Tuesday, October 31, 2006

Thanks for giving blood


I have wanted to do this entry for awhile.  John and I want to say to each and every one of you who gave blood over the past few months, THANKS FOR GIVING BLOOD.  I don't remember who it was who started encouraging everyone to go out and give blood in honor of John, because at the time my life was so hectic, and John was hanging on to life.  But I do remember that I would get up each morning and check out The John and Krissy J-Land Gazette to see how many had donated blood. 

After John became with it enough to know what was going on, I began to tell him daily the number of those who were donating blood, and he would just shake his head in disbelief.  Actually, he would silently weep each morning.  How could there be such selfless people out there, willing to help others stay alive?

John wants to say to you all "You will never know what it meant to me to know that so many were donating blood in my name.  Thank you for giving blood to the people who need it to survive.  Each time I had a transfusion I knew the blood was not coming from the person who donated in my name, but I felt like it was!  I thought about everyone who donated and it made me glad to know there were so many generous people in J-Land and beyond."

I heard on a TV commercial the other night that "Every two seconds in America somebody needs blood."  This astounded even me.  So I want to say thank you, thank you, thank you to all who gave blood, or who got your friends or church members to give blood.  Please pass this message along to your friends who gave blood so that they will know that John appreciated every drop of blood he received.  And I know that others, besides John, those to whom the blood went to, appreciated the blood they received also.  It helped to save their very life.

You all amaze me.  According to The Gazette the last count for those who have given blood is 81 donors.  And those are only you all who want to be counted in the official total.  There are some who have chosen to remain annonymous.  Such an outpouring of love and selflessness.  

John still continues to require blood.  He needs two units (bags) once a week.  This is much better than he was a couple of months ago.  Remember when his illness (AIHA) first started and he was requiring 7 bags of blood daily?  Now the doctors are trying to work on a cure so that one day he won't need the blood at all.  Meanwhile, it's great to know the blood is there.  Great's not the right word.  Imperative.

Okay, I am getting long winded, so I will leave you with one more photo of John getting blood while was in the hospital with Autoimmune Hemolytic Anemia.  He lived because of people like you!  You all rock, you all save lives!


Thank you.  From the bottom of our hearts.  John and those like him are alive because you cared.  Krissy :)    

Edit:  It is now Nov. 22 and the no. of blood donations has jumped to 112!  Thanks for continuing to give!  John says "Life is precious and someone will always need it."  Krissy :)       

Monday, October 30, 2006

Photo Hunt Participants...

Photo Scavenger Hunt # 94

This past week we were asked to do something different.  We were asked to go into our files and select a photo to post of sentimental value or special meaning.  You all did a fantastic job!  I really enjoyed looking at your selections.  Please, you all, check out each other's, photos. 

Before I post the links to your photos, though, I wanted to thank Val of There is a Season for hosting the Photo Scavenger Hunt for all the weeks I was away with John in Hershey while he had complications from his stem cell transplant.  Thanks Val for all your invaluable work.  I thank you and so does our community here! 

Now on to those who participated in this week's Photo Hunt:















These were great!  Please play again! :)

Monday Morning Question


Can you see into a future time and be inspired?

My answer:  Yes I can.  I am excited about the future.  I look at the future with great hope and promise.  I believe John and I will have a good future together.  I look forward to doing things such as volunteer work, spending time with my family, 
learning new things, and personal growth.  I also look forward to the surprises the future will bring.

How about you?  Can you see into a future time and be inspired? 

Sunday, October 29, 2006

My entry for Photo Scav Hunt 94

This week we were asked to go into our files and select a photo to post of sentimental value or special meaning.  Not being able to choose just one, I chose two.


John and I were married in May of 2005.  I love this photo because all the memories come rushing back when I look at it.  And I think John looks quite handsome in it! 

The next photo is of my sisters and me after the wedding.  Unfortunately my sister Deirdre couldn't make it.  But here we have Val (my maid-of-honor), me, Therse and Grace.  What a glorious day it was!


I'm feeling so behind!

Well, another day has past.  And I still feel so far behind!  When am I going to catch up?!  Being with John in Hershey while he had the stem cell transplant has sure left me behind in so many things.  The past few days I have felt really overwhelmed.  What happened to my positive attitude?  I am sure it will come back...

John is doing OK.  He has actually managed to stay out of the hospital for two weeks, praise God!  Dr. Claxton in Hershey is concerned about him though.  He is concerned that John may have a viral infection or something because he needs to be transfused so frequently.  So Dr. Claxton's nurse called John on Friday and told him to come in for an appointment on Nov. 3.  During that time Dr. Claxton will also decide if John will get more chemo treatments (Rituxin) to try to stop the Autoimmune Hemolytic Anemia (so that he won't have to have transfusions anymore).

I have mixed feelings about John having chemo but I am sure that his oncologist will decide the right thing.  Actually if it will help John, then I am for it.  It's just scary because he has had chemo 39 times so far.  He says it affects his thinking.  But I am for it if it works.

Okay, enough about that subject!  I am so excited about the holidays coming up.  I have a few projects I am working on, and I am real excited about them!  More on that later.  I have to have a little mystery in my life, right?  You will know soon enough!  Anyway, Christmas is such a beautiful time.  My favorite part is of course the birth of the Lord. 
And there is so much charity and cheerfulness that usually goes along with Christmastime!  And so much fun!  I can't wait.  I gotta make sure I pace myself though, LOL...

Okay, until tomorrow then, nitey nite, Krissy :)

Thursday, October 26, 2006

MAD about CATS

So today was an okay day.  I felt kind of blah when I woke up, but I motivated myself.  I just had to get into things.  John and I had to run a lot of errands.  In the car he got really quiet and remarked how precious life was.  He didn't say it right out of the blue, it was in reference to something.  Anyway, I thought, "gee it is, we can't take it for granted".  I thought about how worthwhile life was even when it is hard.  Gee, John is somehow always my constant inspiration.  He's constantly reminding me to love life, because he sees life from a different paradigm since his stem cell transplant. 

So we went to a few doctor's appointments.  John's local oncologist was in the same building, so we went back to talk to his nurses.  John was feeling quite weak, and he wanted to know if he was due for a transfusion.  He had just had one two days ago, however, he was already weak, so he thought that maybe he should have another.  They said it wasn't quite time yet, and were worried why he was so out of breath and weak.  So they ended up calling Hershey.  Hershey is going to call us back on Thursday to let us know what is going on.  The nurse in Hershey doesn't think that it is time for John to have a transfusion yet either (just judging from the labwork John had this morning).  She is wondering if there is something else going on with him.  So he will probably have further testing.  This morning when John woke up he had a little fever.  Please God don't let us have to go back to Hershey.  I just want to stay home longer than two weeks and live a normal life for awhile!  I mean I will do it if I have to, but wouldn't it be nice to stay at home for awhile?!

To those of you who have emailed me and left me comments asking how I am doing, don't worry about me. I am feeling somewhat better.  I think it is just some alergies and asthma.  Yeah, yeah, I will slow down.  I will take a Calgon Moment, Deb!

Actually John and I did take a time out tonight.  We did something really silly and fun.  We played a game called Garfield's MAD about CATS.  You have to go through this intricate process where you build something serious, only to find out when you complete it, and Garfield and Odie unmask it, there's nothing there but a teddy bear!  After all the work you put into it!  I would suggest anybody who wants to get a gift for their kids to get this this CD-ROM, they would get a kick out of it.

I say kids, but it is a lot of fun for adults too.  To advance along you play a myriad of games (there are 20 I think), and even at the beginner's level the games were hard!  On one of them I never scored above a zero, LOL.  Some of the games were: Squash A Spider, Dunk Binkie the Clown (where the only good clown is a wet clown!), Fowl Shot (where you launch chickens from an easy chair onto a target or out a window, if you miss they die!), Whack A Rat ("Look out!  The lab rats are trying to escape.  Whack them back into last week!"), and my personal favorite Hack Attack.  On Hack Attack, Garfield shoots hairballs up at rows of baby kittens, to try to kill them and their cuteness, before they drop hearts down on him and kill him.  This game was reminiscent of a game Stuart used to have us playing, which was called Sheep Something-or-other.  Do any of you remember that game?!

Anyway, we had a blast.  It was so nice to be doing nothing but laughing.  I want to thank you Kate (John's chemo angel) for sending the game.  We are going to play it again.  I am competetive and will sit here for hours and try to beat my high scores, LOL!  That is late at night when I am done with all my work and should be in bed.  Which is bad, I need to stop staying up so I can be fresh each morning.  So I guess I will sign off now. 

But before I go, I just wanted to say I found a webpage to buy the game here,  so if you are interested in getting it, there it is.  And for you UKers, check here.  Gee, they should pay me for doing a commercial!  

So off I go, maybe I will unwind for about a half an hour playing POGO.  I was going to say that I was a closet game player, but  you probably know there is nothing closet about it, because I have a POGO logo right there in my sidebar, LOL.  Okay, quit laughing, Penny!  Alright, nighty everyone.

Krissy :) 

Tuesday, October 24, 2006

My nominations...

Okay, so there is no humble way to do this, LOL.  Many of you have been dropping by congratulating me on my nomination so I thought I would mention that I had more than one.  Here is my little collection:



I was going to put them in my sidebar, but they wouldn't really fit.  And I thought putting all five of them in there would be, like, super tacky.  So I thought I would just say I was a VIVI nominee and leave it at that.  Until this morning when my sister Valerie told me that I had to put all of my VIVI nomination logos in an entry, or she would do it herself!  So I figured I would get it over with. 

I feel strange about doing this, but Val and John say to do it, LOL!  

Finally, I want to take this time once again to thank all of you who read my journal.  I never thought when I began writing it a little over two years ago that anybody would even give it a second glance.  When I began writing, believe it or not, I was very fearful to share anything of myself.  Now I am a part of a great community who shares with one another.  I am so proud to be a part of you!  

Love to you all, and good luck to all of the nominees on Nov 2.

Krissy :)  

Monday, October 23, 2006

Photo Scavenger Hunt #94 subject...


Photo Scavenger Hunt #94 will be due on Sunday, October 29, at 11:00 PM EST.

This week go into your files and select a photo to post of sentimental value or special meaning.  Don't forget to tell us why it holds value for you. 

Please place links to your entry submissions in the comments section, including the full entry URL.  Interpret the subject any way you would like and have fun!!  Thanks for playing! ~ Krissy

moday morning question


What Fall memory from your childhood stands out most pronounced in your mind?

My answer:  My brothers and sisters and I raking leaves and singing slave songs.  Why slave songs you ask?  Well, we had almost two acres of lawn, and we thought that was a lot, and we felt overwhelmed (okay, we were lazy!).  At the time, we thought our parents were mean to make us rake all those leaves, and we felt like we were so put upon, that we sang those slave songs we learned in school.  Now that I am thinking about it, why did a bunch of children of caucasion European descent learn slave songs anyway?  Was that supposed to help us treat people of color better?  I just remember the teachers saying, "ok class, we are going to learn something about culture, let's sing slave songs".  It was kind of crazy.  So somehow we thought we could relate while we were raking leaves, and we would sing slave songs.  Now, that's just downright crazy...

So how about you?  What is your childhood Fall memory?

Friday, October 20, 2006

thank you for the VIVI nomonimations!

Hi you all.  I just wanted to come on and thank you all for nominating me for some VIVI nominations.  I am really surprised!  I am both honored and humbled.  Thanks for your support.  I guess that is all I have to say about that.

Well, it has been a few days since I have written.  That is because John and I have been in Hershey.  No, he wasn't hospitalized this time, he just had to go to some appointments.  It actually turned out to be a nice time!  Nice and relaxing.  Other than the appointments, we got to lounge around a lot.  We spent the time together just relaxing, watching television, chatting, and laying around doing nothing!  I also fooled around on the computer a lot!

John's appointment with Dr. Claxton went really well.  His Autoimmune Hemolytic Anemia is actually getting better!  John only requires blood about every seven days instead of five days now!  Dr. Claxton showed us on a graph how John was getting better.  Interesting how a mere blood test could show this. 

Even though John is getting better, Dr. Claxton is still considering chemo for John.  Chemo (Rituxin) might make the AIHA go away completely.  I don't know how many weeks of chemo it would be.  I am guessing four.  I also don't know if they could do it here where we live, or if John would have to be treated at Hershey Medical Center, and we would live at Hope Lodge again for awhile.  I am hoping he could be treated here where we live.

I am really feeling bad for John, even though he in no way feels sorry for himself.  He told me the other day that he has had 39 rounds of chemo in his lifetime, between his two types of cancer (Non Hodgkin's Lymphoma and bone marrow cancer) and his AIHA.  

One of the reasons I feel bad is he says he has something called "chemo brain".  I didn't believe in it at first until I read about it in Tammy's journal.  Yes, I had always heard about it, but I thought it was an excuse to not have to, well, try hard enough.  But I can really see how it can effect thinking patterns and what needs to get done.  It especially effects memory and multi-tasking abilities.  At least now that I know, I am not as frustrated with John.  And according to the article, it takes ten years for chemo brain to wear off.  Yikes!

Okay, well that's about it.  Today at 10 am the home healthcare nurse will come.  She will take bloodwork to see if John will need the chemo.  I imagine Dr. Claxton will decide within a week whether John will get the chemo.  The blood tests will determine also if John needs blood today.  I am certain he does because he was weak yesterday.  But locally they won't be able to fit him in today I am sure.  So I hope they can fit him in tomorrow (Saturday), and he won't have to wait till Monday.  He will be so weak if he does have to wait.  

Anyway, that's about it.  Thanks for all your prayers and well wishes.  I think the prayers must have something to do with John getting better.  Can you pray for me to?  I feel really lousy today.  I think I am coming down with something.  I have a really bad headache,  conjestion in my lungs, and feel feverish.  Yuck, maybe I have the flu.  I have no time for this!  Well got to run.

Love you all!

Krissy :)     

Saturday, October 14, 2006

Voting to choose VIVI Nominations Begins Sunday

Hi!  This is just a reminder that voting to choose VIVI nomininations begins Sunday.  

You will have three days to vote.  To participate go to this journal


and put it on your alerts.  This journal will give you more information and tell you where to vote.  There is also a link in my All About Me Section (The VIVI logo) that will take you to the AWARD JOURNAL. 

I'm participating this year because I had so much fun last year.  At first last year I didn't know if I really liked the idea of awards being give because of course, EVERYBODY is a winner, and how do you pick?  But then I got to thinking about it.  This is our way of picking who we want to highlight.  You know, like the People's Choice.  And I was so pleasantly suprised last year!  There were many that were not expected to win who won!  Just regular people, LOL.  It started out with grumbling, with a lot of people saying only those who were real popular and in cliques would win.  But it didn't happen.  The people spoke, and there were some real cool surprises!

So if you want to have a say, make your voice known.  Look around for which journal you want to put in each category.  You can choose one journal per category.  You can leave categories blank if you only want to vote for one or two or so categories.  It is pretty simple.  The VIVI journal will explain it to you. 

Okay, and have fun!

Krissy :) 

Friday, October 13, 2006

Meet the clean-cut John, LOL

Hi you all.  I am feeling a little better tonight.  

My doctor ordered me a home nebulizer, and medicine for it, and my medical insurance paid for it.  I am so excited!  Now I won't have to go to the hospital every time I have a bad breathing problem.  What a relief. 

I called him today because I was in severe pain again.  I thought, "This can't go on.  I can't keep running to the hospital every time I have a severe asthma attack."  So I called him up and he ordered it for me.  Just like that.  

Anyway, I wanted to show you a couple of pictures of John, the smart ones I promised you!  This was his last hospital visit.  The hospital visit I made sure he got a haircut for so he would look decent for, LOL.  And feel comfortable.  He likes feeling comfortable and feeling clean-cut, LOL.  Okay, so here goes:


And here's another one with is sharp looking haircut, LOL:


Well, that's about it for now.

Love you all, Krissy :) 

checking in

Hi you all.  I wanted to check in.  

Today was a long day.  John went to get blood here at the local hospital.  Two bags.  He has been needing two bags about every five days.  His Hemolytic Anemia (AIHA) never did go away.  He had a test yesterday from the home healthcare nurse (she comes three mornings per week).  She tested John to see at what stage the AIHA is at.  We will get the results on Monday, because John has an appointment on Monday at Hershey Medical Center to see Dr. Claxton.  He actually has several appointments, so we are going up to Hershey on Sunday night and returning on Wednesday.

I am wondering how aggressive Dr. Claxton is going to be to try and continue to improve the AIHA.  I hope he will be aggressive about it.  John is having somewhat of a hard time.  He is weak and tired a lot.  He has to lay down a lot.  Especially after about day three of getting his blood, two days before he needs some more, he gets very weak.  He also has to use his walker and get pushed around in a wheel chair a lot.  I was hoping for a little more than this for him by now.

Don't get me wrong.  We are both still thrilled with life, and enjoying life every day.  We are spending some wonderful time together.  And if it is the way it has to be, then at least he's alive.  But I do hope they can make him even better.  

Things are kind of hard for me right now.  I am so backed up on EVERYTHING.  You can't be away from home for about 7 1/2 months out of the year and not be backed up!  I feel dreadful, I just can't get done what I want done. 

And to top it off, yesterday (Weds) I had the worst asthma attack I have had in years.  Actually, a day long of asthma attacks.  I ended up having to go to the Emergency Room Wednesday night.  I am now on Prednisone (a steroid) and Zithromax (an antibiotic).  I have a bronchial infection.  Of course this whole time I didn't recognize I had bronchitis.  I was just pushingmyself to get everything done.  I don't have time to stop and rest. 

This morning (Thursday) was no exception.  I had to take John to go get his blood.  So after I got home from the Emergency Room last night, I got a few hours of sleep, got up, and went back to the hospital with John.  The whole procedure at the hospital took six and a half hours.  I was having to use my rescue inhaler while there.  The hospital doctor is allowing me to take four puffs on the inhaler every four hours.  I have been doing that a lot today.

I wanted to get so much more done today, but I have to pace myself with the bronchial asthma.  Oh well!

Okay, so that's about the situation.  I'm somewhat tired.  But never defeated.  I'm still taking things one day at a time, one minute at a time, as John advises me to do.  The brightest moment is just around the corner...

Krissy :)

Wednesday, October 11, 2006

I Hope You Dance

I added a song to my All About Me Section.  Click on the "musical notes" icon and you'll hear the song.  It's just instrumental, but it was originally song by Lee Ann Womack.  I'll share the words with you here.

I Hope You Dance ~

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
God forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance..........

I hope you never fear those mountains in the distance,
Never settle for the path of least resistance,
Livin' like me, takin' chances, but they're worth takin',
Lovin' might be a mistake, but it's worth makin',
Don't let some Hell bent heart leave you bitter,
If you come close to sellin' out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.
I hope you dance....I hope you dance.
(Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years
and wonder where those years have gone.)

I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.

Dance....I hope you dance.
I hope you dance....I hope you dance.
I hope you dance....I hope you dance..
(Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years
and wonder where those years have gone.)

I dedicate this song to John, who "never takes one single breath for granted".  May you keep on dancing, Baby.  

Sunday, October 8, 2006

photos of John in hospital

Hi you all.  I thought I would post some photos of John, for those of you who have never seen any of him, so that you could put a face to him.  These photos were taken while he was in the hospital for Autoimmune Hemolytic Anemia (hospital stay before last).  In the next entry of him I will post the most recent hospitalization photos, because I want to show you how much he has improved!  I think he looks so much better in them.  I like to think he is making progress.

This first photo is of John with his Shiley Hemodialysis Catheter in.  He got his kidney dialysis through it.


As you can see, the Shiley protruded from his neck (actually it was inserted into his jugular).  It was sewn onto his neck to stay in place.  It used to stick straight out, and he looked like Frankenstein, LOL.  So that was his name for awhile.  But the bandage kept ripping off, because the Shiley was too heavy.  He had to have the Shiley sewn on again.  And still it wouldn't stay in place.  So the nurses hooked up this contraption where they put a netting band around his head, to keep the Shiley in place.  From then on he was called such names as Indian chief and tennis player, LOL.

The next photo is a photo of John learning to use his walker.  He was in bed for a month and was so weak he couldn't walk after awhile.  So he had to use a walker to walk again.  He hardly ever has to use it now, but he had to for awhile.  Actually, he does have to use it now if he goes a long distance, or sometimes I have to push him in a wheelchair.  But he is doing a lot better.


Now, what a picture that is, LOL.  He needs a shave and a haircut!  Oh, what a horrible thing for me to say!  The whole time he was in there I kept saying, if we could just get this band off your head, we could wash your hair properly, and maybe even give you a haircut.  Your hair is way too long!  LOLOLOL.  I am always trying to get him to trim his hair and get dressed up when he goes to see the doctor, LOL.  Maybe I am shallow!  I just want him to look his best, LOLOLOL.  But who cares about such matters when you are sick?

So anyway, on to the final photo.  This is towards the end of the stay, when he was feeling a lot better.  He entitled this one "Getting Better".


See the pink bracelet?  That is called a transfusion bracelet.  Everybody who gets transfused has to wear one.  They have a lot of information on them, such as your name, and your blood type and antigens.  They have to be replaced every three days or so.  A person receiving blood has to be typed and made sure they are receiving the right type of blood.  Especially a transplant patient.  His blood is constantly changing, it is becoming the type of the donor.  So John has to get labwork every few days to see exactly what his blood type is (antigens and all) and then get a new bracelet, before he can get any new blood.  Interesting, huh?

So anyway, all of these photos were taken towards the end of John's hospital stay.  I couldn't bare to take any while he was really sick, and we didn't know if he would die.  I didn't want to remember him that way.  I shudder right now to think of how sick he was and how we almost lost him.  Last night I got kind of insecure thinking about it.  I kept thinking about how fragile life was.  And how we almost lost him.  I think I am going through some after effect thing.  I need to come to some kind of terms with things and settle down some...

Okay, I hope I am not getting to morbid or too deep.  This entry was not supposed to go that way.  I really am okay! 

Well, I need to run.  I have a lot of things I have to do today.  I will show you some more photos of John later.  They will be of his next hospital stay.  His hair will be short, he will have a nice hair cut, care of me! ;)  I made sure he got one before his next hospital visit started, LOL, because I knew he would end up in the hospital again, and we wanted him to look his best for the doctors, LOL.  So you will see pictures of his good looking self, LOL.  Oh, I am being so silly this morning.  I am tempted to erase this last paragraph, but I guess I will leave it in!

Love you all, Krissy :)       

Friday, October 6, 2006

on IVs and ports

It was really nice to be home today.  Busy, but nice.  I did take some time to play around on the computer though, LOL.  I will probably regret it, because I won't get everything done, but gee, you have to take a break sometimes.

Today the home healthcare nurse came.  She showed me how to do the home IV (to administer an antibiotic to John).  John got the antibiotic Vancomycin, which only needs to be given once a day.  The nurse also showed me how to flush the line of the PICC.  A PICC line is a port where you take out bloodwork for labs, and you administer meds if necessary.  And blood is given through the port when necessary also.  I wanted to show you a photo of a PICC Line.  This is not John's current Groshong Picc Line.  I don't have a photo of the current one.  This is about two ports ago, LOL.  He keeps having them taken out because they keep getting them infected.  Let's see, first he had a Chest Port (a Hohn), then a PICC Line or two, then a Power PICC (they are purple), and then the current groshong PICC.  Anyway, his other PICC looked pretty much like the one he has now, so I will show you a photo of that:


It was not all too bad giving the IV this morning.  I could remember a lot of it from doing it in the past.  But the flushes were different.  They were hard to push, and when I pushed them to get the air bubbles out, the first time I shot the saline solution into the air and it landed allover the nurse's paperwork, LOL.  Then after the nurse left, when I was flushing John to finish up, I once again pushed too hard on the flush, and shot so high I squirted the ceiling really bad, LOL.  I had to get up on a chair to get it off, or the ceiling would have molded.  John said, "Oh, we have a really clean spot up there now!"  He also remarked, "I wonder what the range on those things are!"  He is funny sometimes.  

Okay, so John wanted me to show you the first port he ever had.  It is a chest port.  A Hohn.  He felt you would get a better idea of ports if you saw it.  I didn't know if it would be a good idea to show, but he said go ahead.  So here goes.  This is what he had to deal with when he first had the transplant.  He had this port for a long time, until it got infected about two times, then it was replaced by a PICC Line if I remember correctly.  So here goes:


So  by this time I guess you have got the concept.  Anyway, let's see, how is John doing?  By the time he left the hospital, his WBC went up, and so did his ANC (to 0.9).  The ANC is still neutropenic and he still has to wear a mask.  But they liked his improvement enough to let him out of the hospital.  Plus he no longer had a fever.  You know what, he ended up having one viral infection (they think) and three other infections (two staph and a bacillus).  Wow, that's four infections! 

I also said in my last entry he would need blood when he left the hospital.  Well, it ended up that he needed blood before he even left the hospital.  He is averaging needing blood every five days.  His oncologists are looking into what they can still do about the Autoimmune Hemolytic Anemia.  To go on like this for the rest of his life would be ridiculous.  He gets tired after about three days after getting blood.  That's no good.

Okay, I hope this wasn't a boring medical logue.  And I hope the photos didn't scare you, LOL.  I guess I had better go to sleep now.  I love you all.

Krissy :)

edit:  When I mentioned ports I left out one of the most important uses for them.  They are used so one may be able to get their chemo.  The chemo is administered through the port.

Wednesday, October 4, 2006

We're coming home! Again!

It's Tuesday night.  Well, really Wednesday in the wee hours of the morning.  I am up so I can have a little alone time.  I need to go to bed though.

I just wanted to do a quick entry first.  I wanted to tell you all that John is probably going to be discharged from the hospital tomorrow (Weds.).  He still has a very low white blood count, but it has come up a little bit.  And his ANC is now 0.7 instead of 0.  That is still neutropenic and somewhat dangerous, but not as dangerous as it could be.  He will also need blood in a day or two, but he can get that at the infusion center near home.  I guess he will have to wait two days to get blood, because we will be traveling home on Wednesday. 

John has had two antibiotics in the hospital.  He will be sent home on one.  It is called Vancomycin.  Hopefully he won't be sent home on the other one also (Cefapime), because he receives that one three times a day, and I don't want to be giving him that many antibiotic IVs.  Looks like I am going to have to be doing home IVs like I did in the past.  At least with the Vancomycin.  It has been a long time since I have done it, so a nurse is going to come out, probably Thursday morning, and show me how to do the IV again.  I will also have to learn how to flush the PICC line, as it is a little different than his other PICC lines I have done in the past. It is a Groshong PICC.  For those of you who don't know, a PICC line is where blood is drawn from to take labwork, and where you administer blood and antibiotics through.  A port so to speak.  I think I have a picture somewhere, I will have to show it to you in the next few days.

I said I was going to make this short, LOL.  I can't do anything abbreviated!

How do I feel about doing IVs at home this go around?  It is fine.  I just want to get home.  It will be hard at home, though.  I was getting behind between last hospital stay and this one.  Making the renal (kidney function) menus takes a lot of time, as does cooking the food.  Alot of it has to be made from scratch so that it doesn't have salt and other things in it.  Just opening a box of macaroni and cheese is way out of the question.  So just keeping up with the food is hard.  Not complaining, just stating a fact.

But it will be nice to go home.

I will write again after I get settled in at home.  Love you all!

Krissy :)

6 things

Okay, so I'm weird!

I was tagged by the young lady at Perspective on Rotations to list six things about me that were weird.  At first I couldn't think of anything, then I had trouble narrowing it down to just six, LOL.  Okay, maybe I am a little weird!  Here goes.

1.  I rip perfume inserts out of magazines before I read them because I can't stand perfume.

2.  I always wear pants to bed because my legs are always cold.

3.  I always double knot my tennis shoes.  This baffles John.

4.  I hate cereal.  I only eat it once or twice a year.

5.  I often start hiccuping upon waking.

6.  I like to eat sweet tarts and M&Ms together.  No, I am not pregnant.

I am tagging Val, Penny, Cathy, Kathy, Deb and Julie.

Tell us your weirdness!

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