Sunday, May 11, 2008

Could John need blood transfusions again?

Yes, John and I are home from Hershey Medical Center, where we went to visit his oncologist.
 
So let me tell you what's up with John.  
 
Two things.  On Sunday night, the night before we went to Hershey, John slipped in the shower.  He banged his head on the edge of the tub.  I had to take him to the Emergency Room.  They gave him a CAT scan to see if he had internal bleeding, and said he did not.  Then the physician took the gash in his scalp and glued it back together.  I didn't know they could glue instead of doing stitches nowadays!
 
At any rate, right now, after a week, John is still in very severe pain (his head and neck).  So this afternoon he called the local doctor on call.  The doctor said there is a chance that John could now be bleeding internally, and told us to call his primary care doctor tomorrow (Monday) and see if he wants to do an MRI.  
 
Perhaps all John has is whiplash, but if it is, it is of a most severe case.  He has trouble every day, has to lay around a lot, and can never stay up after 4 pm.  He has to lay down and go to sleep.  He says his neck feels wrenched.
 
Okay, here's the second thing that is going on with John. 
 
First let me say that his cancers are NOT back.  He still remains cancerfree.    
 
But there is something wrong.  His hemoglobin count is dropping dramatically.  This means his Hemolytic Anemia may be coming back.  I wanted to explain these terms to my new readers, but I am just too exhausted.  I will just put it this way, my dear readers.  After my husband John had two cancers, then the bone marrow transplant that put the cancers in remission, he developed a disease called Autoimmune Hemolytic Anemia (AIHA).  His oncologist doesn't know what caused it, but thinks it was perhaps a medication that was given after the bone marrow transplant.
 
Okay, I'll explain quickly what Hemolytic Anemia is.  It's anemia caused by excessive destruction of red blood cells.  That's a fancy way of saying that your red blood cells are destroyed in your body at a very fast pace.  If I remember correctly, a red blood cell is made and then lives 120 days.  John's were made and then dying in 1 day instead of 120.  That is why John had to have over 100 transfusions (bags of blood - red blood cells really) in a few short months.  His blood cells were dying and they had to be replaced immediately or he wouldn't have enough and he would die.
 
After several months John got much better and needed fewer and fewer units (bags) of blood.  He appeared to be cured of the Hemolytic Anemia.  That was after lots of chemo treatments to attempt to cure it.  When John first had the AIHA he needed 7 units of blood a day at first (this took all day and most of the night), and then ended up needing less and less blood, until he appeared cured.  He had his last two bags this past November.
 
Okay, here is the part I wanted to tell you all.  His hemoglobin won't come up at this time.  As a matter of fact, it has been pretty low since the last transfusion.  It has only artificially been raised by Aranesp shots (shots to raise your red blood cell count).  What I am getting at here is, there is the possibility that the Hemolytic Anemia never left, or it is back.  Which means blood transfusions in John's future.  John's Hemolytic Anemia is not real bad at this time.  Because John's bilirubin count is okay.  But it could get really bad.  Right now he is taking these shots to stave the transfusions off.  Which may or may not work.
 
All of this is to say that he may need to start getting blood again.  For a little while or for months or years.  Who knows?
 
How is he taking this?  In stride.  How am I?  In stride too.  Oh well, life happens.  How will I feel if it becomes more of a reality?  I don't even want to think about it...  But we always manage.  We have each other and we have the Lord. 
 
Love you all,
 
Krissy

29 comments:

  1. The both of your are definitely in our dear Lords hands with so many things coming at you He does see fit to see you through.  I'm beginning to think that the two of you are the best proof of that for sure.  Take care and all will be well.  Love and prayers.  'On Ya' - ma

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  2. good gravy, Krissy!!  first, I feel for John with that neck pain.  I've had mine for years.  (thank you, Vicodin)  
    It really really sucks that he might have the anemia again.  I know it's all you can do but to keep chugging along but still.....ugh....

    happy thoughts.....happy thoughts.....

    ~Amy

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  3. nyuknyukpik25/12/2008 1:14 AM

    I am glad to hear you and John are taking this all in stride.
    You both are two of the bravest and strongest people I have ever met.
    If there's anything I can do--please let me know.
    I will continue to pray for you--ok--I'll be honest--I cheat--I not only pray to God--but I also pray to Quan Yin--she is the most prayed to goddess in the world--her focus is mercy, compassion and fertility.  I know--I am probably worshipping false idols--but I don't look at it that way-- I figure I can use all the help I can get.  
    Hang in there!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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  4. cherry2sweet2eat5/12/2008 1:17 AM

    omg i hope john gets better soon poor john when is he gonna catch a break if its not one thing its another..enjoy your week.

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  5. dougsbabygirl315/12/2008 1:22 AM

    Krissy~

    My thoughts and prayers are with both you and John. I honestly don;t know how you guys do it...

    Tawnya

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  6. God bless and be with you both. I hope they figure out if John is bleeding internally and if so something can be done about it. Hugs, Helen

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  7. Keeping John in prayers!  
    Missie

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  8. Good to hear from you.  Will have you both in my prayers.  -  Barbara

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  9. I have both you and John In my thoughts and prayers. Love Pam xx

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  10. May the lord watch over you both- I pray for the best-

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  11. Poor John!  Neck pain is horrible.  I live with chronic pain and it does zap energy out of you; the pain meds (narcotics) help but also make one feel lethargic.  I can't imagine having the anemia in addition.  I do hope both medical issues resolve soon.  You both deserve a break! You are in my prayers.

    ~Marie~

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  12. Oh Krissy!  You guys have so much on your plate!  Please take care of you!  Focus on you and John.  You are both in my prayers. CONSTANTLY!

    ~Rosemary

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  13. You guys are in my constant prayers... Let me know how it goes at the doctors.  when will you know if the anemia is back?  How will you know?   Love, Val xox

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  14. rdautumnsage5/12/2008 12:52 PM

    Sorry to hear John fell hon. I hope he isn't bleeding internally and it's just whiplash. I continue to keep you both in my prayers on the smoke. Your strength and love for one another still continues to amaze and inspire me. (Hugs) Indigo

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  15. Krissy you and John are both being kept in my special thoughts and prayer.  You both are strong folks and will get through anything that comes your way, but it would be nice to have some quiet, just relaxing days once in a while wouldn't it dear.  Hope you feel the hugs I'm sending you in my thoughts.  Arlene (AJ)

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  16. Will keep you both in my prayers.
    Pam

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  17. Krissy, Wow!  I am so sorry to hear all this about John.  Things seemed to be finallly going "John's way."  This has to be at least a bit difficult to hear, and then accept.  I will stay positive, and pray that things change and that John's problems resolve themselves, or at least that things don't get worse.  I marvel at the way you stay so strong, Krissy.  I know you have health problems, too.  Like you said, you will put your faith in God and hold tight onto each other.  Keep us posted.  I'll double up on my prayers for you. Only, I sure wish I could do more!  Love, Merry

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  18. Hi Krissy,
    After hearing about John's extensive medical challenges-- I think I will just remain quiet about my own problems.  In fact, now I feel very blessed to be who I am and rich in so many ways.  My heart goes out to you and your family.
       Would it be OK if i asked for more prayers for you and you and John via my own AOL Blog-- "Old Soldier Tom's Journal" ?

    Warm Regards,
    Tom Schuckman
    tschuckman@aol.com
    Wisconsin

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  19. Must be a very tiring episode for your both, will keep both of you in my prayers even though we pray to different God.

    Jama Hameed
    http://mummyjam.blogspot.com

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  20. Praying for you both.
    Hugs,
    Dee

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  21. So sorry to hear that your both going through all this :(  My thoughts are with you both xx

    Jenny

    http://journals.aol.co.uk/Jmoqueen/MyLife

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  22. I hope all goes well and It turns out to be better than it apears

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  23. A LOUD AMEN TO WHAT EVERYONE ELSE SAID.

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  24. Oh you poor dears you must both be exhausted.  John, sweetie, I hope thye can get you back in shape and feeling better.  hugs,  Bethe

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  25. Oh Krissy I feel bad for you both.  You have been throught so much.  Tell John to get better and stay that way.  I said so!!!  I hope he can get back to feeling better like he was and with all our prayers I think he will.  The fall in the shower was a bad one.  I fell once and hurt my kidneys. It is a dangerouse place so I put hand grabber things all over the walls and that sure helps.
    You are always in my prayers.......love and hugs    Myke

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  26. I am keeping both of you in my prayers
    hugs
    Sherry

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  27. midwestvintage5/14/2008 11:09 AM

     One thing after another for you two, I wish you could just have some peace and quiet.  My prayers to John that his neck feels better soon and I hope the both of you feel better soon.  Hugs.

                             Julie

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  28. I'm saying prayers for both of you.      Hugs,  Dawn

    http://journals.aol.com/adlessor/ACoupleofNomads/

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  29. Krissy,

    I am so very sorry to hear about John's problems and i hope that they find out what is wrong and he gets the appropriate treatment. You two have certainly had your shares of problems........ my prayers go out to you both.

    hugs Jayne

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