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Home, but Still Sick

I was discharged from MGH on January 21st, after I had the cardio-pulmonary exercise testing with the right heart catheterization.  We still don't know exactly what is causing the shortness of breath, tachycardia, and hypoxia.

The cardiac catheterization part of the test I had Tuesday was so easy. No anesthesia, just some local lidocaine to numb my neck, where they would put the catheter in.  I was really nervous, but one of the nurses stood right next to my head, and instructed me on when not to move, and when to hold my breath.  When I had my IPSS, they had a lot of trouble getting through one of my jugular veins, because it had never fully formed.  They made note of that and went on the other side. They had it positioned through my heart and into my pulmonary artery in about 20 minutes.  Then, the hard part started.  I had to sit up, get in a wheelchair, and be wheeled to the pulmonary lab all while this big contraption is sticking out of my neck.  Usually, if you were laying on the OR table, you wouldn't feel the wire that was in your heart, but when you start moving around, you can definitely feel that something is in there that shouldn't be.  To prevent the whole catheter from moving, they sutured it into my neck.  

Off we went, with my dad in tow, to the pulmonary lab. We had to wait a few minutes before they brought me in because someone was finishing their test.  I started to feel really dizzy and lightheaded, but a small adjustment to the wire positioning helped with that. 

The first thing they did was have me sit in a big reclining chair, where they put in an arterial line in my wrist, took some preliminary measurements and blood samples, and got me set up for the test.  This whole process took about an hour.  I'm not a baby about any kind of medical test, but when they started digging for that artery in my wrist, I couldn't help but cry.  I had totally had it with people poking and prodding me.  So, on to the hard part, the excise test.  I was riding a stationary bike, but about 4 feet off the ground, and it didn't have a back.  So, I peddled the bike for about 15 minutes with increased resistance every 2-3 minutes.  Every couple minutes they took blood samples and measurements from the wires in my heart and pulmonary arteries.  I didn't think I could make it the whole 15 minutes but with a lot of encouragement, I did!  They saw how high my heart rate was when exerting myself, and how out of breath I got after just a few seconds.

I won't know the full results of the test for a while but the good news is that I do not have pulmonary hypertension.  The test did show reduced oxygen extraction, meaning my muscles are not using available oxygen.

I also got the results of some of the endocrine testing I had done while I was there.  No tumors on my pancreas (YAY!), but my spleen was slightly enlarged, probably due to increase hemolysis.  My ACTH, which is usually around 300-400, was 715!  This got me thinking, what can cause an increase like that?  My pituitary tumor could be growing, I could need more steroids, but that's doubtful since I was already puffing up from the increased dose I was on in the hospital.  Maybe I have a carcinoid tumor, that would explain the tachycardia, shortness of breath, and red cheeks.

I have an endocrine follow up tomorrow, so hopefully we can talk through this and see if it's worth some additional tests.


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