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Update and meeting the team.
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
wendycu
in
MPN Voice
2 years ago
Liver transplant
will my partner be considered if is he is still drinking but cutting down and attending regular meetings to eventually get the detox in the community. His condition is worsening. He’s had several bouts of HE and can no longer work. Also does anyone else suffer with insomnia although his docs have give
will my partner be considered if is he is still drinking but cutting down and attending regular meetings to eventually get the detox in the community. His condition is worsening. He’s had several bouts of HE and can no longer work. Also does anyone else suffer with insomnia although his docs have give
Shell2202
in
British Liver Trust
2 years ago
Stem Cell Transplant-update
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
ConniesDad
in
MPN Voice
2 years ago
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MF high risk Mutations
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
EPguy
in
MPN Voice
2 years ago
Microneedle skin treatment for kidney transplant patient
Hello... My Husband is kidney transplant patient for 2 years. He has some acnes (maybe it because of methyl) and leave scars on his face. I'm thinking to go to Dermatologist for Microneedle. Is anyone experience the same treatment?.
Hello... My Husband is kidney transplant patient for 2 years. He has some acnes (maybe it because of methyl) and leave scars on his face. I'm thinking to go to Dermatologist for Microneedle. Is anyone experience the same treatment?.
Dheadome
in
Kidney Transplant
2 years ago
Transplant Lethargy
Hi everyone! This is my first question and I'm so excited I found this forum of other kidney transplant recipients like myself. I was hoping you could help me: I am post transplant 19 years. My biggest issue is energy. Some days are good, some days are okay, and some other days like today, I am very
Hi everyone! This is my first question and I'm so excited I found this forum of other kidney transplant recipients like myself. I was hoping you could help me: I am post transplant 19 years. My biggest issue is energy. Some days are good, some days are okay, and some other days like today, I am very
ksoccer45
in
Kidney Disease
2 years ago
Lost a jewel from my Crown
Last night I got news that the kidney transplant center I was planning on using, if I was approved, has voluntarily put their program on hold pending a review of a couple of their cases by UNOS. I was shocked and it left me feeling a little unsettled. Questions like why are they being reviewed? When
Last night I got news that the kidney transplant center I was planning on using, if I was approved, has voluntarily put their program on hold pending a review of a couple of their cases by UNOS. I was shocked and it left me feeling a little unsettled. Questions like why are they being reviewed? When
HipHopQueen
in
Kidney Dialysis
2 years ago
Driving after transplant
Question for kidney transplant patients How long before you was able to drive again?
Question for kidney transplant patients How long before you was able to drive again?
transplantwarrier
in
Kidney Transplant
2 years ago
My father has Peripheral t cell lymphoma
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
NikhilSantosh
in
CLL Support
2 years ago
Lung transplant second opinion update.
Saw the very nice team at the Royal Papworth following the Harefields decision to delist me. Where do i begin? First of all what a place, futuristic, buzzing with energy and you just knew you were in a different league. They haven’t said yes but more importantly not a no either. Bottom line is they
Saw the very nice team at the Royal Papworth following the Harefields decision to delist me. Where do i begin? First of all what a place, futuristic, buzzing with energy and you just knew you were in a different league. They haven’t said yes but more importantly not a no either. Bottom line is they
Mrbojangles
in
Lung Conditions Community Forum
2 years ago
update
Hello all. I haven't been here for long time as I am trying to avoid media for now. Little update (if anyone read it) my liver nurse says that I am doing very well, I managed to do some houseworks, workouts and eat well. We proceed my check ups from every 3 weeks to every 8 weeks as my blood tests
Hello all. I haven't been here for long time as I am trying to avoid media for now. Little update (if anyone read it) my liver nurse says that I am doing very well, I managed to do some houseworks, workouts and eat well. We proceed my check ups from every 3 weeks to every 8 weeks as my blood tests
Bazinga89
in
British Liver Trust
2 years ago
My son has his first appointment with Vanderbilt Hepatologist this week, anything I need to be aware of?
My son finally has his first appointment with the hepatologist this week to just establish with them. We have been told he doesn't need a liver transplant yet from the GI physician. However, due to Covid and just how long it takes to get appointments for new patients, we wanted to get him established
My son finally has his first appointment with the hepatologist this week to just establish with them. We have been told he doesn't need a liver transplant yet from the GI physician. However, due to Covid and just how long it takes to get appointments for new patients, we wanted to get him established
Bloomwithgrace
in
Living with Fatty Liver and NASH
2 years ago
How long
Consultant is writing to Birmingham. Liver transplant team how long does it take from them receiving the letter will it take for us to hear anything 🙄
Consultant is writing to Birmingham. Liver transplant team how long does it take from them receiving the letter will it take for us to hear anything 🙄
Lippy42
in
British Liver Trust
2 years ago
Any young adults with kidney transplant?
Would like to exchange experience and how did you cope/adjust with life
Would like to exchange experience and how did you cope/adjust with life
vision22
in
Kidney Transplant
2 years ago
Questions about post transplant surgery JP drain
Did anyone have a JP drain after kidney transplant surgery? I have had a drain for 6 weeks and it’s still collecting 100cc of fluid. My doctors want it to get to 25cc which seems like it’ll be awhile longer. If you had a drain how long did you have it? Just trying to get an idea of the longest time.
Did anyone have a JP drain after kidney transplant surgery? I have had a drain for 6 weeks and it’s still collecting 100cc of fluid. My doctors want it to get to 25cc which seems like it’ll be awhile longer. If you had a drain how long did you have it? Just trying to get an idea of the longest time.
Grammy820
in
Kidney Transplant
2 years ago
Update
Morning everyone my hubby went for his appointment with gastroenterologist yesterday after having mri escoptomy and ecg for his liver disease she said in simple terms his liver is "knackered " she is now writing to the liver transplant team in Birmingham. So we know if it goes further then ste will undergo
Morning everyone my hubby went for his appointment with gastroenterologist yesterday after having mri escoptomy and ecg for his liver disease she said in simple terms his liver is "knackered " she is now writing to the liver transplant team in Birmingham. So we know if it goes further then ste will undergo
Lippy42
in
British Liver Trust
2 years ago
Kidney Teansplant and CMV
My husband is 14 months post kidney transplant. He just tested positive for the CMV virus and has a lot of fatigue. Has anyone else had CMV and what were your symptoms. He’s on Valcyte.
My husband is 14 months post kidney transplant. He just tested positive for the CMV virus and has a lot of fatigue. Has anyone else had CMV and what were your symptoms. He’s on Valcyte.
Sister9555
in
Kidney Transplant
2 years ago
Transplant waiting list imminent/Nintedanib feedback
Hi all, Been a while again since my last update. I was hoping to bring you definitive news on the transplant situation but we're not quite there yet as I've still to meet the team to discuss when to go on the transplant list and find out how long my window of opportunity might be. However, the good
Hi all, Been a while again since my last update. I was hoping to bring you definitive news on the transplant situation but we're not quite there yet as I've still to meet the team to discuss when to go on the transplant list and find out how long my window of opportunity might be. However, the good
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
Kidney transplant podcast: Benji's Story
Hi everyone, I've been working with the National Kidney Foundation on some episodes of Kidney Transplant Conversations, it's a podcast that is available on all the leading platforms. The most recent episode features Benji, he had his promising basketball career cut short by kidney failure, and he would
Hi everyone, I've been working with the National Kidney Foundation on some episodes of Kidney Transplant Conversations, it's a podcast that is available on all the leading platforms. The most recent episode features Benji, he had his promising basketball career cut short by kidney failure, and he would
bethedifference
in
Kidney Transplant
2 years ago
Nintedanib offers new hope as transplant recommendation approaches
Hi all, It's been a fair while since I last updated - longer than I'd have liked - but in a way its a good thing as I actually have a fair bit to update on as a result... The additional heart tests involving tracers, a CT scan and an hour long MRI which really tested my lung capacity with one or two
Hi all, It's been a fair while since I last updated - longer than I'd have liked - but in a way its a good thing as I actually have a fair bit to update on as a result... The additional heart tests involving tracers, a CT scan and an hour long MRI which really tested my lung capacity with one or two
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
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