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Things got to get better?


AJVDK
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I just wanted to say Hi, and say sorry I have not been around the last week. I been feeling down. I got a touch of the flu. Then to top it all off I went to a new cardio doctor on Tuesday......... and needless to say I think it's going to be a waste of time. He is a nice man, but doesn't seem to want to do anything. He received my medical records for Cleveland, and doesn't seem to be looking at them, or really doesn't seem to care. If you don't know the hole story about my trip to Cleveland here's the short of it, they found out that my blood if flowing to fast thought my body, and that could be causing some of the problems...... so they said I should start in cardio rehab, that I need to have my blood check as my red bloodcell count is very low, and that my meds would need to be wacthed and should be adjusted as needed, I need to keep fluid intake and salt high, and may need IV treatment. This new doctor doesn't want to do anything at all, and he want's wait 3 months, and see than how I feel. Then to top it off he's got a idea that maybe all that is wrong is I have pacemaker sindrome (not sure on the spelling). Now don't you think if that was ture they would have found that in Cleveland. So know I feel like I wasted my time and money by going out to cleveland, as I am finding it hard to get the treatment back home. I am just tried of fighting. I went, and saw my family doctor on thursday as my cold/flu was not getting better, and I explained my feelings to him, he said he would talk to my cardio doctor, but maybe it's time for me to think about lifestlye changes. Like stepping down in my job, going partime, or even to stop working as I am not getting better. Is it wrong I don't want to give up, and I don't want to quit my job? Although I feel like that's what I should do. I just want to contiune to work I want to live a normal life. Maybe that my problem that I am trying to fight everything instead of finding what's going to work. If any of you have any ideas that would help, please let me know!!!!

Confussed on what to do! :lol:

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I don't think it was a waste of time for you to go to Cleveland since you were able to get some concrete answers and rule things out. It may just take some time to get someone who will help you follow through on treatment. I can understand how you would feel discouraged with a doc who didn't even care to look at your file!!

I thought that after going to the clinic and getting diagnosed that i was home free and ready to get better, but to be honest, the best thing for me has been rest, exercise, and less stress. I understand that not working or working less is a real blow emotionally (and financially), but it was what I needed to start healing. I hope that you are able to work with your primamry or another doctor to get started on cardiac rehab. I think it's definitely helped me.

Kristen

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I know what you are going through, and I wish that there was an instant answer. I also live in a small town where good docs are few and far inbetween. It seems that when my Cardio found out nothing was wrong with my heart he just doesnt care anymore. I hope that my Neuro will give me more answers. My Cardio put me on florinef and midodrine but did not tell me to be sure to drink lots of water and did not tell me to take in extra salt until weeks later when he put me on the midodrine because the florinef was not working. My PCP is in town but all of my other docs are out of town which makes it a hardship for my family due to I can not drive anymore due to my vision problems and dizzy spells. I have not worked since my car wreck in Oct. 2004 (not my fault) and I too miss working, but I have accepted the fact that I could not take the stress of working anymore. I see a therapist to help me deal with all of this craziness, and I am about to up my appointments to twice a month instead on once a month. Dont give up if this doc is not right for you then find one that is. I have even told my family that I am about ready to go to Nashville to the Vanderbilt University to just to try to get some answers, but I havent yet. Plus you have the flu and that doesnt make it any better. Keep plugging away. Hope you find all of the answers that you need. I know that I am still searching for some also. I too get frustrated as I imagine anyone who is going through all of this has at times also been totally frustrated. I am lucky my family does a lot of my fighting, If I do not get the answers from the docs, then look out doc because either my husband or my daughter are in their face demanding answers. They are tired of the shoddy medical treatment that I have been getting from the docs and the hospital here in my hometown. So I am lucky I have never been one for confrontations. Good luck in your search. :lol:

Vanessa

I just wanted to say Hi, and say sorry I have not been around the last week. I been feeling down. I got a touch of the flu. Then to top it all off I went to a new cardio doctor on Tuesday......... and needless to say I think it's going to be a waste of time. He is a nice man, but doesn't seem to want to do anything. He received my medical records for Cleveland, and doesn't seem to be looking at them, or really doesn't seem to care. If you don't know the hole story about my trip to Cleveland here's the short of it, they found out that my blood if flowing to fast thought my body, and that could be causing some of the problems...... so they said I should start in cardio rehab, that I need to have my blood check as my red bloodcell count is very low, and that my meds would need to be wacthed and should be adjusted as needed, I need to keep fluid intake and salt high, and may need IV treatment. This new doctor doesn't want to do anything at all, and he want's wait 3 months, and see than how I feel. Then to top it off he's got a idea that maybe all that is wrong is I have pacemaker sindrome (not sure on the spelling). Now don't you think if that was ture they would have found that in Cleveland. So know I feel like I wasted my time and money by going out to cleveland, as I am finding it hard to get the treatment back home. I am just tried of fighting. I went, and saw my family doctor on thursday as my cold/flu was not getting better, and I explained my feelings to him, he said he would talk to my cardio doctor, but maybe it's time for me to think about lifestlye changes. Like stepping down in my job, going partime, or even to stop working as I am not getting better. Is it wrong I don't want to give up, and I don't want to quit my job? Although I feel like that's what I should do. I just want to contiune to work I want to live a normal life. Maybe that my problem that I am trying to fight everything instead of finding what's going to work. If any of you have any ideas that would help, please let me know!!!!

Confussed on what to do! :lol:

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I have to say things will get better, though I certainly don't feel that way about it myself, personally. I am having a lousy patch now and feel like I will never get out of this hole. Some sort of tachy almost constantly, feeling every beat and every little thing that is going on in my body. Chills and chatters,,blah.

I know once these rough patches start it is so hard to believe they will ever let up. As soon as you take one step forward it seems like you are kicked to steps back. Going to Cleveland gave you some answers though, unfortunately it is not easy to find local physicians who are willing to look at the info. I think they become insulted that we look for help elsewhere when they feel they can give us the treatment we need. I went to the clinic in Alabama years ago, and still go when I can make the 12hr trip but I have yet to meet a dr. here that subscribes to the whole syndrome thing that goes on. Seems if it is not cut and dry or one pill does not cure all then they don't know what to do.

Keep doing what you they told you to do for yourself, search for a new dr. if need be. I am not confrontational either and I worry that if I do become that the dr. will release me from his care, though if he did that would only prove that he was not the right one.

Hang in there. you'll get stronger and get through this too. :lol:

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If I were you, I would call Cleveland and talk to the healthcare providers you saw there. And I would keep calling them. I had a couple problems after going to Mayo and the MAyo dr. actually called my Doc here!!!!

You MAY need to adjust you work schedule temporarily, but unless thats what the Cleveland people say I would try to hold out. As for Vanessas comment about therapy. If anyone is thinking about it. Get someone who you are comfortable with. The report from my therapist whom I have seen for 2 years is what won my case!!!! The judge held it up and said "If I could get more repotrs like this it would make my job much easier" I was approved in 10 days and got a check within 30 days. So I would plan for that possibility also. Blessings.......Miriam :unsure:

Edited by Miriam Poorman-Knox
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I'm really wiped out but I wanted to respond to your post.

I don't think your time was wasted by going to Cleveland because you learned a lot but it does seem you may need to go to another cardiologist who will actually try to assist you.

In terms of the work issue, I understand how difficult this can be. I've been struggling a lot with this issue myself. I had to quit work about 1 1/2 yrs ago and I still miss it to this day. I pushed and pushed until I could push no more. For the past 1 1/2 yrs my focus has been on trying to find the right med combo and "get me back to work". I have gotten worse (overall) and have not improved.

As much as I miss work though, I've questioned the last couple of weeks my own focus. At what point do I shift my focus and accept this is where I'm at. There is a part of me that says "Keep up the fight" then there is another part that says "Rest and let your body be your guide". It is so hard for me to accept this is how my life is. While I don't know what the future holds and hope that things will change and I can return to work someday I also think maybe I'm at the place where I just need to accept it, quit wasting my energy on spinning my wheels and accept where I'm at and try to enjoy each day.

I don't know...it's a difficult thing. If you haven't already done so, maybe reduce your hours or work load. If this doesn't work or help then at least you know you have done all you could do to try to maintain working.

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There is always a place for hope! Don't let this new, uniterested doctor, slow your quest for effective treatment. If he's not working out for you, move on to find a doctor who is motivated to make your care a priority.

Nina

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I'm exactly where Poohbear is. If there is any way you can continue to work do so. Being home has not improved my symptoms at all. The isolation makes us focus even more on our symptoms. I too worked umtil it was just impossible.

I would try to find a doctor who is receptive to the treatment recommended. Some doctors don't have such big ego's and are willing to do what another physician recommends. I am lucky to have the internist I have because he will let me try anything I think will help.

Good luck to you.

Dawn

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