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[My Hospital Follow-up]
Author: Heather Irwin (65.247.157.---)
Date: 09-17-02 10:24
I went yesterday to see my local cardiologist (my main one is 4 hrs. away). He did another EKG, which showed I am still having bouts of a-fib. He said it looked a lot better than my hospital EKG's and that the HR had slowed down and was more regular. He did take me off the Plavix and put me on Coumadin, which I know I need, but am not very happy to be taking it. He said as soon as I convert, which he's sure I will!, he'll slowly wean me off of the Amiderone and Coumadin. I told him the biggest problem I've had the last week is one minute I feel fine and the next I'm very short of breath and don't feel like I can walk across the room. I've also noticed my legs will feel really heavy when I get the SOB. He said if my SOB doesn't get better, he wants to put me on a mild diuretic. I got to thinking about this when I got home though and I'm not having any heart failure that I know of, so why would a diurectic help SOB.......?? Anyway, I go Thurs. for a PTT, and then back again in 2 wks. for another check up. He has talked to my primary cardiologist and she said she agrees with his treatment. I'm wondering if I should make an appt. to see her anyway.........??
Thanks,
Heather
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[Re: My Hospital Follow-up]
Author: Sarah B.-Board Moderator (---.client.attbi.com)
Date: 09-17-02 12:13
Dear Heather,
Please call the office at 973-983-7429 to get the name of a specialist you can see. You need to see an HCM specialist.
First, yes, you need to be on coumadin. Second, afib gives you sob and it is caused by fluid build up in the lungs since the lungs aren't working at capacity, they can get a little fluid in there. You may notice that you have an unexplained cough from time to time --that is your lungs clearing. However, a diuretic is a bit extreme and you need to be super careful with that since if you lose too much fluid, it is just as bad (or worse) than having too much since it can throw off your electrolyte balance.
As for the amiodarone, most people need to keep taking it to keep them in rhythm. I've never heard of being taken off of it once it works!
Basically, some of what this guy is telling you is not exactly standard HCM care and I really thing that you would benefit GREATLY by seeing a specialist asap.
take care
Sarah
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[Re: My Hospital Follow-up]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 09-18-02 11:11
Heather,
I am a little concerned... Have you had a pulmonary function test? Call the office maybe we should talk.
Best wishes,
Lisa
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[Re: My Hospital Follow-up]
Author: Cynthia (---.cap.east.verizon.net)
Date: 09-22-02 18:55
Hi Heather,
I am so sorry to hear about your current difficulties. It must be hard with young kids. Hang in there.
Cynthia
PS How is cabe?
Author: Heather Irwin (65.247.157.---)
Date: 09-17-02 10:24
I went yesterday to see my local cardiologist (my main one is 4 hrs. away). He did another EKG, which showed I am still having bouts of a-fib. He said it looked a lot better than my hospital EKG's and that the HR had slowed down and was more regular. He did take me off the Plavix and put me on Coumadin, which I know I need, but am not very happy to be taking it. He said as soon as I convert, which he's sure I will!, he'll slowly wean me off of the Amiderone and Coumadin. I told him the biggest problem I've had the last week is one minute I feel fine and the next I'm very short of breath and don't feel like I can walk across the room. I've also noticed my legs will feel really heavy when I get the SOB. He said if my SOB doesn't get better, he wants to put me on a mild diuretic. I got to thinking about this when I got home though and I'm not having any heart failure that I know of, so why would a diurectic help SOB.......?? Anyway, I go Thurs. for a PTT, and then back again in 2 wks. for another check up. He has talked to my primary cardiologist and she said she agrees with his treatment. I'm wondering if I should make an appt. to see her anyway.........??
Thanks,
Heather
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My Hospital Follow-up]
Author: Sarah B.-Board Moderator (---.client.attbi.com)
Date: 09-17-02 12:13
Dear Heather,
Please call the office at 973-983-7429 to get the name of a specialist you can see. You need to see an HCM specialist.
First, yes, you need to be on coumadin. Second, afib gives you sob and it is caused by fluid build up in the lungs since the lungs aren't working at capacity, they can get a little fluid in there. You may notice that you have an unexplained cough from time to time --that is your lungs clearing. However, a diuretic is a bit extreme and you need to be super careful with that since if you lose too much fluid, it is just as bad (or worse) than having too much since it can throw off your electrolyte balance.
As for the amiodarone, most people need to keep taking it to keep them in rhythm. I've never heard of being taken off of it once it works!
Basically, some of what this guy is telling you is not exactly standard HCM care and I really thing that you would benefit GREATLY by seeing a specialist asap.
take care
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My Hospital Follow-up]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 09-18-02 11:11
Heather,
I am a little concerned... Have you had a pulmonary function test? Call the office maybe we should talk.
Best wishes,
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My Hospital Follow-up]
Author: Cynthia (---.cap.east.verizon.net)
Date: 09-22-02 18:55
Hi Heather,
I am so sorry to hear about your current difficulties. It must be hard with young kids. Hang in there.
Cynthia
PS How is cabe?