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Well hmmm let's see, many of you saw my husband write about me being diagnosed with end stage hcm recently after having hcm for 14yrs and longer when I think about my symptoms as a child. Needless to say I saw Dr. Maron in Minnesota and he gave me the disturbing news. I ran with it when I got home to get the meds they had suggested and start the process of getting on the transplant list.
I was seen on Tues. 6/22 and was home in Va 6/28 and on the phone to my home cardiologist. They call me back to say what are you talking about after I had called and discussed the findings myself with one of the nurses so she could give my doc a heads up. So tues. 6/30 they call to say that the Minnesota docs haven't called them yet so I called the Minnesota docs and said please call my home docs or send the letter that states the findings so I can start the new meds etc. The Minnesota docs faxed the letter that day and called my home doc. No word at all by friday from my home docs so I called them again and said what's going on? They said oh your doc is on vacation so With a fused burnt I said okay so which doc is going to handle it now? One of the other docs said after reading the letter okay we'll start on Prinivil which is just replacing one beta-blocker for another (even though it's the preferred one). I asked what about the three other meds he wanted me to go on? Oh well he wants you to see your home doc in one month.
So that's one med only and no transplant help for 6 weeks total. What does that say to me other than okay you don't understand the disease, fine but you have an expert telling you what to do and you still don't listen! That's stupid!!!!!!!!!! I have made them schedule me for 7/12 which when my doc comes home from vacation and he and I will be having a little heart to heart. Ya know this is what my husband said, okay so he doesn't know much about the disease when you come along but after 14 years of being your cardiologist he would attempt to learn so he could be helpful!
So as Lisa says knowledge is power. If I wasn't a nurse I would totally be lost in how to handle and make these people do what I need. So please don't take no for an answer when you know what you need.
Take care and God bless!
Beverly
I was seen on Tues. 6/22 and was home in Va 6/28 and on the phone to my home cardiologist. They call me back to say what are you talking about after I had called and discussed the findings myself with one of the nurses so she could give my doc a heads up. So tues. 6/30 they call to say that the Minnesota docs haven't called them yet so I called the Minnesota docs and said please call my home docs or send the letter that states the findings so I can start the new meds etc. The Minnesota docs faxed the letter that day and called my home doc. No word at all by friday from my home docs so I called them again and said what's going on? They said oh your doc is on vacation so With a fused burnt I said okay so which doc is going to handle it now? One of the other docs said after reading the letter okay we'll start on Prinivil which is just replacing one beta-blocker for another (even though it's the preferred one). I asked what about the three other meds he wanted me to go on? Oh well he wants you to see your home doc in one month.
So that's one med only and no transplant help for 6 weeks total. What does that say to me other than okay you don't understand the disease, fine but you have an expert telling you what to do and you still don't listen! That's stupid!!!!!!!!!! I have made them schedule me for 7/12 which when my doc comes home from vacation and he and I will be having a little heart to heart. Ya know this is what my husband said, okay so he doesn't know much about the disease when you come along but after 14 years of being your cardiologist he would attempt to learn so he could be helpful!
So as Lisa says knowledge is power. If I wasn't a nurse I would totally be lost in how to handle and make these people do what I need. So please don't take no for an answer when you know what you need.
Take care and God bless!
Beverly
All I can do is pray for you to have the wisdom to say the right things to make them understand. Good luck!
I am so sorry that you are going through this waiting game. I don't know Dr. Maron, but I do know that the Mayo Clinic is very prompt. I have been going there for almost 4 years and my cardiologist always connects me with the right dr. for my condition (CHF, my second myectomy etc.). The nurses there are very knowledgeable and helpful. One nurse even we as far as calling the kitchen for a recipe I wanted! Talk about service.
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