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 :)        

32 comments:

  1. pixiedustnme4/18/2007 8:06 AM

    That was lovely - and OK, I know lovely isn't the word - but that IS what it's like.  Nothing is ever easy and on top of worrying about your husband you have to worry about so many other things and it just stinks and its not fair!  Thank you for sharing, (doesn't it help to vent?!!)  You are in my prayers as always  -Kelly

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  2. Krissy,
    I honestly don't know how you do it.  Your faith is strong.  You have so much to think about and do.  And, when your own health is not the best, I just can't imagine.  Thank God for His strength without it we would be lost.  I am very proud of you.  This was one of your best entries.  As always John is in my prayers, as are you.  Love, LuAnne

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  3. This was one of your best entries because I felt like you were truly sharing with us.  No surface stuff. You shared what really happened and what really bugged you.  I'm sorry you have to deal with all of this.
    Take care,
    Pam

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  4. I feel so sorry for you having to chase about as you do,when you have the worry of both your healths on your mind.You certainly are one strong lady and I admire you tremendously,you deserve a medal.The courage you have is enormous.I couldn't cope I don't think.God sends the heaviest loads to those who can carry them.I do hope you both in time have the best of health that can possibly be and you both deserve a great big long holiday then just to rest up.My prayers will be said for you both thousandfold.You asked how did you do at the end of your posting .I think you did fantastic to explain all that to us.You are a star.Take Care I have  a lump in my throat thinking of you both.GOD BLESS.I hope you both have a kind day health wise.(Kath)
    Astoriasand http://journals.aol.co.uk/astoriasand/MYSIMPLERHYMES

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  5. hugsdoodlewacky4/18/2007 9:28 AM

    ((((((((((((((((KRYSSY/JOHN)))))))))))))))))))))I relize yoy have been going through so much,but,idnt relize that you had to through all of this,with doctors being mean and them not filling your meds.I am glad someone was there to help you,to take you to get your meds and to get some food.God bless both of you.


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  6. John is so lucky to have you to watch out for him! I know exactly what you mean about hospitals. I'm sure they are all trying to do their best, but they are people with stress and other lives and orders and things get not passed on, or someone gets distracted and forgets or..... Well, you know! Anyway, what I'm trying to say is that you are amazing keeping track of all of it AND fighting for your hubby!
    http://journals.aol.com/astaryth/AdventuresofanEclecticMind/
    http://adventuresofaneclecticmind.blogspot.com/

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  7. Well you sure had God watching out for you and urging you things to do. Sometimes a person has to speak up to get things done right. May God continue to bless you and John. Helen

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  8. Krissy, you did wonderful!  I loved it!  You express yourself well. I use to like to write and thought about being a teacher in college.

    Krissy, I am telling you, you write so good, you could write a book!  

    Not only that but the way you fight for your husband and yourself is awesome!  I would be the same way.  When my Mom was ill, I went through all that & you have to watch some of those doctors, nurses, etc.  Krissy, thie entry might be the BEST you have written, as it really showed what your world is like!  EXCELLENT.   I give you an A.  Keep up the good work.  Hug John, take care of yourself & relax today.  Hugs & Love, Merry

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  9. Just have to add that you have to educate yourself to know what to watch for when caring for an ill loved one & you have done this very well, Krissy!  I meant what I said.  All you need is a publisher and you can sell a million copies!

    Seriously Krissy, You wrote so well, reading this was like I was right there through all you went through!  I am sure others will see this and compliment you, too. That is why it was such a marvelous entry.  You are a wonderful person, wife, friend, and I love you!  Congratulations on your entry!  Merry

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  10. (((((((((Krissy and John)))))))))  I felt like I was right there with you when reading.  I know how stressful the hospital scene is and how much needs to be watched, noticed and dealt with.  Bless your heart, dear, I pray the Lord continues to strengthen and comfort you and John.  Thank you for sharing with us.  I am praying the treatment for narcolepsy will be a success for you.
    loving you
    karyl

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  11. ((((((((((KRISSY & JOHN)))))))))
    An excellent entry. It hurts me that you and John have had it so tough. But I am so glad you let us know exactly what went on. You expressed yourself beautifully, could indeed, write a book.
    Much love. Praying for the two of you daily.
    Barb- http://journals.aol.com/barbpinion/HEYLETSTALK
            http://journals.aol.com/barbpinion/FROMBARBSSPIRITUALJOURNALS

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  12. I totally and completely want to know EVERYTHING you go through with John, so that I have a better understanding of what you do have to bear.  However, I also know that sometimes it is just completely exhausting to just LIFE it, never mind write about it.  That being said....please know that I am always here and I will always be happy to hear about EVERYTHING.  And I live a little over 2 hours away.  Maybe I can come up to Hope Lodge one day, take you to lunch, take you shopping, get your meds and do your laundry?  I'm betting that just one day would make a huge difference.

    ((hugs))
    Jeanne

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  13. A look behind the machine that is hospital, seen from the other side. Thanks for sharing, Krissy, most informative. What's doing about your narcolepsy?

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  14. thanks for sharing.  we are always here to listen to you about every thing and any thing.  you go through a lot, to much and those doctors should be more understanding and not so nasty.
    hugs and prayers
    noelle

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  15. Krissy wished I lived in your area so I could you or John wherever you needed to go.  This has to be very hard on your dear worrying about your darling and his health and having to deal with many of the incompetent medical personnel who can act so uncaring at times. Bless you for standing up for your husband so that he got the right and correct care.  Allyou can do dear is take care of yourself, keep your strength up and do the best you can.  Wish I could be there to help out and give you a hug or comfort whenver you need it dear...bless you both...Arlene (AJ)

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  16. wow i am sorry you had to fight but i am glad john has you:) keeping  you in prayers

    Deb

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  17. I think no matter where you go, with insurance or without, there are so many extra, added measures and items to wear you down and frustrate you.  And of course, being unable to drive puts a whole nuther spin on things!!  Have you looked into getting help through a church?  Like whatever denomination you are, letting your pastor contact a church in the hospitals area to see about volunteers to help you get around town.  Just a thought.  -  Barbara

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  18. you did great, and WOW!

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  19. I wish I lived close to the hospital John has to go to, because if I did you could stay with me, and I truely mean that. ((((((((John & Krissy))))))))))) your both in my prayers.
    Love,
    Cindy

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  20. princesssaurora4/18/2007 10:26 PM

    I think you did a great job!!!  I am so glad that you fight for him... you have to do that for loved ones in a hospital... it truly is a must.  I am so sorry that you have to deal with the ride thing all the time too.  Is there someone at your church that could maybe help organize a list of people on call for you guys each day... rotating thru the week.  So, if it is Monday you call person a, tues person b etc?  

    I hope you get some relief and rest and I am sending you prayers...

    be well,
    Dawn
    http://journals.aol.com/princesssaurora/CarpeDiem/

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  21. tendernoggle4/18/2007 11:18 PM

    I THINK YOU DID REALLY GOOD!  I KNOW YOU HAVE TO BE SOOOOO TIRED ...I AM STILL PRAYING FOR YOU BOTH....
    LOVE YA,
    CARLENE

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  22. OH...still saying prayers!
    Hugs,
    Gina

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  23. You did very well, Krissy.  so sorry this is so short- but playing MAJOR catch up!
    Hugs,
    Gina

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  24. sugarsweet0564/19/2007 2:06 PM

    Keeping you both in my prayers.
    Hugs & love,
    Sugar

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  25. irisheyes19294/19/2007 5:57 PM

    Boy you are amazing!  I shutter to think what John would be like at the hospital without your advocacy.  You are a blessing! A living saint!
    In Jesus and Mary,
    Kellen

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  26. Hello Krissy, Thanks for the very informative entry, it DOES give more of a picture of what John is going through at the hospital. Good for you for fighting John`s corner at the hospital, sometimes that just has to be done. Bless you both.

    Love Sandra xxxx

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  27. Whenever I walk the line..... of not understnading why I am going through what I am going through... I remember that God will never give me more than I can handle.  You are handling life with such grace... HE is proud.

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  28. Thanks for sharing more about what you go through. I am glad that John has you with him.
    Barbara

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  29. cacklinrosie1014/22/2007 9:49 AM

    Oh dear, Krissy....your trips to Hershey are a nightmare.  Not only do you have to worry about John but the stress of just getting around.  Medical care is great to a certain extent but they do like to release way too soon.  Now you have to carry your worries home again.

    Doctors can be very touchy and also can be wrong.  We all need to stand up for what we know is the correct information.

    I'm praying John is doing better now.  You two really need a break of some sort.  Love ya, Chris  (ugh, my alerts are totally acting up again.)

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  30. Dear Krissy and John~What words can I use this time that I have not said before? Well...here goes~John, you know what a trouper you are and how loved you are; I know this. Krissy~thank God you FIGHT because you know what is going on more than the medical establishment does. Congrats for being on your toes--narcolepsy and all! My best, Deb xox

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  31. lifesabench64/24/2007 8:57 AM

    I'd say you did very well in describing to us the pains and frustrations you both have to deal with.  Makes us think about a lot of things- but Krissy, you are amazing- and God Bless you both!  I can't imagine, but I pray John will get better and that you will too.  Carolyn.

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  32. What a nightmare.  First you have to deal with John's needs and make sure they do what they are supposed to be doing. Bless both your hearts. Just doesn't seem fair that you have to jump through hoops getting here or there.I don't think I'd have the strength to do all you do.  You're both in  my thoughts and prayers.
    Hugs, Barb

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