Friday, October 21, 2011

Update Oct 2011

So I said I would update when there was news to report and basically all there has been for the last few months was wait and update tests to keep the results current.

I was in SF yesterday and now have some news.

One of the tid bits of the summer was finding that my regular pulminologist (Dr Blue Eyes, if you've been reading here a while) was leaving the hospital where I had been seeing him. While I was bummed to lose him as my reg. Dr I found he was leaving to head up the transplant unit at UCSF. YEAH! I really wasn't losing him at all.

As he said yesterday, "How does it feel to be a VIP? You're Dr is now in charge."
"Hum, like something might get done."

So I ratted myself out about the IV round I had just done, seeing as I was told prior if I was on any IV antibiotics that they would suspend my listing, which is true, of someone who doesn't have CF and chronic infection that HAS to be managed. I double checked with my new reg doc and asked them what they thought, and they all felt that someone had dropped the informational ball and that rule shouldn't apply to someone with CF, but maybe I should wait to say anything until it was over and Doc was there. They were correct.

Doc assured me that any antibiotic use for me was FINE. Please tell them from now on, and there would be NO more confusion in relation to CF patients. He was mostly unhappy because they should/could have adjusted my allocation (place in line for lungs) number up based on the IV useage. However, he was more concerned about how low my allocation number was considering my oddball antibodies and general 02 needs.

We had traveled down the night before my appointments, so at the time of my appointment I was at my worst possible shape, without being totally sick. I was due for my medication and hadn't slept worth a piss. Anyone who's traveled with me knows I don't sleep well anytime I'm away from home, it takes me days to settle in.

He asked me to do a little walk up and down the hall, which I totally bombed. Even with 6 liters of 02 my oxygen level dropped to 81 and my heart rate was SKY high. He ordered a quick spirometry test which tests the volume of my lungs. I also bombed. Dr told me I was welcome to take the test at home and to feel free to um, fail miserably. *blink blink, wink wink* IE Don't go in jacked up on all your meds, don't try to impress me. The only adjustments they can make to my score at this point is based on Volume and Oxygen need. Bombing yesterday was ideal.

So the outcome at this point is: my 02 levels are to be 2/4/6 liters. 2 while at rest watching tv/read a book/on the puter. 4 if I'm doing any walking around/going to the bathroom/cooking dinner (silly man, I don't cook). 6 if I am under any physical exertion at all. AT ALL. He said, I KNOW you aren't going to do this, but this is my recommendation and you "should" *blink blink wink wink* tell me that you are following it.

Got it. No problem. Noted.

My volume was down another 2%, taking me to 20%. Basically where I was a year ago.

I do not know what the CAT scan looked like, probably crap and scar tissue.

Doc was SHOCKED to see my echo was normal and my EKG was normal too. With my normally high heart rate (over 109 per min), and the added heart rate due to the low 02 (running at an average of 119-125) he really expected hypertension but there was almost NONE. There is some. We've known that for 3 years. Totally normal and within the reversible ranges.

He listened to my lungs and restated it's clear why I was mistreated (even he knows how mean ya'll are to me..hahaha) for so long. My lungs sound TOTALLY clear. There was one little area of my lower left lung (the area that bleeds all the time) that crackled, some.

He said: He wants me on the top of the list for the next 6 months. Period. (Um, and after that, what then? I didn't ask.) He wants EVERY lung offered to me so we can cross match antibodies. We are still looking at only 2 out of 10 lungs being a match for me.

He basically wants this ball rolling NOW. It's been too long and we've been milking this along for too long, really pushing our luck. He's been saying that for the last year while he wasn't at UCSF, "what IS their hold up?" Now he gets a chance to find out.

It's all looking good. Really. I know it sounds bad and awful and icky, but it's all leading toward NEW LUNGS. And maybe my friggin life back!

Of course it means maybe winter in SF. Ummm EWWW.

Oh, and on the way to Stanford for my friends sons' appointment (which is why we had a two day trip rather than our usual one day) we passed the turn to the town where we will be parking our trailer for the 6 weeks of post care. REALLY easy. Super easy and practically a straight shot. Pulling the trailers and motor home through will only be slightly challenging for part of the trip, mostly because of traffic and narrow lanes. No hard maneuvers to make on the SF end at all. Was good to know and see mostly all for myself. Makes one less thing for me to stew over and worry about in the hospital.


AmyD said...

This all sounds positive... I mean, given the situation. You are in my thoughts. :)

Sending matching lung vibes to you!!!!

Rootietoot said...

OK! 1 pr good lungs, on my list for you.

Jeanne said...

wow a lot happened in that one appointment but I'm glad to hear things might get moving faster than before, we might still be able to be here when the lungs come, please lord let them come soon!! I DO NOT want to be in Az. and try to make SF before your surgery, I want to be right here on my way down with you.. Hang in there it will all work out cause I've been praying. Auntie Jean