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Islet cell transplant
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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
Tapering while new issues
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma, having stem cell transplant in Jan 2018, as a mom, this was very hard to see
arvine
in
Pain Concern
1 year ago
Tooth extraction and tocilizumab
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from tocilizumab and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (tocilizumab and methotrexate) first? Advice appreciated
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from tocilizumab and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (tocilizumab and methotrexate) first? Advice appreciated
WaltzG
in
PMRGCAuk
10 months ago
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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
Red face / flushing. Possible rosacea
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Kraskie1915
in
CLL 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
Autoimmune Registry
I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got
I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got
HeronNS
in
PMRGCAuk
10 months ago
Life beyond Myelofibrosis
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
Scaredy_cat
in
MPN Voice
1 year 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
introducing myself...
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
jmcasbar
in
Leukaemia Support
1 year ago
Liver Transplant Assessment
I attended a two day liver transplant assessment on 22nd May which was hard work but I gave it everything to keep going and do my best. They promised a result on the Friday after by phone. Eventually i got the call after waiting anxiously all day to say they had been to be busy to discuss my case and
I attended a two day liver transplant assessment on 22nd May which was hard work but I gave it everything to keep going and do my best. They promised a result on the Friday after by phone. Eventually i got the call after waiting anxiously all day to say they had been to be busy to discuss my case and
Mitmab
in
British Liver Trust
1 year ago
Trying to Maintain Money and Mental Health
My spouse received a kidney transplant in November 2022. He was on dialysis for 18 months and also developed diabetic retinopathy which requires 5 surgeries prior to and after his transplant. He wants to work and going on disability would be terrible for his mental health. We are having trouble financially
My spouse received a kidney transplant in November 2022. He was on dialysis for 18 months and also developed diabetic retinopathy which requires 5 surgeries prior to and after his transplant. He wants to work and going on disability would be terrible for his mental health. We are having trouble financially
Livi5072
in
Kidney Transplant
1 year ago
question about brain aneurysm and transplant
When I was in my he hospital they found a 3mm maybe a little bigger aneurysm on left side of brain. I have had one aneurysm clip back in 1998 and 1999 I had a subarachnoid hemorrhage. I had a grandma seizure and super low blood pressure they took me off all blood pressure meds I was on. The neurologist
When I was in my he hospital they found a 3mm maybe a little bigger aneurysm on left side of brain. I have had one aneurysm clip back in 1998 and 1999 I had a subarachnoid hemorrhage. I had a grandma seizure and super low blood pressure they took me off all blood pressure meds I was on. The neurologist
Beachgirl32
in
Kidney Transplant
1 year ago
Discitis nearly killed me. I suspect streptococcus B was injected into me by Hormone injection for PCa
I have PCa. I am also immune suppressed due to kidney transplant. In February I started hormone injections due to BCR. A couple of weeks later I started to get back pain. Doctor prescribed pain killers. After about 6 weeks, many blood tests, consultations and an MRI scan I was diagnosed with discitis
I have PCa. I am also immune suppressed due to kidney transplant. In February I started hormone injections due to BCR. A couple of weeks later I started to get back pain. Doctor prescribed pain killers. After about 6 weeks, many blood tests, consultations and an MRI scan I was diagnosed with discitis
Graham49
in
Advanced Prostate Cancer
1 year ago
New diagnosis of hf
Hi 1st post for me My brother had a heart transplant at 39 due to severe heart failure (he is now 2 years post op and doing amazingly) so I went to see to the Dr to get checked after his team suggested it. I'm 39 and just been diagnosed with hf, my ef is 32%, I am asymptomatic so far. I have been prescribed
Hi 1st post for me My brother had a heart transplant at 39 due to severe heart failure (he is now 2 years post op and doing amazingly) so I went to see to the Dr to get checked after his team suggested it. I'm 39 and just been diagnosed with hf, my ef is 32%, I am asymptomatic so far. I have been prescribed
Forrest14
in
British Heart Foundation
1 year ago
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