No permaport operation for John!

Hi journal peoples!  Today was a good day!  There was no operation for a permanent port for dialysis for John, and there probably won't be one.  Strange what a day can do.  Perhaps not strange, as there are so many of you praying, after all!  

The kidney specialists decided not to put in the permaport because they did another type of test on John and decided that his kidneys were functioning better now.  They decided not to put in the port, and perhaps they wouldn't ever have to put in a permaport.  His kidneys can perhaps recover some day!  

Meanwhile, he is still going to dialysis at least four days a week.  Maybe it's five, I lose track.  They are trying to get it down to three days a week.  Uhhhmmm, can he have some more of you alls' prayers?  I know everybody is praying, but I mean specifically that the dialysis wouldn't be so hard on him.  He is having a really hard time on dialysis.  He feels real ill after dialysis.  He shakes a lot.  The doctors are trying to figure out why.  Maybe it has something to do with the balance of electrolytes they said, or the toxins.  He is also very tired after dialysis.  This is of course common.  But suffice it to say on dialysis day he feels pretty bad the whole day.  

Anyway, even though he felt yucky today after dialysis, I think we will call this a victory day. :)

Love you all for your support, prayer and love,

Krissy :)      

John is having pormaport surgery on Tuesday

Tomorrow (Tuesday) John is going to have an operation.  The kidney specialists decided John's kidney function isn't improving after all.  So tomorrow he is going to have a permaport put in for permanent dialysis.  This will make it so he no longer has to have the uncomfortable temporary line sticking out of his neck.  Instead, he will have a permanent port inserted into his body at the point of his jugular.  It won't be visible at the sight of the jugular.  It will come out of his chest.  It will be visible at that point.  It will have to be bandaged at his chest.  It will have two tubes that hang out at this place, that hang down to his stomach.  This may sound weird, but it is better than the two tubes that have been sticking up out of his neck like anteneas!  They were in a weird place, and constantly the bandage was coming off and the sight was getting bloody (sorry for being graphic).  Now that the permanent port will come out in a different place (on his chest), it shouldn't get bloody (I think).  But maybe I am wrong.  At least it should be more comfortable, is one of the reasons they are doing it.  Now that he is getting permanent dialysis.

Yes, you heard me right, permanent dialysis.  What a disappointment.  As in lifetime dialysis.  Technically though, things could turn around, and his kidneys could function again, and they could yank the permaport.  But they are not counting on it, so they are putting the permanent line in.  John is not giving up though, he is going to fight to get off permanent dialysis. 

Well, that's about it.  All I want to say.  Except yesterday was a very bad day, today was a very good day.  Everyday changes.  Strange.  He is still averaging about two bags of blood a day.  The hematologist/oncologist today said that he was not discouraged though.  He thinks the chemo and prednisone will work.  I am not quite sure where he is getting the numbers from as far as bags of blood go and lab numbers, but I must stay hopeful, as he is hopeful.

Okay, anyway, please pray for John.  Tomorrow will be a very hard day.  Hewill have surgery.  This might take a couple of hours.  He will get several hours (bags) of platelets so he won't bleed too much during surgery.  That could take about four hours.  He will have about four hours of dialysis, which leaves him very exhausted, and he has had complications the last two times he has had dialysis.  So he will have a long tiring day.

Please pray that he is okay during the surgery. Thanks and I love you all.

Krissy :)   

Trying a new treatment - chemo

I didn't realize it has been so long size I have made an entry.  Sorry.  There have been lots of reasons.  Computers at both the hospital and Hope Lodge have been down at different times.  One night I had to stay all night with John at the hospital while he got blood and chemo, making sure he didn't have a reaction while receiving either one.  Actually, I stayed the whole day, all night, and the next day.  Another reason I haven't done an entry in days is I have just been too dog tired.  I stay with John from about six in the morning till eight thirty at night, and when I get back to Hope Lodge, I am often too tired to do an entry.  Often I can't get on the computer during the day, because I can't leave John's side.  So if I don't get on at night, I don't write.

Okay, so here is what's going on.  The IVIg treatment didn't work.  The oncologist came in and told John and me yesterday.  He said they were going to try a treatment called Rituxin.  It is a chemo.  John is to get it for 4 to 7 weeks.  One day a week.  Actually, he has already gotten it twice, during weeks when he had IVIg.  So he is on the way to possible good health already.  The oncologist said it often takes three or four weeks to see if it is working.  

Right now John is still requiring about two bags of blood a day.  And he is still on dialysis.  On a good note, there is a possibility, the kidney doctors have told him, that he may not have to be on dialysis for the rest of his life!  Praise God for that. 

Another really exciting thing is that John was moved out of the Intermediate ICU into a regular room!  He is getting stronger, and is finally able to sit in a chair to eat his meals.  He also walked a little bit down the hallway yesterday for the first time in about two and a half weeks with the help of a physical therapist!  I was astounded as he was so much stronger than when he was in the Intermediate ICU.  And he is no longer hooked up to all those wires!  He is hooked up to machines at times, but it is so much better now!

Having said all that, the doctors all still puzzled as to why he is needing the two bags a day if he seems a lot better.  His platelets are also very low.  He may get platelets tomorrow.  And he had a bad experience with dialysis yesterday (Friday).  But I won't go into all of that right now.  Just pray that he won't have a bad experience again tomorrow (Sunday).  Thanks.

Okay.  So how have I been?  On a rollercoaster!  One day the doctors give me good news, the next day bad, the next day good, the next day, bad, then good - you get the idea.  But I do remain pretty steady through it all, because you have to.  And through it all I have been tremendously uplifted by you all in J-Land, with your comments, your entries to me in The John and Krissy J-Land Gazette (that's the journal Tammy created for  John and me!), and by the blood that those in J-Land are giving in John's name.  John and I are so moved by the blood given.  Oh, and I can't forget the snail mail we are getting!  How truly thoughtful of you all.  Our hearts are warmed, and we don't feel alone.

Well, I better go now, I was just falling asleep.

I love you all, Krissy :)