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First the good news: Nothing was found wrong and we are still planning our trip to Florida on Monday! (See Sanibel, Florida Bound )
Now the not-so-good news: Lynn and I spent all day Friday in the ER as she was having some unwelcome familiar pains in her shoulder and ribcage. Dr. Lever was not available for consultation and the local cardio was also out. Therefore, we found no choice but to go to the local ER. The last time she had these pains, we also went to the ER. That trip resulted in Lynn having emergency surgery for a pericardial effussion and a week stay in the local hospital. This time, the echo and x-ray were clean and clear of any problems (other than the preexisiting conditions). They were unable to determine the root cause of the Pleurisy - type symptoms this time. After a shot of toradol, she felt better. The ER docs are considering this viral in nature and asked her to take it easy over the weekend. She is doing just that and we will make a final decision for our trip on Sunday.
Has anyone ever experienced a similar type episode? The doctors feel that there is nothing stopping Lynn from going on our trip unless she begins to feel badly over the weekend.
Tim, I'm glad they didn't find anything to stop your trip. I guess it's just always one day at a time. Have a great trip! By the way, I love that cute, smiling picture on your posts. You must be one proud Daddy. Linda
Those symptoms sound all too familiar for me ! Dr. Maron is still working on them. Most of these episode land me in the hospital for observation because my enzyme levels tend to rise. He said it was because of the enlargement and the arterioles that aren't quite right. Unfortunatly they are quite painful and In the last year I've been admitted 14 times because of them! I did do a baseline test for my enzymes and we will then see if they are just chronically high. Hope this helps
Tim - I happen to speak to Dr. Lever Friday night - he was going out of town for a family/friend function, he will be in the office on Monday - CALL him then. Check with him before you go out of town...
I have had symptoms like that from time to time...but I have not had the issues that Lynn is dealing with at this time...better safe then..well ya know. Call Dr. Lever Monday... thats my take.
Lisa
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
Well, we talked to Dr. Lever tonight ... and ... well ... let's just say we are not going to Sanibel this week. He wants more testing to try and discover what the source of the pains were before he clears us for travel.
I spoke to Tim and Lynn last night... the trip is just posponed a few days..it is not off... Lynn and I had a few good laughs last night.
The question remains...why does weird stuff always seem to hit us HCM'ers...????
I hand that one off to our advisors and researchers?!?
Lynn hold tight, get your blood work and lets get to the bottom of this...then off to Florida!
Lisa
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
Lisa - It was great talking with you last night, thanks for letting me vent! I am definitely 'holding on'...just don't know how much longer this bag of pistachios is going to last...
Lynn
Lynn Stewart
HOCM 4/2002
Cleveland Myectomy Crew 8/2002
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
Finally got the bloodwork done this afternoon, but it will be at least 24 hours before we hear anything. So at this point we're postponing the trip indefinitely (we still intend to go, but aren't setting a date)...we were having trouble 'living on the edge' so after we find out what's going on then we'll start rescheduling.
Meanwhile our daughter is trying to figure out what happened to her week at 'Camp Gamee's'! (Tim's mom, a retired 1st grade teacher of 30 years loves to plan daily outings/trips when Kayla visits, that's why we call it Camp Gamee's).
Lynn
Lynn Stewart
HOCM 4/2002
Cleveland Myectomy Crew 8/2002
I hope you get to Florida real soon.
Best wishes,
Lisa
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
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