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6 weeks and not better
Hi all. Well I have had my crt-d for 6 weeks...I felt great for the first 3 or 4 weeks...then because of how it was set the defib shocked me 4 times when not necessary.
I went to the doctor and he had the rep reset it...changed 3 settings he said...now the doctor put me on digoxin 250 mg and toprol xl and I can hardly get around. I checked my blood pressure today, being Saturday, and it was 98/57 and the pulse was 52. I could hardly stand up. I told the doctor last week that I didn’t think I could take all this because I always ran a low BP. He said I had to because of a weak heart muscle and also to control the heart rate.
It’s just too much...so If I quit the digoxin or half it I already know you can’t heal the heart muscle with that or anything so why can’t I just take toprol xl for the heart rate? He won’t listen and I might as well stay in bed as I can’t get around now....like I said I felt great before meds got started. Why do they medicate a person when they can’t take them? He just became my doctor after I had the crt-d put in by another doctor in another city.
So what should I do? Anybody else ever have this type of problem? I wish I hadn’t done this; I felt much better before all this. I thought I would be feeling great by now...the incision is good no pain at the pacemaker site..so help me with a suggestion...thanks
11 Comments
Pookie
by anniesu - 2012-02-25 09:02:32
Thanks for the answer...I had to have the crt-d because of a low EF of between 25 and 30 %...I have cardiomyopathy and a LBBB..so im sure I needed it..but
this new dr that is keeping check on the device just doesnt understand that I cant take alot of meds because my BP Drops so low...I do intend to talk with him again but he didnt listen the last time so doubt he does this time..Maybe time to check with another Dr...I was told before I got this that I might not have to take meds just depend on the pacemaker but the new dr says I do....who knows...just cant get around today at all...
2nd opinion
by Pookie - 2012-02-25 11:02:00
If you can get a 2nd opinion from another doctor - I certainly would do it. Don't worry about stepping on the first doctor's toes if you seek a 2nd opinion - it's your body and your life and if he can't respect that, well, fire him - if you can find another doctor. Here in Canada where I live we have to be referred to a doctor (meaning a specialist) so it's quite the process if we seek a 2nd opinion and the wait times are just incredible.
Again, 6 weeks doesn't seem that long in the grand scheme of things when you look at the bigger picture, so here's hoping your body will adjust to your present meds or as you said - there are people who can be very sensitive to meds (count me as one!!!) and your doctor will just have to try and find you an alternative med. I too have extremely low blood pressure so I am always careful about what I take because I am always dizzy.
Good luck and believe that things will get better. I know how hard it can be at the beginning but with time and support you will get thru this and back to "normal" or even better in no time soon:)
Take care,
Pookie
Its a tradeoff
by ElectricFrank - 2012-02-26 01:02:31
In many of these situations we really need to make our own decisions. Often we are trading having a poor quality of life in order to increase our chances of a longer life. I have faced those kind of decisions for years in one way or another, I'm firm on choosing quality of life, and let the docs firmly know it. If we don't do this they just assume you want the safest approach even if it means sitting around the house and rocking.
I support anyone's decision in this regard, but just ignoring it is the worst of both worlds. Just keep in mind that in today's world of patient rights, no doctor can MAKE you take a med. The way to say it is "I chose to take what the doctor recommended".
good luck,
frank
Always, when in doubt, 2nd opinion
by chrispcritter57 - 2012-02-26 03:02:00
I agree with many of the posts above. If you are not comfortable with your dr, find someone you are comfortable with. I have been (mostly) blessed with drs, but I have walked out of the exam room and fired one guy. Remember: YOU are their CUSTOMER. As for the drugs, I've experienced very similar aspects. Most of my life my BP was classic (120/80), then I ran into major problems. My EF went to 25%. I was put on many drugs to lower by BP. The lower your BP the less your heart muscle has to work. If your pressure is higher and the heart works harder, your muscle will suffer. My BP now runs around 95/68. It look me a long time to get used to it. I still get light-headed at times. Over the years I have slowly done various kinds of exercising to try to strengthen myself. It has taken 12 years, but my EF is now 35-40%. I still hate taking the drugs, but at least I'm not sitting on the couch as much any more.
ToChrisp425
by anniesu - 2012-02-26 04:02:22
Your story sounds the same as mine...My bp stayed around 118/68 most of the time...and my EF IS 25 TO 30%...i understand that your heart muscle needs to work less...but i cant even walk down the hall at 98/57 ...what kind of exercise do you do to strengthen yourself and what meds are you on..? I just feel that the troprol xl might be enough for me.....at this point....It would lower the bp probably enough....but takingthe two is just to much....I wish I could take coreg without any problems but I did for a year or so and I was sick with sinus problems the whole time I took it...and also really bad arthritis..now that isnt happening since im off of it...Im hoping there is a something else out now to take
Back at ya, anniesu
by chrispcritter57 - 2012-02-26 06:02:14
As I just read your post, I wonder if your fatigue is just the meds or your EF or a combination of both. I'm on: digoxin (Lanoxin), ramipril (Altace - ACE inhibitor), caredilol (Coreg CR - soon to move to basic Coreg due to cost), warfarin (Coumadin); spironolactone (Aldactone - anti-hypertensive); and other for other reasons. Although my BP continues to be low, as my EF has increased I've been able to do more. However, I still have to lay down for at least an hour every day to rest my body. When I told my doc how "tired I felt all the time" he told me, of course you feel tired, with all the drugs I have you on I expect that". The issue that caused my EF was an infection that went to my heart after open heart surgery. The infection ate away a good portion of the muscle. That happened in 2000. After the infection, the docs said I would need a transplant in about 5 years. I got stubborn and said "not me!". I haven't gone out to conquer the world in a week, but slowly but surely got off the couch. I always loved riding horses, so I started taking 1 lesson a week (about 45-50 minutes) riding western (not high cardio). After many months I went to 2 lessons a week. Understand, after the lessons, I would go home and sleep any where from 1 to 3 hours because I was exhausted. After years, I started taking English lessons (which is much higher cardio). After 2-1/2 years I was able to trot around the arena TWICE. To me that was a miracle. To any on-lookers they thought I was crazy. I have now moved on to working out at a gym with a trainer 3 times a week. The cardio leaves much to be desired (I can do a maximum of 20 minutes on a treadmill at a semi-brisk walk). But the strength training I think is doing a world of good.
When the doc started all my drugs, he tailored the dosages to what I could tolerate. Coreg CR didn't exist yet, so I started on the original Rx. I was on a bizarre amount, but we found it worked for me. In the beginning he would slowly increase my dosage every couple weeks. Once we got to a dosage I couldn't tolerate, he backed it off. Yes, it made me tired a bit dizzy, but I could manage. I understand what it is like to have a low EF. I couldn't walk from my bed to the couch in the living room without assistance. Really, I get where you are. My decision was to try to find the best of both worlds, staying alive for as long as possible, with the best possible quality of life I could. I hope this helps somewhat. Send a note whenever you want. Blessings.
Back at ya, anniesu
by chrispcritter57 - 2012-02-26 06:02:26
As I just read your post, I wonder if your fatigue is just the meds or your EF or a combination of both. I'm on: digoxin (Lanoxin), ramipril (Altace - ACE inhibitor), caredilol (Coreg CR - soon to move to basic Coreg due to cost), warfarin (Coumadin); spironolactone (Aldactone - anti-hypertensive); and other for other reasons. Although my BP continues to be low, as my EF has increased I've been able to do more. However, I still have to lay down for at least an hour every day to rest my body. When I told my doc how "tired I felt all the time" he told me, of course you feel tired, with all the drugs I have you on I expect that". The issue that caused my EF was an infection that went to my heart after open heart surgery. The infection ate away a good portion of the muscle. That happened in 2000. After the infection, the docs said I would need a transplant in about 5 years. I got stubborn and said "not me!". I haven't gone out to conquer the world in a week, but slowly but surely got off the couch. I always loved riding horses, so I started taking 1 lesson a week (about 45-50 minutes) riding western (not high cardio). After many months I went to 2 lessons a week. Understand, after the lessons, I would go home and sleep any where from 1 to 3 hours because I was exhausted. After years, I started taking English lessons (which is much higher cardio). After 2-1/2 years I was able to trot around the arena TWICE. To me that was a miracle. To any on-lookers they thought I was crazy. I have now moved on to working out at a gym with a trainer 3 times a week. The cardio leaves much to be desired (I can do a maximum of 20 minutes on a treadmill at a semi-brisk walk). But the strength training I think is doing a world of good.
When the doc started all my drugs, he tailored the dosages to what I could tolerate. Coreg CR didn't exist yet, so I started on the original Rx. I was on a bizarre amount, but we found it worked for me. In the beginning he would slowly increase my dosage every couple weeks. Once we got to a dosage I couldn't tolerate, he backed it off. Yes, it made me tired a bit dizzy, but I could manage. I understand what it is like to have a low EF. I couldn't walk from my bed to the couch in the living room without assistance. Really, I get where you are. My decision was to try to find the best of both worlds, staying alive for as long as possible, with the best possible quality of life I could. I hope this helps somewhat. Send a note whenever you want. Blessings.
Back at ya, anniesu
by chrispcritter57 - 2012-02-26 06:02:30
As I just read your post, I wonder if your fatigue is just the meds or your EF or a combination of both. I'm on: digoxin (Lanoxin), ramipril (Altace - ACE inhibitor), caredilol (Coreg CR - soon to move to basic Coreg due to cost), warfarin (Coumadin); spironolactone (Aldactone - anti-hypertensive); and other for other reasons. Although my BP continues to be low, as my EF has increased I've been able to do more. However, I still have to lay down for at least an hour every day to rest my body. When I told my doc how "tired I felt all the time" he told me, of course you feel tired, with all the drugs I have you on I expect that". The issue that caused my EF was an infection that went to my heart after open heart surgery. The infection ate away a good portion of the muscle. That happened in 2000. After the infection, the docs said I would need a transplant in about 5 years. I got stubborn and said "not me!". I haven't gone out to conquer the world in a week, but slowly but surely got off the couch. I always loved riding horses, so I started taking 1 lesson a week (about 45-50 minutes) riding western (not high cardio). After many months I went to 2 lessons a week. Understand, after the lessons, I would go home and sleep any where from 1 to 3 hours because I was exhausted. After years, I started taking English lessons (which is much higher cardio). After 2-1/2 years I was able to trot around the arena TWICE. To me that was a miracle. To any on-lookers they thought I was crazy. I have now moved on to working out at a gym with a trainer 3 times a week. The cardio leaves much to be desired (I can do a maximum of 20 minutes on a treadmill at a semi-brisk walk). But the strength training I think is doing a world of good.
When the doc started all my drugs, he tailored the dosages to what I could tolerate. Coreg CR didn't exist yet, so I started on the original Rx. I was on a bizarre amount, but we found it worked for me. In the beginning he would slowly increase my dosage every couple weeks. Once we got to a dosage I couldn't tolerate, he backed it off. Yes, it made me tired a bit dizzy, but I could manage. I understand what it is like to have a low EF. I couldn't walk from my bed to the couch in the living room without assistance. Really, I get where you are. My decision was to try to find the best of both worlds, staying alive for as long as possible, with the best possible quality of life I could. I hope this helps somewhat. Send a note whenever you want. Blessings.
Sorry 'bout that
by chrispcritter57 - 2012-02-26 06:02:32
I had inet issues and my post obviously took the brunt of it. Anyone know how to delete multiple copies of a comment??
Back at ya, anniesu
by chrispcritter57 - 2012-02-26 06:02:33
As I just read your post, I wonder if your fatigue is just the meds or your EF or a combination of both. I'm on: digoxin (Lanoxin), ramipril (Altace - ACE inhibitor), caredilol (Coreg CR - soon to move to basic Coreg due to cost), warfarin (Coumadin); spironolactone (Aldactone - anti-hypertensive); and other for other reasons. Although my BP continues to be low, as my EF has increased I've been able to do more. However, I still have to lay down for at least an hour every day to rest my body. When I told my doc how "tired I felt all the time" he told me, of course you feel tired, with all the drugs I have you on I expect that". The issue that caused my EF was an infection that went to my heart after open heart surgery. The infection ate away a good portion of the muscle. That happened in 2000. After the infection, the docs said I would need a transplant in about 5 years. I got stubborn and said "not me!". I haven't gone out to conquer the world in a week, but slowly but surely got off the couch. I always loved riding horses, so I started taking 1 lesson a week (about 45-50 minutes) riding western (not high cardio). After many months I went to 2 lessons a week. Understand, after the lessons, I would go home and sleep any where from 1 to 3 hours because I was exhausted. After years, I started taking English lessons (which is much higher cardio). After 2-1/2 years I was able to trot around the arena TWICE. To me that was a miracle. To any on-lookers they thought I was crazy. I have now moved on to working out at a gym with a trainer 3 times a week. The cardio leaves much to be desired (I can do a maximum of 20 minutes on a treadmill at a semi-brisk walk). But the strength training I think is doing a world of good.
When the doc started all my drugs, he tailored the dosages to what I could tolerate. Coreg CR didn't exist yet, so I started on the original Rx. I was on a bizarre amount, but we found it worked for me. In the beginning he would slowly increase my dosage every couple weeks. Once we got to a dosage I couldn't tolerate, he backed it off. Yes, it made me tired a bit dizzy, but I could manage. I understand what it is like to have a low EF. I couldn't walk from my bed to the couch in the living room without assistance. Really, I get where you are. My decision was to try to find the best of both worlds, staying alive for as long as possible, with the best possible quality of life I could. I hope this helps somewhat. Send a note whenever you want. Blessings.
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medications
by Pookie - 2012-02-25 08:02:40
I don't know why you had to have a CRT-D but if I were you I'd make an appointment with whatever doctor prescribed you your medications and ask "Why do I need these?" "What would happen if I wasn't on these meds?"
However, since you are already taking them, by NO means stop them or start self-dosing because you could possibly run into a very dangerous situation.
Sometimes with those types of drugs it takes our bodies time to adjust, but like I mentioned, I'd certainly be asking why are you on those particular drugs and you might even want to ask if there is something (another medication) that can still do the trick, but with fewer side effects.
Just a thought.
Pookie