Not much heart in this one

While the news we received was to be expected, it has still been an extremely exhausting day! 

First off, I am happy to say that the doctor loved my book and this was the first thing we talked about when he came in. Even every nurse we came in to contact with had read, or was reading my book! 

The doctor also looked at Tim and said from the sounds of it he’s a pretty supportive husband, and that says a lot because a lot of men might not stick around or be as involved as Tim is and I couldn’t agree more! 

I got a little teary eyed just for the fact that it wasn’t me telling Tim how much I appreciate him, but somebody else acknowledged to Tim what an amazing support and husband he is…what a great hard working man he is!😍😍 #blessed

Dr. Hornick really went through everything so thoroughly with us today and we were also able to see where all of my stents are located, as well as where all of the scar tissue is. So now I will try to explain the progression the best I can.

The masses in my chest are indeed still growing so unfortunately my cough is not due to an infection, but the fact that the mass is now blocking part of my airway. He explained that due to the blockage, my brain is getting signals for me to cough to try to get rid of whatever is blocking the airway…and due to it being scar tissue, obviously no matter how much I cough, it will not clear up the blockage, if that makes sense? 

I am going to begin nebulizer treatments in order to help prevent some of the severe coughing spells I am having. I will also try another medication to help with my coughing as well, especially after eating or when the cough is so bad that it causes me to get sick. 

And then the fabulous six minute walk, which I always do okay on, well this time my oxygen dropped as low as it ever has but thankfully I am holding on…by two points, of not requiring oxygen at this time! A little bit of sunshine in my dreary day🙃

And as far as my heart, my coronary artery, one of the main arteries that provides blood flow to the heart is also moderately blocked due to a new mass of scar tissue. My doctors still need to get together and discuss what our next step needs to be in regard to this issue.

BUT, I did sign a release so my doctor is sending my scans to the Mayo Clinic and will be corresponding with the doctor there who has been doing the study on treatment for fm!! Tim and I were already under the impression that due to the fm affecting my heart and me having pulmonary arterial hypertension, that I won’t be a candidate as this new treatment is a type of chemotherapy…something else I’m not too crazy about but it has been successful in shrinking the fm masses that aren’t calcified so I feel it would be worth a try!

However, since I still have several non calcified masses in my chest, those masses will continue to grow and do damage so my doctor feels it won’t hurt to see if I can become a part of that study.  

While this is discouraging news, Tim and I have been handling it the best we can. It wasn’t until Skyler asked me how my appointment went that I had to fight with every ounce of my being not to cry yet be honest and hopeful for her. She’s to the age where I am up front about what is going on, and that is extremely difficult to do because I love all of my kids more than anything and never want to see them hurting, especially because of me. But boy did I sob when I dropped her off!😢

I am soooo extremely grateful for Dr. Hornick as he has always went above and beyond to try to figure out this crazy disese and help me. I have an amazing team at U of I and am beyond thankful for all that they do for us!!

So that’s it. I’m sorry my heart’s just not in it to blog right now, it’s a lot to sink in…but I figured I would provide a quick update as a lot of you have been asking! Thank you for your prayers and encouraging words😍

Enjoy the weekend and stay warm!!! 

 

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5 thoughts on “Not much heart in this one

  1. Sharon says:

    Rebecca, you have brought back many memories of what Cody went through. He too had that cough in his first year of FM to the point he would throw up. He also did the neb treatments with no relief. It was told to us to eat smaller portions of food & make sure to chew it up. Plus he said that the Vicodin helped with the cough too. I know exactly how you feel. My heart is still not in it either, but I have to push on for him. When Cody was in his coma the last time the doctor’s said that would should have put him on a heart & lung transplant in the beginning. Is this something you can check in on? You know I am here for you if you ever need anyone. And I pray for all of you everyday.

    Liked by 2 people

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