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  • not sure what I have anymore

    [not sure what I have anymore]

    Author: Cathy (---.proxy.aol.com)

    Date: 03-15-02 13:42

    Hi all,

    I am 40 yrs old now with a 5 yr old daughter and loving, very patient husband.

    I have been in and out of the hospital for the past 5 years. I used to work

    full time up until Sept of 2000, where I had what I thought was a heart attack at my desk. My blood gas level was at an all time low of 74, my pulse ox was around 75. At that time, they thought I had pleurisy, then lupus, then they weren't

    sure what I had. I have been seeing the chief of pulmonology up in UW/Madison, WI for the past almost two years. I have them stumped. They are unsure, most of the tests are normal. The lung biopsy was abnormal, but they didn't know what it was. I have had high pressures in my lungs and high BP from the swelling I get.

    I am on coumadine for life, I have had two clots and one went to my left lung last year. I have a greenfield filter in to prevent any further clots from travelling up. I am on lasix (diurectics) for life. I am on prednisone, the lowest dose just to breathe. I take valsartan some sort of blocker and vicodin for pain. Most of the time, I am short of breath, feels like I'm carrying around a box of encyclopedias and cannot ever put them down. My cardiac caths only showed slight problems, but nothing to be overly concerned with. I have been told 5 times I had pulmonary hypertension, only to find out it's secondary to some underlying cause. I have

    interstitial lung disease from unknown origin and resting tachycardia for whatever

    reason. They have no explaination for this. I was considered stable for about three months until the medicines stopped working again. They changed me from the norvasc to valsartan. I am still light headed and haven't been able to drive for about a month now. I love to drive, feeling somewhat isolated, however, my husband takes me out alot so I don't get depressed. I have a handicapped tag for my car, I seem to use that alot lately.

    Yoga does help alot with relaxation and so does weight loss. I lost 24lbs, mostly

    fluid. Without the medicines, I would be in the hospital failing from something nobody knows. I am basically frustrated at this point. We can treat the symptoms is what they say. I have been a guinea pig for 5 years and will continue until this is diagnosed. I am taking along an article from your website to my physician on Tuesday. I am hoping this is something I have, because then it will have a name. Any name is better than not knowing.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: not sure what I have anymore]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-15-02 17:18

    Dear Cathy,

    It sounds like the Mayo Clinic is the place for you to go. They are the ones that seem to be able to diagnose almost anything --especially situations like yours where they can't seem to figure it out.

    What --exactly--were these "slight problems" that the cath showed? I'm always leery of being told that there is something abnormal, but nothing to worry about since I was told that having a dilated right kidney was normal and go home--despite having a big 'ole kidney stone in it!!!

    Have you ever had an echocardiogram? That will show any hypertrophy. Please talk to the HCMA office about how to get to Mayo or to an HCM specialist.

    Please keep us informed...

    best wishes

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: not sure what I have anymore]

    Author: Cathy (---.proxy.aol.com)

    Date: 03-15-02 23:53

    I've been told the Mayo clinic is the way to go. However, I have to pass it by my primary care physician and then I have to be released from UW first since I have an HMO. Your website has been very convincing to all of the people that have read the symptoms. We will pursue it on with our primary care physician on Tuesday, and pray that he feels this is the path to take. I appreciate your help tremendously and Thank you very much.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: not sure what I have anymore]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-16-02 12:34

    Dear Cathy

    Best of luck to you. I HIGHLY recommend calling the HCMA office and making an appt to talk to Lisa before your PCP appt if possible as she may be able to give you some insight as to how to approach the situation with your doctor and your insurance -- and to see if HCM sounds like a possible diagnosis for you (she knows more about HCM than anyone I know -including a lot of doctors!).

    Please keep us posted on your progress.

    Best of luck,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: not sure what I have anymore]

    Author: Cathy (---.proxy.aol.com)

    Date: 03-19-02 23:46

    WELL...GOOD NEWS Mayo clinic here we come. I found out today, my primary care physician thinks it's time. I am praying that they can find out what's up. He still feels it's a heart thing more than a lung thing as well. He also said, they tested for this, however, they still don't know what it is, so I want the tests repeated. Thank you for all your help and will let you know when I go.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: not sure what I have anymore]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-20-02 14:09

    Dear Cathy

    That is great news. We look forward to hearing from you. Please read the Mayo's web site about visting there --it is excellent and comprehensive. There are even links to all the hotels. I don't know about where you are, but when I went to book a plane ticket, it was more expensive to buy a round trip to Rochester than to buy 1 round trip to Minneapolis and 1 round trip Minni to Rochester, so if you are flying, check that out.

    best of luck,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: not sure what I have anymore]

    Author: midgerollins (---.obmo.socket.net)

    Date: 03-20-02 19:42

    Cathy, I have been followed by Mayo for 25 years for my HOCM, they have literally kept me ticking. The cardiomyopathy clinic is great there as every other department. My HOCM has now reached a stage, where it is causing some pulmonary pressure, but Mayo found that and we are working on controlling it. Good luck to you. I am in Rochester every 90 days. We found that we stay out on Hwy 63, most of the hotels, have shuttles to take you back and forth to the clinic. good luck to you and if I can answer any questions let me know.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: not sure what I have anymore]

    Author: Cathy (---.proxy.aol.com)

    Date: 04-04-02 10:09

    thanks so much everyone. I arrive in Mayo on 4/22/02 and start the battery of tests and meet with the docs. I am very anxious about this. We are bringing my 5 yr old as well, somewhat a vacation for her. We needed to have her with us, everytime I would go to the other hospital/clinic for tests, she steps back two paces. This way, she can see that I'm ok and she can understand some of what is going on. Pool time for her mostly. We're staying pretty close to the clinic...Take care everyone and thank you...

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: not sure what I have anymore]

    Author: Sarah B. (---.dsl.mindspring.com)

    Date: 04-05-02 01:10

    Dear Cathy

    That is great news!!! Please call the Mayo and your hotel and ask them what activities they have for kids her age. I think that this is something they deal with a lot and will have info for you. I think it is good to have her with you, too. The less fear, the better.

    Don't forget to tell us how it went when you get back. and best wishes,

    OH --Eat at the Pannekoeken resteraunt (1201 South Broadway 507- 287-0717) --it is on the highway outside town. Get the baked pancakes with piles of fruit--wonderful. And eat at Daube's Bakery and German Restaurant

    14 3rd St SW, (507) 280-6446. Fantastic!!! Those are must haves!

    www.rochestermn.com is their tourist web site.

    take care,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: not sure what I have anymore]

    Author: Cathy (---.proxy.aol.com)

    Date: 04-29-02 00:20

    well...we never made it to mayo's as planned. Our hmo decided I could be better serviced within our network. I have since found out that they really cannot force us to stay within the network. We did get transferred to Loyola University and I'm on 2 liters of oxygen at all times now. I think the delay has caused us alot of problems. Loyola is good, however, I feel they don't want to continue the search and only go off of another universities tests that are a year old and just treat the symptoms. Well, I am not going to accept their drug therapy and ask to be retransferred to the mayo clinic. We have wasted 4 weeks here playing games and I'm very, very frustrated.

    I did find out that my left side of my heart showed considerable thickening and that they have a new drug out...bosentan to cease the progression of the lung tissue with pulmonary hypertension. But, if UW won't admit I have the disease how can I be forced to take a drug for it. I am refusing...NO, NO, NO...I WANT TO BE RETESTED WHILE THE O2 LEVEL IS LOW IN MY BLOOD. I hear back from my primary doc tomorrow.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: not sure what I have anymore]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-29-02 10:41

    Dear Cathy,

    I'm very sorry about your situation. Please call the Mayo and talk to them about your insurance situation, they try to make it as painless as possible.

    Keep us posted on your situation and please start a new thread next time so others can find you. I probably the only person who looks back this far into the board on a regular basis.

    take care,

    Sarah
    NOTE: This is a post from the previous forum message board.

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