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.

Here We Go

I HATE driving in the snow. Well, technically I won't be DRIVING, but you know what I mean. We are getting pounded with lake effect snow, and have to drive 150 miles to the hospital. I would much rather just curl into a ball and forget this whole thing.

But, it's time to put on my big girl panties and suck it up.

So tomorrow will be a long day. Starting at 10:00 AM with a visit to the pulmonologist. It's very difficult to do pulmonary function testing with a trach (especially a trach without a cuff)....so it will just depend on what they can actually test to see if they can determine if this is restrictive airway disease (the MG, which I think is the majority of the problem, but who am I? I'm just the one whose BODY THE LUNGS ARE IN thank-you-very-much) or reactive airway disease (asthma). I'm sure it's some of both: I can't imagine having breathed 10 years' worth of unfiltered air into my lungs hasn't done ANY damage.

Then it's an 11:30 with the neurologist...so many questions. After all that, I get to have fork tines shoved into my arms and lay motionless for 90+ minutes and have all my blood drained out. Wooo--Hoo!!!

Whatever. I'm actually looking forward to talking to Dr. Teener because it's been forever. I really need to write everything down so I can remember what I need to. SO. I very much appreciate your prayers and support. Thank you for all the kind comments and encouragement. They help MORE THAN YOU KNOW.

“ For My thoughts are not your thoughts,
Nor are your ways My ways,” says the LORD.

“ For as the heavens are higher than the earth,
So are My ways higher than your ways,
And My thoughts than your thoughts.

“ For as the rain comes down, and the snow from heaven,
And do not return there,
But water the earth,
And make it bring forth and bud,
That it may give seed to the sower
And bread to the eater,

So shall My word be that goes forth from My mouth;
It shall not return to Me void,
But it shall accomplish what I please,
And it shall prosper in the thing for which I sent it.

“ For you shall go out with joy,
And be led out with peace;

The mountains and the hills
Shall break forth into singing before you,
And all the trees of the field shall clap their hands.

Instead of the thorn shall come up the cypress tree,
And instead of the brier shall come up the myrtle tree;
And it shall be to the LORD for a name,
For an everlasting sign that shall not be cut off.”
Isaiah 55:8-13

P.S. I'm listening to David Phelps "No More Night" Amazing!!!

Chorus:
No more night
No more pain
No more tears
Never crying again.
And praises to the Great I AM
We will live in the Light of the Risen Lamb!

Bridge:
See over there
There's a mansion
That's prepared just for me
Where I will live with my Savior eternally!

And the Fun Continues....

Got a call from Ann Arbor today, and they want me to go to their pulmonologist Friday morning BEFORE I see the neuroogist and have pheresis. They're going to do another ABG (arterial blood gas) and try to do some pulmonary function tests (which is almost impossible without a cuffed trach). SO, we (Doug, Jacob and I) will be headed down tomorrow afternoon, mid-lake-effect snow storm, to stay at a hotel so we don't have to get up at 4AM to get ready and drive down Friday. It would WAY too long of a day for me, let along Jacob. Who knows, maybe we'll leave early enough and get to go to Cabela's or something. Doubt it. But whatever.

So. They need more pulmonology info so the insurance company will pay for the cough assist machine. This is the only immediate step before the last step they are suggesting: putting me on ventilator at night to rest my muscles and stretch out my lungs. Sounds just great, except for the fact that this is what I've been fighting for the last 4 years because in order to do this, I would have to have the Shiley trach. (Just think of shoving a sharpie-sized marker with a swimmie on it through a hole in your neck. Then every time you turn your head you cough and hack and need suction. Oh, and there's the lovely 1 inch padded band that has to go around your neck, to hold the monstrosity in place.) Talk about reduction in quality of life. Yes, it really is that bad.

But what about the Rituxan, you ask? Ah, yes....the wonderdrug that may take 6 months to kick in (which I was aware of, Cellcept is the same way). The docs don't think that I will improve quickly enough to feel any better until it kicks in, and that would mean I would be susceptible to respiratory crisis at any moment. And I can't live like that. My family can't live like that.

So I am asking that you would please pray that I get this cough assist thing, and that it works. My only other option will be that horrible Shiley trach. I haven't been sleeping well...I'm exhausted already....

The GOOD news is that Ann Arbor is sending a referral TODAY to the homecare place so hopefully by next week I will have access to the Medical Social Worker. SO. I'll keep ya posted.
Thanks.

New Pulmonolgist

Thanks to Medicare, I was forced to find a new pulmonologist so that I could get requalified for my oxygen use at night. My neuro. can't sign anymore, I have to go SEE a doctor, and get a written request for an overnight pulse oximetry test, so I can show them my oxygen dips down dangerously low at night ergo I need oxygen.

It's so lovely when I have to do these idiotic tests. Like I'm just going to be better one day and not need it. Jerks. MG is a CHRONIC illness people. CHRONIC. As in always. As in not getting better.

So I have to go a night without oxygen, wear this stupid pulse ox all night, wake up with a migraine, kill a few brain cells, all because Medicare wants to make sure they aren't paying for something that I could squeak by without.

Then my PHARMACY (the 3 month mail in one) held my birth control pills hostage because the INSURANCE company called them to tell them my CellCept interacted with the pill and MAY cause it to be less effective. So I had to get clearance from my NEUROLOGIST for the pharmacy so I could get my damn birth control pills. Heaven forbid I get pregnant again, we all know how much that cost last time! I had to call my GP three times to find the right person who understood the situation, and get them to call in one month of B.C. locally, and RE-issue the Rx to the mail in place.

It's ridiculous. Like I have nothing better on which to spend what little energy I have!

Anyway, at least I like the pulmonologist. He's really cool. Very nice, knowledgable, and best of all, he listens to ME.

To top it all off, I feel like crap. I've been fighting something for 2 weeks and I appear to be losing.