still out of breath

• by keveri
• 2010-08-26 03:08:35
• Surgery & Recovery
• 1588 views
• 0 comments

hello wonderful friends
.i have learned so much from this site. we do have many kindt and knowledgable friends who share our journey and i have learned a lot..
6 yrs ago i had mitral valve replacement via davinci robot and i.
continued with atrial fib til 4/15 when admitted to hospital for chf. it seems no one knew what to do with me. my heart rate in the er was at 170 but i always could easily cardiovert at home by increasing my toprol. i had several cardioversions in the hospital prior. but i needed help this time. i waitied 5 days in one hospital and then was transferred to another hospital to be where EP did ablations and pacers.my doctor and the cardiologists all agreed i would need a pacer as my hr was still carrying on in the low hundreds.
since my husband works for a hospital system which has insurance where you have to stay in their circle of 'love', which is in net for 100% coverage. any out of services you have a $2500.. deductible and then are do 30% of any medical bills. so wouldn't you stay in net? i thought i was worth any am't of money to get better but my husband said i was crazy to try to get this paid and it would make me even sicker dealing with the establishment. he was right.
i had radio ablation on 4/21 and one lead pacer put in and was returned to or the next day for a two lead. this was never esplained.
i have sat in fear for 3-4 months waiting to feel better.
i never had sob ever, only when i was in high atrial fib. i was very indep. and could do anything.
i have been to EP office twice and was tweaked and i felt good for 4 days , no sob, hi energy. but then i would return to the same condition as when i started.always going back to where i began. . the breathlessness would return and serious fatigue. i was tweaked again and again feeling good for a week. this time i finally could reach to the floor and pick something up and weeded my garden. soon i was right back where i started. i returned to my cardiologist's office and the pacer tech tweaked again and he said my low rate was 70 and 140 for top rate but had been going at 170 beats since the last tweak.(one month) he said i was really lucky to be alive.
i was again tweaked on tues, this week at my cadiologists office (i never see the doctor for this visit) and the pacer tech says he has never seen the pacer bars and my heart rates bars matcing as perfectly as that visit. the bars and the spiking were identical.
as he and i are talking and i am asking questions i am out of breath. he looks at me and says you are fine. and i should go to the big airshow in atlantic city today and i will be fine.i woke up with a contiued headache from yesterday and sitting again in fear of what must come next. i am sick (really) of waiting to feel good. i did not go to the airshow.
i was taken off Toprol by the EP doctor. some days i can gain 3-4 lbs in 4 hours if i just touch anything with salt on it and i feel the fluid around my eyes is rising and i start with breathlessness. my feet or legs never swell.
i am allowed lasix 20 mgm but then have to take kcl for the leg cramps if my kidneys loose too much fo my electrolytes. i am so confused and getting depressed.
my next appt with my cardiologist is 9/27 if i don;t call him this morning

any suggestions
keveri