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Quite the CLL journey
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
FiArt12X
in
CLL Support
2 months ago
Japan and stem cells treatment
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Bluebell2022
in
Cure Parkinson's
2 months ago
Help with symptoms in my 30s
Hi, so this is my first post so please bare with me, I was born with coarctation of aorta, multiples holes and ventricular septal defect. I had 2 open heart surgeries to repair the holes and coarctation of aorta by the time I was 3 months old. I have since been seen yearly by a cardiologist for Echocardiograms
Hi, so this is my first post so please bare with me, I was born with coarctation of aorta, multiples holes and ventricular septal defect. I had 2 open heart surgeries to repair the holes and coarctation of aorta by the time I was 3 months old. I have since been seen yearly by a cardiologist for Echocardiograms
Zaj23
in
British Heart Foundation
11 months ago
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Experiences with Metoprolol
I was dx with Parosyximal Afib in 2019 and, after the customary course of starting with a beta blocker - Metoprolol, which didn't work - and then adding flecainide which did help but not prevent breakthrough episodes, had an ablation on March 16 of 2022. After the ablation, I weaned off of the metoprolol
I was dx with Parosyximal Afib in 2019 and, after the customary course of starting with a beta blocker - Metoprolol, which didn't work - and then adding flecainide which did help but not prevent breakthrough episodes, had an ablation on March 16 of 2022. After the ablation, I weaned off of the metoprolol
willec49
in
AF Association
11 months ago
Metoprolol or not
I was dx with Parosyximal Afib in 2019 and, after the customary course of starting with a beta blocker - Metoprolol, which didn't work - and then adding flecainide which did help but not prevent breakthrough episodes, had an ablation on March 16 of 2022. After the ablation, I weaned off of the metoprolol
I was dx with Parosyximal Afib in 2019 and, after the customary course of starting with a beta blocker - Metoprolol, which didn't work - and then adding flecainide which did help but not prevent breakthrough episodes, had an ablation on March 16 of 2022. After the ablation, I weaned off of the metoprolol
willec49
in
Arrhythmia Alliance
11 months ago
2 Year wait for ablation
Hello everyone, I am new on this site but have looked in frequently over the last few years and have found some very helpful information. I have had PAF for 7 years, I am now 67, and have gone through various combinations of meds but currently on Verapamil, Flecainide and Apixaban. It has been hard
Hello everyone, I am new on this site but have looked in frequently over the last few years and have found some very helpful information. I have had PAF for 7 years, I am now 67, and have gone through various combinations of meds but currently on Verapamil, Flecainide and Apixaban. It has been hard
Scot01
in
Atrial Fibrillation Support
11 months ago
Medication interaction
I was recently diagnosed with AF and heart failure and prescribed digoxin and Bisoprolol as well as Edoxaban and now wonder if it is still safe to start my rescue pack on top of these. I have had Doxycyclin and 8 prednisolone daily prior to this. Also as breathlessness is supposedly a side effect of
I was recently diagnosed with AF and heart failure and prescribed digoxin and Bisoprolol as well as Edoxaban and now wonder if it is still safe to start my rescue pack on top of these. I have had Doxycyclin and 8 prednisolone daily prior to this. Also as breathlessness is supposedly a side effect of
Tykelady
in
Lung Conditions Community Forum
11 months ago
Shoukd I get another
I am a 69-year-old male that has been struggling with a fib for about eight years. I had my first ablation eight years ago didn't work. Had my second ablation about two months later that didn't work in about a year later I had my third ablation that did not work. I moved to Texas got a new EP. The new
I am a 69-year-old male that has been struggling with a fib for about eight years. I had my first ablation eight years ago didn't work. Had my second ablation about two months later that didn't work in about a year later I had my third ablation that did not work. I moved to Texas got a new EP. The new
jsanta
in
AF Association
11 months ago
Newly diagnosed angina
Just recently been diagnosed with angina after an episode of pain while running up a hill. I'd always thought the shoulder pain was connected to my brachial plexus pain, which was also diagnosed at same time (had it for years) and I was prescribed Gabapentin for this. The thing is this then cleared
Just recently been diagnosed with angina after an episode of pain while running up a hill. I'd always thought the shoulder pain was connected to my brachial plexus pain, which was also diagnosed at same time (had it for years) and I was prescribed Gabapentin for this. The thing is this then cleared
Xhouse
in
British Heart Foundation
11 months ago
Early-bird discount ending 2 weeks today!! Have you registered for Arrhythmia Alliance Annual Patients Day 2023 ?
Our Patient Services Team are looking forward to welcoming you! A dedicated event for patients\families and caregivers focusing on SVT, heart failure, implanted devices such as Pacemaker, ICDs etc and learn more about the signs of a SCA and heart attack. There will be many presentations from
Our Patient Services Team are looking forward to welcoming you! A dedicated event for patients\families and caregivers focusing on SVT, heart failure, implanted devices such as Pacemaker, ICDs etc and learn more about the signs of a SCA and heart attack. There will be many presentations from
TracyAdmin
ArrhythmiaAlliance
in
Arrhythmia Alliance
11 months ago
Mild aortic stenosis...is this normal?
A heart mumur was picked up when I was at the a&e back in June. Had an echocardiogram done September. Finally after trying to chase the a&e cardiologist who checked the echocardiogram he said my results were all normal. So I requested my results to check for myself as I feel rotten daily and it's says
A heart mumur was picked up when I was at the a&e back in June. Had an echocardiogram done September. Finally after trying to chase the a&e cardiologist who checked the echocardiogram he said my results were all normal. So I requested my results to check for myself as I feel rotten daily and it's says
Charts
in
Hughes Syndrome APS Forum
10 months ago
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
Heart Surgery
I am due surgery on 7th September. I will need one valve replacing and one valve replaced or repaired. I also have AF. Has anyone had similar that can help me with my anxiety over having all this done.
I am due surgery on 7th September. I will need one valve replacing and one valve replaced or repaired. I also have AF. Has anyone had similar that can help me with my anxiety over having all this done.
ChessRe3
in
British Heart Foundation
11 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
Norpace?
I have had Atrial Tachycardia/ SVT with one ablation in 2021, then a break from the SVT, then return of SVT since last December. I had a failed ablation in March and have had a bunch of failed medication trials due to side effects. Have been on Metroprolol, Propranolol, Diltiazem, Flecainide, and the
I have had Atrial Tachycardia/ SVT with one ablation in 2021, then a break from the SVT, then return of SVT since last December. I had a failed ablation in March and have had a bunch of failed medication trials due to side effects. Have been on Metroprolol, Propranolol, Diltiazem, Flecainide, and the
MeganMN
in
AF Association
11 months ago
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
Norpace
I have had Atrial Tachycardia/ SVT with one ablation in 2021, then a break from the SVT, then return of SVT since last December. I had a failed ablation in March and have had a bunch of failed medication trials due to side effects. Have been on Metroprolol, Propranolol, Diltiazem, Flecainide, and the
I have had Atrial Tachycardia/ SVT with one ablation in 2021, then a break from the SVT, then return of SVT since last December. I had a failed ablation in March and have had a bunch of failed medication trials due to side effects. Have been on Metroprolol, Propranolol, Diltiazem, Flecainide, and the
MeganMN
in
Arrhythmia Alliance
11 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
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