tanya's Journal

hello! i'm Tanya. 50 yr old female with 2 girls (12 and 15). divorced after 25 yr marriage. to this day I blame that for a "broken" heart. in my "past" life I was a RN. I live in Louisiana. i'm writing this so hopefully it can benefit others. with my mitral valve prolapse the symptom that sticks in my mind was the intense back pain between my shoulder blades. not sure how long I had been symptomatic but recall not getting dr's to believe me when I said "something is wrong with me". I recall convincing them to test me. one dr. did the non-invasive cardiac cath and the technician said it was the 1st he had seen in all his years - he said my blood was flowing completely backward and I learned later its called 100% retrograde. I needed emergency surgery. I chose a dr. whose name I recognized but unfortunately didn't research this as well as I should have. surgery was done 9/23/08. when I woke up I remember him saying that my heart was so perfect (other then MVP) that he decided to do a REPAIR and considered that and the fact it would prevent me from taking Coumadin the rest of my life. jump ahead in time. 11/8/10 surgery for MVP....the repair failed and I needed a mechanical valve. changed surgeon but still did not do my research. here are the things that stand out in my mind. immediately upon waking up in ICU I felt like I was being suffocated. the respirator was still in and I don't know about respiratory so I can't say why I felt this way but it felt as if my normal respirations were faster than the setting on the respirator. I gestured for something to write on and wrote "need fan - can't breathe". ppl were starting to come into the room as I guess I was attracting attention at this point. I remember the fan on full blast and the room temp as cold as possible. then I remember the respiratory therapist making his rounds and said OMG...he brought the ICU nurse in and basically chewed him a new a**hole. I was so cold he couldn't get vital signs. he was yelling at the male nurse that if I was able to write a request for a fan and tell them I can't breathe I need to come off the respirator. the other thing I remember was the IV in my neck/chest. that same male nurse came in to take it out and I told him NO. I said it stays in until i'm ready to leave ICU because I was now considered a "hard stick" with very few veins to chose from. I was correct in this choice because I did need IV meds. the good news....I've had 14 surgeries and this one was the easiest recovery. here is another VERY BIG TIP. I came out of surgery with a diagnosis I didn't have going in...pulmonary hypertension...I had never heard of it....I wasn't told about it but saw it on my copies of my chart....another TIP, get copies of everything...i'll explain this in next email (LOL)....I asked my cardiologist about it and was given the no big deal, we'll keep an eye on it. I won't explain it here but you can google PH CAUSED BY LEFT HEART DISEASE....that puts me in the world health organization class 2. the other biggie I came out with is SEVERE TRICUSPID REGURGITATION.....also related to left heart disease.....its bad! the best info I can get is for them to assess the tricuspid valve when they are in doing the MV surgery. last week my cardiologists nurse practitioner told me with this being a 3rd open heart surgery nobody would touch me with a 10 ft pole and in my area they don't have the knowledge or technology anyway but if I wanted to research it she recommended mayo clinic in texas or the Cleveland clinic. I welcome any questions...email me at coprhed1165@gmail.com and my advice to all pre surgery is research research research.....healthgrades may give you info on your dr. and hospital. tanya