Update

So there’s good news, bad news, some questions answered and more that arose on our lovely jaunt to the U of M these last 2 days. Right before we left, however, I was getting ready to get in the shower, and one minute I was taking off my underwear and the next minute I’m on the floor, mostly on my right knee, but basically all fours. Happened so fast I don’t even know how it happened. I hurt it pretty bad, but I could move it, so I called Doug (I had my phone with me) to tell him what happened and he said he was on the way ASAP.

How I ever got up, I don’t know. It was adrenalin I suppose. I didn’t dilly dally down there I’ll tell ya that much. As I got up though, I could visibly see my knee growing. Right on the knee cap. Fluid. Bluish. Lovely.

I gimp over to the freezer to get out Old Faithful Icepack (bag of frozen lima beans) and immediately get ice on it. Then I call my mom, and lost my mind right there on the phone. My poor mom. She’s in Florida for crying out loud. It’s not like she could run over and kiss my boo boo better. But I’m telling you, sometimes MOM’S are the only ones who will do. So she kept me somewhat sane until Doug got home.

So I am lovely shades of purple. Thankfully, I think I actually ricocheted off the toilet just above my knee, because I have a huge knot there…I know. I don’t think I’ve even fallen when Doug wasn’t here. It was scary!!

Anyway. So the drive to Ann Arbor was uneventful. Thank you for praying!!! Jacob slept the whole way, we got to our hotel, he woke up happy as a clam, and after we got settled we went out for supper and to Target, even though I couldn’t walk very well.

Friday morning pulmonology tests actually go okay. They also did another arterial blood gas. The kid that did it (and I stress KID) really did a great job! I didn’t hurt much at all. It’s uncomfortable of course…but usually it’s downright PAINFUL. There were 3 people in the lab room I was in, and 2 were older ladies (45-50) and then David, all of probably 22! The lady in charge, Karen, asked David to do the ABG. I was like, okay I know this is a teaching hospital but if you could only understand what I have been through in the last few weeks….

So I walk over and I say, “David, you’re REALLY good at this, right?” He kind of smiled and said, “Yup. I am.” So I was like okay!

And he was. Lovely young man.

Karen rigged up a special thingamajiggy that was able to get the breathing tests they wanted. The results were about what I expected. I’m able to utilize about 50% of my lung capacity right now.

On to the ABG. The GREAT news is that my CO2 was NOT bad! That’s hugely good news. It’s also kind of bad though, because if it was ONLY MG involved, I would be trapping CO2 also. The BAD news, leading to the rest of our discussion, is that the O2 they measured in my arterial blood was only 63%. Low normal is 90%. So.

The only way to improve the closure of the lungs at the bottom is through mechanical ventilation. So it’s either during the day on this cough machine, or a vent at night. Dr. Teener is working with my pulmonologist at Borgess to try to get this machine. What we DID find out is that it’s basically like a Bi-PAP, which I happen to have up in my closet. McGuyver Doug will just have to rig something up for my trach so I can use it. I know he can. He’s amazing.

MORE good news is that I get to take a break from pheresis!! Whoo-hoo!!! It seems not to be making that much of a difference, especially after having 4 in two weeks. So I am VERY excited about that.

We are also trying a new medication on top of the CellCept for now. Cyclosporine. Once I’m on the full dose we will see 1. If my kidneys can handle it, and 2. If I can go down on the CellCept.

He also gave me Mestinon to use as an acute symptom-treater. For example, if I’m having a really bad time with my speech at a certain time, take one and see if it helps. So. Between new medication and SOME kind of mechanical ventilation, I think we are on the right track to figuring this out and getting me some energy back.

The Rituxan is still very much an option if the cyclosporine and breathing machines don't improve the MG.

Oh yah, the one bad thing is that I might have interstitial lung disease from all the crap I’ve been breathing in unfiltered for 10 years, and there’s no treatment for that, so we’re just not paying that much mind right now.

Thank you thank you thank you for your prayers and encouragement. I could FEEL people praying, and would love your continued prayer support.