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Other Stuff? A Question For You All

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As I mentioned earlier, because of several different issues, the doctor said I am not eligible to even be referred for consideration to the San Diego specialty docs who do this surgery for the CTEPH that could save my life. They have referred a patient before. That’s good news. They basically said I’m not stable enough, and that they have to get me stable first. I have fluid overload still, have to get the fluid down, and I need to lose weight (which is increasingly hard to do when I can’t exercise at all), and the left-sided (which is rare in this case) heart failure has to be controlled completely, and a few other little things that have to be taken care of, before they’ll even evaluate me to see if I would benefit from the surgery. (more…)

Does it REALLY Matter to You? It Does to Me!

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Just a little thought today: I sort of live in a wheelchair outside of the house. It’s taught me to look at things differently. Today, I asked Lynn to change parking spots, because there were two handicapped parking spots available, but only one was van accessible. I don’t use a van lift, so I asked her to park in the other one, so just in case someone with a van needed it, it was open. Yet, I see people all the time, without the parking stickers or placards zip into handicapped parking spots.

Another thing, since the breathing from the PH has hit, it physically hurts my chest to be around folks who are smoking–so when I go to the doctor, there’s often someone outside taking in a few puffs–that’s fine, if you smoke, but please, consider not doing it so close to the entrance of a building (some states have laws about that)–especially a doctor’s office. Smoke from cigarettes can flare problems for people like me, bad problems, so I have to sit in the car and wait until they move and finish their cigarette. Asthmatics, COPDers, babies, and more are affected by it–please, walk a few more steps to your car to smoke–your inconvenience is less than someone being physically assaulted–I know you would never intend to do that, but that is what it’s like. (more…)

This $^*# is Hard

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It was confirmed via phone call from my doctor last week that I am not currently eligible for the life-saving surgery in San Diego. In fact, I’m so not eligible for it, that my doctors didn’t even mention it to me. I’m the one who found it online and we asked them about it. They confirmed that my doctor knows those doctors by first name, and if I were stable, and didn’t have co-morbidities, they might refer me, and perhaps I can become eligible at a later date, but right now, the answer is no. And even if they can send me to San Diego later, there’s no guarantee then I’ll be eligible for the surgery, depending on where the clots are in the pulmonary artery and the lungs.

That’s like telling someone, We’re sorry, but you’re just going to have to die now. (more…)

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