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