Transplant

[Debbie C]

I am also sooooooo happy for you. Please keep us posted as the time gets closer. I will keep you in my prayers. What a way to start the New Year.

[gilders]

Thank you all for your messages of support.
The main headlines for the news in the UK today were all about the NHS and how the head of NHS England has told drs to cancel all operations that aren't immediately life saving (NHS is very understaffed) until after January.
I'm thinking that this may postpone my kidney transplant as the ones booked in for January will be moved to February (the month I expected mine to happen).
Every time we make progress, we then take 2 steps back.

[Lilly]

Dear Gliders, I am so disappointed for you....I know you are very frustrated!! I will be keeping you in my thoughts and prayers. Blessings and hope....

[gilders]

Just in case anyone was wondering how the kidney transplant went, well it STILL hasn't happened. My cardiologist is concerned that due to having vasculitis for over 20 years, my arteries may have hardened and the operation may be too risky. I had another echocardiogram a couple of weeks ago and next week I need to have 2 Myocardial Perfusion scans over 2 days.
I met up with my local transplant Dr at the beginning of the week. He has said that I am now his priority and so long as the heart results come back good, I'll be on the operating table between 3 - 6 months. He did say that that although the repeated immunology tests showed that I am compatible with my dad, it is classed as High Risk compatible. I asked if my dad was still the best option to donate due to it being high risk. He said it was as I have MANY antibodies, so finding a match would be very hard with anyone else.
I will need to take twice as many anti-rejection meds as "regular" patients. Not really happy about that, especially as I'm currently in drug free remission and feel much better for it (except for zero energy, which is to be expected with my poor kidney function).

[NatriceRomeo]

Just in case anyone was wondering how the kidney transplant went, well it STILL hasn't happened. My cardiologist is concerned that due to having vasculitis for over 20 years, my arteries may have hardened and the operation may be too risky. I had another echocardiogram a couple of weeks ago and next week I need to have 2 Myocardial Perfusion scans over 2 days.
I met up with my local transplant Dr at the beginning of the week. He has said that I am now his priority and so long as the heart results come back good, I'll be on the operating table between 3 - 6 months. He did say that that although the repeated immunology tests showed that I am compatible with my dad, it is classed as High Risk compatible. I asked if my dad was still the best option to donate due to it being high risk. He said it was as I have MANY antibodies, so finding a match would be very hard with anyone else.
I will need to take twice as many anti-rejection meds as "regular" patients. Not really happy about that, especially as I'm currently in drug free remission and feel much better for it (except for zero energy, which is to be expected with my poor kidney function).

I’m sorry about the delay, I can image you are anxious.
I was wondering about the anti-rejection drugs. Do you know what they will prescribe? I’m just wondering because I know imuran is sometimes used & it would be nice (though I understand that it sucks since your in a drug free remission right now) to “kill two birds with one stone” as they say?? I will keep you in my thoughts & hope all the cardiology tests come back normal & you have a speedy recovery.
Natty


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[mishb]

Well that sure does suck

My fingers will be crossed for you to have an amazing 2018 with everything finally falling in place

[gilders]

I was wondering about the anti-rejection drugs. Do you know what they will prescribe? I’m just wondering because I know imuran is sometimes used & it would be nice (though I understand that it sucks since your in a drug free remission right now) to “kill two birds with one stone” as they say??

Thanks Natty.
Azathioprine was a great drug for me for many years. I couldn't tolerate Cyclophosphamide when I was first diagnosed and as I had kidney failure Methotrexate wasn't an option. There wasn't any of the newer drugs like Rituximab over 20 years ago. I achieved remission with Aza and pred. For about 20 years I managed all my relapses with pred and Aza, but about 4 years ago Aza stopped working as well as it used to. Not only that, but I had immature, odd shaped, red blood cells which some of the drs blamed the many years use of Aza.

I have been told that I will be having Tracolimus and pred, but as I'm a high risk match, I'll also be having mycophenolate. I've not had mycophenolate, but know others have had this for treatment of Wegener's.

[NatriceRomeo]

Thanks Natty.
Azathioprine was a great drug for me for many years. I couldn't tolerate Cyclophosphamide when I was first diagnosed and as I had kidney failure Methotrexate wasn't an option. There wasn't any of the newer drugs like Rituximab over 20 years ago. I achieved remission with Aza and pred. For about 20 years I managed all my relapses with pred and Aza, but about 4 years ago Aza stopped working as well as it used to. Not only that, but I had immature, odd shaped, red blood cells which some of the drs blamed the many years use of Aza.

I have been told that I will be having Tracolimus and pred, but as I'm a high risk match, I'll also be having mycophenolate. I've not had mycophenolate, but know others have had this for treatment of Wegener's.

Thank you Gliders,
I truely hope the transplant medications work as well as control WG. I was on Aza and it stopped working for me as well. I tried mycophenolate but it never worked. I hope it does wonders for you! Good luck!
Natty


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