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Stage 4 cardiac AL amyloidosis
Hello! I'm 35. I was diagnosed with this in May 2023. Currently receiving D-VCd treatment form my hematologist and receiving heart monitoring, care, and transplant preparation from my cardiologist. Who else has experienced treatment or this or received a heart transplant? Any tips or useful questions
Hello! I'm 35. I was diagnosed with this in May 2023. Currently receiving D-VCd treatment form my hematologist and receiving heart monitoring, care, and transplant preparation from my cardiologist. Who else has experienced treatment or this or received a heart transplant? Any tips or useful questions
BeardandCoffee
in
Men's Health Forum
1 year ago
Psychotic Episodes
Just had a very successful liver transplant 8 weeks ago and am in the very lucky position to feeling better than I have in years. Now everything has settled into a nice routine I just wanted to raise awareness to post op psychotic episodes. I was warned that it is common for post-transplant patients
Just had a very successful liver transplant 8 weeks ago and am in the very lucky position to feeling better than I have in years. Now everything has settled into a nice routine I just wanted to raise awareness to post op psychotic episodes. I was warned that it is common for post-transplant patients
Shep666
in
British Liver Trust
1 year ago
Reviewers needed for a Netflix Film about a lady with lupus
Hi everyone! There is a film on Netflix (UK) called "Beyond the Universe" about a pianist who has lupus and is waiting for a kidney transplant. Here is the trailer for the movie - https://www.youtube.com/watch?v=8OkqLOe_mZI. The movie can be watched with English subtitles and is 2 hours and 6 minutes
Hi everyone! There is a film on Netflix (UK) called "Beyond the Universe" about a pianist who has lupus and is waiting for a kidney transplant. Here is the trailer for the movie - https://www.youtube.com/watch?v=8OkqLOe_mZI. The movie can be watched with English subtitles and is 2 hours and 6 minutes
Chanpreet_Walia
LUPUS UK
in
LUPUS UK
1 year ago
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Enzymes
I was prescribed Creon not knowing they contained Pork ( I'm allergic to it) and within no time I had a reaction and had to take a antihistamine. Back to drawing board as all of them contain pork. My GP asked my consultant Gastroenterologist what's her advice. I'm still waiting for my urgent first appointment
I was prescribed Creon not knowing they contained Pork ( I'm allergic to it) and within no time I had a reaction and had to take a antihistamine. Back to drawing board as all of them contain pork. My GP asked my consultant Gastroenterologist what's her advice. I'm still waiting for my urgent first appointment
Jackie1947
in
Chronic Pancreatitis Support
1 year ago
hyperventilating
Everytime I cough hard as a result of breathlessness because of any slight movemnt I make Ive started hyperventilating this has only happened very recently Im used to getting sick after it but its scary this hyperventilating its very scary Ive never Mum once again wont accept that Im hyperventilating
Everytime I cough hard as a result of breathlessness because of any slight movemnt I make Ive started hyperventilating this has only happened very recently Im used to getting sick after it but its scary this hyperventilating its very scary Ive never Mum once again wont accept that Im hyperventilating
horseygirl_0103
in
Lung Conditions Community Forum
1 year ago
Just found out I need a kidney transplant
Hello, I just found out I need a kidney transplant. I developed kidney disease from taking a medicine that scarred and damaged my kidneys and they’ve just gotten worse and worse. After a biopsy, we discovered that my kidneys are even worse than the numbers show. I am so overwhelmed. My mom could possibly
Hello, I just found out I need a kidney transplant. I developed kidney disease from taking a medicine that scarred and damaged my kidneys and they’ve just gotten worse and worse. After a biopsy, we discovered that my kidneys are even worse than the numbers show. I am so overwhelmed. My mom could possibly
Spaghetto
in
Kidney Transplant
1 year ago
Creatinine increasing
Hi I am 6 yers post kidney transplant non related living donor. My Cr has increased from a baseline of 1.0 to 1.7(3 mo ago) and today 2.4 My Tacro was elevated 3 months ago to 8.3, but now dropped to 6.1. Is this normal for a Cr? I am scared I am going into rejection. I am waiting to hear from
Hi I am 6 yers post kidney transplant non related living donor. My Cr has increased from a baseline of 1.0 to 1.7(3 mo ago) and today 2.4 My Tacro was elevated 3 months ago to 8.3, but now dropped to 6.1. Is this normal for a Cr? I am scared I am going into rejection. I am waiting to hear from
kidneymom09
in
Kidney Transplant
1 year ago
Home Oxygen is a game changer
Afternoon all! Mindful that it has been a fair while since my last post - much longer than intended. However, in many ways it's a good thing as it means I've got more to update you all on. First and foremost, I'm still on the lung transplant list and have yet to get another call since being re-added
Afternoon all! Mindful that it has been a fair while since my last post - much longer than intended. However, in many ways it's a good thing as it means I've got more to update you all on. First and foremost, I'm still on the lung transplant list and have yet to get another call since being re-added
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
1 year ago
continuing the journey
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
FiArt12X
in
CLL Support
3 days ago
Sorry it has been a while with an update on Ruxolitinib
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
wendycu
in
MPN Voice
5 days ago
Quite the CLL journey
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
FiArt12X
in
CLL Support
5 days ago
Japan and stem cells treatment
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Bluebell2022
in
Cure Parkinson's
6 days ago
New member - Post ET MF (Australia)
I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that
I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that
Hatchie
in
MPN Voice
24 days ago
Stem cell transplant (SCT) 15 months on
I'm now 15 months after my SCT and in my my recent review my figures are improving:WBC 4.0 HB 139 Neut 2.3, lymph1.12 and platelets 106 ( highest for a couple of years). I also had my CD4 lymphocytes measured and can now come off Acyclovir and pentamidine. Hooray! I hated those nebulisers. This leaves
I'm now 15 months after my SCT and in my my recent review my figures are improving:WBC 4.0 HB 139 Neut 2.3, lymph1.12 and platelets 106 ( highest for a couple of years). I also had my CD4 lymphocytes measured and can now come off Acyclovir and pentamidine. Hooray! I hated those nebulisers. This leaves
Scaredy_cat
in
MPN Voice
25 days ago
stem cell transplant survival with MF
This link gives some figures for overall survival with or without a transplant. The headline really is the initial mortality close to the transplant is only worth risking if your MF is quite bad. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7218417/
This link gives some figures for overall survival with or without a transplant. The headline really is the initial mortality close to the transplant is only worth risking if your MF is quite bad. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7218417/
Scaredy_cat
in
MPN Voice
27 days ago
Anyone turn down a stem cell transplant?
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
LongETinUS
in
MPN Voice
29 days ago
On another subject …
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
lizzziep
in
MPN Voice
1 month ago
Elevated creatinine from tacrolimus?
I am 19 months out from my kidney transplant from a deceased donor. Was doing well and my creatinine was actually within the normal range at about a year post transplant. However, since then my creatinine has been creeping up and now is 1.74. Have tried lowering my protein intake, and more hydration
I am 19 months out from my kidney transplant from a deceased donor. Was doing well and my creatinine was actually within the normal range at about a year post transplant. However, since then my creatinine has been creeping up and now is 1.74. Have tried lowering my protein intake, and more hydration
Hawk12
in
Kidney Transplant Patient Support
1 year ago
Kidney Transplant help
Hi everyone! Hope everyone is having a wonderful Sunday. I got a call from a gentleman who’s been trying to test as a living donor for me. Mayo Clinic has approved him. We are so excited, grateful, thankful, humbled and yet nervous at the same time. ****Can anyone tell me what they have experienced
Hi everyone! Hope everyone is having a wonderful Sunday. I got a call from a gentleman who’s been trying to test as a living donor for me. Mayo Clinic has approved him. We are so excited, grateful, thankful, humbled and yet nervous at the same time. ****Can anyone tell me what they have experienced
Highgfr
in
Kidney Disease
1 year ago
The Bone-Marrow-Transplant Revolution
https://www.theatlantic.com/health/archive/2024/04/bone-marrow-transplant-mismatched-donor/678100/
https://www.theatlantic.com/health/archive/2024/04/bone-marrow-transplant-mismatched-donor/678100/
Hidden
in
CLL Support
1 month ago
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