John is not doing too bad

Hi.  Sorry it has taken awhile to get back.  Let me tell you what is going on.  And let me also say that I am sorry this journal has turned into a medical logue, and not much of anything else.  It used to be a lot more fun!  But it seems I don't have time to write much anymore except about what is going on with John's health.  Not that I don't want to write about my beloved.  But maybe in the next few days I will get a chance to do a few fun entries.  We shall see.    

So John and I arrived up here at Hershey Medical Center Thursday in the middle of the night.  I guess you could say it was really very early Friday morning.  We called the oncologist at Hershey Medical Center (the hospital) on Thursday night because John had a fever.  He said to come up to the hospital right away.  The reason John had to come in right away is because John's WBC is below 1 and his ANC is 0.  So he has virtually no immune system.  If you catch something when you have no immune system, it can kill you.  Because you have no capacity to fight it off.  So John had to get to the hospital right away, so they could find out what he had, and treat him.

Well, they started John on antibiotics immediately.  Good thing they did, because the cultures they took showed that John had two blood infections, both requiring antibiotics.  It appears that the antibiotics are taking effect, because John's fever is very minimal.  The antibiotic is keeping it down.  The doctors are doing further tests to pinpoint the exact kind of infections he has, to even better find out a more specific kind of antibiotic to fit John's needs.

The doctors are also trying to discover why John has a compromised immune system in the first place.  Why he doesn't have much white blood cells to fight off infection.  They are planning on doing a bone marrow biopsy (major ouchie for John!).  I think they will do that next week.  I am also wondering if the transplant is still working fully, or if something is wrong because of the low white blood count.  I imagine that if the transplant is not taking, then it will show up in the bone marrow biopsy.  Please, Jesus, don't let John go out of remission and get bone marrow cancer back.

John is still requiring blood.  But only two units (bags) once a week, twice a week at the most.  I asked the oncologist today if John was going to have to get two bags of blood every week for the rest of his life.  Because John lives at a very anemic level, and is always very close to needing blood.  His problem that he left the hospital for two weeks ago has not been resolved yet.  It is better, but not fixed.  The oncologist said, no, that John would continue to improve, and would not require blood like that for the rest of his life.  He said he would stop back and talk to us about it.  But he never did.  I did go back to Hope Lodge for a few hours though, so I might have missed him.  I am staying at Hope Lodge again, on Friday morning I got a place there.  But some nights I just stay over in the hospital room.  I think I will do that tonight.

So all in all, John could be doing a lot worse.  Yes, better, but yes, worse.  He doesn't seem to be completely weak.  Maybe that is because he had two bags of blood yesterday.  And his fever is down.  He stays in his room with the door closed so he doesn't catch anything.  he is allowed to leave the room, if he has a mask on.  So we went for a few walks in the hall today, and sat out near the nurse's station just to get a change of pace.  I believe he is doing well because he wasn't able to make it to the nurse's station for a whole month during his last hospital stay.  He is not nearly as weak this stay.  Of course, there is always the possibility of dying if your ANC is 0, but I am not going to think of that right now.  

Ok, so that's about it.  Hope to do that light hearted entry soon!

Love you all, Krissy :)

John is back in the hospital again

Ok, so here's the deal.  John and I are in Hershey right now.  I don't have time to explain, because the doctor is going to be in his room in a few minutes to check him out, and I have to be back downstairs in his room to be there for that.  But I just wanted to get on here and let you all know.  We arrived here at Hershey Medical Center last night.  Well, really around midnight.  I will get on later on today, try to anyway, and let you all know what is going on.

Love you all, Krissy

Grateful to be alive

Hi you all.  Tomorrow will be a week since John and I got back from the hospital.

Wow.  Now that we have had a little time to settle in, John and I are realizing how grateful we really are.

The home healthcare nurse came this morning.  She told John how sick he really had been while in the hospital.  Truth is he almost died.  But we are not focusing on that now.  We are focusing on the fact that John is alive!

John is helping me write this right now.  He says "I am grateful to be alive.  I am grateful for Krissy.  I am grateful to the doctors, and of course I am grateful to God."  I think it is neat that with all the complications he has had he is not bitter, and is not asking, "why me?".  He has never asked that.  He has been in the hospital or day hospital for about six months out of the past eight months, and has never complained that it is not fair.

We don't take the little things for granted.  We are so excited to be home.  The other day we were outside, and John remarked how good and how warm the sun felt on his skin.  When he was in the hospital for a month, he never felt the sunlight.  He never was even able to make it to the lobby until the end of his stay.  We also enjoyed the fall colors on the trees this week.  I enjoyed being outdoors.  One morning this week I walked barefoot in the grass!  It was great! 

John has been enjoying the food at home!  So have I!  There is also nothing like being with Mr. Michael The Maine Coone Cat.  He curled up last night and slept with his head on John's arm.  I think he knows something is up with John, and that John's situation is still somewhat delicate. 

John required blood on Weds.  He still may need blood every two to five days.  We have no idea for how long.  But whatever happens, we will just take it one day at a time, and enjoy each day.

I hope you all are enjoying your days also, and looking for the bright side, even when life is hard.  And I hope you all are enjoying and taking care of each other.  For what else do we have, except for God and each other?  And by the way, John and I thank you all for being here for us during our horrible ordeal.  We wouldn't have been able to make it without you.  I don't know what else to say.  Those of you who were here for us know what I am talking about.  Your love and kindness has exceded any that I have experienced in my life.  I shall never forget it.  You all are the best.

Remember, keep your chin up and keep staying positive.  Life is worth it!

Krissy :)  with a little help from John! :)   

We are home!

Hi!  We are home and it is glorious!  To be in our own bed, to see our kitty, to eat our own food, LOL.  But I am afraid I overdid it.  I have had to do everything without the nurses in the hospital.  There will be a homehealthcare nurse, but she doesn't come till tomorrow.  And she won't be doing much anyway.  So I have had to do just about everything myself.  So I have had a hard time keeping up with the pace.  What I did was pull the muscles in my legs.  Now they are so stiff that they are spasming.  So I am off to the ER to get a muscle relaxant or something.  Perhaps I am a baby, but they are hurting so severely, and keep starting to painfully go into charlie horses.  I can't go into charlie horses tonight.  I can't really bare that.  I have done that before and that's very painful.

I also have cellulitis in my legs.  They are so swollen and red.  They are extremely large.  Like giant stuffed sausages, LOL.  My feet are that way too!  I got the cellulitis in Hershey.  I had to go to the ER when I was in Hershey.  They wanted me to get an appointment at my family doctor when I got back home.  I called today and they told me to come in next Tuesday.  I can't wait that long.  I am going to the ER tonight so I can be seen for that also.

I will write more when I get back.  I want to give you some happy news about how great it is to be back home!  It really is great!  Even though I am tired, I praise God we are here.  It has been such a blessing for John and I to be home.  John is really flourishing at home.  He is doing so well.  By the way, John has been able to be OFF dialysis!  I will tell you more about that later.  He is a real fighter.  He is still getting blood about every five days, but maybe that will end soon.  Who knows.  He will be getting blood tomorrow morning.  Probably two units (bags).  He will get it at our local hospital.  Okay, I must go.  A taxi is going to take us to the local Emergency Room (ER).

Love you all lots, and sorry if I have been so busy that I have not been able to post sooner, or thank those who have written or sent us anything.  My apologies.  I love you all.  So does John.

Krissy :) 

We are going HOME Saturday!

Hi you all.  It has been awhile since I have written, but as usual I have been sooo busy.  I have been trying to work out solutions with the social worker on different issues so John could come home at the end of this week.  For awhile the doctors were going back and forth saying he would stay in Hershey for another two weeks, then changing their minds on it, and going back and forth, back and forth.  Well, the final decision is that John will be discharged from the hospital on Friday night after he receives chemo.  We will then return home on Saturday.  We will rest on Sunday, and then on Monday the home nurse will come and John will begin going to his appointments in our home town.  

The social worker has everything worked out except for transportation.  I am supposed to work on transportation at John's hospital bedside today.  I hope I have some luck (I mean good fortune) in this area.  Not only does John need to get to his cancer appointments, but he needs to get to all of his doctor's appointments.  And now that I think about it, I have to get to mine also.  John has always driven 99% of the time in the past, due to my road narcolepsy or sleep apnea or whatever it is.  Now I have no idea how I will get to my appointments.  

Having said all that, this is a red letter day that John is getting out of the hospital and it will be good to get home.  Even dealing with treatment from home will be fine, b/c we will be comfortable there.  I am so glad John made it through everything and that he is alive!  Weak yes, but very much alive!

Okay, I must run everyone.  I hope everyone is doing well.  I love you all.

Krissy :)

John may be coming home soon

Good morning.  This will probably be short (yeah, right, LOL) because I have to be over to the hospital before 6 AM to make sure John gets his cereal, juice and milk.  That's in case they take him for his four hours of dialysis at six thirty. 

So here is the deal with John.  They are talking about
discharging him at the end of this week.  I have very mixed emotions about this.  They will be sending us back home.  John will probably need blood two times a week (that's four bags of blood a week) and dialysis three times a week.  That's five days a week where he will have to travel outside of the home to get blood products or dialyzed.  I am a nondriver right now due to road narcolepsy and we have no idea how he will get to his appointments.  

One good thing is the insurance should cover a home nurse for John.  I think he will require daily blood draws.  She will also have to change bandages on two ports (one that he is going to have put in for blood draws - he already had it but it became infected and came out yesterday - and also a permaport - John is going to get a permaport if he continues dialysis).  We will need a company that supplies us with bandages and flushes.  I am making the NURSE do the bandages.  They do not even allow the nurses to touch the bandages here in the hospital, it has to be a special IV team.  So I will tell the insurance company that I just WON'T do it.  I will however however be willing to flush the ports.  He also will probably need Vancomyacin again due to an infection.  I am willing to administer that.  So you see, there are some things I am willing to do, and some not.

In case I have lost you, I am writing all this to say that there are a lot of issues involved.  And I have not even begun to cover them all here.  The hemotologists/oncologists were going to release Johnw/o dealing with them all (I think).  I called the social worker/nurse coordinator yesterday and told her that John would probably get released this week, and what he needed.  I had a three page list, LOL.  I told her what his insurance did and did not cover.  She had NO idea.  She told me the other day she was new at her job.  She had some facts wrong!  At any rate, we made some progress.  She has to set up where John will receive dialysis, where he will get blood, and get a home nurse for him, and get bandage supplies and flushes.  That is only minimum of what she has to do.  I told her she must look into transportation.

Ok, this has probably gotten too boring and long, and if you have skipped and skimmed that is ok.  Suffice it to say, I was doing a lot of the social worker's job.  And if the hospital doesn't get on the ball and set things up, I am not willing to have John get out yet. 

John walked by himself, totally by himself, for the first time yesterday.  He was exhausted, and had to get back in bed. and it was just a little down the hall.  But he did it.  He used a walker.  The social worker said she believed insurance would pay for a walker.  John stays about 90% of the time in bed and 10% sitting in the chair.  Please pray for him that he gets stronger!  Thank you! 

So that's about it.  Right now I want to thank all of you who care about John and me so much.  And for those of you who have helped me get through this recent situation, thank you (you know who you are).  I don't want to start listing everybody, for fear that I might leave somebody out!  But thank you for helping me have a clear head, and for suggestions for the social worker!  And thanks J-Land for being my rock!  Also thanks Daddeo and Sissy for being my rock also!

That's about it.  Sorry this was so technical,

Love you all,  Krissy :)

Mish-Mashof stuff

Today we pause and remember those who lost their lives on September 11, 2001.  The president has asked for a moment of silence, and that all flags be flown at half staff.  Today let us pause in silence, perhaps say a prayer, or even light a candle for those whom we have lost, and for their families.

I also wanted to take this time to let you know that my sister Val will be doing the Photo Scavenger Hunt and the Monday Morning Question for me for awhile, until I am able to do it again.  Her journal is: There is a Season   She will post both a Monday Morning Question and a topic for a Photo Scavenger Hunt this morning, so please stop by her journal!

Finally, I wanted to say that I will do an entry on John tonight, barring anything happenning.  I know I haven't done one in a few days.  I would do it now, but I have to finish a few things and get over to the hospital and make sure he gets an early breakfast.  Like at 6 AM.  Because very shortly after they take him to dialysis!  They used to take him at 8:30 AM but now they take him short after 6:00.  If I don't get there on time and get his food, he could be in dialysis without eating for four hours!  It is hard for him to eat in dialysis with the port in his neck!  Anyway, I will try to get back on tonight.  

Love you all lots, Krissy :)

John is getting better :)

Hi!  I hope everyone is doing well.  Gee, I haven't had a chance to read ya'lls' journals because I've been too busy. 

Things seem to finally be turning around here.  I can finally really breathe a sigh of relief.  I really don't believe John is going to die now, for the first time.  I wasn't sure before.  But now he finally seems to be responding to treatment for the Autoimmune Hemolytic Anemia.  The Hemotologist/Oncologist team told us yesterday.  And I believe it because John hasn't required as much blood in the past few days, and his lab numbers have been better.  Yay!  That doesn't mean he doesn't have a long way to go, but I know he will make it!  I just know it! 

The treatment that seems to be doing the trick is chemo that is called Rituxin.  He had a dose last night at 9:30 PM and he was done at 11:45 PM.  Why they did it that late I have no idea.  I stayed around because it has been known to have side effects.  I got home at midnight. 

This was John's third week of the chemo drug.  He could possibly need seven weeks of it.

This morning John is having dialysis.  I feel really bad for him.  He does not tolerate it well.  He shakes and shakes afterward.  He also has a feeling of general malaise, and a sort of feeling of disassociation.  He gets headaches and his chest hurts.  He explained these symptoms to the kidney specialist, and was told that perhaps they are running the machine the wrong amount of time.  Dialysis effects your body chemistry.  They said they would check his labs, and see if they would need to change the length of his dialysis.  John said he feels like his dialysis goes on fifteen minutes too long.

On days that John has dialysis, he is sick and very very weak for the rest of the day.  Today is going to be hard.  I had better get geared up and go over to the hospital to see how he is doing.  He is usually up by this time!  

By the way, John is having trouble walking.  I know I said I walked with him in the hallway the other day, but the physical therapist told me not to do that again.  She walked with him the past couple of days, and he started to fall over several times but she caught him.  But I am not worried, because he is getting stronger everyday.  He sits up in the chair in his room now a lot to build up his strength!  I know he will be able to walk soon!

Okay, it is off to the hospital!  Love you all lots.

Krissy :)

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 :)