Friday, April 27, 2007

Narcolepsy AND Sleep Apnea!

I sat in the neurologist's office today and tried not to doze off.  Within a short time the neurologist walked in and announced I had both Narcolepsy AND Sleep Apnea.  I told him that was an impossibility as the nurse had told me earlier that the chart said I only had Narcolepsy.  Well, it turned out she read the chart wrong!  Drats!

The neurologist gave me samples for the Narcolepsy.  I will try the medication for three weeks to see if it works.  If not, the doctor will prescribe something else.

Meanwhile, in the morning I have to go for an MRI to make sure I never had a stroke and don't have a brain tumor.  That rules out those possibilities that can cause daytime sleepiness also.  He doesn't think these things are probable, but wants to make 100 percent sure. 

And finally, a week from Saturday I need to get another sleep test for Sleep Apnea, while wearing a CPAP machine and then a BiPAP machine.  It will be to see if one of these will help me.  If one does I will be using a machine every night.

Pill in the morning, machine at night.  Goody!  Goody!  At least I will start to feel better and not be so miserable!

Thanks to all of you who supported me through all of this while I was sleepy, and did not belittle my Narcolepsy as "fun little naps".  And to those of you who commented that this happens to you also, or a family member, please get checked.  It is a seriously debilitating thing.  Ask your doctor how you can go about getting a sleep study done.

Now on to John - I don't know if I mentioned this already, but it turns out his fevers actually were due to an infected PICC line, unlike they had originally thought.  Also, he was getting high fevers due to Graft Verses Host Disease.  Even though John's cancers are gone, some complications persist.  He just seems to get more than the average bone marrow transplant patient.  I am not complaining, it is just the way it is.  He is also SEVERELY neutropenic at this time.  He has been neutropenic since he was in the hospital this last time.  This means he has a severely compromised immune system, almost none at all.  We are not too worried, though, about him catching anything.  He has been neutropenic so many times before and he has stayed alive.  You can't worry all the time.  He just wears his mask and takes certain precautions.  On Monday Dr. Claxton is going to try to figure out why he is so neutropenic.

Yes, I said Monday, LOL.  We have to go back to Hershey on Sunday, Monday, and maybe Tuesday.  That's okay though, we are used to it.

Oh, good news!  After phone calls for about three days, I was finally able to get John the Renal Supplements he needs!  Praise God!  His insurance will pay for them, if I understand it correctly there shouldn't even be a copay.  John has lost 90 lbs. since the transplant, a lot of it in the past four months.  So I am glad he is finally getting the supplements!  :) 

Okay, this is getting entirely too long, but before I go, I wanted to say thank you to whoever sent John the Adagio Teas!  He loves them!  And well, I do too, LOL.  Thank you from the bottom of our hearts.  You sly thing you, you didn't send a card!

               Bye for now, and all my love, Krissy :)


Monday, April 23, 2007

monday morning question


How many emails do you have on your main account? 

Uhmmm, 402, LOL

Now Krissy wants to know what your honest answer is, LOL!

Wednesday, April 18, 2007

This past trip to the hospital

This will be a different kind of an entry.  I was encouraged by one of my very good JLand friends to be honest, and write about what REALLY happened while I was in Hershey this trip.  Not just John had a fever, etc, etc.  But she thought I should give you a glimpse of some of the things that went on in my day to day life as we went through our stay while John and I were in Hershey for his hospital treatment.  So here goes.

First thing that happened was that John had had high fevers for over a week.  The cancer clinic at the hospital called and told us to come down immediately, in less than the amount of time it would take to drive there!  We scrounged for a ride.  Remember, I have narcolepsy and can't drive.  This is an issue that always causes me some anxiety.  But we found a ride and threw some things in bags and headed for the cancer center at the hospital.

When we got there, John was an hour late for his appointment, because they made him get bloodwork for an hour.  This made me nervous as I did not know if he would be able to keep his appointment.  The woman who had called us on the phone stressed we must not be late.  But they did wait for him in the end.  While he was in the infusion room getting his hour's worth of bloodwork drawn, the nurses could not even get blood out of the white lumens, which they needed to, to culture them to see if they were infected.  Oh well.

Finally we were done and went back to sit in the waiting room.  All cell phones were to be turned off, but I had left mine on b/c I needed to talk to the director of Hope Lodge.  I had talked to one of the volunteer/managers earlier, and he had said that we did not have a room there for the night.  I was horrified, b/c we had arranged it a couple of weeks earlier.  We really didn't have enough money for more than two nights in a hotel, and I was wondering if John and I would be out on the street.  When the phone rang, I was in the waiting room, in a fit of narcolepsy and asleep.  The phone was ringing and ringing (of course it was supposed to be turned off).  John shook me awake.  I ran out into the hall.  Don't worry said the manager.  Charlie is old and doesn't know what he is doing.  You can have two weeks here.  I thanked the manager profusely.

Finally they called John to come back to see Dr. Claxton.  Of course his temp had dropped to 99, LOL, just b/c it was his turn to be seen.  In the doctor's office Dr. Claxton asked us to stay in town (at Hope Lodge), and he would try to get some issues resolved with John.  He said he could not get him a bed with a temp of 99 b/c there were not enough beds in the hospital open.

As we were leaving, one of Dr. Claxton's nurse's came running out saying that John needed more bloodwork, and saying what kind.  So we went back into the infusion room for something.  When it was over, I told the nurse John needed more bloodwork.  She argued with me, and got her supervisor, who also said I was wrong.  They were a little pushy towards me.  I finally said, look, Dr. Claxton said he needed it.  (I hate to be pushy, but i WILL fight for my husband.)  I said, there has to be a lab order around here somewhere, because Dr. Claxton is calling for more blood to be drawn, and it must be important.  Finally they found it, LOL, and drew two vials of blood.  I am laughing now, but it was nervewracking at the time, trying to convince them.

John sat shivering in the chair at this point getting his blood drawn.  They took his temp.  He had a pretty high fever.  Of course.  Dr. Claxton came in the room.  Of course nobody said anything to him.  I FIGHT for my husband.  I went up to him and told him what John's temp was.  I heard him asking a nurse if there were any beds open in the hospital, and she said absolutely not.  So that was the end of that.  

We went back to Hope Lodge.  That night John's fever got extremely high.  I called the night doctor at the hospital.  The hematology/oncology fellow on call.  He said, I will find a bed for John, and save it for him, and call you back when it is open.  At four thirty in the morning admissions called us up and we rushed over to the hospital

Now this is getting entirely too long, so I will only mention a few more things.  The purpose of this entry is to show you some of the things I go through, and have anxiety over while I am there. 

One issue is how to get rides to the hospital.  Remember I have narcolepsy, so I am not driving at all now, not even the short distance to the hospital.  It is short, but too long to walk.  It is not easy to get a ride back and forth.  I go through a lot of anxiety over that.  I can usually catch a van M-Fri, but I have to go at very particular times, and it is not even a guarantee, so I get very nervous sometimes.  On the weekends there is something called Security.  They take you sometimes, but say DO NOT DEPEND ON US.  They don't like to take you on a regular basis.  SOMETIMES they do anyway, but they will act really nasty towards you and complain.  My stomach can go into knots on the transportation issue alone.  And we are not to ask anybody at Hope Lodge to take us anywhere.  It is a rule there.

So having to go grocery shopping, or to get my meds filled is a nightmare.  I have anxiety fits over that one.  Not real ones.  I do trust the Lord, I really do, but this time I was under stress, more than other visits.  I guess I am just tired.  Fortunately, somebody at Hope Lodge overheard me mentioning something about my meds, and took me to the drug store, and grocery shopping and then to Hope Lodge and to the hospital!  Praise God for that.  I had food for the week, and didn't have to pay for the cafeteria.  I don't have enough money for that.  And John had food to eat when he got out of the hospital, although he didn't eat much of it.

Another problem was clean clothes.  I had to wear my clothes over and over again.  Yucky.  You can only wash during certain times at Hope Lodge.  I was at the hospital at least 12 hours a day, b/c I needed (no, wanted) to help John.  Help him wash up, help him go for walks, change his sheets, make up his bed,  make sure they were giving him allhis treatments (and hey, this is one of the better hospitals!).  

The hospital was hard.  I dealt with a mean doctor, one who wouldn't cooperate on filling meds at first.  She didn't want to write out some scripts for John.  He needed them.  She also was giving the main doctor some misinformation on John.  I corrected her.  I WILL fight for my husband.  Perhaps she did not like that she was corrected.  I did it in a very professional and sweet way, but I did it.  I think she may have felt it made her look stupid.  Tough.  She was kind of mean to us after that.  Not kind of mean.  Very, LOL.

Okay,  I have gone into enough.  I won't even go into what it is like to sit in a chair for hours upon hours in a hospital room when you are narcoleptic.  I fell asleep so many times it was not even funny.  I had to do a lot of activies to stay awake.  Like get up and walk around.

The final thing I want to say is I think they let John out too early.  Because they needed the hospital bed.  John is neutropenic.  His white blood cells and neutrophil count is too low.  We didn't find this out until he was discharged.  I called Mitzi and asked why John was still sick and weak after he was released.  She looked at his counts and told me why.  She said I must keep him very healthy, and must come back if he gets a fever of 100.5 or higher.  You can actually die from an infection from this.  Oh, that is my main stresser when John goes in the hospital!  Will he die this time?  Anyway, even though he no longer has the cancer, he can still get very sick from the complications.  Okay, now i am being VERY honest with you all. 

Okay, this has gotten entirely too long.  Hope it was okay I shared.  How did I do, Merry?

Love you all lots,  Krissy :)        

Monday, April 16, 2007

John was discharged!

John was discharged yesterday.  Thanks for all the prayers.  It turns out his problems was his PICC line (port) was infected.  They had to take it out.  I wonder if he will need another one.  One of the things he needed it for was to get his red blood cells, but I think he can get those through getting stuck.  He also needed it for Rituxin (chemo) when he needs the Hemolytic Anemia to behave.  Technically the chemo can be given another way, but it is not good to do so at all.  Then there is the issue of vanco (IV antibiotiotics) he gets sometimes, and the frequent blood draws for lab tests.  He just may end up getting another port.  That PICC Lince actually lasted six months before it got infected, which is almost unheard of!

Speaking of lasting six months, John got his first shower in six months a couple of days ago!  When they pulled the PICC Line he was able to shower!  Before that he could only wash up, because he was never allowed to get the PICC line wet at all, or he would develop an infection.  He said the shower felt so good!  

Anyway, they finally discharged John yesterday because his fevers stopped.  Of course when he got out last night his temperature was 99.8, but that is not that high.  But still something to keep an eye on.  In the hospital to keep his fever down he was given IV antibiotics.  At home he will get oral antibiotics.  

So now that John is out, we may get home today.  But I doubt it.  It is snowing back home, and there are 40 mile an hour winds.  I can hear the howling winds outside right now.  Our ride probably won't be able to get here through the high winds and snow.  I am not driving because of my narcolepsy.  If the snow is not too deep we will go home tomorrow.

I guess that is all I have to say, except that I am feeling pretty good.  Like wow, John's cancer is gone!  I didn't really have time to let it hit me, because he had a complication so quickly, but I am really thankful right now.  A nurse came in the rooma few days ago asking us after reading John's chart.  We said yes and she practically fell over.  She was so excited.  Then I realized how excited I should be, and not take it for granted.  Today I am very excited.  If there are a few complications along the way then so what.  Today I am very grateful!

Okay, I am getting off now.  John and I have a lot to do today.  We are going to the hospital to get some prescriptions filled.  Then we are going to see if he can get a certain supplemental drink for him.  We need to find out where it can be bought.  John has lost 85 lbs since the transplant.  The oncologist wanted him to lose weight, but that is too much weight.  Hopefully the nutritional renal drink will be a prescription drink, and then his insurance will pay for it.  I also need to clean up our room at Hope Lodge, and wash some clothes.  So I am off.

Love you all lots,  Krissy :)              

monday morning question w/o the graphic!

I sit here at Hope Lodge without my own computer, hence without my own documents/pictures.  So I don't have my Monday Morning Question graphic.  But I figured we would all survive anyway, and recognize this as the Monday Morning Question!  So here goes:

Turnips with butter, salt and pepper OR beef liver? 

My answer:  The turnips please.  I had them growing up and they were delicious! 

I have also had the beef liver.  A friend of mine made me a sandwich with a really big slab of beef liver.  It was too rich, and was gross!

Which is your delicacy of choice?  Krissy :)       

Saturday, April 14, 2007

John may get discharged today!

Hi!  I wanted to do a quick entry to let you all know that John is doing much better.  If he had no fever during the night, they are discharing him today.  That is providing they didn't find anything positive in his cultures that needs to be treated.

His fevers are finally starting to dissipate.  He is going to be sent home on an oral antibiotic, so he will no long need IV antibiotics.  He has been on two IV antibiotics in the hospital - Vancomycin and Cefepime. 

I feel bad that I even mentioned this hospitalization to you all as it did not turn out to be something serious.  I worried you after good news. 

I was concerned when he was first hospitalized, but am only relieved now. 

Hopefully John will be discharged tonight.  Just in time for the biggest snowstorm of the year!  Or what could be the biggest snow storm of the past twenty years, they say!  I hope it isn't that huge.  And I hope it doesn't last too long.  We should be stuck at Hope Lodge for a few days when John gets out of the hospital, because his release about coincides with when it is supposed too start snowing.  I am thankful that we have a safe place to stay.

So I will get back on tonight and let you know if he was discharged.

I also want to get back on today or tomorrow and write a little more on narcolepsy and answer a few of you all's questions.  

But for now I have to run over to the hospital to see what the doctors are saying about John. 

Okay, love you all, Krissy :)     

Thursday, April 12, 2007

i have narcolepsy

Yes, it is late.  But I just took a four hour snooze, and am going to go back to bed shortly.  I just want to have a few minutes computer time.

Gosh, so like what's been happening?  We have been up here since Monday morning and John was hospitalized as soon as a bed became available.  He had actually been having fevers since the Friday before Easter.  He woke up with 101.5 if I remember correctly.  I didn't write about it in my journal.  I thought it was a little flu bug or something, and would go away, and why trouble anyone's Easter.

Anyway, it won't go away.  John runs around 101 degrees.  He has since Friday.  This is starting to get worrisome.  The doctors thought it was an infected PICC Line, but now they can't find an infction in the line.  They did pull the line because it wasn't working, but when they cultured it it didn't show infection.  So now they have no idea what the source of infection is.  Or is it is a virus.

John is getting an IV antibiotic every other day.  Not every day because he only has 25 percent kidney function and his creatinin level is too high.  Too much of the antibiotic could cause him real kidney failure and he would have to start permanent dialysis, so they are walking a tightrope between curing whatever is causing the fevers and keeping his kidneys functioning well.

Well, that's the situation with him.  We don't know a whole lot yet.  When we do we will let you know.

Now I guess I will tell you something about me.  I forgot to mention how my sleep test went.  Suffice it to say the actual test was miserable, LOL.  I won't go into why.  It would be long and boring.  Anyway, the test was two parts, to see if I had sleep apnea and/or narcolepsy.  They called me back after about a week.  I have narcolepsy. 

Some people say, "at least you get to take a nap", or something equally as goofy as that!  They don't know what it is like.  Narcolepsy is a very frightening thing to me.  I don't know how it is to other narcoleptics, because I have never met any.  But to me it is frightening and frustrating.  I can't drive.  I fall asleep in a group meeting, and don't know if I have been asleep for thirty seconds or thirty minutes.  I don't know what I have missed.  I also fall asleep (say in my computer chair) and find myself slumped over and paralyzed and unable to move for a minute or two upon waking.  While I know from past experience that I will eventually get unfrozen, I still am somewhat afraid and call out for John.  I also fall asleep often while on IM with friends.  If I ever stop suddenly chatting with you, you will know why, don't worry, I still like you, LOL.

Yesterday I was sitting in the hospital room chair next to John.  I was holding a cup of coke with ice, and no lid.  I fell asleep and dumped my coke all over myself.  I had no change of clothes.  No, narcolepsy is not a fun way to get an extra nap or fifty a day.

At any rate, I am not scheduled to see the neurologist for treatment until April 26.  So I will just hang in for a bit longer. 

Well, I guess I better go.  Hang in there you all, Krissy 

Tuesday, April 10, 2007

John's in the hospital

iJust checking in with you all.  I hate to say it, but John is in the hospital.  At Hershey Medical Center where he had his bone marrow transplant.  The cancer is not back, but he is having complications from the transplant.  Or perhaps the PICC line.  The PICC line is something that was put in his arm so that he can receive chemo when he needs it (for the Hemolytic Anemia), as well as blood, or antibiotics.  It is also used to draw blood from his arm, because he frequently needs a lot of labs drawn.  Anyway, at this time the oncologists are thinking that the PICC Line is infected and that the infection has gone into his blood, because his fever is a little bit high.

I am staying at Hope Lodge (near the hospital).  The times I am not with John at the hospital, I go there.  Please don't send us any mail there yet, unless I ask you.  I need to find out if this is going to be a prolonged stay or not first.  I would hate for you to send a letter and we had already left.  I am hoping this will be a short stay.  It could be a few days or a few months.  Who knows.  But I will let you all know as soon as I know.  

I don't know what else to say.  I didn't know that he could still have complications after he was cured.  Boy am I having a rude awakening here.  Maybe I knew but chose not to think about it.  I am really tired.  I still have lots of faith, and am trusting in God, and leaning on you all, and my family.  But I am somewhat tired.  But I am hanging in there.

Okay, I need to go to lunch now, then get back to John.  I'm hoping for your prayers again, as we have seen they do work miracles.

Love you all, Krissy

Monday, April 9, 2007

monday morning question


If you had to be an Easter Bunny at an Easter party, and were told to pick from one of the following outfits below, which one would you choose to wear?





My answer:  Cute.  Side notes:  Traditional looks, well, not too traditional to me.  When I read his name, I was perplexed, LOL.  Why would they call him traditional?  It looks like he has a Richard Simmons vest on!  As far as Glam goes, I just don't want to be her.  She has on garish blue eye shadow from the 70s, LOL.  Now Goofy, while you may like him/her, to me looks just plain Goofy!

You may not agree with me.  Who do YOU want to be?  Krissy :) 

Sunday, April 8, 2007

the empty tomb


                               He has risen!!!

Jesus said, I am the resurrection and the life; he who believes in Me, though he die, yet shall he live.  And whoever lives and believes in Me shall never die.

                                      John 11.25-26    

Saturday, April 7, 2007

Easter sillies


What did the man say when he saw 10 bunnies hopping over the hill?
There go 10 bunnies hopping over the hill.

What did the man say when he saw 10 bunnies hopping over the hill with sunglasses?
Nothing.  He didn't recognize them.

What's the best way to send a letter to the Easter Bunny?
Hare Mail

What did the rabbit say to the carrot?
It's been  nice gnawing you.

Once there were two chocolate bunnies and one had his ear bit off.  One said Happy Easter.  What did the other one say?

Knock Knock
Who's there?
Basbit Who?
I found my Easter Basbit!

Knock Knock
Who's there?
Boo Who?
Don't Cry!  The Easter Bunny will come back every year!

Why did the Easter Bunny cross the road?
The chicken had his Easter eggs.

What do they call an Easter bunny on a farm?

How do you make a rabbit stew?
Make it wait three hours!

And now a little fact for you!:

The origin of the Easter Bunny in America:  The idea of the Easter Bunny came to the United States in the 18th century from Europe when Pennsylvania Dutch settlers told their children about the "Osterhase" (Easter Bunny).  He was a rabbit that laid colored eggs.  Good children received gifts of colored eggs in nests made in their caps and bonnets left by the Easter Bunny when they were not looking.  Eventually hats were of course changed to Easter baskets, and candy filled the baskets along with eggs.

    Hope you all are having a Happy Easter!!!

Monday, April 2, 2007

photo scavenger hunt #108


Photo Scavenger Hunt #108 will be due on Sunday, April 15, at 11:00 PM EST.

Our subject this week will be: colored eggs, Easter basket, Easter candy, anything Easter.

Please note the extended date to get your photos in.  You will have two weeks this time to post your photos and leave a link in my journal below.  I am doing this so that you have enough time to spend with your family at Eastertime and still have time to post your photos.

Please snap those pictures, this should be fun for everyone!

And leave the URL to your entry in the Comment Section below.  Thanks, Krissy :)    

monday morning question


Who helps the Easter Bunny dye eggs?

I'm sticking with John's answer:  The Easter Peeps.  That's why they are so colorful!  You see, these Peeps are alive, but not everybody  knows it.  They do the dyeing behind our backs with the Easter Bunny when we are not looking.  When they grow up these Peeps become the hens who lay the eggs for the Easter Bunny to dye next year!

So what's your answer?  Use your imagination!  Who helps the Easter Bunny dye his eggs?            Krissy :)

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