It was exactly one week from discharge, after a 9 day stay, that I have now returned to the University hospital again. Same problem. Hopefully a different answer. My weight has gone down by 8 pounds since I returned home. Another 5 or so to go and all of the water weight should be off.
According to the last theory, the lung issues should be disappearing. Water in my lungs caused by too much fluid on board. Well, that does not seem to be the case. The pulmonolgy team came in this evening to tell me that "they had an idea", one of the docs, a pulmonolgist for ten years, has never seen a case of this "idea". I guess that does put me into the same place that I often am, the bizarre, weird, off the wall medical case. I am not sure how I feel and am trying to stay in the present moment. "Don't get worked up, don't get worked up, it will be okay, whatever it is, it is better to know then to not know, then we can hopefully find a solution. It's okay, really it is."
I have learned a lot of new things over the past three months regarding my health. Only a fraction can be touched at a time or the reality will tear my soul apart. My tricuspit valve is leaking, most likely due to the leads from my pacemaker that go through the valve. If they get a little out of place then the valve does not close properly and causes more backflow & pressure in my heart and lungs, leading to increased heart failure. I already have high pressure in my heart.
I have restrictive cardiomyopathy. Which means that my heart is not able to stretch as it should. This is caused by the scaring from the radiation. My heart as I already knew is slightly enlarged and does have some areas that do not work well do to the heart attack.
I also have restrictive lung disease. 40% of my lung function is gone. But the good news is that the 60% that works seems to be fully functioning, or maybe not. This is really the beginning of my journey with the pulmonologists.
Some of the biggest news I am not sure how to place. Where it should go in my soul, my heart, my brain? I am a candidate for a heart transplant. Hip Hip Hooray. Yay, it is a possibility! Opposite side of the coin..damn it, why do I feel the need to be happy that I could actually get a heart transplant?? How do I celebrate this? Mourn this? Place it where it needs to go? I ask the Universe, our dear Mother Earth, God in helping me to deal with this. There was a long period of time that I believed that I was unable to have a heart transplant because it would not "take" due to all of the scarring from the radiation. This left me with the option of, well, nothing. If my heart gives up, that would be it. Now I have another choice. I can try and start over, switching as the docs say "from one disease to the next" but none the less, still with the gift of continued life.
It looks as though it could be pressing to the forefront faster than I thought. I used to think that a heart transplant, if I could even get one, would be YEARS away. Now, they are starting to tell me the order of things. What tests I would need. What kind of docs I would need to see first. How it works. What my BMI would need to be in order to be a "good" candidate. Realities. Possibilities. "Heart Transplant" have become daily words in my vocabulary.
It is time now to wheel my IV pole with a heparin drip back to my room and settle in for the night. I think I will take another little walk around the circle before I go back. That will round out my self prescribed six walks for the day.
To all I send blessings of health and the wish for a peaceful soul.
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