Jacksonville Mayo Clinic

Sleep(less) Lab and Stuff

Last Friday I spent the day at Mayo meeting with my pulmonary specialist and physical therapist before spending the night in the Sleep Lab.

The pulmonary specialist wrote me a new inhaler prescription because he hopes to be able to take me of Symbicort completely as he feels it is a fairly strong steroid inhaler designed for asthma or COPD that I may not need. Fine by me, I would rather be on a weaker drug that does the trick (and comes in a generic form), so we’re going to “experiment” with this new inhaler and make adjustments if necessary.

The physical therapist prescribed a 10-12 week plan of 2-3 appointments a week to improve my mobility, strength – and well, everything. I am now tasked with finding a physical therapist who can design a plan for me in a facility that offers a therapy/exercise pool as well massage therapy. I have reached out to the local MDA and asked for assistance in recommending a specialist who is familiar with Pompe. I also contacted my insurance company about approving my PT and they were surprisingly helpful. I thought I was in for another battle over coverage, but no – they said I can go to whoever I want and if the provider needs pre-authorization to just have them call. The administrator even told me they could call her directly and she would authorize it right away! Wow!

I couldn’t check into the Sleep Lab until 8pm and because I had been up since 4:30am I figured I would be zonked out by the time the sleep study began. No, not so much. Yes, I was tired, but I didn’t really sleep through the night.

First, they hooked me up to a bunch of wires. Two on each of my legs with the wires running under my pajamas. Two on my chest, one on my neck, five on my face (yuck!), and twenty in my hair (super yuck!). Plus the pulse-ox monitor on my finger and a tube in my nose. This process took over an hour. The wires were attached with this gross medical gel that dried like glue and took days to get out of my hair. Serious hat days followed the sleep lab slumber party.

At 11pm it was “lights out” and they took away my TV remote and told me to go to sleep – or at least sleep until they woke me up a few hours later! They woke me up every few hours to roll over and at one point they put a bi-pap mask on me. I did not like this. The first mask they tried to put on me made me feel very claustrophobic and it had to come off immediately. The second one wasn’t as bad, but it was still annoying and it was very hard to exhale through, plus it kept waking me up. Not fun. I was exhausted the next day – I don’t know why they call it a Sleep Lab. Shouldn’t they let you sleep? Or at least call it a Disturb Your Sleep Lab?

The results from the Sleep Lab indicated that I do not have Sleep Apnea – I already knew that. However, when I am in R.E.M. sleep my oxygen levels drop into the 80s which is lower than normal. Not scary lower than normal, but enough to want to keep an eye on. They said I could benefit from using a bi-pap machine at night, but agreed to see if my Myozyme treatments would help my overnight breathing improve first. Come on Myozyme! I will be rechecked in 3 months but I’ll only have to wear the pulse-ox on my finger overnight and at home.

I had my second Myozyme infusion on Monday, April 12 and that went well – no adverse reaction and the IV went in smoothly and left no bruise. They only had to monitor me for one hour after the infusion instead of two, but it was still an all day ordeal. Dr. Byrne said that the third and fourth infusions are the ones to watch because if I’m going to have a reaction it would likely happen at that time. My third infusion is scheduled for April 26 and then every other Monday after that – barring any further production problems at Genzyme.

Off to see the Expert!

I have an appointment to see a muscle disease expert at the Jacksonville Mayo Clinic on February 8. They are also going to do another EMG. I’m too happy about that part. I hope they have someone do it like they had at Rochester, someone who doesn’t torture me like they did at UCLA, then it won’t be so bad. But EMG’s are never fun. It is never fun to be stuck with needles and then have electricity sent through your body for two hours.
 
So with a diagnosis in hand I really hope we can discuss treatment options and get started soon, but I really have no idea what to expect with this visit. I don’t know if this doctor is going to want to run more tests other than the EMG or if he’ll be willing to jump right into to treatment. We shall see – and soon.