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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
AF for 4 days
I had my first episode of AF several years ago. I had another cope of episodes over a three or four year period. In January this year 2023 I was started on Apixaban but changed to Edoxaban a week ago because my blood pressure was low and I thought it was the reason for feeling tired. 4 days ago
I had my first episode of AF several years ago. I had another cope of episodes over a three or four year period. In January this year 2023 I was started on Apixaban but changed to Edoxaban a week ago because my blood pressure was low and I thought it was the reason for feeling tired. 4 days ago
GardenLover2
in
AF Association
1 year ago
BNP levels raised
Hello everybody I had to have a blood test recently as have been getting slightly more short of breath (SOB) on stairs and slopes. may have been due to some other meds I was prescribed. The GP phoned me and said i have a slightly raised BNP level and i have a face to face appointment with her on Wednesday
Hello everybody I had to have a blood test recently as have been getting slightly more short of breath (SOB) on stairs and slopes. may have been due to some other meds I was prescribed. The GP phoned me and said i have a slightly raised BNP level and i have a face to face appointment with her on Wednesday
Wightbaby
in
Atrial Fibrillation Support
1 year ago
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Stressing
I've been a bit quiet for a while but that doesn't mean to say I've stopped running. I've been ringing the changes with my runs and really enjoying them. Our park run was cancelled last week as part of the course was flooded but I got on the treadmill instead. I've also been going to my alternative
I've been a bit quiet for a while but that doesn't mean to say I've stopped running. I've been ringing the changes with my runs and really enjoying them. Our park run was cancelled last week as part of the course was flooded but I got on the treadmill instead. I've also been going to my alternative
Bruch1
Graduate
in
Couch to 5K
9 months ago
Fatigue and lethargy
I’m stage 4 ckd, and I am experiencing fatigue and lethargy on a daily basis. I find that I have very little energy, and I can barely accomplish anything beyond a couple of small tasks. I also have stage 3 non-alcoholic liver disease, and had open heart surgery in 2019. However, my recent echo gram
I’m stage 4 ckd, and I am experiencing fatigue and lethargy on a daily basis. I find that I have very little energy, and I can barely accomplish anything beyond a couple of small tasks. I also have stage 3 non-alcoholic liver disease, and had open heart surgery in 2019. However, my recent echo gram
CuriousCKD
in
Kidney Disease
1 year 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
Arrhythmia after open heart surgery - any others with similiar experiences?
Hi there, I'm new to this forum and looking forward to learning from you all. 8 weeks ago I had open heart surgey to correct a large atrial septal defect (hole in the heart). It was diagnosed at Christmas. Prior to this I had no cardiac symptoms at all - I was power lifting in the gym, cycling a 20km
Hi there, I'm new to this forum and looking forward to learning from you all. 8 weeks ago I had open heart surgey to correct a large atrial septal defect (hole in the heart). It was diagnosed at Christmas. Prior to this I had no cardiac symptoms at all - I was power lifting in the gym, cycling a 20km
LadyZ13
in
AF Association
1 year ago
AF but erratic pulse rate is below 100
Hi all, I am currently on a long distance walk in Sweden and had just finished 7 days of walking when I felt the jitters and realized I had started another AF episode. I am on Xarelto, bisoprolol and Irbesartan for BP. This episode is a little different in that my only real symptom is an irregular
Hi all, I am currently on a long distance walk in Sweden and had just finished 7 days of walking when I felt the jitters and realized I had started another AF episode. I am on Xarelto, bisoprolol and Irbesartan for BP. This episode is a little different in that my only real symptom is an irregular
Longdistancewalker
in
AF Association
1 year ago
Heart failure
My mum had heart failure. Was placed in a nursing home for end of life care. A DNR was placed on her . She went down really quickly and last few weeks of her life she was tormented having hallucinations. It was awful On her 6th day. I was called at 5pm to go in she had deteriorated and
My mum had heart failure. Was placed in a nursing home for end of life care. A DNR was placed on her . She went down really quickly and last few weeks of her life she was tormented having hallucinations. It was awful On her 6th day. I was called at 5pm to go in she had deteriorated and
Jencpj71
in
Thyroid UK
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
How long does it take to come around after coma?
Hi, My Dad has been in an induced coma for 11 days and then had a huge heart operation. They started to reduce his sedation day 4 post op, and he opened his eyes and blinked a little on command; then squeezed my Mums hand. They explained and they need to fit a trachi on Monday night, it’s now Wednesday
Hi, My Dad has been in an induced coma for 11 days and then had a huge heart operation. They started to reduce his sedation day 4 post op, and he opened his eyes and blinked a little on command; then squeezed my Mums hand. They explained and they need to fit a trachi on Monday night, it’s now Wednesday
JBean123
in
ICUsteps
1 year 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
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
A cautionary Flecainide tale
Brief history, I had two ablations in 2019, the second one being in Sept. I'm currently 56 and like exercise. Since 2019 I stopped competing and training for triathlon and knocked everything back loads. Around Oct 21 I noticed arrhythmias, looking back on my notes it mostly seemed to start with atrial
Brief history, I had two ablations in 2019, the second one being in Sept. I'm currently 56 and like exercise. Since 2019 I stopped competing and training for triathlon and knocked everything back loads. Around Oct 21 I noticed arrhythmias, looking back on my notes it mostly seemed to start with atrial
kitenski
in
AF Association
1 year ago
HDT b1 PROTOCOL
Morning all, I joined today the 1st August 2023. This, because I recently stumbled across Daphne Bryan's YouTube video about her journey with the Costantini "method". That being superdosing of vitamin B1 thiamine. I was able to find ampoules of Thiamine in 50 and 100mg doses, and I have nurses readily
Morning all, I joined today the 1st August 2023. This, because I recently stumbled across Daphne Bryan's YouTube video about her journey with the Costantini "method". That being superdosing of vitamin B1 thiamine. I was able to find ampoules of Thiamine in 50 and 100mg doses, and I have nurses readily
FoieGras
in
Cure Parkinson's
1 year 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
Hair Loss on Warfarin
Hi all, I don’t post very often. I’ve been taking warfarin since February 2021 after having two mechanical valves fitted. I know that I will need to see my doctor about this, but I am losing my hair, and it’s noticeable now, especially at the front. Does anyone else have this? What can be done to
Hi all, I don’t post very often. I’ve been taking warfarin since February 2021 after having two mechanical valves fitted. I know that I will need to see my doctor about this, but I am losing my hair, and it’s noticeable now, especially at the front. Does anyone else have this? What can be done to
Julie_O
in
Anticoagulation Support
10 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
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