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AXSL1 gene mutation
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
merlisa
in
MPN Voice
4 months ago
SCT journey update No.2
Hi all, following on from my last post, have just heard from my clinical nurse that they have found three very good donor matches on the registers!! Have been somewhat impatient waiting but as this situation is so new and different for everyone, has been difficult to gauge what is right or wrong. Anyway
Hi all, following on from my last post, have just heard from my clinical nurse that they have found three very good donor matches on the registers!! Have been somewhat impatient waiting but as this situation is so new and different for everyone, has been difficult to gauge what is right or wrong. Anyway
LFCLove
in
MPN Voice
4 months ago
PBC or fatty liver
Does this sound like fatty liver or PBC? I was diagnosed 9 years ago with mild fatty liver. They were checking for PBC because I had a ama m2 of 69 and a mildly elevated Alt. I lost weight and my Alt came down. US showed an enlarged liver and biopsy showed only mild fatty liver. I went back to Hepa last
Does this sound like fatty liver or PBC? I was diagnosed 9 years ago with mild fatty liver. They were checking for PBC because I had a ama m2 of 69 and a mildly elevated Alt. I lost weight and my Alt came down. US showed an enlarged liver and biopsy showed only mild fatty liver. I went back to Hepa last
Zelda5
in
British Liver Trust
11 months ago
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Wonderful News - portal hypertension reversal
I am filled with joy to let you know that I got my duplex vascular Doppler ultrasound results back and I do NOT have portal hypertension!!! 😁 I have mild cirrhosis. Scarring/fibrosis. Everything after that is excellent news! Normal pancreas, gallbladder, kidney and SPLEEN! 🥳 it’s 11 cm. Not
I am filled with joy to let you know that I got my duplex vascular Doppler ultrasound results back and I do NOT have portal hypertension!!! 😁 I have mild cirrhosis. Scarring/fibrosis. Everything after that is excellent news! Normal pancreas, gallbladder, kidney and SPLEEN! 🥳 it’s 11 cm. Not
Greengal314
in
British Liver Trust
11 months ago
CLL itching
I am convinced that my constant itching problem is a direct result of my condition. Itching has increased over the years and now constant . My only relief is alcohol and THC laced Gummies . All other suggestions would be appreciated .
I am convinced that my constant itching problem is a direct result of my condition. Itching has increased over the years and now constant . My only relief is alcohol and THC laced Gummies . All other suggestions would be appreciated .
Romeo22
in
CLL Support
11 months ago
Still on hold for stem cell transplant
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
dwolden
in
CLL Support
4 months ago
Ascites drain
Good morning. My husband was taken in for an ascetic drain in November and was found to have Peritonitis which was treated before the drain. He is now on a daily oral antibiotic. His tummy swelled again and we booked a further drain in December but when we got there his tummy was too soft to get the
Good morning. My husband was taken in for an ascetic drain in November and was found to have Peritonitis which was treated before the drain. He is now on a daily oral antibiotic. His tummy swelled again and we booked a further drain in December but when we got there his tummy was too soft to get the
Breakfastbabe
in
British Liver Trust
5 months ago
Help with fibroscan results please
Hi I have had fatty liver for I long time but to be honest didn't really know how serious this could be as my GP never seemed to concerned ,my liver tests have been raised for a long time, only really discovering this now , was always told one test was slighty raised but now know it was three ,today
Hi I have had fatty liver for I long time but to be honest didn't really know how serious this could be as my GP never seemed to concerned ,my liver tests have been raised for a long time, only really discovering this now , was always told one test was slighty raised but now know it was three ,today
jamie18
in
British Liver Trust
11 months ago
So much confusion so much pain
I tell you I struggle every day. I look at pics of my wife from this time last year, 2 years ago 3 years ago. My wife was never a drinker. We had a glass of wine at Thanksgiving and Christmas. Every now and then, maybe once or twice a year. She would have a drink at our friends. When we moved
I tell you I struggle every day. I look at pics of my wife from this time last year, 2 years ago 3 years ago. My wife was never a drinker. We had a glass of wine at Thanksgiving and Christmas. Every now and then, maybe once or twice a year. She would have a drink at our friends. When we moved
Wolivere
in
British Liver Trust
11 months ago
HSCT early in MS
This is an interesting story about two women who went to Mexico and got Hematopoietic Stem Cell Transplantation early in their disease. One, who was diagnosed with PPMS, received her transplant in the third year after diagnosis. The other, who was diagnosed with RRMS, got her transplant just twelve
This is an interesting story about two women who went to Mexico and got Hematopoietic Stem Cell Transplantation early in their disease. One, who was diagnosed with PPMS, received her transplant in the third year after diagnosis. The other, who was diagnosed with RRMS, got her transplant just twelve
BettysMom
in
My MSAA Community
4 months ago
Stem Cell transplant register search goes on…
Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant register. The Nuclear medicine tests that I have just had will be added to MyChart which Addenbrookes uses to show appointments, test results
Unfortunately my next appointment with Consultant has been delayed until early April as they are no further advanced in their search for matches on transplant register. The Nuclear medicine tests that I have just had will be added to MyChart which Addenbrookes uses to show appointments, test results
LFCLove
in
MPN Voice
4 months ago
Kidney Transplant
Had a KT last January 2023 still battling fatigue and tiredness wondering if anyone else has these problems after 6 months.
Had a KT last January 2023 still battling fatigue and tiredness wondering if anyone else has these problems after 6 months.
Zbiguy
in
Kidney Disease
1 year ago
Rash from Cirrhosis?
Anyone with cirrhosis have a rash other than jaundice or spider veins? I have little raised red bumps that get very itchy and scaly. They’re mostly on my legs and my back and some along my waistline.
Anyone with cirrhosis have a rash other than jaundice or spider veins? I have little raised red bumps that get very itchy and scaly. They’re mostly on my legs and my back and some along my waistline.
FlippinOut
in
British Liver Trust
11 months ago
Glad to see more and more players are jumping into the stem cell therapy
A Phase 1/2a clinical trial evaluating TED-A9, a human stem cell-based therapy, in people with Parkinson’s disease has finished dosing with no safety concerns identified to date. Embryonic stem cell transplant showing safety in 12 patients The therapy, delivered as a cell transplant directly into
A Phase 1/2a clinical trial evaluating TED-A9, a human stem cell-based therapy, in people with Parkinson’s disease has finished dosing with no safety concerns identified to date. Embryonic stem cell transplant showing safety in 12 patients The therapy, delivered as a cell transplant directly into
Farooqji
in
Cure Parkinson's
4 months ago
From the depths of despair, there is hope
Hi I have written a couple of posts on here but just want to update you re my progress to demonstrate how, with determination, you can turn things around. To summarise, last May/June I was hospitalised for over5 weeks. My drinking had slowly increased, (though I had always liked a drink) following
Hi I have written a couple of posts on here but just want to update you re my progress to demonstrate how, with determination, you can turn things around. To summarise, last May/June I was hospitalised for over5 weeks. My drinking had slowly increased, (though I had always liked a drink) following
J4ck1369
in
British Liver Trust
11 months ago
We don't know what to expect
Hello 👋 our 60yr old father has ARLD, cirrhosis is present. 12 months since we knew for certain, diagnosed. He was clean 5 months. Then it started again. He's now same as last Yr. Ascites present. Malnourished and not eating. Not moving out his chair. Sat in his own feaces. Only input is whiskey. I
Hello 👋 our 60yr old father has ARLD, cirrhosis is present. 12 months since we knew for certain, diagnosed. He was clean 5 months. Then it started again. He's now same as last Yr. Ascites present. Malnourished and not eating. Not moving out his chair. Sat in his own feaces. Only input is whiskey. I
Sammi0685
in
British Liver Trust
11 months ago
Stem cell transplant
Hello, Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement? Please tell all! Is it a viable treatment option?
Hello, Has anyone woth AMN here ever had a stem cell transplant as a result of a diagnoses involving cerebral involvement? Please tell all! Is it a viable treatment option?
A7x1823eb
in
AMN EASIER
5 months ago
liver enzymes going up and down
I had a routine blood test 18 months ago which showed elevated GGT at 126. My GP told me to cut down on alcohol and I stopped having any alcohol at home and just had an occasional drink if I went out socially. I’ve never been a big drinker anyway. Fast forward to last September when I had another blood
I had a routine blood test 18 months ago which showed elevated GGT at 126. My GP told me to cut down on alcohol and I stopped having any alcohol at home and just had an occasional drink if I went out socially. I’ve never been a big drinker anyway. Fast forward to last September when I had another blood
Patdoyle
in
British Liver Trust
5 months ago
recent kidney transplant
June 27, 2023 Just 10 weeks ago I had a living kidney donor transplant. Looking for advice as far as lab values when they’re not normal or things that sound concerning such as a rise in antibody numbers. I wondered how they treated that and how difficult it was to get things stabilized. I appreciate
June 27, 2023 Just 10 weeks ago I had a living kidney donor transplant. Looking for advice as far as lab values when they’re not normal or things that sound concerning such as a rise in antibody numbers. I wondered how they treated that and how difficult it was to get things stabilized. I appreciate
Tankjsl
in
Kidney Transplant
1 year ago
Diet books for NASH
Trying to find out as much as I can to help my hubby. He has recently been diagnosed with non alcoholic liver cirrhosis 4 weeks ago and spent two separate stays on my ICU where I work with sepsis, jaundice, ascities. Can anyone recommend any books etc for people with NASH. Trying to get as much
Trying to find out as much as I can to help my hubby. He has recently been diagnosed with non alcoholic liver cirrhosis 4 weeks ago and spent two separate stays on my ICU where I work with sepsis, jaundice, ascities. Can anyone recommend any books etc for people with NASH. Trying to get as much
Snips71
in
Liver4Life
11 months ago
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