Suzette's Journal

I finally found peace and my permanent heart doctors. For those of you who remember my cardiologist was blaming my neurologists and then troubleshooting what could be wrong. While I kept falling, dizzy, loss feeling in my leg and collapsed. I was really frustrated my progress was a longer journey and although I was sincerely happy for patients who quickly recovered I was not happy mine journey was longer. I tried hard to remain hopeful and became my own advocate had every test they could think of. I understand the concept of having to figure things out but the amount of test were not coming up with negative had results. Guessing and playingbtrouble shooting was not working 2nd option, I went to a cardiologist associated with st Francis hospital, he was funny personably and most important read my results and went to my cholesterol level that was way too high. My primary doc had me on cholesterol medicine but he wanted something stronger, also has me drink so much water before getting out of bed, water before lunch, water before dinner , I’m up yo a gallon and 1:2 a week. The slight tricuspid valve regurgitation is not bad and to be expected . He went thorough my stenosis results and my second set of blood work, cholesterol was 1/2 of what it was in normal range. Apparently his brother also works in the same building and is also a cardiologist either st Francis. So I told his brother he would be my backup doctor if something had to his brother I was in the middle of two amazing cardiologist, like the double mint commercial. but he’s best part was I will see you next year. Call me any time you have a problem, he meant it. Not happy being on those hugh shots, and pills but I do feel better. Sorry for the long post, just don’t give up and always be your own advocate my journey final turned positive.for now. Got other things to check but I got to finally not make this my main doctor visit. Like Anna put in her post please be safe Work has been difficult and I have a friend gravely ill, so I haven’t been posting but I didn’t forget the support

I met with a new cardiologist, and for the first time have a real game plan for myself. I learned so much from this doctor within one visit more than I have know within the last year. I have two blockages but they don’t need stents but in time they might. He also told me my wonderful surgery my doc did something left atrial appendage which means I dont have to worry about afib and he did me a great favor. My ldl cholesterol was 249 my primary doc knock it down either way rostuvastatin to 209. My cardiologist wants it to 55. Im like so I dont eat - he put in a script for injections Rapathal which I do once every two weeks. He wants me to drink water before I get up water before I eat lunch and water before dinner to curb appetite and get the 64 oz intake. I told him I haven’t been the same since surgery and he confirmed being on the ventilator can mess up your neurological system but he say put it low on your list. I’m going to check for sleep apnea. Apparently he had another patient prior to me come from the same doctors office - validation in my eyes. The best here’s my card call me anytime if you have questions or problems. I found my forever cardiologist. Sorry for the long rant but for those who I got to know and those who don’t don’t give up if something seems off or your not comfortable with your care of service. It’s your heart.

Going to a new cardiologist who is affiliated with st Francis’s.  I asked my surgeon to recommend one. I’m excited for a new set of eyes on my chart and health care.  

The commercial I’m falling and I can’t get up comes to mind.  The lady calling out help .  I fell again walking to work in manhattan this time on a sidewalk, and a kind gentleman helped me up.  I said I had surgery and sometimes I fall. There are kind people in the world as well as crappy - One of my coworkers saw it and asked me how I was when I was in elevator and she followed in., trying to explain if someone s behind you, you don’t go back or something stupid.  Cardiologist is doing routine echocardiogram.  

My neurologist is no longer part of my healthcare.  I find it amusing because my cardiologist and neurologist never agreed.  Never saw her again. My primary has found high cholesterol & diabetes he’s concerned, . So back to the cardiologist to let him know my new drug intake and to check how things are going after my hiatus of being a flamingo with my head in the sand.  

Primary doctor is concerned with cholesterol and now diabetes.  Wants me to go back to heart doctor, so now I’m on more drugs and have appt 8/1. Oh well 

Went to primary doctor and he said to stop taking vitamins. Doesn’t think that’s my problem . Most of them are water soluble and your body isn’t absorbing them. He had his nurse stick me for blood work and it clotted in the vital. She kept pushing the needle around I said please stop your hurting me. I’ll go to professional blood lab. Got a good raise at work and they acknowledged nothing got dropped after ohs and the way i was with work and handled myself was appreciated - That meant more than the raise to be able to balance things. I hope all is doing well to all the people who always reply and the new people that comment as well. Still miss my Tiger that’s been hard . I figured to have the urn put in a teddy bear,  put his collar on it, so he can be buried with me. I even bought a tuxedo for the teddy bear.

So I have been irresponsible, but it was the best thing I did for myself in a while.  I won’t stay that way but with the doctors stretching for things to be wrong and going on all these test, and appointments I decided to stopping see all doctors , not agreeing, i just give my self time away from them all.  I went on vacation took an easy day in Everglades on a trolley ride and air boat.  The other days all moving. I got to wonderful to do things.  I will never be the same and I’ve come to accept that but I good. It took me a year and 4 months.  We actually drove down from Long Island straight through to Fla -due to closing up condo and needed car to bring stuff back.  Very long ride. I figured it will make us stronger or I’m taking the plane back.  I drove a tiny bit 3& 1/2 hours  until we almost got swiped by big trailer and I had to go to bumpy side of the road and woke Mike up.  I watch the legs for blood clots.  I was able to reset my mind and I feel better. I’m more steady on my feet though my circulation can be off and rolled my foot.  Ouch.  1 more fall but I’m going to plays, concert and work.  I got to meet George clones and some cool alligators .  

February 23 was my year anniversary.  I’m not the same as before the surgery and its taking me longer to recoup, and I was in shape before, but I’m really starting to feel better .  I’m really grateful.  I’m going to take my first vacation and if I have to rest I will.  My ego is now in check. 

It’s wonderful to hear so many OHS survivors got their lives back to the for most part the way it was.  Unfortunately for me it’s still not that way.  I fell 3 weeks ago heading back to Penn station and last Thursday I either sprain or broke my foot with another episode at work.  I’m waiting for my time to be better.  I made the 1st year anniversary so I am happy with that. 

Good news, they finally figured it out.  Drum roll the results are in extreme lack of b6 and b12. That’s why I collapsed, extremely exhausted , dizzy and all the other things going on. I thank God for the answers.  I was seriously giving up hope which was eating away at me and the person I was.  I’m not happy about having OHS but I am grateful for the lessons I learned and joyful for the second chance of life I have been given.  I also pray for those who kindly commented or reached out, those waiting surgery and those now on the other side recovery during this holiday season.

EEG came back negative. My eyes were closed as they put a light show in my brain.  It was weird had a headache all day. Next test carotid.  I’m worn out I haven’t left my apartment in two days.  

Cardio monitor results - I have ventricular bigeminy. My heart has premature heartbeat. Gemini with two heart beats -ironic. Most beats are 60-100 bpm. Mine range is 50-175. My test showed 1 ventricular tachycardia & 3 Supra ventricular tachycardia one had 175 bpm. Super high heart muscle contracting. Explains the tiredness, dizziness among other stuff. Seeing my cardiologist to discuss results & see next course of action. Thank you for all your encouragement while I play Sherlock Holmes. I knew something was so wrong. I actually fell asleep on the way home in the train yesterday( I’m last stop) a stranger woke me up.  I can’t wait to get part of my life back.