Tuesday, August 29, 2006

Hoping the IVIG works

Hi ya'll.  It's Krissy.  I want to thank you for your tremendous support over the past week.  Never have John and I felt so supported and loved. 

I haven't come on here and written an entry for awhile for a few reasons.  The first was that John was having so many ups and downs.  When he was having his downs, I guess I didn't want to get on here and let you all know.  Also, I didn't have access to a computer for about a day.  So now I will do an update on John.

John's condition has been kind of curious.  He has had several doses of IVIG to treat his illness.  His body does not appear to have responded yet.  But the oncologist told me yesterday not to get upset.  The IVIG can take up to 10 to 14 days to work.  Ten days will be Thursday.  So the doctors will begin to gage at that point if the IVIG treatment has worked.  There have been lots of ups and downs this week, because it had been looking like it had worked, and then no, and then yes, and then no, and now possibly yes.  It is so hard to tell.  We will just have to wait until time is up and see how he does.  If there is another treatment if the IVIG doesn't work, I am not sure.  Maybe they will try chemo again like they tried the first week John was diagnosed with Autoimmune Hemolytic Anemia.  

John is still very weak.  He is also on dialysis almost everyday.  His status has changed from temporary dialysis to intermediate dialysis.  The kidney specialist told us that John is heading towards being on lifetime dialysis, but he is not sure.  The kidney doctor said that sometime this week John is going to have a permaport put in his chest, instead of the line sticking out of his neck.  It will be much safer.  It will come out of his chest, but it will still be routed through his jugular. 

The dialysis machine is not the worst thing in the world.  He is only on it three or four hours a day then he is off.  If John has to beon that every day in the future, he will be off of it a lot of the time, and he will be able to walk around while he is not on it, do a lot of things, and walk in the sunshine.  It's not so bad.  It looks like a soft serve ice cream machine, LOL.  But it makes a LOT of noise.  I stay with him while he is on it, 'cause he likes that.  The worst thing that we both feel about it is that we both feel very vulnerable.  Especially him.  We discussed this.  He said he felt vulnerable because he needed the machine to stay alive.  If he doesn't have it for some reason (can't get to it) for longer than 24 to 48 hours then he won't survive.  He doesn't like being so dependent on a machine to remove toxins and keep his electrolytes stable.  

The biggest thing I am worried about though is whether or not the IVIG will work to cure the AHA.  John can't go on indefinitely getting 2 - 7 bags of blood a day like he has been getting without them finding a cure to stop him from needing all that blood.  His body is breaking down the red blood cells, and this must stop.  Also, he sometimes has heart problems when his red blood cells are low, and now has had a very large plunging in his platelets.  

Okay, I guess this is getting real medically technical.  Didn't mean to do that.  

So how am I doing?  Sometimes I get tired.  I get to the hospital early in the morning and stay till about 8:30 at night, helping the nurses take care of John.  And you know what?  I wouldn't trade it for the world.  Because I love him so much.  

I decided today I was going to go to K-Mart and find a hobby to do while John is doing dialysis and just sleeping in the hospital.  A diversion for my mind.  Just sitting there mindlessly can numb your mind, LOL. 

Okay, how am I really doing?  I am getting by.  Keeping myself steady.  I am doing fine for somebody in my position I think.  On the other hand, I realize there are some very real issues I need to deal with.  There is a psych nurse here at the hospital that comes to talk to me.  She is helping me, and tomorrow she is going to talk to me about some more of the serious issues.  Okay, even though I hold it together, sometimes I cry.

I want to finish up by saying thank you all who are sending John and me cards, donating blood, writing entries for The Gazette that Tammy started.  Gee, there is so many things to thank you all for.  I love you all more than I can ever tell you.  I read entries to John from The Gazette every morning in his hospital room, and he gets so touched.  I also tell him about the no. of units of blood donated, and I read him the cards you all are sending.  

Well, this is getting too long.  Love everybody,

Krissy 

50 comments:

  1. When Cliff had his coranary artery bypass graft surgery, he wanted me beside him all the time.  The couple of times I left, he took a turn for the worst.  It's hard, isn't it?  

    Hey, I know of folks who did fine for years on dialysis.  God bless you both.

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  2. {{{{KRISSY}}}} awwwww  honey it is ok to cry!
    You and john are in my thoughts and prayers!
    Take care of yourself too!

    Sharon

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  3. Hang in there guys! I know that it is scary and frustrating, but you are together and that is important! Good thoughts winging your way.

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  4. Krissy, thanks so much for the update on John.  You know we've all been praying for him and you.  Keep in touch.   Linda in Washington state  

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  5. tendernoggle8/29/2006 11:28 PM

    When I was at Emory with my husband Danny for so long, I got me a notebook and started writing down everything that went on..when the nurses came in,when new treatment was started, when people visited, etc...Everything seemed to be one big blur and being able to write it down helped me a lot...I got a clip board with some notebook paper and a pen and a bag to put it in. I also got me some paper back books. I stayed day and night becasue it was too far to travel home at night and that chair I slept in was pure torture to my back..One morning I could hardly walk...but like you..I WOULD NOT HAVE TRADED IT FOR ANYTHING IN THE WORLD...and let me tell you..I know so well what you are going through, both mentally, physically and emotionally. My feverent prayers are with you both...May God bless and keep you.
    love,
    Carlene

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  6. seraphoflove90018/29/2006 11:48 PM

    {{{{Krissy}}}} Good to hear from you. Prayers are going up. :o)
    Lisa

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  7. Thanks for the update Krissy...
    I think about you guys every day and wish I had words to make every thing better....
    Love you Linda :)

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  8. Krissy, thanks for the update; was wondering what was going on.

    I'm glad you have someone to talk with like the psych nurse. It has to be overwhelming for you to be so strong for John daily without having the same support back. I'm hoping the psych nurse will be a great outlet for you to deal with some of the emotions you must be feeling.

    Remember, the Lord is in control and everything John is going through He alread knows about. Remember "my times are in your hands". The Lord will be with you through this entire time. He's been with you; He won't abandon you nor leave you. In fact he has gone ahead of you and tells you not to be afraid or discouraged. (I paraphrased Deut 31:8).

    (The medical jargon doesn't bother me, but that's what I do all day so its like second nature to read about. )

    betty

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  9. Yes Krissy, thanks so much for the update.   So many people, like myself, care about you and John very much.  You're in our hearts...always.
    Love,
    nancy

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  10. sugarsweet0568/30/2006 12:50 AM

    So glad to hear an update. Was hoping for better news, but as long as there is life there is hope.
    Put your worries & cares in Gods Hands, He knows the future. He will help you both through it, what ever it may be. Just believe & have faith, & know that God will be there for you.
    We have hope that John will be getting better, but if that's not in the eternal plan, know that a Heavenly Home awaits.
    Please email me if you need to talk, or a shoulder to cry on. You are both going through so much right now, if I can be here for you...please allow me to be.
    Blessings, hugs, & love...
    Sugar

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  11. Hello Krissy .... I am sorry to hear that you and John are going through all this.  Know that when I visit my little chapel after Mass, I will include you both in my special intentions.  Sending good wishes your way.  Tina

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  12. Krissy Thanks for the update. It's very well written and easy to understand. We are pulling and praying for John and you.  I wish I had some words of wisdom, but I'm not much of a writer...just know we care.
    Big hugs and prayers.
    Barb  

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  13. rebuketheworld8/30/2006 3:15 AM

    Krissy, you and John are amazing. Its just a love story that continues to triumph. I thinks its so sweet that he wants you by his side and you want to be there.  I will keep you guys in prayer but if John would consider something I think he should try this product called Ambrosia. I dont sell it but its so good for the immune system its worth trying. I feel like a commercial but I mean it from the depths of sincerity. I wrote and article on this but instead I sent you a link. It helps restore the cells receptors to fight off disease and its been proven, yes proven to work.  Ok, dont want to sound over the top. Your blog continues to inspire me. Sincerely, Raven



    http://www.mannapages.com/sharethegift/PRDAdvancedAmbrotose.asp?sMainMenu=ShopNow&sMain2Menu=Products&sSubMenu=Products&sSubMenuItem=OptimalHealth&sSubMenu2Item=PRDAdvancedAmbrotose.asp&sSubMenu3Item=na&UN=shopnow

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  14. You ARE loved, Krissy! You and John are in my prayers for a full recovery and strength and grace to get thru the current crisis. One day at a time, all in Christ!

    Lots of love and prayers,
    Georgette GETTENM

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  15. Oh sweety, stay strong, your strength is felt by John, I'm sure of that.
    Sending healing prayers for John. May God be with him and Bless him
    Hugs,
    Ellen

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  16. nightmaremom8/30/2006 7:11 AM

    Krissy sending you and John strength and good wishes.  You both are in my thoughts daily!  Love ya
    d

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  17. Im new to your journal. I pray for you to both have strength throughout all of this.  I'm so sorry you are going through all of this.
    Pamela

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  18. I am honestly surprised you two aren't floating in air. You have so many people praying for you two that the power has to be felt. People that didn't know you two exhisted have come forward and are reading your journal, praying and giving blood. A friend of mine who has never heard of AOL J-Land gave blood because I asked. They told be to tell you he is praying for you. THAT is power. Tammy

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  19. I'm still praying for you both and sending good wishes and thoughts your way.

    Hugs and Love, Angela

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  20. Please lord help John to recover and not need to be on dialasys for his whole lifetime, and please help them cure John so that he can go home with Krissy and live a happy healthy life.  amen
    noelle

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  21. Thinking of you...
    Judith

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  22. jlocorriere058/30/2006 10:33 AM

    Thanks for the update, I'm still praying for you both. Take care. Jeannette xx  

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  23. Thinking of you both and sending good healing vibes your way. Wanted to donate blood but can't because of my own health problems. God Bless you both.

    Love, Lahoma

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  24. So good to hear from you!  Let's h ope they are making progress...please tellhim I think of him everyday.  I am thinking of you, too, Krissy, and wishing I could be there with you to hold YOUR hand...Love you both...Jae

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  25. hugsdoodlewacky8/30/2006 12:52 PM

    ((((((((((((((((((KRISSY))))))))))))))))))))))I think you are being so brave for yourself and John,I know its hard for you,and know you love John so much,you would do it all over again.You are so brave.I know alot of times,you want to cry so much.I am glad someone is there taking the time to talk with you,to let it all out.I am praying always.

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  26. Krissy and John,

    I love you both, lots and lots and lots!

    And always I am praying for you both and have you in my heart!

    Katie

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  27. Hi Krissy,
    Good to hear from you directly. You're doing great, and yes, it's very hard, but things are still moving forward. Give it the few extra days to see what the result of the IV-IG are. Indeed, chemotherapy is an option. Hope it doesn't have to come to that, you probably know how hard that is.
    Meanwhile, still thinking of you both and still hoping for a positive outcome.

    Keep smiling.
    Guido

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  28. It`s lovely to hear from you again,Krissy, Thank you for taking the time to update us at such a difficult time.  I wish John all the very best and I`ll keep you both in my prayers.

    Hugs

    Sandra xxxx

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  29. hugs , love and prayers!
    Becky

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  30. sazzylilsmartazz8/30/2006 6:38 PM

    Good to hear from you Krissy and keep moving forward.
    Hugs,
    Dianna

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  31. Hang in there and God bless

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  32. you've been in my prayers.  your faith will see you through...God is good!

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  33. you've been in my prayers.  your faith will see you through...God is good!

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  34. you've been in my prayers.  your faith will see you through...God is good!

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  35. you've been in my prayers.  your faith will see you through...God is good!

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  36.     You are in my prayers as well. Take care of yourself, and have faith.
    Jude
    http://journals.aol.com/jmorancoyle/MyWay

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  37. Hang in there!  Sending prayers!
    Hugs,
    Gina
    http://journals.aol.com/motoxmom72/GinasWeigtLossJourney  

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  38. Hugs...I know it has been hard on you. Prayers too...

    Brenda

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  39. quartrlyfecrysis8/31/2006 7:55 AM

    My thoughts and prayers remain with you both~
    you two take care~
    ~Bernadette

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  40. debbiewebb44658/31/2006 10:25 AM

    Still praying for you both and thinking of you.
    Hugs and love Debbie ~xxx~
    http://journals.aol.com/debbiewebb4465/TheLifeTimesofanEssexGirl

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  41. Hi Krissy,
               I have just read your journal for the first time and I was very touched by your love for John which shone through from your writings like a beacon or a lighthouse shining out to bring john to a safe harbour.
             I so admire your courage and the ability to see 'positives' in a situation which most people would find impossible to see.
             John is a very lucky man to have a stalwart such as yourself by his side.
    I will sign off now by saying that, although I am a non-believer, my thoughts go out to you from " across the water "
             
    May your God be with you always and take care of you

    htmml://journals.aol.co.uk/bigalf42/Anythinggoes/    
             

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  42. Your entries could never be too long, Krissy.  Thank you for bringing us into your world.  Prayers are coming... I wish I could donate blood, but with my RA and the meds I am on, I can't.  I am happy that there are folks out there doing it!!!  

    Maybe you could read, or knit or crochet... I always love reading... brings me to new worlds...

    I am sending more prayers and love to surround you and John.  May God's healing love bring you home soon, together.

    be well,
    Dawn

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  43. randlprysock8/31/2006 3:14 PM

    Dear Krissy,
    Hang in there and it's okay to cry.  Hugs and so much love to you and John and prayers too.  I know God never gives us more than we can bare.
    Lisa

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  44. firestormkids048/31/2006 6:44 PM

    Hi love.  I also took a few days off the computer, although I looked for you on AIM.  I am still praying for the two of you as is my family and it seems, all of J-Land.  I'll be on IM tonite.  Blessings, Penny

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  45. Thinking of you both, love from Cathy

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  46. Hi my love =)!!  I can't wait to see you on Monday!  I'm preparing everything for my visit.  I love you two sooooooooooooo much!!  Praying for you guys! xoxoxoxox
    John2 sends his love, too! xox
    http://journals.aol.com/valphish/ThereisaSeason

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  47. Dropping by to say hi and to let you know you both are being kept in my spcial thoughts and prayers.  Hang in there dears....we care.....Arlene (AJ)

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  48. love2sing20079/02/2006 8:31 PM

    You're situation is so touching.  I can't help but feel your emotions, but especially your love.  You're strength is an inspiration to me.  I love you both so much!  
    God is Watching.
    Kellen

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  49. My dear sweet friend my heart hurts for you. To see the one you love suffer like John is doing is so hard on you so let the tears fall.  I cry as I type this because You both have been through so much.  My prayers and thoughts are of you everyday.  God moves in mysterious ways. The power of all our J-land prayers are sure to help.  Love you both so much.         Love Myke

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  50. Krissy,I just wanted to say you are such a special, special, person. Sorry I haven't been able to "be around" as much as usual, especially at this crucial period; but know you understand why - and that's why you are the best friend in the world to me. Give John a great big hug from me. For you my friend, I send all the love and good wishes, in this big wide world, straight from my heart. If you get time to read this and can find the energy, please email your recent telephone number, would love to hear your voice again. If you are too exhausted, don't worry I won't be offended, I understand.
    Lots and lots of love from little old England and your crazy English mate.
    Sylvia xxxxxx

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