Sunday, January 29, 2006

Ups and Downs

Wow, what a difference a day makes.  When I called John up Saturday morning, the day after the transplant, he told me he had showered and eaten.  His voice sounded so energized and full of life.  He sounded almost like a different person than the day before.  I rushed over to the hospital, because he said the doctor would be in shortly to talk with us.  I was very surprised when I walked in to see him sitting up in the recliner reading a newspaper!  Yes, they said he would be weak and resting for several months, but he was doing so much better than the day before. 

I looked at the chart to check out his counts (his labwork).  His white blood count (WBC) was only 0.3.  John said the nurse had told him he was "severely neutropenic".  She also said the white cell count would fall even lower over the next few days.  Then it will probably start coming up in 10 days to 2 weeks.  

Being severely neutropenic means John can catch an infection at any time.  That is why he has to wear the mask all the time, except in the day hospital.  The nurses ended up telling him he ought to wear the mask at Hope Lodge also, until his white count comes up, which should be about two weeks.  

Anyway, John was doing so fantastic, that they discharged him from the hospital on Saturday!  He was able to leave, and he had lots of energy and a lot of color to his face.  They almost didn't discharge him, because of an insurance issue (where the insurance co. is denying him two meds that they promised they would pay), but the docs decided to let John out, and try to deal with the med/insurance issue on Monday.  I hope it gets dealt with, or John might be readmitted to the hospital on Monday again, because he won't have his medication.  

Now that was the up day.  Today (Sunday) was the down day.  John woke up exhausted.  The color in his face was gone and he was extremely fatigued.  We went to "day hospital" and they did some labwork.  The found out his WBC was 0.2.  His red blood cell count was pretty low, and his platelets were extremely low.  So he had to have a platelet transfusion.

He was concerned about having the transfusion because he thought he would have the shaking reaction again but they gave him a large dose of benadryl, and he breezed through his first ever transfusion.

We were at day hospital from 10 am till 2:20  pm.  When he got back to Hope Lodge, he ate a peanut butter and jelly sandwich and some fruit cocktail.  Then he went back to bed just about for the rest of the day, except to occasionally watch TV.  I got him up to take his meds occasionally and take his temp (which must be done four times a day).  And at 6 PM I tried to make him eat but he refused.  So I made him a milk shake with Ensure in it.  I am sneaky.  To get him nutrients I mixed Ensure in with the ice cream!  And blended it up.  He loved it.  Not that sneaky, I told him what I did, lol, before he drank it.  But that is all he would have for dinner.  He refused to eat.  The doctor says that if he does not eat enough he will have to go on a glucose IV instead of eating.

How am I doing?  I am having little spasms in my legs from sitting too long in the hospital rooms.  I can't go too far for walks because I can't leave his side.  I am afraid that my legs will spasm into charley horses any day now, which is SO painful, and has happened before.  I just don't want it to happen while I am driving, and wreck or something.  This is something silly to pray for, but please pray for my legs.  Thanks.

How else am I doing?  Holding up great.  Doing a lot of work for John. And emotionally fine.  It is nice to have him home from the hospital so we can have time together.   

Well, I am extremely tired now.  And John and I have to get up at 6:30 am to be at "day hospital" on time   tomorrow.  So I had better get off.  I love each of you. 

Krissy :)


  1. I am keeping you both in my prayers.

  2. Krissy,
    I was so excited with the start of your entry...and have to ask if the doctors expected the ups and downs and told you this could happen?  If they did or did did an awesome job of helping John get through the rough times.  I am worried about you too...please take care of yourself...easier said than done, this I know.  But the one thing you can count on is the love of your j-land friends and your family...all of us love both of you and want a full recovery for John and for you to feel good.  We care, we love you both...many hugs and prayers....

  3. Krissy,
    Still sending lots of love, hugs and prayers.  Hugs, Lu

  4. ((Krissy)) You know there will be the ups and downs. Glad that you have a good team of doctors and nurses there taking care of John. You get rest and take care of yourself! as always, you are in my prayers.


  5. Krissy one day at a time:) Praying for you and john


  6. Yes, one day at a time.   I hope your legs hang in there as well as you do!

  7. Dear Kissy...
    You don't no me, I never write in your other journal I just read it. I have been following John for a while now. I'm a catholic like you and recently became a Extraordinary Minister of Holy Communion. Today I was on to give the wine as this is my second time. When I came in to sign in, I was asked to switch places with Fr. Bob as he broke his hand ski-ing. They where more people there who where qualified to give communion but they asked me.
    Now you ask, what this have to do with anything. Well today I had planned to offer my communion up for John and his transplant and I feel I was picked to give communion for John. I hope God was hearing all of our prayers. I no this may all sound a little crazy but it was this wonderful feeling I had for John.
    May The Lord be with you both.

  8. Thinking of you.  Prayers too.

  9. Prayers coming for your legs and for you and for John.  I am sure there will be many ups and downs.  Hang in there...  Also, look online for "exercises for legs on airlplanes" you should get some good ones that you can do while staying near John and increasing your circulation and muscle use to avoid spasms.

    Be well,

  10. Hang in there kid.   Prayers still coming your way.          Dawn

  11. Prayers to the both of you, along with lots of love.


  12. Krissy you and John are in my prayers.......Ally

  13. I am so glad you are updating this journal! I bet they say ups and downs are certainly to be expected, but that doesn't make it easy. How great that he was released from hospital so soon! Praying for your legs staying well and John's blood count. You sound like you are doing a great job, Krissy in being there for him. Love & blessings, Deb ;-]

  14. Glad he's home with you. Sending prayers for your legs !


  15. John's sure to get up and down days for a while. I'll pray for your legs too!! I hope the insurance gets sorted, how can they refuse the meds when they promised to pay for them?! Jeannette.  

  16. One day at a time Krissy, you're still both doing great.  Sorry for pain in the legs, try lifting them up and down slightly to keep the circulation flowing whilst sitting. ((( hugs to both and in thoughts ))) Rache xx

  17. Krissy,  ((((((Krissy and John))))) John2 is sitting here with me and wishes you guys luck and he sends his love.  This sounds very good, honey!  I am so glad you guys can be together.  I know how important that is!!  I was so glad to see this entry today as I hadn't heard from you in awhile.  Now I know why.  You have been so busy being John's only caretaker!  Things seem to be progressing.  Please take mini-breaks when you can and don't forget to eat and drink constantly and take the magnesium, extra every other day!!!!!!!!!!!  I love you!!!!!  We are off right now to go take care of Michael =)!!  Call me when you can!  Love, YTP xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

  18. You guys are doing great!!!!
    Lots of hugs!!!
    Linda :)

  19. Thank the dear Lord for such a miracle as this.  It's absolutely amazing what can be accomplished.  I just wanted to let you know that I too sit alot, at my job - 8-10 hours everyday and I have found that if I just get up and stretch really good every half hour or so it really helps.  I also jiggle my legs in tune to the radio as I work.  It seems to help.  Prayers for you both ! 'On Ya' - ma

  20. I am so pleased that things are going so well for John.  Thinking of you both Krissy, thanks for the update, Take care. :o)


    Sandra xxxx

  21. Krissy. . reading the first bit I thought WOW! And then the down day came. . . awww,poor John.I hope hes ok .What a lovely caring wife you are sneaking the ensure LOL.Prayers still ongoing for you both.Take care.

  22. Krissy, I'm sorry I haven't commented in such a long time, but I have been following John's progress leading up to his transplant.  I think you are both very brave.  You may think it's not like you had a choice, and that's very true, but I'm afraid I would be crying and whining a whole lot.  That would help no one.  Please know that both you and John are in my prayers daily.  An old friend, Susan

  23. HI
    Glad to hear things seem to be coming along nicely.
    Good work on the sneaking him nutrients--that's one way to do it!!!!
    Last year when I stopped eating the doc had me mixing slimfast with icecream and making milkshakes that way--it was yummy.

  24. ((((( Thinking of you both )))))
    Sara   x

  25. Being sneaky in order to take care of your husband is a GREAT thing!  You two work wonderfully as a team.  Let's hope things go smoothly from here on out!  Thinking of you everyday...JAE

  26. Oh, sweetie!  We have been praying for you both twice a day!  We have 2 extra little girls with us right now and we've been as busy as one-armed paper hangers.  I love you both so very much.  Be blessed in Him, Penny

  27. Still praying and now praying for your legs, that was cute.
    You are holding up well but I hope you are able to rest and take some time for you to regain strength and energy. Don't want you getting sick from wearing yourself out. You both are in my thoughts and prayers.
    ~ Jenny

  28. I hope John is feeling better. Take care of yourself.


  29. I am keeping John & you in my prayers. CT got home from Ruby Hospital Tuesday night and I am exhausted. He's on home IV antibiotics, keep him in your prayers if you can squeeze a lil one in that they work and he can keep his arm. Thanks God Bless!

  30. I'm glad things are slowly getting better though it all.  You both are amazing people!