Friday, April 27, 2007

Narcolepsy AND Sleep Apnea!

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 :)



  1. I am happy to read you are getting some results now and also some meds I hope you both will be soon feeling much better and also thankyou for explianing everything so well.My neighbour has one of those machines he goes on at bedtime.He too was a driver and always falling asleep at the wheel.Now I know what they call the condtion.Take care God Bless Have a lovely day if possible.Kath

  2. Bless your heart Krissy.   I wish I could do something for y'all.  You just have such a full plate.  Please know  I'm praying for you and John both.
    Hugs, Barb

  3. Good that you're getting some fairly definite results, Krissy. Hope John's neutropenia does not carry any further complications.
    By the way, well done on winning the Journals Tournament!

  4. hugsdoodlewacky4/27/2007 6:39 AM

    ((((((((((((((((((((KRISSY/JOHN))))))))))))))))))))))I am so glad things are looking good,even thoe yo have some set backs,but,I am glad you both are doing good.You both are always in my thoughts and prayers.Have a good weekend.

  5. treesrgreen784/27/2007 7:04 AM

    Hi Krissy, the more I read your journal the more and more I admire you and John.  What an inspiration to all of us.  God bless you both.  It sounds like you have a very good Neurologist, wanting to rule out everything.  Also trying different modalities to help you is good, some doctors dont do that.  God bless John, I hope they soon get to the bottom of the problems with him being neutropenic.  Indeed while you still have so much on your plate, some things are looking better.  Take care and my prayers are with you both.

  6. Narcolepsy AND Sleep Apnea?? Wow Krissy, you must have been absolutely miserable!!  You poor thing!  When sleep is disrupted it effects every aspect of your life.  You have done so very well with dealing with these awful conditions. I hope and pray your Docs are able to give you some relief now that they know what the issues are.  I should think that Bipap machine will help at night.  I've heard it does help people a lot. I've taken care of patients using them, and they are able to sleep better with them on.  Will keep you in my prayers.

  7. My nephew-in-law uses the machine and he says it works wonders! Tammy

  8. You guys should soon be in the Guinness book of world records...but also in some book that appreciates the best attitudes in the world!


  9. ((((((((((hugs)))))))))))) and prayers for both of you.  Krissy, if you do not have much info about sleep apnea and CPAP's, biPAPS, I'd recommend you do some reading to inform yourself.  The info will help you quite a bit.  I found a forum where the people are very well-informed and experienced and helpful.  I am going to try and copy the link under my siggy line for you.  You can register and post or read and post as a guest.  I wish I had found them sooner than I did in my CPAP therapy.  I was getting close to giving up when I found them lol.

  10. Perhaps your body is reacting to the sleep Apnea and waking you up causing you to lose sleep and then making you sleepy during the day?    I always though it would be difficult to sleep with a machine hooked up but apparently it is possible.   I would be tearing it off in my sleep I would think.     I was finally able to sleep last night instead of being up all night and falling asleep in the morning.    I am tired but will try to stay awake hoping my sleep can get adjusted to sleeping at night.     My back is feeling the cooler weather sitting in the chair but it is not like when it was cold and I could not sit for 15 minutes without having to lay on the board and read.    I think the medication will help with the Narcolepsy and the machine with the Sleep Aphnea for you and you will be feeling much better.    John's neutropenic diagnosis is something that will take time to figure out what can be done, but he is on the right path for sure.     mark

  11. kaydeejay54494/27/2007 10:53 AM

    Good luck with your tests (MRI).  Two friends wear a machine thing at night and both report excellent sleep results!  Hope you get some WELL deserved rest.
    Love and hugs,

  12. For John~I hope you will be having many good days this coming week. Hang in there. Hope the supplements (shakes?) help and you quit getting fevers. Hugs, Deb

  13. have a good weekend:)


  14. irisheyes19294/27/2007 5:33 PM

    I have no idea how you keep all those medical terms straight.  Just another reason why I wouldn't make it through med school!  That's alright...I'll be a musician instead.
    Love, Kellen


  15. Krissy, you have narcolepsy AND Sleep Apena........but yet you just keep going and going like the energizing bunny.  You and John are two of the most awesome people I have ever met.  I think you will be able to control the sleep apnea with the Apap machine.  The meds hopefully will help your Narcolepsy.  With the faith you have and all the prayers I do believe everything is going to be ok....
                                                   Love and hugs     Myke

  16. Krisssy, you are doing the right things by getting checked out.  I hope you don't have to wear those jobbies, I wouldn't want to, but you have to do what is best.  LET ME KNOW what the other tests show, too!

    And good luck in Hershey to John.  I am praying for both of you!  I think you are sweet and special people!  And you have become so dear to me.

    Stay in touch. Merry

  17. Sissy, what a beautiful tag!!  Umm.. some thoughts - Wow, thank goodness John's insurance will pay for his supplements... now get him to drink them!!  LOL Two a day!   Hey, you need to put your logo in your sidebar... CONGRATS on that!  So, with the new med and the machine you WILL FEEL BETTER and LOSE WEIGHT!!  How about that!  That is something to look forward to.  It helps with mood and fatigue and weight, so that is good.  I know you didn't want a machine, but thank goodness they can help you.  Hey, honey, I am so sorry you have to wear a machine, though.  (You can always complain to me about it.  That is not bratty.)  I LOVE YOU GUYS!!!! xoxoxox

  18. God Bless...glad to hear the news is getting better and better.


  19. cacklinrosie1014/28/2007 6:54 PM

    Wow, Krissy, sleep apnea and narcolepsy and a machine.  You sure have enough to deal with.  A girl I work with has sleep apnea and has had several sleep tests.  They have decided upon treatment yet.  And Hershey again...sheesh...after reading about what your trips are really like, it is tiring and full of stress.  At least you got the renal supplements and no copay...bless you two.  I'll keep you both in  my prayers.  HUGS to you, John and Mr. Michael...Chris

  20. Oh wow two sleep disorders.... glad you are finally getting the treatments now... and John, always a trooper...
    Big hugs to both and isn't there an anniversary of something coming soon...
    Linda :)

  21. princesssaurora4/28/2007 11:30 PM

    Praying for you both...

    be well,


    I hope you will get better. I will keep you in my prayers.

  23. The CPAP willbe good. Prayers continue.

  24. ceilisundancer5/02/2007 1:09 PM

    Oh, praise the Lord that the renal supplements will come in and be paid for, AND, you'll be getting help with your sleeping issues!  :)   Life can certainly be a struggle.  But, you two are examples of how to look deal and see the good, too:)   Have a great weekend ,well, when it gets here, lol, and a great rest of this week, also!  -- Robin

  25. Glad you're getting treatment for your sleep issues,  I know that will be a relief to you,  Awesome that John's going to get his supplements and no copay. Hope the Doc can figure out why John is so neutropenic.  Take care & have a good weekend. Hugs & prayers for you both, Barb

  26. jlocorriere055/04/2007 6:09 PM

    I'm so glad you'r4 getting treatment for your sleep disorder Krissy and that John is getting the supplements he needs. That's a lot of weight that he lost, let's pray he can put it on again. Have a great weekend! Jeannette xx  


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