I had a live donor transplant on Friday but they had to go back in and take it out due to clotting of the artery to the new kidney. They said it was rare (2%) and I didn't fit the profile for people with clotting disorders so they didn't test for it.
Tests are supposed to confirm this but they also said my low blood pressure and low pulse after surgery and my relative good health may have actually contributed.
Has anyone had or heard of similar experiences?
Must wait a month to try again and will likely have to take one of mine out before another transplant.
I'm mostly sad at the wasted sacrifice of my donor. - Lorie
failed transplant
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lorie-darlin
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failed transplant
Lorie-darlin
Lorie - that sounds very similar as to what happened to me a few years ago - they did not pick up the clot in time, nor did they realise that it was a clotting disorder that had caused it. The one I have is particularly severe (and also runs in the family as my brothers were subsequently found to have the same thing).
If I read your mail right you are just waiting a month before you try again - I was very ill after mine and not sure I would have been ready in just a month for transplant - I remember it being at least 6 weeks before I felt ready to contemplate it.
I would also speak to them about exactly what they are planning to do differently in terms of post-op care, I have been told that I will be on intra-venous heparin from the time the kidney is implanted (in theatre) for a couple of days, and then on heparin injections for some considerable time afterwards. (This is similar to the care for a pancreas I believe). I have also been warned that my stay in hospital post-transplant will be longer than usual as a result.
Sorry to hear of this as I know how devastating it is to have such a fabulous gift and then for it so quickly (and seemingly unneccesarily) taken away ... and how bad you feel for the donor as well. The only consolation I can offer is that my brother says he has no regrets and would do it again if he was able to ...
If I read your mail right you are just waiting a month before you try again - I was very ill after mine and not sure I would have been ready in just a month for transplant - I remember it being at least 6 weeks before I felt ready to contemplate it.
I would also speak to them about exactly what they are planning to do differently in terms of post-op care, I have been told that I will be on intra-venous heparin from the time the kidney is implanted (in theatre) for a couple of days, and then on heparin injections for some considerable time afterwards. (This is similar to the care for a pancreas I believe). I have also been warned that my stay in hospital post-transplant will be longer than usual as a result.
Sorry to hear of this as I know how devastating it is to have such a fabulous gift and then for it so quickly (and seemingly unneccesarily) taken away ... and how bad you feel for the donor as well. The only consolation I can offer is that my brother says he has no regrets and would do it again if he was able to ...
Lorie I am so sorry to read your post :0(
I realise that there is nothing we can do but offer support here ... but do wish at times there were more we can do ...
I've just read Mandys so positive post in reply too ... and it makes me want to hug the both of you ...
OK OK .. for no other reason that it gives me a chance to get close to two delicious women ... but grab the moment eh ...
sending you lots of love and good wishes over the airways to both you for a speedy recovery and your donor too XXX
Rik
:0)XXX
I realise that there is nothing we can do but offer support here ... but do wish at times there were more we can do ...
I've just read Mandys so positive post in reply too ... and it makes me want to hug the both of you ...
OK OK .. for no other reason that it gives me a chance to get close to two delicious women ... but grab the moment eh ...
sending you lots of love and good wishes over the airways to both you for a speedy recovery and your donor too XXX
Rik
:0)XXX
Hi Lorie
I lost my first transplant because of this and I can only imagine how it must be so much more devastating when the donor was also a living one.
However it was 25 years ago before scans so although rare was a bit more common at the time because they didn't do the routine post transplant scan.
Another thing I would check with them is the blood pressure issue and whether it can be prevented in the future or if it was a result of the anesthetic. I have low blood pressure all the time and it reaches roughly 80/40 but has margins either way, so for that reason I have to go to ICU after a transplant in order to try and prevent a similar loss of the kidney. As I understand it they can give drugs to keep the blood pressure at a good level which can't be administered on a normal ward.
But on the positive side I did go on to have another transplant which didn't last but was down to rejection and probably nephrotoxicity from the drugs so blood clots were not a problem at all that time. Also now they know what the problem was for you they can do absolutely everything in their power to stop it happening again.
I lost my first transplant because of this and I can only imagine how it must be so much more devastating when the donor was also a living one.
However it was 25 years ago before scans so although rare was a bit more common at the time because they didn't do the routine post transplant scan.Another thing I would check with them is the blood pressure issue and whether it can be prevented in the future or if it was a result of the anesthetic. I have low blood pressure all the time and it reaches roughly 80/40 but has margins either way, so for that reason I have to go to ICU after a transplant in order to try and prevent a similar loss of the kidney. As I understand it they can give drugs to keep the blood pressure at a good level which can't be administered on a normal ward.
But on the positive side I did go on to have another transplant which didn't last but was down to rejection and probably nephrotoxicity from the drugs so blood clots were not a problem at all that time. Also now they know what the problem was for you they can do absolutely everything in their power to stop it happening again.
Last edited by Angel on Thu May 24, 2007 12:52 pm, edited 1 time in total.
Lori
Lori so sorry to hear about your news..... Must be such aan emotional time for you all and our thoughts are with you .
Ironically when my daughter was on paediatrics 2 children had same problem within a few months of one another etc. 1 transplant was a live donor and was done as sadly a last resort for the child which was very traumtaic for everyone involved.The other clotted off from a donor from transplant list. Both kidneys lost within 12&24 hrs.
We had been told Rach my daughter was VERY high risk due to her disease etc and was a real worry etc.She was referred to haemoatologist and all weird and wonderful testing of blood clotting factors etc and much more.Those results came back showing no real specific issue other than much greater risk of clotting due to her disease Severe Nephrrotic Syndrome. She was on asprin & previously warfarin but stopped before going on transplant list as Drs said they would need to stop asprin beofre transplant etc and as didnt know when a call would come etc needed to be off it 'ideally.Post transplant she was given anticlotting injections for a few days until fully mobile then back on asprin for few months. Its a real catch 22 getting the blood not too thick or thin for clotting/bleeding etc.
As you mention its only a 1 - 2% chance of losing a kidney to blood clot etc but sadly can occur but its something that no1 can really predict etc.
I hope that in time things will improve for you and you will be given another chance etc... sure its going to take time physically and emotionally to recover- take each day at a time at the moment.....
Best wishes (((hugz))) Elaine & Rach xx
Ironically when my daughter was on paediatrics 2 children had same problem within a few months of one another etc. 1 transplant was a live donor and was done as sadly a last resort for the child which was very traumtaic for everyone involved.The other clotted off from a donor from transplant list. Both kidneys lost within 12&24 hrs.
We had been told Rach my daughter was VERY high risk due to her disease etc and was a real worry etc.She was referred to haemoatologist and all weird and wonderful testing of blood clotting factors etc and much more.Those results came back showing no real specific issue other than much greater risk of clotting due to her disease Severe Nephrrotic Syndrome. She was on asprin & previously warfarin but stopped before going on transplant list as Drs said they would need to stop asprin beofre transplant etc and as didnt know when a call would come etc needed to be off it 'ideally.Post transplant she was given anticlotting injections for a few days until fully mobile then back on asprin for few months. Its a real catch 22 getting the blood not too thick or thin for clotting/bleeding etc.
As you mention its only a 1 - 2% chance of losing a kidney to blood clot etc but sadly can occur but its something that no1 can really predict etc.
I hope that in time things will improve for you and you will be given another chance etc... sure its going to take time physically and emotionally to recover- take each day at a time at the moment.....
Best wishes (((hugz))) Elaine & Rach xx
Aah thanks Rik, very kind thought ! I suppose the one thing I found was that prior to the transplant I wanted to know all the risks etc and found everyone saying 'don't worry about that, of course it will work' whereas logically everything is a risk and one should be prepared (or as much as one can) for all eventualities.
But I am certainly hopeful that my next transplant will work ...
But I am certainly hopeful that my next transplant will work ...
i am really sad to hear your news, hope things go better next time. with regard to the guilt about the donor, although a magic wand wont take it away, i am sure had they known what would happen they wouldn't have changed a thing. there is never any guarantee and i am sure the doctors explained this and they still went ahead.
take care and keep well
emma x
take care and keep well
emma x
Lorie, I'm so sorry to hear of your loss....I'm sorry I can't offer any advice as I have never had this condition and have never even heard of it before. I think it is important that you brought it to our attention!
It seems, by others' posts, that it is more common than one might think. Why can't testing for this be part of the transplant workup? It seems logical to do even if a low percentage of people might have a clotting disorder-after all, they test for all kinds of other possible problems that might affect the organ or the person having the transplant.
My first transplant was a living donor one given to me by my older sister-although I lost it through different circumstances (it rejected), it is a painful ordeal for both the donor and recipient. I, too, felt bad about my sis giving up a kidney, but I know she would have done it again in a heartbeat, just like your brother.
You are both in my thoughts and prayers.
Sending some hugs,
Pam
It seems, by others' posts, that it is more common than one might think. Why can't testing for this be part of the transplant workup? It seems logical to do even if a low percentage of people might have a clotting disorder-after all, they test for all kinds of other possible problems that might affect the organ or the person having the transplant.
My first transplant was a living donor one given to me by my older sister-although I lost it through different circumstances (it rejected), it is a painful ordeal for both the donor and recipient. I, too, felt bad about my sis giving up a kidney, but I know she would have done it again in a heartbeat, just like your brother.
You are both in my thoughts and prayers.
Sending some hugs,
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
Romans 8:28