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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
elevate ALT post transplant
Hi I had my liver transplant 6 months ago and have felt fantastic ever since. No issues after transplant and blood tests at 5 months showed my liver function and kidney function were excellent. Consultant just rung today with blood results at 6 months and my ALT levels are elevated. Put me back on
Hi I had my liver transplant 6 months ago and have felt fantastic ever since. No issues after transplant and blood tests at 5 months showed my liver function and kidney function were excellent. Consultant just rung today with blood results at 6 months and my ALT levels are elevated. Put me back on
Bantam2
in
British Liver Trust
1 year ago
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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
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
5 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
5 months ago
Dad has stage 4 cirrhosis
Hi everyone, I have recently found out my dad has stage 4 liver cirrhosis. He isn't eligle for a liver transplant the doctors said he wouldn't be a candidate ( I think this may be because he has COPD) . I'm just so heart broken and so is my Dad. I'm trying to understand what this means for him though.Can
Hi everyone, I have recently found out my dad has stage 4 liver cirrhosis. He isn't eligle for a liver transplant the doctors said he wouldn't be a candidate ( I think this may be because he has COPD) . I'm just so heart broken and so is my Dad. I'm trying to understand what this means for him though.Can
Lplplp14
in
British Liver Trust
1 year 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
5 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 transplant advice - missing IVC vein.
Hello everyone! It has been some time since I last visited this forum, but I wanted to reach out for some advice. Any reply no matter how small would appreciated. My wife has been experiencing liver pain for almost 8 years. About a year ago, she underwent a fibro scan, which showed a reading of
Hello everyone! It has been some time since I last visited this forum, but I wanted to reach out for some advice. Any reply no matter how small would appreciated. My wife has been experiencing liver pain for almost 8 years. About a year ago, she underwent a fibro scan, which showed a reading of
RAAN88
in
British Liver Trust
1 year ago
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis.
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
PhysAssist
in
MPN Voice
5 months ago
Just wanted to share my Primary Myelofibrosis journey so far…….
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
LFCLove
in
MPN Voice
5 months ago
Defenestration or detouring of cysts in PLD
Recently went to King’s London for possible liver transplant tests due to a large polycystic liver and they feel it is the wrong time. That enough good parts of my liver remain. However it is very large and they are considering draining the cysts. Anyone out there had similar experience ? Jo
Recently went to King’s London for possible liver transplant tests due to a large polycystic liver and they feel it is the wrong time. That enough good parts of my liver remain. However it is very large and they are considering draining the cysts. Anyone out there had similar experience ? Jo
PostivelyJo
in
British Liver Trust
1 year 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
Liver Transplant Kings College
Hi This is my first post here so I’m a bit nervous…I was just wondering if anyone had encountered any problems with the transplant assessment process at Kings College Hospital in London or problems with the care they received while there. I have had huge issues and oversights with them and I was
Hi This is my first post here so I’m a bit nervous…I was just wondering if anyone had encountered any problems with the transplant assessment process at Kings College Hospital in London or problems with the care they received while there. I have had huge issues and oversights with them and I was
Missrogerson1
in
British Liver Trust
1 year 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
biochemical recurrence after RP. +post leukemia
RP surgery 3/2020. Psa levels stable less than .01 for two years. 6/23 thru 12/23 levels have been .18 to .41. Complication 8/22 diagnosed with AML Leukemia. 5 rounds of chemo and a bone marrow transplant on 1/5/2023. Leukemia is now in complete remission, my blood dna is my donor’s - 40 year
RP surgery 3/2020. Psa levels stable less than .01 for two years. 6/23 thru 12/23 levels have been .18 to .41. Complication 8/22 diagnosed with AML Leukemia. 5 rounds of chemo and a bone marrow transplant on 1/5/2023. Leukemia is now in complete remission, my blood dna is my donor’s - 40 year
junkwerc
in
Prostate Cancer Network
5 months ago
High BLood Pressure, Kidney failure, cause discovered
Super high blood pressure, average 180/110 past two years. OVer 10 different BP meds failed to reduce BP. Kidney GFR dropped from upper 50s two years ago to 22 last week in hospital. After hospital and fluids back up to 31. Kidney biopsy last November showed protein crystals in kidneys. Bone
Super high blood pressure, average 180/110 past two years. OVer 10 different BP meds failed to reduce BP. Kidney GFR dropped from upper 50s two years ago to 22 last week in hospital. After hospital and fluids back up to 31. Kidney biopsy last November showed protein crystals in kidneys. Bone
phebamom
in
High Blood Pressure Support
5 months ago
Starting Home Dialysis-Advice?
I received a kidney transplant in 2014 and now I need another one. I had never been on dialysis before but now I have to go on. I have elected to do dialysis at home. I'm nervous about every part of it from doing it correctly to the amount of space I will need to store materials to whether or not I will
I received a kidney transplant in 2014 and now I need another one. I had never been on dialysis before but now I have to go on. I have elected to do dialysis at home. I'm nervous about every part of it from doing it correctly to the amount of space I will need to store materials to whether or not I will
WillaCather
in
Kidney Transplant
1 year ago
Good sats - so why so breathless?
THAT is indeed the question. Why, with my peripheral O2 levels at 94/5 %even 96% am I still fighting to breath? It goes like this. I wake short of breath. I rise and take my Oximeter (I have several; they all show the same) . My level is, say 92%. I do controlled breathing using a computer monitor
THAT is indeed the question. Why, with my peripheral O2 levels at 94/5 %even 96% am I still fighting to breath? It goes like this. I wake short of breath. I rise and take my Oximeter (I have several; they all show the same) . My level is, say 92%. I do controlled breathing using a computer monitor
Timberman
in
Lung Conditions Community Forum
6 months ago
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