Learning to flush the lumens

Happy Valentine's Day!  Here it is, early morning, and for some reason I can't sleep, so I decided to come out in the living room and do an entry.  I love early mornings when it is still quiet. 

So John is still doing well.  So well that the Physician's Assistant has said that he should start coming to 'day hospital' every other day now, starting on Wednesday!  That will give us a day of rest in between the days we will have to go to the hospital.  How nice.  After my chores are done for that day I will get to rest!  And John can rest.  He will like that.  We are also going to start going to go for little walks each day, because the nurses suggested that John do that.  

One thing that is interesting about John going every other day is that I will be flushing off John's lines when he is not in the hospital that day.  This will be for as long as he has the chest port in.  I have heard that some people have their chest ports in for a year!  Anyway, yesterday was the first time I did it by myself.  Well, John and I did it together, back at Hope Lodge.  I was kind of proud of myself.  It is a very simple thing to most, but kind of daunting to me, kind of scary.

In the chest port there are two lines hanging down.  At the bottom of each one is something called a lumen.  These lumens must be kept sterile.  They also must be kept clamped so the blood flow goes back to the heart.  They must be flushed with saline and heprin (I have no idea if I spelled that right) so that no blood clots form.  After they are flushed, they must be reclamped.  The saline and heprin have to be pushed through with these syringe type things.  

If you want to get a little bit of a picture, the chest port has already been surgically implanted into John.  And to stay in place it has stitches around it.  Then the lines come hanging out of the chest port.  They are tubes.  At the ends of the tubes are the lumens.  One is red and one is white.  They are used to draw blood, oradd fluids.  Their purpose is so that there is easy access to the patient, and so the patient doesn't have to get stuck hundreds of times with needles, but just gets treatment through the central line (chest port). 

Anyway, I felt very nurselike while practicing flushing out the lumen yesterday at day hospital.  Then the nurse gave us a little supplies to take to Hope Lodge to practice.  I practiced last night.  You know, John remembered more than I did, lol.  But I called 'Critical Care' yesterday, told them John would be going every other day soon, and they said they would be out on Wednesday to show me again how to do the flushing of the line, and to bring me supplies.  After they show me how to do it, then they are going to watch me do it until I get real comfortable with doing it.  I am real glad I have 'Critical Care'.  'Critical Care' is a service that comes to your home and helps you out with nurses, supplies, etc.  It is paid for by your insurance company. 

So in other news, today is the day John will get the results of the mixed chimerism test.  We are both waiting in anticipation to hear the results.  It will show how much he has engrafted.  That means they are hoping that 90% of the stem cells would be the donor's instead of his.  They did say it was still very early after the transplant and it would be okay if it was not 90% at this stage yet.  

So that's about it.  John and I are both doing well.  Today we are going to have a nice Valentine's Day.  A simple one.  We don't have presents for each other, but we are going to have a pork chop dinner together, with a baked potato and sour cream, and spinach.  Oh, and I got a chocolate cake!  Gotta have chocolate!

Well gotta run, I gotta get ready for Day Hospital with John, everyone have a nice Valentine's Day, and love one another,  Krissy  :) 

John is doing a lot better!

Hi!  Here to say that John is doing oh so much better.  One of the reasons is a little pill called Cellcept that John has been taking .  It fights off Graft Verses Host Disease.  What is GVHD?  It is when the donor cells see your body as an intruder, and they attack it.  I just asked John, and that is the definition he gave me.

So John has been going to "day hospital" each day.  There he has been getting an antibiotic called Vancomycin.  That helps tremendously too.  It will prevent him from getting any infections, or from getting his other infection back.  At first the hospital was going to have me administer the IV myself to John at Hope Lodge (each day until the fourteenth), but they changed their mind, thank God.  They were going to send somebody from "Critical Care" to come to Hope Lodge to show me how to do it.  In the end they decided to do it at day hospital instead.  Boy am I glad for that!  I am NOT a nurse.  At day hospital they also do a lot of other things, and we get out some time in the afternoon.  It is not too bad.  We are out of there usually at the latest by 3 PM, and we have the rest of the day free.

John has been getting stronger everyday.  There has been an occassional day where he was so tired I have had to push him in a wheelchair at the hospital, but there have been others where he is able to walk around the hospital, and all around that day!  Today was one of those good days.  He did very well!  He didn't even sleep all day, he was out of bed part of the day.  He is so strong.

John started losing his hair yesterday.  Or was it the day before.  We had shaved him bald in anticipation of it falling out before he came to Hershey, but it had already grown back, as it grows fast.  We thought he was going to keep it.  Then 21 days after chemo started, it just started to fall out allover his pillow.  So, because it was making such a mess, and was only there in patches , we got out the electric razor, and once again made him a baldie.  I will have some pics to add later on.  I can't add them yet, because I can't put them on this computer, but I will do it on mine when I get home.  

Home.  Someday we will get home.  My real home.  Where I can sleep in my own bed.  And see my kitty.  And my Dad and Mom and Valerie.

So what's been going on with me?  I have been alright.  Some days are easier than others.  A few days ago I felt a little overwhelmed.  A psychiatrist that was checking in on John at day hospital told me I needed to take a "caregiver's break" and asked me who I had reserved to fill in for me.  I just about burst into laughter.  I told him "no one".  Who would I get to relieve me?  Val has had a chest infection or something and there was no one else to take my place in taking care of John.  So Dr. Neuri told me not to worry, that I would make it, to just hang in there. 

The next day I was able to pull myself together and am now doing just fine.  As a matter of fact, John and I are having some fun when we get back from day hospital.  Days are not as long as when we were at the regular hospital.  We can come back to Hope Lodge and rest.  Yes, I am responsible totally for his care at Hope Lodge, with no nurses to help, but he is doing so much better.  So at night we just rest a lot.  And we have been watching the Olympics.  And just laying around, lol.  Don't get me wrong, there are a lot of chores to do, but I am making sure I am pacing myself.

Well, I gotta run now.  John says "Hi" to everyone, and thanks for the cards.  Love ya,  Krissy :) 

John is in the hospital

Hello.  Sorry it has been so long.  It has been crazy and I haven't been able to update.  And I still can only give a short one now, because I have to run back to my bedroom in case John or the hospital calls, in case John needs me.  He is having a rough time.  He is in the hospital now.  He has been in there since Monday, January 30th.  That is why I haven't made an entry since Sunday the 29th.  But it is a long story.  I can't tell it now, so I am going to get off here and get back by the phone in my bedroom.  I am at Hope Lodge right now.  I was at the hospital since 5:30 in the morning this morning because John needed me all day.  He only had twenty minutes of sleep the night before.  I will explain more when I can get on here tomorrow.  John has had high fevers, infections, graft verses host disease, severe cramps, etc this past week.  Okay, got to run, Krissy. 

Ups and Downs

Wow, what a difference a day makes.  When I called John up Saturday morning, the day after the transplant, he told me he had showered and eaten.  His voice sounded so energized and full of life.  He sounded almost like a different person than the day before.  I rushed over to the hospital, because he said the doctor would be in shortly to talk with us.  I was very surprised when I walked in to see him sitting up in the recliner reading a newspaper!  Yes, they said he would be weak and resting for several months, but he was doing so much better than the day before. 

I looked at the chart to check out his counts (his labwork).  His white blood count (WBC) was only 0.3.  John said the nurse had told him he was "severely neutropenic".  She also said the white cell count would fall even lower over the next few days.  Then it will probably start coming up in 10 days to 2 weeks.  

Being severely neutropenic means John can catch an infection at any time.  That is why he has to wear the mask all the time, except in the day hospital.  The nurses ended up telling him he ought to wear the mask at Hope Lodge also, until his white count comes up, which should be about two weeks.  

Anyway, John was doing so fantastic, that they discharged him from the hospital on Saturday!  He was able to leave, and he had lots of energy and a lot of color to his face.  They almost didn't discharge him, because of an insurance issue (where the insurance co. is denying him two meds that they promised they would pay), but the docs decided to let John out, and try to deal with the med/insurance issue on Monday.  I hope it gets dealt with, or John might be readmitted to the hospital on Monday again, because he won't have his medication.  

Now that was the up day.  Today (Sunday) was the down day.  John woke up exhausted.  The color in his face was gone and he was extremely fatigued.  We went to "day hospital" and they did some labwork.  The found out his WBC was 0.2.  His red blood cell count was pretty low, and his platelets were extremely low.  So he had to have a platelet transfusion.

He was concerned about having the transfusion because he thought he would have the shaking reaction again but they gave him a large dose of benadryl, and he breezed through his first ever transfusion.

We were at day hospital from 10 am till 2:20  pm.  When he got back to Hope Lodge, he ate a peanut butter and jelly sandwich and some fruit cocktail.  Then he went back to bed just about for the rest of the day, except to occasionally watch TV.  I got him up to take his meds occasionally and take his temp (which must be done four times a day).  And at 6 PM I tried to make him eat but he refused.  So I made him a milk shake with Ensure in it.  I am sneaky.  To get him nutrients I mixed Ensure in with the ice cream!  And blended it up.  He loved it.  Not that sneaky, I told him what I did, lol, before he drank it.  But that is all he would have for dinner.  He refused to eat.  The doctor says that if he does not eat enough he will have to go on a glucose IV instead of eating.

How am I doing?  I am having little spasms in my legs from sitting too long in the hospital rooms.  I can't go too far for walks because I can't leave his side.  I am afraid that my legs will spasm into charley horses any day now, which is SO painful, and has happened before.  I just don't want it to happen while I am driving, and wreck or something.  This is something silly to pray for, but please pray for my legs.  Thanks.

How else am I doing?  Holding up great.  Doing a lot of work for John. And emotionally fine.  It is nice to have him home from the hospital so we can have time together.   

Well, I am extremely tired now.  And John and I have to get up at 6:30 am to be at "day hospital" on time   tomorrow.  So I had better get off.  I love each of you. 

Krissy :)

The transplant took place

Yesterday the transplant took place from 11:45 till 1:45 am.  Dr. Claxton gave John two bags of stem cells.  The first bag took one hour.  Then he had a fifteen minute break, and the second bag took 45 minutes.

The reason why he had a 15 minute break in between is because he had a reaction when the first bag of stem cells were going in.  It is something called "flushing".  It is when you turn very cold and you start to shiver.  It was very hard to watch him shake so violently.  I mean he shook so violently, like he was having a seizure it looked like.  The doctor and nurse looked concerned at points.  He shook more violently and then the nurse gave him a bag of demarol to make him stop shaking.  Awhile after the first bag of cells went in, the shaking stopped.  Poor John, he said that he had strained his muscles.  He had strained the muscles in his back, shoulders, legs and arms.

The second bag went in very uneventful. 

When done John suddenly felt EXTREMELY wiped out.  He said he felt like he had no blood left in him.  Like they had drained all the blood out of him.  This of course is par for the course; he should be extremely tired for six to nine months at least.  After a little while he said he felt some better though.

I am making this sound somewhat dreary.  They said he is doing excellently.  They may even release John from the hospital this weekend and just have him go to day hospital everyday.  He will just go to day hospital every morning (probably 9 am till sometime around 1 pm) and then be released to come back to Hope Lodge.  They will be checking out everything on him when he goes to the hospital, doing all kinds of tests.  And then he will come back to Hope Lodge everyday.  Then he will get back in bed.  He will be doing this for months.  Just day hospital and bed.  But the staff said he has to come to the dining room to eat because the bedrooms are sterile.  They said if he can't make it to the dining room, then he belongs back in the hospital.  So it will be hospital, bed, and dining room for months, that isit.  And whenever he leaves Hope Lodge or the hospital he has to put on a mask.  He doesn't have to wear the mask in the hospital or Hope Lodge though.  But we are debating whether or not he should wear a mask at Hope Lodge.  Because there are a lot of people who cough a lot here.

Let's see.  What else.  The nurse told John he was blood type A positive, but after the transplant would be O positive.  You take on the donor's blood type!  How about that!  

Well, that is about it.  How am I doing?  I think I held up exceptionally during the transplant.  I was really there for him.  I stayed there all day to be with him, and some of the night.  Then he told me to come back to Hope Lodge and get some sleep.  

I feel pretty good.  On the other hand, I feel like crying, but tears won't come.  It is hard to see someone so healthy be made sick.  I know he needed to have this done to stay alive, but it is hard to see someone who looked so healthy be made sick, so he can become well again.  I am doing well, but am kind of numb, and my Sissy Val said tears will probably come in a few days.  She said it will be normal, because I watched somebody I love, my husband, hurting.  

I am grateful he had the transplant though, praise God he has this chance at life. 

Things are going to be just fine, there will just be a long road of recovery ahead from John.  But he is tough and a fighter and a trooper.  With a great positive attitude.

Thank you all for your prayers, and your words of comfort, and your cards.  They mean everything to me.

Love, Krissy :)        

Transplant is tomorrow!

What a difference a day makes.  Today I pulled it together and was fine.  I was really there for John.  I know the transplant is tomorrow and I need to be okay for him.  So I am.

I came into John's hospital room this morning and found him in bed.  He was really weakened today.  That is because his white blood count is only 0.3.  That is what his chart read.  It also read that his red counts were low, but not quite as low to require a blood transfusion. 

At about 3:30 Dr. Drebik came in to talk to John and me.  He said it was normal for John to feel wiped out and be lying down, and that he was still doing well.  He also explained to John that after the transplant, when John's immune system first improves, it will be John's cells that will be there, but then the donor's cells will take over by two months. 

After the doctor left I took some pictures of John.

Then the nurse came in and explained John's transplant that he will have tomorrow.  She told me to be in at 8 or 9 in the morning so I will be ready when the transplant will take place.  It will be some time in the morning.  They will actually let me be there!  It will take about one hour.  The cells will arrive tonight by plane .  They will get here tomorrow at the latest if the flight is delayed.  During the transplant we will all wear masks but John.  After the transplant, when John is finally discharged from the hospital, he will have to wear a mask all the time (except when he is in day hospital). 

During the transplant the stem cells will drip from a bag hung from the pole.  That is how most transplants are done nowadays, instead of injecting the marrow into the bones.  The stem cells will merely drip from a bag hung from the pole, down the tube, and into his chest port, and into his veins.  Somehow, the stem cells just know where to go!  That is what doctor Claxton tells us.  Dr. Claxton will be there the whole time, making sure everything goes smoothly.

How is John doing?  Remarkably well.  He is taking one moment at a time.  A little concerned about getting an infection, but ok.  A little sentimental about life.  But I think that is normal.

How am I doing?  Better than I thought I would be.  But I love John so much I didn't want to leave his hospital bedside tonight.  I made him promise that if he needed me tonight, or wanted me, to call me, and I would come back to the hospital and be by his side.  He promised, so I left.  I love him so much.  

Bye for now, Gotta get some sleep, tomorrow is the big day and things will never be the same, Krissy. 

  

John's hospital stay

Wow.  It's been awhile since I did an update.  Of course a lot of my time is consumed with being with John at the hospital, and I have not had time to do entries as much as I had wanted.  Here is a synopsis of how things have been since John entered the hospital.

Friday - John was admitted to the hospital.  He was started on chemo.  Two different kinds.  And some immunosuppressant drugs.  If I understand correctly, these are to kill his diseased cells, so when the new stem cells are introduced (when he receives his transplant), eventually he will become disease free.  Something like that.

Saturday - John felt sick today.  Very nauseous.  Headaches.  But he was still a real trooper.  He sat up in his chair all day, and he also went for walks up and down the unit hall when he was stronger in the morning.  He insisted on wearing his jeans and shirt and stayed dressed instead of wearing a hospital gown or pjs.  He continued his chemo today.  

Sunday - John felt a lot better today.  So much so that he helped the nurse decorate the unit for Valentine's Day, lol.  She had him out of the room and up and decorating!  He hung red hearts and other decorations all around!  He was quite the creative one.  He continued his chemo today.

Monday - John looked pretty weak, but his attitude continued to be great.  He had chemo again.  I hated to see him so weak.  

Tuesday - John continued chemo today.  He was also attached to a pole.  He was hooked up from the pole to his chest.  The pole has a line (tubing) that runs down it and goes into the chest port in his chest.  He has about four bottles of liquids that are dripping into his chest.  He has saline solution (or some kind of salt substance, lol) and he has immunosuppresant drugs running through the tubing into his chest port.  On Tuesday they hooked him up to the pole 24 hours a day until he leaves the hospital.  

John's hair is growing back at an extremely quick rate!  We made a joke about how he could donate his hair to the Hair Club For Men!

John was 248 lbs. when he entered the hospital.  On Tuesday he weighed 231.  That is a loss of 17 lbs. if my math is correct.  Sheesh.  They told him eat like crazy for nourishment, or he will have to go without regular food, and get hooked up to a glucose IV.  He was starting to have trouble eating a lot of food, because he says the food tastes yucky and sometimes bitter (this is a common side effect of chemo).

John got an ulcer on his tongue and a sore throat.  Sores on your tongue and sore throats (and even sores in your throat) are common for high doses of chemotherapy.  Hopefully it won't get worse.

The psychiatrist came and said John is doing great mentally.  His attitude is so good.  I am so proud of him.

Today they put up a chart on John's labs.  It showed the labwork (blood counts) that they had drawn on him all week.  One of the counts was his white blood count.  I sat there shocked when I saw it.  Normal white blood count is something like 4.8.  His was 0.6.  That is almost 0.  They told him they wanted to get him down to 0.1 or 0 I think.  That is why they are giving him the chemo and suppressing his bone marrow.  It is killing his disease.  I knew it was going to happen, but it is a shocker when you see it happen to your loved one.  It will ultimately make himbetter, but they are making him SO weak.  

On Tuesday night after visiting John at the hospital I went back to the Hope Lodge and cried.  I feel like my body is breaking down some.  My muscles hurt.  It is so hard seeing him hooked up to that pole with the tubes going into his chest.  And with all those bottles of fluid hanging down.  I thought I was so strong, but I am not.  Crying was all I could do. 

Wednesday - Today John had general malaise.  He was finally very weakened by the chemo.  They did not make him have chemo today, and will not make him have it tomorrow (Thursday).  They are giving him two days off of chemo before the transplant on Friday.  Even though he was weak, he still showered, got dressed, sat up in his chair, watched TV, and chatted with me.  I am proud of him!  The doctor said he was still their star patient!  

I wish I could say I was the star caregiver today, but I was not.  I had to leave John early tonight, because I thought I was going to throw up.  I felt so nauseated while visiting him.  I also started to get a little down.  I was there in the hospital room, looking at him hooked up to the pole (and ill), and waves of nausea overcame me.  And waves of sadness.  I know this is the thing that will save his life, but it became too much for me to handle right then.  I asked him if he minded I go.  He said go ahead.  I feel extreme guilt about it but there is nothing else I could do.  I needed a change of scenery, and I couldn't get sick on their floor.  Yes, it was that bad.  Now, I must get a grip on myself, and fast.  Afterall, I need to be there for him for the next several months.  Am I normal, or am I insane?  

Bye, and sorry this was so long, all my love,

Krissy