Saturday, July 5, 2014

health update - going to rochester

hey everyone.  on monday, i posted on my instagram that i was going up to the university of rochester hospital to see my new cardiologist about the hole in my heart.  i wanted to update you guys on how that went because i know some of you are wondering, and it's a lot to post on instagram, so i figured i would do a health update post!  by the way, i appreciate all of you who have wished me well on my way there or checked in after to see how i was, or asked how it went.  it means a lot to know that you guys care about me and have my back :)

the cardiologist i have been seeing for the past two years has been in philadelphia, but when i got new insurance in january, i didn't realize that the insurance i signed up for only allowed me to see doctors in new york state.  in the past, most insurances would let you see any doctor you want and if they weren't in your "network", you would just have to pay a higher premium or co-pay for those services.  however, due to the new healthcare system and open marketplace, it was changed in a lot of ways.  there was only one type of insurance available to me when i signed up because of where i live and because i don't work, and that insurance (the one i have now) doesn't allow me to see any doctors out of state.  i didn't realize this until after i had seen my cardiologist for a checkup in march and my insurance didn't pay for my visit.  luckily it was only a regular checkup so it didn't cost too much, but because that was when i found out about the hole in my heart, i knew i would be needing to find a cardiologist in new york state as soon as possible.

my philadelphia cardiologist recommended this new one in rochester, so i made an appointment a few weeks ago and off i went monday morning.

it takes about 2 1/2 hours to get there so it's not too bad of a drive, but any extended amount of time in the car is rough on my bladder and joints so i was already in rough shape by the time i got to the office.  i met with the nurse practitioner for about an hour before i saw the doctor, and we went over my file very thoroughly.  all of my heart problems have been going on since i was in high school, when my doctors told me i was just having asthma and panic attacks.  i saw a cardiologist back then who did an echo and a few heart studies but didn't pick up on either my hole or my tachycardia, which is why i decided to go out of the area for treatment.

they had received the records from my appointments in philadelphia, including the report from my echo last fall.  the nurse practitioner reviewed it with me, and i was pretty alarmed because it said more than i was initially made aware of.  in addition to the patent foramen ovale (congenital heart defect that is the hole in my heart), my mitral valve and my tricuspid valve both have mild leakage, i have a left to right shunt (meaning oxygenated blood mixes with my unoxygenated blood and leads to lower levels of oxygen in the blood that supplies my body), and my right heart is mildly enlarged (most likely because it has to work harder due to the problems).  they couldn't tell how big the hole was because of chest tissue and recommended further studies (the TEE that i need done, where they put a probe down your throat to see your heart better) to determine it, but said i definitely had a pfo and most likely an atrial septal defect as well, due to the other disfigurements of my heart.  all i had known about was the pfo/asd, so i was pretty surprised.  i suspected the other things because of the fact that i am having a really hard time catching my breath, feeling short of breath, chest heaviness/discomfort, tingling fingers and toes, dizziness, etc. but to hear it out loud was still surprising.

after the nurse practitioner and i were done talking, the doctor came in.  he went over the same things and asked me a lot of questions about my symptoms.  he then said that yes, i obviously have inappropriate sinus tachycardia -- my heart rate issue that i was diagnosed with almost two years ago where my heart rate goes up very high for no reason -- and that there isn't much that can be done to fix it, which i knew.  he put me on a calcium channel blocker in addition to my current beta blocker in order to try to lower my heart rate even further, because i am on a very large dose of the beta blocker without much result.  i have to be careful on the calcium channel blocker however, because it can lower my blood pressure easily.  i am always right about 120/80 so i need to monitor it very closely, especially because the hole in my heart is already causing troubles with my extremities not getting enough oxygen (which is why my fingers tingle and go numb sometimes). i agreed with all that and everything was fine and good.

but then.... i was not very happy.  philadelphia is very highly ranked for cardiac care, with the neighboring children's hospital congenital heart surgery department even more highly ranked.  my cardiologist there is also an electrophysiologist and is one of the best in the country.  the care i got there was top-notch.  rochester is not so highly ranked.  at all.  the only reason i went there is because i have to have someone in new york state.  but this doctor is also an electrophysiologist & the head of the department and it's also a teaching hospital so i figured, well, he must be pretty good.

even after reading the report of the echo, he recommended that i didn't even need any further testing, especially not a TEE, that he wasn't positive i had a hole at all, and that most people just grow out of them so he would rather just "wait and see what happens".  my mom and i were not happy at ALL, and we basically had to request a TEE ourselves and argue for it.  he still doesn't think it's a good idea, and doesn't recommend it, and he said he is only doing it because we asked him to.  my mom and i were shocked at his attitude, especially after reading the report ourselves.  he said that he hadn't even "had the time" to read my chart yet, and he read the report in front of me because that was "the first time he was seeing it".  i was extremely unhappy and also worried that this was the doctor who would be taking care of me -- someone who doesn't even think i have a problem when multiple doctors and radiologists from an extremely highly respected hospital are positive that i DO.  so, i was very upset.  my appointment was almost 2 1/2 hours long, so my joints were killing me from sitting that long.  i quickly checked out and left.

on the way home, we got stuck in a traffic jam for about an hour because a tractor trailer had crossed the median and hit another, causing them to burst into flames and cause a six-car pileup on the thruway.  because of that, we weren't back in time to pick the dogs up from the kennel where they were staying from the day and they had to stay overnight.  that in addition to all the other stress sent me into a crippling migraine -- full blown nausea and awful pain, auras up the wazoo, and everything that is terrible about a migraine.  i got home at 10 pm and slept until 4 pm the next day.  when i got up, i went to the bathroom and had a bladder flare worse than any i have had in over a year.  i had to take pyridium, a hot bath, and put pees on my bladder and crotch for about 3 hours.  i was up until midnight, then slept until 5 pm the following day, when my migraine FINALLY went away.  i was miserable.

i was able to call down to philadelphia on thursday and i told my doctor's nurse what happened in rochester.  she was appalled and very upset, and she is going to try to see if there is a way i can get my TEE done there -- the insurance denied my appeal, but there are other programs to try and go through until the insurance marketplace opens again in the fall and i can try to switch to something that will cover him.

in the meantime, i am just trying to take it easy.  i hate being sick so much.  i just want to be able to be "normal" again, and instead there are times i can't even get through an entire sentence without stopping to take a breath.  it's day to day depending on the weather, how the rest of my body is feeling, and other things that affect my pulse and heart problems.  hopefully i can get my TEE soon and they can fix my heart whichever way is possible so that i can start feeling better and start getting back to living life, not the other way around.

i was finally able to enjoy some of the sunshine yesterday and start feeling not so foggy from my migraine.  unfortunately, this calcium channel blocker is making me SUPER tired.  hopefully that goes away in a few days and i don't get the dizziness that the pharmacist warned me about!  :)  i'm trying to keep my spirits up and not get bogged down in feeling bad for myself or worrying about what will happen in the future.  for now i have my TEE scheduled for a few weeks from now, and then we will go from there!


  1. You are so lovely! What an awful experience to go through at Rochester. I am glad that things are slowly starting to sort themselves out for you though. I'm keeping you in my prayers! :)

  2. Wow praying for you! Praying that things will get better! I can't imagine what you are going through. :)


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