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start of my SCT journey
Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told
Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told
Grizly
in
MPN Voice
11 months ago
Stem Cell Transplant update
I am now close to 6 months from my sct. I feel well in myself except for side affects from steroids which I should be off in a week. They make it difficult to sleep, make me hungry and over full of energy . Many of my blood counts are in normal range except for platelets. These keep yo-yoing around
I am now close to 6 months from my sct. I feel well in myself except for side affects from steroids which I should be off in a week. They make it difficult to sleep, make me hungry and over full of energy . Many of my blood counts are in normal range except for platelets. These keep yo-yoing around
Scaredy_cat
in
MPN Voice
11 months ago
Holiday,abroad one month after AF ablation.
My partner who has PAF,is having an ablation four weeks before we go on holiday to Egypt . This will be a relaxing holiday.We have taken out the required travel insurance and Linda will be taking it easy after the ablation . The trip is only for a week,we will make sure we take all medications with
My partner who has PAF,is having an ablation four weeks before we go on holiday to Egypt . This will be a relaxing holiday.We have taken out the required travel insurance and Linda will be taking it easy after the ablation . The trip is only for a week,we will make sure we take all medications with
Elephantlydia
in
AF Association
9 months ago
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Can Sodium or Calcium Channel Blockers Worsen SVT?
Okay, so I have a new med that I am trying, Propafenone. I have failed Norpace and also Flecainide. The problem I am having is that it seems that these medicines are making the SVT worse. I have Atrial Tachycardia. I cannot find any information about this. Where can I get more information? My doctor
Okay, so I have a new med that I am trying, Propafenone. I have failed Norpace and also Flecainide. The problem I am having is that it seems that these medicines are making the SVT worse. I have Atrial Tachycardia. I cannot find any information about this. Where can I get more information? My doctor
MeganMN
in
AF Association
9 months ago
Pacemaker
Good morning so for months I have had feelings of fainting and hardly left my home. Anyway I finally had ecg echocardigram and R test. Saw my cardiologist yesterday and he said that I am now bracycardic as well as having Af so will need a pace maker. Bit of a shock. Also to immediately cut my propanalol
Good morning so for months I have had feelings of fainting and hardly left my home. Anyway I finally had ecg echocardigram and R test. Saw my cardiologist yesterday and he said that I am now bracycardic as well as having Af so will need a pace maker. Bit of a shock. Also to immediately cut my propanalol
CHRISAF18
in
AF Association
9 months ago
Needing some suggestions to sitting for hours in hospital
I am 26 and on warfarin for a mechanical aortic valve inserted in April 23. I need to be tested very regularly, normally every 2 weeks atleast. It must be a blood test as the pin prick tests proved unreliable in my case. I spend hours and hours waiting at St Barts for a blood test which is where I am
I am 26 and on warfarin for a mechanical aortic valve inserted in April 23. I need to be tested very regularly, normally every 2 weeks atleast. It must be a blood test as the pin prick tests proved unreliable in my case. I spend hours and hours waiting at St Barts for a blood test which is where I am
Pefki
in
Anticoagulation Support
7 months ago
desperate! Don’t know what to do.
First of all thank you for reading. I would like some advice on a situation that’s new to me. I will be 100 % transparent about this. I have been married for almost 3 years now. We are a young couple ( he’s 30 and I’m 25) so yes! I got married I was 23 and with that I had a lot of maturing to do and
First of all thank you for reading. I would like some advice on a situation that’s new to me. I will be 100 % transparent about this. I have been married for almost 3 years now. We are a young couple ( he’s 30 and I’m 25) so yes! I got married I was 23 and with that I had a lot of maturing to do and
MandyBueno
in
Anxiety and Depression Support
9 months ago
Mitral Valve Af and fed up
hi all, I’ve been diagnosed nearly two years ago with AF. Cardio version worked for 5 days so was put on Amiodarone 200mg along with the usual others, Apixiban, Nebivolol. The Amiodarone messed my thyroid about so was put on a higher dose of Levothyroxine. Fast forward 5 months I get an appointment
hi all, I’ve been diagnosed nearly two years ago with AF. Cardio version worked for 5 days so was put on Amiodarone 200mg along with the usual others, Apixiban, Nebivolol. The Amiodarone messed my thyroid about so was put on a higher dose of Levothyroxine. Fast forward 5 months I get an appointment
Gilly1372
in
Atrial Fibrillation Support
7 months ago
Open Heart Surgery Aortic aneurysm
Hi everyone, I am 41 and due to have my descending aorta fixed due to an aneurysm. They also found my aorta has created vascular ring around my trachea and oesophagus which needs to be sorted out. They plan to do a thorocotomy. Has anyone had experience of this? I can only find those who have had theirs
Hi everyone, I am 41 and due to have my descending aorta fixed due to an aneurysm. They also found my aorta has created vascular ring around my trachea and oesophagus which needs to be sorted out. They plan to do a thorocotomy. Has anyone had experience of this? I can only find those who have had theirs
Lola1981
in
British Heart Foundation
9 months ago
Seeking reassurance post-cardioversion
Hi everyone, As I've posted before, I had a DCCV on Tuesday of last week after being in Atrial Flutter for 6 weeks - 2 months. The flutter has come about after open heart surgery to repair a large hole in my heart. My levels of anxiety about the Flutter returning are variable, however much I try not
Hi everyone, As I've posted before, I had a DCCV on Tuesday of last week after being in Atrial Flutter for 6 weeks - 2 months. The flutter has come about after open heart surgery to repair a large hole in my heart. My levels of anxiety about the Flutter returning are variable, however much I try not
LadyZ13
in
AF Association
9 months ago
Osteoporosis, osteopenia and running
It seems that running really can be good for
bone
health
. I hope you find this as encouraging as I do especially if you're worrying about stuff like this :)
It seems that running really can be good for
bone
health
. I hope you find this as encouraging as I do especially if you're worrying about stuff like this :)
Yesletsgo
Graduate
in
Couch to 5K
1 year ago
Benefit Advice
Hi Can anyone give me some advice. I am 59 yrs old , diagnosed with copd in 2009, had a heart bypass operation in 2015, have angina, on meds for my copd, on meds for high blood pressure, have recently been diagnosed with Auortic valve stenosis ( severe ) going to see cardiologist in 3 weeks.
Hi Can anyone give me some advice. I am 59 yrs old , diagnosed with copd in 2009, had a heart bypass operation in 2015, have angina, on meds for my copd, on meds for high blood pressure, have recently been diagnosed with Auortic valve stenosis ( severe ) going to see cardiologist in 3 weeks.
Autoapple
in
Heart Valve Voice
9 months ago
Post-Surgery
Hi everyone! I have had my heart condition ever since I was born so it’s nothing new to me. I have just recently (April this year) had my 4th open heart surgery to replace my mitral valve due to endocarditis. The recovery is long but I am doing well and have been back at work for 2 months now. Recently
Hi everyone! I have had my heart condition ever since I was born so it’s nothing new to me. I have just recently (April this year) had my 4th open heart surgery to replace my mitral valve due to endocarditis. The recovery is long but I am doing well and have been back at work for 2 months now. Recently
Heartsurvivor
in
British Heart Foundation
9 months ago
CABG looming
Hi All - just doing some last minute preparation for my heart bypass op on Monday at The Royal Brompton (after 2 cancellations) - any final tips from anyone?
Hi All - just doing some last minute preparation for my heart bypass op on Monday at The Royal Brompton (after 2 cancellations) - any final tips from anyone?
KaduFlyer
in
British Heart Foundation
9 months ago
Leaking heart valve
I've been diagnosed with a leaking heart valve which is now severe.I'm currently awaiting to go into hospital for a new heart valve via open heart surgery. To say I am scared is an understatement. I'm not really sure what to expect.
I've been diagnosed with a leaking heart valve which is now severe.I'm currently awaiting to go into hospital for a new heart valve via open heart surgery. To say I am scared is an understatement. I'm not really sure what to expect.
Pbbluenose
in
British Heart Foundation
9 months ago
Anti-Dysrhythmics Making Atrial Tachycardia Worse?
Well, I tried the Norpace and it was a big flop. Not only did it give me daily Inappropriate Sinus Tachycardia, it actually seemed to make my Atrial Tachycardia/SVT worse and more frequent, with longer episodes. I made it a whopping week. My EP seems to be getting frustrated with me and I think Rhythmol
Well, I tried the Norpace and it was a big flop. Not only did it give me daily Inappropriate Sinus Tachycardia, it actually seemed to make my Atrial Tachycardia/SVT worse and more frequent, with longer episodes. I made it a whopping week. My EP seems to be getting frustrated with me and I think Rhythmol
MeganMN
in
AF Association
9 months ago
Coronary artery calcification, osteoporosis and B12 deficiency- what to do next ?
I have just been found to have coronary artery calcification incidentally when having a Lung Healthcare scan. This information was passed to my GP who wants to put me on statins (Atorvastatin 20mg daily). I have no idea of the severity or extent of the calcification, only that it was found. I don't
I have just been found to have coronary artery calcification incidentally when having a Lung Healthcare scan. This information was passed to my GP who wants to put me on statins (Atorvastatin 20mg daily). I have no idea of the severity or extent of the calcification, only that it was found. I don't
Cherylclaire
Forum Support
in
Pernicious Anaemia Society
7 months ago
11 months post bypass
Hi I'm 11 months post quadruple heart bypass ,things have been going well was back plastering in Feb and working fairly normally, odds bouts of anxiety also had 2 holidays which was great ,today I tested positive for the thing we don't really mention ,just to ask has anyone else tested positive post
Hi I'm 11 months post quadruple heart bypass ,things have been going well was back plastering in Feb and working fairly normally, odds bouts of anxiety also had 2 holidays which was great ,today I tested positive for the thing we don't really mention ,just to ask has anyone else tested positive post
Charl70
in
British Heart Foundation
9 months ago
Update from 1st appointment with cardiologist
Good morning everyone heres update on meHad 1st cardiologist appt yday then slept much better as now I know whats to come Have 2 problems, palpitation crisis triggered by my system upset by recent antibiotics can be controlled with meds just need dose adjustment as they took me off my previous med
Good morning everyone heres update on meHad 1st cardiologist appt yday then slept much better as now I know whats to come Have 2 problems, palpitation crisis triggered by my system upset by recent antibiotics can be controlled with meds just need dose adjustment as they took me off my previous med
Hidden
in
British Heart Foundation
9 months ago
Heart bypass update - I made it
Following on from my earlier post about my anxiety of having bypass surgery (and the many fantastic replies, advice and stories) I am happy to say my quadruple bypass went ahead on Thursday and was a complete success. Not going to lie, the first couple of days were tough but no where near as hard as
Following on from my earlier post about my anxiety of having bypass surgery (and the many fantastic replies, advice and stories) I am happy to say my quadruple bypass went ahead on Thursday and was a complete success. Not going to lie, the first couple of days were tough but no where near as hard as
YorkshireBertie
in
British Heart Foundation
10 months ago
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