nothing I can do.
It’s absolutely normal to be nervous. Your health is everything. I have really bad health anxiety , I get a twitch in the wrong place and I think Im dying 😂😂 yeah I have very high antibodies so very hard to match but got there in the end! Ask lots of questions when you’re with the doctors , knowledge is power!
Well I didn’t get a thumbs up. But the fight isn’t over yet. Need to have some more scans. Felt very despondent on the way home but am getting ready to go again. As long as there is a chance I will keep trying. So fingers crossed these scans help xx
Oh I so identify! Thought I was one of the few to have my transplant 27 years. The constant anxiety when things start to decline. Being your own advocate is the only way to go.
If one center, even one country doesn’t accept you may be able to go elsewhere. In the U. S. They are doing studies with artificial kidneys you wear and with pigs kidneys that have been genetically altered. If not ready soon they might be recruiting for studies. I belong to AAKP. They are wonderful and provide much info on all! I just turned 80 so know no one will operate on me… I’m hoping to stay at stage 4 until I die.
Thank you. Scan tomorrow. Fight back begins. I have never been a quitter so these Co morbidities they said were the problem better watch out. Here we come! And congratulations you on 27 years xxxx
Well the scan was done on my arms to show the veins etc as they are bad. So the vascular surgeon said no to a fistula. Had a fistula the last time and it didn’t work. So they will put in catheter when I start dialysis. Waiting now for angio on legs for Transplant surgeon and few other letters.
Can you do peritoneal dialysis? It’s much safer and doesn’t involve vascular system. I did it. And you feel better. Not like hemodialysis.But maybe that’s what you meant by “ catheter”?
No unfortunately not. I have had too much abdominal surgery. It was called a Quinton catheter when I was on haemodialysis. It might be something different now. In your chest connected to jugular if memory serves me right. I see now you can dialyse yourself at home. That might be an option they said.
Home dialysis is now really pushed here AND it’s SAFER, believe it or not. The dialysis companies are all recommending it.
Let me know whatever info you need on whatever. I’ll get in touch with people here and see what I can send you. If it’s OK to share emails somehow I can do that too.
oh Donna thank you so much. Dialysis wasn’t good for me the first time but I know it has changed a lot. I keep thinking I will get to 30 years! Thank you so much. It is always good talking to people who understand xx
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