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Friday, March 1, 2013 - Past Due Update / BIG DECISIONS

Friday, March 01, 2013

I felt crummy. I felt like my heart wasn't pumping blood like it was. I felt like my ejection fraction had dropped. I told my husband this. I was fighting off the crud going around too. I ended up getting a mild cold and got over it. I began to feel more crummy. My blood pressure was super low. I had some of the signs they teach for women having heart attack or heart issues. Well, hospital I went. They said my enzymes were good, my cholesterol was bad...oh well, nothing new there. Ok, but they couldn't explain my symptoms and I felt like an idiot going. Well, they had me do a stress test. I got to go on the treadmill. The doctor stopped my test a little early because my heart was sending out too many pvc's and he paged the cardiologist and explained what was going on and they did the rest of test and my ejection fraction was 29. It dropped from 35 to 29. Well, that would explain the breathing difficulty. I was 29 when I had my massive heart attack. He said he was referring me to different cardiologist to have defib put in me. Well I saw that doctor on Wed. I came home crying. I cried in the doctors office like a blundering idiot. My emotions are a little wild. I went home, I told my hubby, I spoke to my daughter, and text my other daughter.

My daughter said nothing in text except "Listen to what your body needs." Hmm, was she so right. What is my body telling me. It has been telling me for a long time to go see a different cardiologist, to go to Seattle and at least consult with Dr. Brody. Ok, I really dread the traffic and parking, but I do know he is one of the top cardiologists and that he specializes in this stuff. He has sound credentials too. Before I go into this more, the visit on Wednesday, some things sat with me wrong.

The doctor was friendly, nice, compassionate and all, but he had no idea why I was coming to see him. He said, "Oh you are coming for a follow-up." "Oh, you saw so and so at the hospital." "Yes, but he did not refer me to you, Dr. Larson did." "Oh I see, oh let me look at his note and goes and looks and says it looks like they redid your stress test. "No." "Did you even have test?" "Yes" "Oh, here it is, your ejection fraction is 29." "I see, they want to put a defib in you." "Ok, I can get you scheduled for that. what questions do you have?" I then became quite emotional. He seemed sympathetic and said you do have choice of not getting it, that is up to you, but no matter where you go, they will want to put it in you as it is standard." I said, yes, but I need to talk to my husband and daughters before making decision.

It is to basically keep me from sudden cardiac death. I posted on my FB and had lots of great comments to have it done or why wouldn't I or to go get scheduled now. Some things that indicate to me for another opinion. 1) my test should have been re-done 2) when I followed up with my cardiologist he said the test showed nothing new, that my ejection down and I can exercise and who told me not too, and said I need defib and sending me to so and so, and that I just have to face it that I have a weak sick heart. Chewed me out for my poor eating and said I was just going to eat myself to death. Wow, all because I said I was doing really well with my eating until Thanksgiving, and well that I over did over the holidays but am back on track for the most part. He said, well, you just die if you eat like that. I just like wow, shocked and he was kind of rude in some ways...and I left feeling like a number. He has no idea how hard I have tried to be good, do the right things and I am human. You take people with my condition, you see how well they eat...they don't....I struggle at it, but I overall eat healthy. From Thanksgiving to now, I have yoyo'd but definetly healthier than my past.

The cardiologist on Wednesday said, really, I think a lot of it is genetic and he is right. I will continue to do my best with eating healthy trying to lose. I will tell ya, the plan my daughter gave me is HARD I can do it, but it has been too hard to do with the move being in hospital, I get part way, or day or two...but when you go from early morning packing moving into late evening, part way through day, you are hungry, need to eat, tired, in hurry with lots to do, stuff packed in boxes, you don't have time to cook or prepare..and to prepare ahead does not work with moving. Being poor too didn't help, going and getting a $1 mcdonald reg hamburger and that was it, or a $2.19 jumbo jack from jack-in-the-box...well that is what we did, may have been my only meal of we were mostly moved in, still unpacking to do, we ordered pizza and brought home. Ok now is this normally how I eat? Heck no. Were there or are there better places for choices to eat? Yes, but financially couldn't do it. Am I eating like that now? NO I have been averaging 1 - 2 salads a day and meal... I am not 100% yet to where I should be, but I am working on getting back there.

Whenever I call to get appointment, talk to nurse to see or let them know what is going on, it is like impossible. Also, when I got out of hospital, I was told to follow up in week with cardiologist. This was a Friday evening I get discharged. Monday, early afternoon, I call to get appointment and get yelled at by person, "why didn't you call on Friday? He is not available for two months. Needless to say, they put me in with heart failure clinic that scheduled test then cardiologist. I just feel like I am a number, or a nobody. I may very well need the device, but they sure give me room for lots of fear. I decided to follow my instinct gut, listen to what my body and mind say and am breaking down going to Seattle to specialist.

Wow, talk about a change in professionalism. Wow. I called and they asked if I want scheduler or nurse. I said, "Nurse, please, I would really like to talk to nurse if at all possible." Wow, I was immediately connected. I told her who I was and that they took care of my dad, and who he was and what was going on with me from beginning to end and what it is they want to do now and that I am scared and really want an objective opinion. I trust this doctor. If he says I need defib, I will get it. Anyways, she has me speak with the scheduler. He takes down information then says he needs to talk to doctor and will call me back with appointment. Soonest is the 13th but have me on list for cancellation to get me in sooner. Said he would tell Dr. who I am and who my dad was. It wasn't even 5 minutes later and he called me back stating that he wants me in immediately this Wednesday. I can bet, he listened to them as to what was happening to me, felt it was urgent to see me, then when he heard my dad's name and new who I was, said, heck no, she is getting in here right away remembering my dad's history which I know he remembers well, and it triggered that I have already been through everything my dad has gone through in a short span where my dad went through over 20 years. Yes, he kept my dad alive for more than 20 years.

Ok, people ask me why did I just not go there from the get go. It is Seattle...traffic parking etc. Also, when I had heart attack, I had no choice to where I was taken. I trusted what was happening to me, there was no reason to no too, until the first one put me in position I am in I should have gone when they told me it was anxiety and normal.... but I believed and I didn't want it to be was bad.... Well, NOW I am doing it. Also, they are in the forefront with this stuff, so maybe there is something better for me they can do... I already know that they know how to fix my heart and make me whole again and that I am perfect candidate, but all in trial studies and until approved and out, I don't get that chance. I would be willing to be part of a trial...but they were closed to the one i applied too. Well, God has a plan and it is in his hands and I believe he wants me to have this 2nd opinion.
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Member Comments About This Blog Post
  • _NONNIE02
    Hey, girl! A friend pointed out your blog to me and I am here to reach out to you. Go to my blog (around Valentine's day) and you can read my history with CHF. MY heart caught a virus and I was below 10% EF!

    I FEEL YOUR PAIN, FRUSTRATION AND FEAR!! I would love it, if we could help each other.

    I had my implant on 2/1/13. So glad I did!!

    Going to friend you. I am on FB, as well (another option). Love and prayers are with you! emoticon
    1907 days ago
    emoticon So glad you move into action. emoticon
    1908 days ago
    I am glad you were assertive and got with the right doctor who knows your history and situation, Nadine. With something serious like this, a second opinion from an expert is a good choice. Good for you!
    As for the defib, I have know a couple people (one in her 20s) who had to have this implanted. They resisted, but after it was done, said they felt the best they had in a long time. Why don't you ask your second opinion if they could let you talk to someone - a mentor - who has one? they may be able to better empathize with your situation and put your mind at ease.
    Keep us posted, Nadine. We want to see you feeling better and back to your happy self!
    1908 days ago
    I am sorry you are facing this MAJOR challenge. I will lift you up in prayer and hope that you get some relief soon. Sometimes we just have to listen to what OUR bodies tell us and NOT be railroaded by the doctors - especially those who are too busy to be considerate or kind.
    1909 days ago
    1909 days ago
  • DEBBY4576
    My my my. I never read that long of blog, but I couldn't help myself. It was so interesting, and yet I felt really bad for you. How old are you? A heart attack at 29? Seems like they would have done more back then. I get what you said when you said "should have gone when they told me it was anxiety and normal.... but I believed and I didn't want it to be was bad..." I do believe that that reaction was very normal. I've done it myself. Unless you and I aren't normal haha.
    Keep us informed when you get to that specialist okay?
    1909 days ago
  • LADYJ6942
    How terrible. Way to go on getting in touch with the DR who took care of your dad. Good luck, hugs and prayers on there way to you.
    1909 days ago
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