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  • mtlieb
    replied
    Re: Stress Test Questions

    What an odd and unusual day... but it ended well i guess,

    Got to the hospital for my stress test okay. I didn't really get hit hard with the withdrawal symptoms from the atenolol until this morning, but i was in pretty sad shape when it happened. I almost passed out twice before the test even started. Got two hours into the process, had all the initial tests, they wired me up, got the IV going, injected the thallium, took the first set of scans, etc.... and when it came time for the actual treadmill part, the head of the stress lab wouldn't allow it. Stress test canceled.

    He said there was no way in **** he was going to put an HCM patient up on a treadmill unmedicated. I asked him to at least wait for my specialist to arrive and talk to him, but he said it wouldn't make any difference. I was pretty preturbed at this point. Two days without beta blocker, no food since last night, no water since early this morning, a day off school to drive to Pittsburgh, two hours of poking, injecting and wiring me up with electrodes... and then they discharged me

    So i'm on my way out of the hospital fuming, when i run into my specialist, who is also fuming. He makes a few calls and tells me to get back down to the stress lab, get rewired, have another IV put in, and the test will proceed as planned. Only thing is, i had just taken my atenolol when i was discharged, so it then became this wierd race to try and get me up on the treadmill before it kicked in. It was hilarious. We didn't make it though. The atenolol kicked in after about twenty minutes, and it was a whole hour before they had me prepped again and ready to go. So i ended up doing the test on the atenolol anyway, which kinda irks me because i went two days without it for nothing.

    My blood pressure dropped during the test, but he didn't think it was much to worry about. I started out at 140/90 and it dropped to 105/70 at the point i got faint and stopped the test. He said it really didn't drop enough to be a risk factor, especially since i'm over 40. The rest of the results i'll get tomorrow, but i wanted to check in with you and let ya know that the darn thing got done!

    Thanks everyone,

    Jim

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  • mtlieb
    replied
    Re: Stress Test Questions

    Abby,

    Thank you! I appreciated reading your note very much

    Jim

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  • Brownie
    replied
    Re: Stress Test Questions

    Jim,

    You will be in my thoughts and prayers today. I hope all goes well.

    Abby

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  • mongo_jones
    replied
    Re: Stress Test Questions

    hi jim,

    just to let you know that i had a stress test done last summer with one of the top echo people (dr. pravin shah of hoag hospital in newport beach) who is also a hcm specialist. he also had me go off my beta blocker cold turkey 2 days before for the test--said he wanted to see how my heart responded on its own. however, keep in mind i was only on 50 mg of toprol (a dosage he said would not have any deleterious effects being stopped cold) and i am largely asymptomatic (touch wood). your case may differ given your completely different symptomology (is that a word?).

    it does strike me though that this is the kind of information that SHOULD be standard to some extent--either people who are sympomatic and have high gradients should NOT stop cold turkey (past a certain dosage threshold) and everyone should know this, or it should be clear that it is not a dangerous thing to do. perhaps a question for the docs at the next meeting in june (which again i can't make).

    as for the stress-test it was a supine bike--it may have been more exercise than i had ever done in my life! they did also spring amyl on me (not high on my favorite things to do list).

    hope all goes well--sometimes i think well-meaning people on the boards can do as much to make us nervous as to help us be calm in times of stress.

    regards,

    mongo

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  • swinand
    replied
    Re: Stress Test Questions

    Jim, sounds like you have your hands full. You hang in there, we are all here for you. I believe you are right in attending to one issue at a time. With your stress test right around the corner hopefully you can get some answers and begin to plan a strategy to help you feel better long term, at least related to HCM. Some times you gotta do what you gotta do. Can you say quack quack? Get this under control. By the way, how is your blood pressure? Could that have anything to do with your vision problem or bulging blood vessels in your neck? Sometimes on days my BP is up I see stars and flashes for a while, even feel like I am looking in two different directions occaisionally. Do you get anything like that? Hang in there, good luck with the test. Make sure you let us know what the deal is when you get back to the board. Steve.

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  • Burton Borrok
    replied
    Re: Stress Test Questions

    Hi All,
    Thanks for your postings. I think it just woke me up. When I was in the hospital and supposedly had my lungs clear, I coughed hardly at all. However, a few days before my attack the cough had gotten worse and I was very SOB. Now I’m just fine, but the cough is kicking up again. (It never stopped completely since my cold in early February.)

    I now suspect my cough and CHF are closely related. I do have a problem with water retention in my legs and to a degree in my arms also – especially noticeable when I remove my stretch arm-band watch. Some days when I push in on my shin I leave a considerable depression, but it hadn’t been that bad of late. I guess I’ll have to pay closer attention in the future. I was advised to weigh myself every morning, and if I had gained a pound or more to increase my Lasix for the day. (A pint’s a pound the world around.)

    Thanks again to all of you for your postings. It is very much appreciated by me also.
    Burt

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  • Pam Alexson
    replied
    Re: Stress Test Questions

    Jim, You are very welcome and I am right there ,got your back so to speak. Linda gave a great explanation about the heart failure and how it reflects edema to various parts and in various degrees. I still never have a lot of fluid problems in my lower extremities but I had a lot in my head, arms and abdomen. The swollen abdomen comes from the liver becoming engorged during the back -up. The only way I found out in the 1st place about the CHF was that I would go to the ER . They would examine me sometimes do a chest x-ray and give me an inhalant treatment tell me I had pneumonia or bronchitis , give me antibiotics and send me home. I often had relapses but fortunately always gradually recovered. I would always be stuffy in the head but per my knowledge did not have a cold or symptoms . It was not until several years went by and I was finally professionally diagnosed( by a doctor instead of myself) as having HCM that I was then always asked by the ER doc ,(" Ms. Alexson, what do you believe you have?"). I would tell them I was in failure and needed to get rid of the fluid. I'd get a Lasix drip, start peeing, and then go home. It did not take long before I decided I did not need to be giving these people $50.00 everytime it happened. So I took care of it myself. When I finally saw a pulmonary specialist he said he never saw pneumonia but CHF. BC&BS put me on their roster as a CHF patient and checked in with me and educated me via the phone . They installed a hub line on my phone and I would have to check BP, P and weight daily. If I didn't they would call. I resisted initially playing with increase or decrease in Lasix on a daily basis but finally got on board and did it well keeping me out of scary places like ER's where they say, " we are a fish out of water with patients like you." It was scary learning that I had been in CHF acutely many times before it was ever acknowledged that I had a heart problem. When we look at pictures of me from just last summer it makes me cry as I cannot believe how swollen and puffy my head, face, arms and belly were. How poor my color was. It is very different now. I can really say I thought I was going to die. You know my family now tells me the same thing . For us the myectomy had to be done. So I know you will make the best decision for you but as Lisa poignantly says" I think we have a duck." We will all stand by you as you travel this rocky path. Hang in there . Pam

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  • shirleymahoney
    replied
    Re: Stress Test Questions

    Jim

    If i were you i would talk real serious about the myectomy, my obstruction was only 1.9 but i had other issues that made it a decission for surgery, and the meds were not working like they were 6 months before and i was maxed out and the regurgitation was moderate to severe and a year ago it was mild, so if i were you i would talk to the doc after that stress test, i mean i feel better and i'm not healed yet, at least i'm not wanting to sleep all the time even though i'm still having a fluid issue. Jim GOOD LUCK on your stress test


    Shirley

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  • mtlieb
    replied
    Re: Stress Test Questions

    Linda,

    I really wish the sinus problems were all gone, but unfortunately some things were screwed up during the surgery and i may or may not now have some permanent scarring as a result. There's also the vision problems, and a likelihood of MS with my family history. If i didn't know better, i'd think i've finally suffered that nervous breakdown i was always worried about. LOL. What does a nervous breakdown feel like anyway?

    For right now, i've put everything else on hold and i am just concentrating on the heart problems. I find that i can only deal with one problem at a time. If i have MS, it's going to have to get in line behind the HCM. I never thought i'd say it, but i actually miss the days (three years ago) when the only thing i had to worry about was kidney cancer. Life's a real kick in the pants, aint it? Who'd have ever thought that kidney cancer was going to be the least of my worries?

    Do you ever feel like running out into the street and screaming your bloody head off? It's such a cliche i know, and i've heard it a thousand times before, but i actually feel like i could go out into the street and scream like a madman at the top of my friggin lungs

    Thanks for all the info,

    Jim

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  • Linda
    replied
    Re: Stress Test Questions

    Jim, The left side of the heart receives blood freshly oxygenated from the lungs, and the first place the fluid backup will be with left-sided failure is back into the lungs. This causes the typical cough, breathlessness, etc. The right side receives blood from the rest of the body and sends it to the lungs to be oxygenated, so you will notice the backup with more ankle swelling, etc with right-sided failure. It's rarely so clear-cut and not unusual for both right and left sides to have some degree of involvement with some symptoms of both. As for the facial swelling, you could very easily have more congestion in the upper body vessels, have your doc explain what he thinks it is. Are the sinus probs all gone? Hope this helps, Linda

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Stress Test Questions

    Jim...
    Re the CHF - I am not sure, talk to your doctor.

    RE - what next...follow me here - if it quacks like a duck, and walks like a duck and if it swims like a duck.... ITS A DUCK...

    Translated in to HCMees...if the symptoms are bad, if you are obstructed, if the meds do not work to help your symptoms...its SEPTAL REDUCTION TIME...

    Jim...looks like we have a DUCK

    Big hug!
    Lisa

    Leave a comment:


  • mtlieb
    replied
    Re: Stress Test Questions

    Pam,

    Thank you very much for the excellent information. It's so nice to have a buddy or two travelling the same path. In a perfect world none of us would be on this road, but if we gotta travel it, at least it helps to know you're all right there with me

    I have yet to actually be diagnosed with CHF. I've had congestion in my lungs, and god knows i have many many symptoms of CHF, but without the characteristic swelling in my ankles, nobody has been willing to come right out and say i'm in CHF. I've done a bit of research about this (Lisa, you know that's what i do best), and from what i have gleaned, especially in left-sided heart failure, the swelling is not always present. Is this true? My face right now looks like the Sta-Puft marshmallow man, and i'm beginning to wonder about this. Can i be in CHF and/or retaining water without it necessarily showing up in my ankles?

    Thanks,

    Jim

    Leave a comment:


  • Pam Alexson
    replied
    Re: Stress Test Questions

    Hi Jim, With regards to the neck veins , I believe you commented in another post regarding pain and discomfort. These all seem to go together when there is a high gradient and simply higher pressures /obstruction Some of us feel this increase even with the obstruction removed as what appears to be associated with an increase of fluid . It waxes and wanes as the gradient does for you folks who still have the obstruction. In the case of post myectomy I believe for me it is less now as it probably is for many post surgical patients. When I am holding a little too much fluid it seems to advance up into the neck veins and head causing some increase nasal , facial congestion. For instance the weather changed again the other day went from very cold to 50's and I found my self retaining fluid and all those symptoms as well as my abdomen swelling. These things are all very uncomfortabe and signal for me I need to increase my lasix for the day and lay off the activity until I get rebalanced. As I have CHF although still very much improved problems do present when I am spent and the weight is up. I think far more of us have that particular CHF that is often found in HCMer's. The chemical changes and phenomenen occur very much for us as they do with the people with advanced heart failure but I found that I could control or manage some of my symptoms and induce a shift to the positive if I followed some basic rules. I learned a lot of this the hard way with a lot of sleepless nights and visits to the ER. I believe from all I have read and learned is that it is a very fragile balance and requires us to be vigilent about the balance so we can try to fight against the tendency for our Hcm hearts to have as Burt puts it these" HCM attacks." We can't prevent them all but some of us need to be extra vigilant. Does this make some sense? Unfortunately my friend it looks like you are now in the group of vigilantes. It is so strange in some ways and I still have trouble fathoming it ; how very fragile our hearts are and how things can change so very quickly from stable to unstable to stable again. For me it is like it must be about some fragile old lady ;not me. I also believe that because things change so quickly we tend to feel invincible at those times when things are going very well, then we push and end up back in the pot of soup. Yuh Think? Well anyway I know I rambled so sorry. Pam

    Leave a comment:


  • mtlieb
    replied
    Re: Stress Test Questions

    Sorry i didn't answer you before:

    Originally posted by Pam Alexson
    Is he going to consider going up on the beta? I did much better for a while at the 300mgs. ;150mg bid. I felt better also.
    No plans to go up anymore on the Atenolol. In fact he wants to back me off of it a bit because he feels i'm overly beta-blocked and wants to add a calcium-channel blocker to the mix instead.

    Originally posted by Pam Alexson
    Do you have a lot of neck vein distention and feeling of congestion in your head?
    Actually i do Pam... what does that mean?

    Originally posted by Dorothy
    ...hopefully you are doing it as a step-down procedure, not just stop taking them and wait the two days. Are you going to take one every-other day with Saturday being you last?
    My doctors feel it is unnecessary to step-down just for the two days i won't be taking it. I'll take my 200mg a day until saturday morning, and then stop. I'll be able to take it again as soon as the test is over on monday, probably about 4:30 or so. Test starts at noon.

    Jim

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  • Burton Borrok
    replied
    Re: Stress Test Questions

    I expect it’s not so much the symptoms with you as it is the degree. You sure sound like you can take care of yourself just fine. Please let us know how things go. A lot of us here are interested.
    Burt

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