I sat in the neurologist's office today and tried not to doze off. Within a short time the neurologist walked in and announced I had both Narcolepsy AND Sleep Apnea. I told him that was an impossibility as the nurse had told me earlier that the chart said I only had Narcolepsy. Well, it turned out she read the chart wrong! Drats!
The neurologist gave me samples for the Narcolepsy. I will try the medication for three weeks to see if it works. If not, the doctor will prescribe something else.
Meanwhile, in the morning I have to go for an MRI to make sure I never had a stroke and don't have a brain tumor. That rules out those possibilities that can cause daytime sleepiness also. He doesn't think these things are probable, but wants to make 100 percent sure.
And finally, a week from Saturday I need to get another sleep test for Sleep Apnea, while wearing a CPAP machine and then a BiPAP machine. It will be to see if one of these will help me. If one does I will be using a machine every night.
Pill in the morning, machine at night. Goody! Goody! At least I will start to feel better and not be so miserable!
Thanks to all of you who supported me through all of this while I was sleepy, and did not belittle my Narcolepsy as "fun little naps". And to those of you who commented that this happens to you also, or a family member, please get checked. It is a seriously debilitating thing. Ask your doctor how you can go about getting a sleep study done.
Now on to John - I don't know if I mentioned this already, but it turns out his fevers actually were due to an infected PICC line, unlike they had originally thought. Also, he was getting high fevers due to Graft Verses Host Disease. Even though John's cancers are gone, some complications persist. He just seems to get more than the average bone marrow transplant patient. I am not complaining, it is just the way it is. He is also SEVERELY neutropenic at this time. He has been neutropenic since he was in the hospital this last time. This means he has a severely compromised immune system, almost none at all. We are not too worried, though, about him catching anything. He has been neutropenic so many times before and he has stayed alive. You can't worry all the time. He just wears his mask and takes certain precautions. On Monday Dr. Claxton is going to try to figure out why he is so neutropenic.
Yes, I said Monday, LOL. We have to go back to Hershey on Sunday, Monday, and maybe Tuesday. That's okay though, we are used to it.
Oh, good news! After phone calls for about three days, I was finally able to get John the Renal Supplements he needs! Praise God! His insurance will pay for them, if I understand it correctly there shouldn't even be a copay. John has lost 90 lbs. since the transplant, a lot of it in the past four months. So I am glad he is finally getting the supplements! :)
Okay, this is getting entirely too long, but before I go, I wanted to say thank you to whoever sent John the Adagio Teas! He loves them! And well, I do too, LOL. Thank you from the bottom of our hearts. You sly thing you, you didn't send a card!
Bye for now, and all my love, Krissy :)