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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
3 months 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
3 months ago
angry about kidney transplant?
I received a kidney transplant about a year ago. I was donated a live one. However, I was very uncertain about transplant, and feel like I was pushed into having one due to other people’s insistence, amongst other things. As such, I am very resentful and angry. additionally, everyone treats my donor
I received a kidney transplant about a year ago. I was donated a live one. However, I was very uncertain about transplant, and feel like I was pushed into having one due to other people’s insistence, amongst other things. As such, I am very resentful and angry. additionally, everyone treats my donor
Asertfev
in
Kidney Transplant
1 year ago
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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
3 months ago
AF Medications
I have had AF for a few months now, I have also attended A & E four times recently with palpations and chest pains. Each time they have given me either, sometimes both, potassium or magnesium intravenously. I have also had a kidney transplant (4 years ago). They cannot give me any more medication
I have had AF for a few months now, I have also attended A & E four times recently with palpations and chest pains. Each time they have given me either, sometimes both, potassium or magnesium intravenously. I have also had a kidney transplant (4 years ago). They cannot give me any more medication
Mismarswe
in
AF Association
1 year 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
3 months 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
3 months ago
Desensitization for second transplant (cadaver )
Hi all Anyone who has experience with desensitization procedure for carrying out second kidney transplant? I want to know the process and expected results. My crossmatch came positive or weak positive 7 times and I want to consider desensitization procedure now.
Hi all Anyone who has experience with desensitization procedure for carrying out second kidney transplant? I want to know the process and expected results. My crossmatch came positive or weak positive 7 times and I want to consider desensitization procedure now.
ashok5085
in
Kidney Transplant
1 year ago
update
just wanted to let you all know i had my kidney transplant from my live donor (older brother) on June 21st everything’s going okay and my GFR is 101% our hla was a perfect match, they said the only way things could get better is if we were identical twins 🙌🏼
just wanted to let you all know i had my kidney transplant from my live donor (older brother) on June 21st everything’s going okay and my GFR is 101% our hla was a perfect match, they said the only way things could get better is if we were identical twins 🙌🏼
renalrose
in
Kidney Dialysis
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
3 months ago
Stem cell transplant
I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran out of options and stem is my last shot I have held off as long as I can so my partner could have surgery and get back on his feet but my dates
I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran out of options and stem is my last shot I have held off as long as I can so my partner could have surgery and get back on his feet but my dates
Leighcox85
in
MPN Voice
3 months ago
Platelets dropped after obinituzumab and won't rise even after transfusion 🚨
Dear all, First of all, thank you very much for all the help and care I have always found on HealthUnlocked. I had my first infusion of obinituzumab and in my case, mainly due to my nephrotic syndrome kidney problem, I had a few problems. High fevers, which are common Attacks of hiccups that last
Dear all, First of all, thank you very much for all the help and care I have always found on HealthUnlocked. I had my first infusion of obinituzumab and in my case, mainly due to my nephrotic syndrome kidney problem, I had a few problems. High fevers, which are common Attacks of hiccups that last
BMFCDRW
in
CLL Support
3 months ago
Preemptive Kidney Transplant
I am schedule to have a preemptive transplant in just under a month. Currently I am very tired and sleep a lot. I am nausious all the time. My GFR is at 13 but I have not done any dialyisis. Can anyone share with me tips and tricks you wish you knew going into the surgery and how recovery was? Do
I am schedule to have a preemptive transplant in just under a month. Currently I am very tired and sleep a lot. I am nausious all the time. My GFR is at 13 but I have not done any dialyisis. Can anyone share with me tips and tricks you wish you knew going into the surgery and how recovery was? Do
LRob0223
in
Kidney Transplant
1 year ago
Newly diagnosed- fusiform anuersym post kidney transplant
I am 36 and had a kidney transplant almost 1.5 years ago from polycystic kidney disease. I found out about a month ago I have a brain aneurysm. My uncle passed away from a ruptured brain aneurysm. I am not well researched in this, but I am trying to learn as much as I can so I can make wise decisions
I am 36 and had a kidney transplant almost 1.5 years ago from polycystic kidney disease. I found out about a month ago I have a brain aneurysm. My uncle passed away from a ruptured brain aneurysm. I am not well researched in this, but I am trying to learn as much as I can so I can make wise decisions
PKDpostTRANSPLANT
in
Brain Aneurysm Support
1 year ago
Human stem cell transplantation for Parkinson’s disease: A systematic review
Interestinghttps://www.researchgate.net/publication/379454508_Human_stem_cell_transplantation_for_Parkinson's_disease_A_systematic_review_of_in_situ_survival_and_maturation_of_progenitors_derived_from_human_embryonic_or_induced_stem_cells_in_Parkinsonian_models
Interestinghttps://www.researchgate.net/publication/379454508_Human_stem_cell_transplantation_for_Parkinson's_disease_A_systematic_review_of_in_situ_survival_and_maturation_of_progenitors_derived_from_human_embryonic_or_induced_stem_cells_in_Parkinsonian_models
Farooqji
in
Cure Parkinson's
4 months ago
Momelotinib for Myelofibrosis
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Cazbolac
in
MPN Voice
4 months ago
saving my dad
Hi all! My dad was recently diagnosed with Pulmonary Fibrosis. He is only 64 years old and last year this same time he was in great health! Drs are unsure if it’s IPF or another severe form of pulmonary fibrosis. He had a lung biopsy that came back inconclusive. He relies on full time oxygen and coughs
Hi all! My dad was recently diagnosed with Pulmonary Fibrosis. He is only 64 years old and last year this same time he was in great health! Drs are unsure if it’s IPF or another severe form of pulmonary fibrosis. He had a lung biopsy that came back inconclusive. He relies on full time oxygen and coughs
Timslungs
in
Lung Conditions Community Forum
1 year ago
Travel and Ibrance
I was diagnosed with MBC in June, 2023. I am on Ibrance and letrozole. My medical history is complicated by having had a donor stem cell transplant in 2018 for T cell lymphoma. My immune system was compromised from that but now with Ibrance I'm not sure what to expect in terms of traveling and
I was diagnosed with MBC in June, 2023. I am on Ibrance and letrozole. My medical history is complicated by having had a donor stem cell transplant in 2018 for T cell lymphoma. My immune system was compromised from that but now with Ibrance I'm not sure what to expect in terms of traveling and
Artesa
in
SHARE Metastatic Breast Cancer
4 months ago
stem cell for et?
Would stem cell transplant be an option for ET? I cannot take the Hydrea or Anagralide. Thanks for your feed back
Would stem cell transplant be an option for ET? I cannot take the Hydrea or Anagralide. Thanks for your feed back
Preacherswife
in
MPN Voice
4 months ago
Living with glaucoma
Hi All I've had glaucoma and Uveitis in both eyes for many years and have had numerous procedures and drains put in both eyes like many other glaucoma patients , I was told yesterday that a cornea transplant is not viable now because of the complications with my eye and that all they can do is monitor
Hi All I've had glaucoma and Uveitis in both eyes for many years and have had numerous procedures and drains put in both eyes like many other glaucoma patients , I was told yesterday that a cornea transplant is not viable now because of the complications with my eye and that all they can do is monitor
LondonStadium
in
Glaucoma UK
1 year ago
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