Here's a twist for ya

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Here's a twist for ya

I think I'm going to have heart failure of my own. Seriously. I explained in a previous blog all about my husband's Pulmonary Hypertension. Told all about his liver issues. Talked about going to see the specialists, which thankfully we did.

He might not be sick.

We went on Tuesday to see the Liver Specialist, Dr. John Polio (yes, his real name). He gave us awesome news, that even though Pat's liver has problems, he's pretty much in a holding pattern and a-symptomatic. His liver is functioning remarkably well all things considered. The big thing Dr. Polio was worried about was the heart-lung issue, and if they can get him regulated on that front, he's gonna be ok. So we get our hopes up for Thursday and Boston and Dr. Aaron Waxman.

We leave at 6:30 am for Boston. We argued over a FORK before we left...lol. Yes, a damn FORK, so we didn't speak for the 3 hours it took us to get there. We get to Mass General which is huge. He had to take a PFT (Pulmonary Function Test) which he passed......huh? PASSED? He has like no lung function. So we're like, ok, whatever.

We go across the hall to the Drs office. We were a little early, but Dr. Waxman was ready, so he took us right in. He was flipping through Pat's chart, and from time to time, he would look up, make this confused look then go back. He kept asking Pat, "well, why do you take this? why do you do that?" Pat kept telling him, "I don't know. I just do what they [the Doctors] tell me to do."

Then he broke the news........

He told us that he more than likely DID NOT HAVE PULMONARY HYPERTENSION.

OK, let that sink in for a minute. Let it marinate.....

Yeah, we had that same look on OUR faces.

You have to understand. When Patrick was diagnosed 4 YEARS ago, he was told he was going to die. Not he might die. But he will die. His Dr at the time told him to bring family into the office, so he had his parents go in. (This was before we met). The Dr told my in-laws that their son was going to die from this horrible disease. But before he died, he would deteriorate to a point where he wouldn't be able to care for himself.

He was forced to quit his job. He lost his apartment and everything in it. He lost his car. He became homeless, living in a tent in the woods for a year. He even tried to kill himself. Thank GOD he didn't succeed! He was in intense therapy. He stayed in a homeless shelter program for another year. That's when we met and he started putting his life together. He had finally wrapped his mind around the fact that he was going to die, and we started making the best out of our life. We made a "bucket list". We do things with the gusto of people who know they don't have a forever.

And now this.

My husband is in a tailspin right now. We alternate between wanting to laugh and cry. I can't do anything more than just hold him and be there for him if he wants to talk, but I do just that. We haven't slept much, because we stay up most of the night trying to make sense of our life once again.

When we first began dating, he tried so hard to push me away. Didn't want me to get attached to him, since I had just lost my mom to cancer, and then get my feelings crushed when he was gone, Thank GOD I was able to convince him to let me in and to let me love him, and eventually marry him.

Anyway....we have to go back Sept 18 for a Right Heart Cath test. This will be the definitive test, but the Dr. is reasonably sure we'll be just fine.

Please pray for us. We need all the help we can get! I'll let you know how it all works out......

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