Tuesday, August 29, 2006

Hoping the IVIG works

Hi ya'll.  It's Krissy.  I want to thank you for your tremendous support over the past week.  Never have John and I felt so supported and loved. 

I haven't come on here and written an entry for awhile for a few reasons.  The first was that John was having so many ups and downs.  When he was having his downs, I guess I didn't want to get on here and let you all know.  Also, I didn't have access to a computer for about a day.  So now I will do an update on John.

John's condition has been kind of curious.  He has had several doses of IVIG to treat his illness.  His body does not appear to have responded yet.  But the oncologist told me yesterday not to get upset.  The IVIG can take up to 10 to 14 days to work.  Ten days will be Thursday.  So the doctors will begin to gage at that point if the IVIG treatment has worked.  There have been lots of ups and downs this week, because it had been looking like it had worked, and then no, and then yes, and then no, and now possibly yes.  It is so hard to tell.  We will just have to wait until time is up and see how he does.  If there is another treatment if the IVIG doesn't work, I am not sure.  Maybe they will try chemo again like they tried the first week John was diagnosed with Autoimmune Hemolytic Anemia.  

John is still very weak.  He is also on dialysis almost everyday.  His status has changed from temporary dialysis to intermediate dialysis.  The kidney specialist told us that John is heading towards being on lifetime dialysis, but he is not sure.  The kidney doctor said that sometime this week John is going to have a permaport put in his chest, instead of the line sticking out of his neck.  It will be much safer.  It will come out of his chest, but it will still be routed through his jugular. 

The dialysis machine is not the worst thing in the world.  He is only on it three or four hours a day then he is off.  If John has to beon that every day in the future, he will be off of it a lot of the time, and he will be able to walk around while he is not on it, do a lot of things, and walk in the sunshine.  It's not so bad.  It looks like a soft serve ice cream machine, LOL.  But it makes a LOT of noise.  I stay with him while he is on it, 'cause he likes that.  The worst thing that we both feel about it is that we both feel very vulnerable.  Especially him.  We discussed this.  He said he felt vulnerable because he needed the machine to stay alive.  If he doesn't have it for some reason (can't get to it) for longer than 24 to 48 hours then he won't survive.  He doesn't like being so dependent on a machine to remove toxins and keep his electrolytes stable.  

The biggest thing I am worried about though is whether or not the IVIG will work to cure the AHA.  John can't go on indefinitely getting 2 - 7 bags of blood a day like he has been getting without them finding a cure to stop him from needing all that blood.  His body is breaking down the red blood cells, and this must stop.  Also, he sometimes has heart problems when his red blood cells are low, and now has had a very large plunging in his platelets.  

Okay, I guess this is getting real medically technical.  Didn't mean to do that.  

So how am I doing?  Sometimes I get tired.  I get to the hospital early in the morning and stay till about 8:30 at night, helping the nurses take care of John.  And you know what?  I wouldn't trade it for the world.  Because I love him so much.  

I decided today I was going to go to K-Mart and find a hobby to do while John is doing dialysis and just sleeping in the hospital.  A diversion for my mind.  Just sitting there mindlessly can numb your mind, LOL. 

Okay, how am I really doing?  I am getting by.  Keeping myself steady.  I am doing fine for somebody in my position I think.  On the other hand, I realize there are some very real issues I need to deal with.  There is a psych nurse here at the hospital that comes to talk to me.  She is helping me, and tomorrow she is going to talk to me about some more of the serious issues.  Okay, even though I hold it together, sometimes I cry.

I want to finish up by saying thank you all who are sending John and me cards, donating blood, writing entries for The Gazette that Tammy started.  Gee, there is so many things to thank you all for.  I love you all more than I can ever tell you.  I read entries to John from The Gazette every morning in his hospital room, and he gets so touched.  I also tell him about the no. of units of blood donated, and I read him the cards you all are sending.  

Well, this is getting too long.  Love everybody,


Wednesday, August 23, 2006

John is Struggling

To all our J-Land Friends:

This is Penny making the entry for Krissy this early morning.

John is really struggling right now.  Krissy and I talked by IM and decided to do the entry this way.  She's just exhausted right now and not able to post.  John and Krissy are so grateful for your love and support while he's in the hospital again. Here is the information Krissy has given me:

Monday night John had a procedure called an IVIG to try to stop the autoimmune hemolytic anemia.  The procedure ran through Monday night until Tuesday morning.  During that time all kinds of complications occured which included breathing and heart problems.

Later on the doctors said that they didn't know if his heart problems (confirmed by an EKG) were because of the IVIG or the autoimmune hemolytic anemia (AHA). AHA means that you don't have enouth blood because your body is just eating it up. During Monday night,John's body didn't have enough blood, so he did not have enough oxygen going to his heart and this could be the reason for the heart problems and the chest pain.

By Tuesday morning he had deteriorated enough to be moved to Intermediary Care Unit.  He had all kinds of machines and wires coming out of him.  On Tuesday he required 6 bags of blood.

He also had sudden further kidney failure and in an emergency procedure, they cut a hole in his neck (jugular) and have a line put in.  He was immediately put on dialysis.  He will receive that for 3 days and then ever other day, perhaps indefinitely.

Please pray.  The doctors are going to try another IVIG to try to turn things around.  Please pray that it works.

Thank you again for all your prayers.  You can't know how much it means to Krissy and John. 



Sunday, August 20, 2006

Please do your entry tomorrow

I am asking you all to please do your entry tomorrow to celebrate the AOL Journals 3rd Year Anniversary.

It is explained here:

click on -------->   My Past Year in J-Land

I am also asking you to leave a link to your entry under here or under my original entry where I first posted about it.  Maybe I can compile the links so we can read each other's entries, so that we don't miss anybody.  

Next I would like to say, that for those of you who know me and John, to go ahead and do your anniversary entry.  Do not let what is happening with John stop you from doing so.  One of the last times he was in the hospital, some of you said you didn't want to do an assignment I proposed (a Scavenger Hunt assignment), because you didn't feel it was right, because of John being ill.  Well, I want to let you know,  John WANTS you to do this anniversary entry on Monday.  We discussed this.  John wants everybody to go on living.  This may seem like a trivial thing to you, but celebrating why J-Land and journaling is important is, well, an important thing in our lives, or we wouldn't be doing journaling or be a part of J-Land.  John said he wants us to celebrate the things in our life that are important to us.  He told me to tell you all this. 

Okay, enough said.  Before I get weepy, LOL.  I hope everybody participates.

Love you all, Krissy :)      

John always has something going on

As I sit here at the computer at Hershey Medical Center I am kind of struggling.  I just came upstairs from John's bedside and I hate to see him sick.  He has something called autoimmune hemolytic anemia.  He seems pretty weak. He is requiring two to four bags of blood a day.  What is going on is his red blood cells are fighting against his red blood cells and eating them up.  Or something like that.  I don't really understand it.  Cathy, stop laughing at my explanation, LOL.  Anyway, it is pretty serious.  They said if he had come two days later, he would have passed away.  But he didn't, he lived.  So I am grateful.

So the units of blood are keeping John alive while the doctors attempt to treat the problem.  They are giving him prednisone (100 MGs a day) plus chemo (for at least four weeks) until he improves.  All that time (plus longer) he will be getting blood.  We could be here at the transplant center/hospital for four to seven weeks.

Meanwhile, he has an additional, unrelated problem.  His kidneys are breaking down.  He only has 25% function left in them.  When they lose 10% more function John is going to be put on dialysis.  I thought dialysis was a machine you have to be on 24/7, but found it is something you are on like every other day, which is good.  Although the kidney doc said it would probably be for John's lifetime that he would be on dialysis, a new good friend of mine said that you can sometimes fight to get off of it. ;)  John is a fighter, I know he will try. :)

So that is about it.  How am I doing?  Somewhat stressed but definitely hanging in there.  Only stressed because I am disappointed for John, but very much glad he is alive, and believing he will pull through.

Please say prayers, and I love you all.  Krissy

Wednesday, August 16, 2006

John's in the hospital again

Here I am sitting at the computer up at Hershey, John's transplant center.  I've left him for just a few minutes while he gets some sleep. 

We came up here last night.  John's fever was 104.2 last night so they told us to come in.  It was a two and a half hour ride, and rough for John, but we made it.  John's fever is still high, even though the hospital still continues to give him frequent doses of tylenol.  

When John got here, they stuck him and did blood work.  They immediately noticed he was short on red blood cells.  This is strange, because on Monday he got two bags of red blood cells.  But the tests showed that he needed more cells.  So all today (Wednesday) they have been giving him blood.  He is on his fourth bag of blood right now.  This should be the last one.  

Unfortunately, John was having chest pains today before he got his blood.  The doctor believed this is because his oxygen level is low (because he doesn't have enough red blood cells), and this effected his heart.  So they did some kind of a test, and have him hooked up to a heart monitor all the time.  Also, since last night they have had him on oxygen.  And fluids, and two kinds of antibiotics.  Poor guy has four bags hanging off his pole.  And two catheters that the nurses had to put in his arms to allow fluids/blood to enter his body.

Okay, maybe I am getting too graphic here.  I don't know why I always get technical.  Just passing everything along.

Please pray.  I am a little bit scared this time.  Not a lot, just a little.  The doctors have no idea what is going on.

Thanks, love you all, Krissy 

Tuesday, August 15, 2006

monday morning question


Open the dictionary and pick a word at random.  What is the word?  Leave it in the comments section, along with it's meaning!

My answer:  freebooter.  n. A person who pillages and plunders; especially a pirate; a buccaneer

Photo Scavenger Hunt #87 Participants...

Hi you all.  This week we wanted to show you some winter scenes so you could feel a lot cooler.  Thank you all who participated.  And thank you Linda who inspired this hunt. 

This week's topic was:  summer/winter 

Here are the participants:

Northern Trip 

Linda's World

Footprints in the Sand


Notice:  We will NOT be having a Photo Scavenger Hunt this week.  We will be taking one week off.  We will resume next week.  It's a busy time in most of our lives, I thought we could use a break!

Love you all, Krissy :) 

Hi, we're home!

Hi!  Just wanted to let you all know that John and I are home.  We went to his appointment yesterday in Hershey at his transplant center.  There were a few things wrong with him, but fortunately his fever had come down.  So we did not have to stay overnight.  But he was very low on red blood cells.  So they put him in the hospital for the day and gave him two bags of red blood cells.  It took all day and we got home about eleven at night.  But at least we got home last night!  Yay!  John was feeling weak before the cells but is feeling extremely better now that he has gotten the blood.  They gave him an appointment to come back in three weeks.  Meanwhile, he has to get his blood drawn three times a week locally, and I guess they will transfuse him locally again if he needs it. 

Oh sheesh, I just talked to John, he took his temp this morning a little while ago and his temp was 102.2.  That's high for a bone marrow transplant patient.  I hope we don't have to go back to Hershey.  Stay tuned...


Sunday, August 13, 2006

Sorry I can't post your links tonight

I'm really sorry.  I'm not going to be able to post the links to the Photo Scavenger Hunt entries or post a Monday Morning Question tonight.  I'm busy packing.  John has developed a high fever and we may have to go to Hershey (his bone marrow transplant center) in the middle of the night if his fever goes up.  If we don't go tonight, we are going tomorrow for his routine check up.  If he is still feverish tomorrow, they might keep him, if he is not, they will send him home.  If they keep him, I am going to stay with him.  Hopefully, it will only be for a couple of days.

I am hoping they won't keep him at all.  If that's the case, I will be back on Tuesday to post the links to you alls' Photo Scavenger Hunt entries, and do a Tuesday Morning Question.

Well, that's about it.  Please pray!

Krissy :)

A new Anniversary Journal

A new journal has been created to keep us updated of the events of AOL Journals 3rd Anniversary.  It was created to keep us abreast of all of the anniversary activities.   

Go take a peek at the journal.  One of the things it has is a mention of a cool event that has taken place today.  A preview of Stevie's video has been announced. 

Don't forget to put the journal on your alerts!  

click here ------> 3rd Anniversary - AOL Journals    


Announcing a J-Land Activity: My Past Year in J-Land


I wanted to announce an activity for the upcoming AOL Journals 3rd Anniversary.

It's called     My Past Year in J-Land

I came up with this idea because I thought it was important to share about this past year.  So much has gone on this past year.  There have been many ups and downs.  I thought it would be important for each of us to capture this in an entry.

There are lots of things we could write about.

We have survived the ads situation, and witnessed our beloved Pam going to Heaven.

We could write about the new friends we have made in J-Land, about journaling, about why we like to journal, what we like to journal about, our favorite memes.  These are only suggestions.  Let's use our imaginations.

Why do I suggest we do this?  Because I believe a celebration is much deeper than a shouting of a Woo Hoo!  There has been much that has gone on in the past year that has made us a close knit community.  I want to celebrate and talk about those things about why we love each other.  Personally, I want to write about how others were there for me when my husband got cancer and had his bone marrow transplant.  People sent us letters and cards.  They sent John gifts and things he would need in the hospital.  They prayed for us and gave us constant support.  They still continue to support us on a daily basis.  I want to honor THIS in my journal.  This is how I want to celebrate the 3rd Year Journals Anniversary in J-Land.

On Monday, August 21, AOL Journals 3rd Anniversary, let's all write an entry in our journals.  We can call it:

                           My Past Year in J-Land

I can't wait to see you all's entries! 
Krissy :)                                     


Friday, August 11, 2006

of Chelsea and of the Video

Just wanted to let you all know that Chelsea has not given birth yet.  A couple of days ago she was in labor, but it was not hard enough labor, so they sent her home from the hospital to walk around.  Val is down in Florida with her right now.  

On another note, I just sent a photo of myself to Stevie.  You remember, I mentioned him a couple of entries ago.  He is putting together a video for us for AOLs 3rd Journals Anniversary.  I am really excited about it.  This video will be a way where we can see all of our friends in J-Land.  That's way cool to me.  If you want to be in it, send your photo to Stevie of ~Thelife of Stevie ~.  You have to hurry up though, 'cause the deadline is this Sunday the 13th.  

Well, that's about it, Krissy :)            

Wednesday, August 9, 2006

Chelsea's in labor

Hi!  I just wanted to let you all know that my niece Chelsea, Val's daughter, is in labor right now. I thought I would tell you, because many of you know Val.  Please keep her and the baby in your prayers.  This will be Chelsea's first baby.

On another note, I thought I would give you a quick update on John.  He's doing alright.  He says he feels pretty good.  He still has the kidney problem.  Actually, we will go to Hershey on Monday to find out what his Creatinin level is.  Just a one day stay.  So I can tell you more then.  One thing that I am not so pleased about are his white and red blood cell counts.  They have plummeted.  He had been getting shots regularly to keep both counts high, but didn't get them for one week because he had toenail surgery.  Now his white cell count is so low it is kind of dangerous.  But it has been this low before, so he will just wear his mask everywhere.  He will also have to continue getting shots for his white and red cells.  I am kind of disappointed.  His scores were SO high, just a little over a week ago.  I thought his body was doing this on it's own.  Now that the shots have been removed, I see it is all artificial.  He just plummets right back down.  When is his body going to start acting right on it's own?  At least it has been a month since he has had to be hospitalized, and I thank God for that!

I have a question for you all.

Here goes.  Would you all like to see a short write up, actually, mostly just photos, of the last time John was hospitalized?  The time we were there for two months.  I kind of wanted to include them in my journal because they are a part of John and my life.  But you may just want me to move on.  Or I could put them in my private journal (John's Journey With MDS).  

Please let me know in the comments.  You can say:  show them, move on, or post in your private journal.   

I love you guys!  Krissy :)

Tuesday, August 8, 2006

3rd Yr AOL Journal Anniv Celebration!

On August 21st we will celebrate the 3rd Anniversary of AOL Journals.  This is our chance, you all, to make this happening what we want it to be.  Much has happened this year.  Some ups, some downs.  While some things will never be the same, let us take time to celebrate.  Let us not let this anniversary go by without marking it in a meaningful way. 

For the 3 Year Celebration of AOL Journals, there are already a lot of activities planned and underway.  If you want to keep abreast of these, please put Nwanyioma's Journal on alerts.

Edit: Please put this journal on your alerts: 3rd Anniversary - AOL Journals 

Journalseditor Joe has made us an AOL Journals 3-Year Anniversary badge to put in our All About Me Section. 

D, from This and that, and hockey! has created many outstanding graphics for us to put in our journal, to help us celebrate.  She is also doing a CONTEST for what will be the official 3rd year tag.  It is beautiful and features a lighthouse.  Scoot over to her journal and submit a caption that you would like to see on the lighthouse graphic, and yours just might be selected!

Stevietwain is doing a J~Land 3rd Anniversary Tribute Video.  Hop over to his journal to find out what you need to do to be part of a video he is putting together of J-Landers.  It's simple, just submit a photo.  Well, go on over, he'll explain it to you.

Shelly of XXRoxyMamaXX is doing a Memorial Quilt.  You can submit names of your loved ones and friends.

Sugar is doing a Pet Memorial Page for those who have lost a pet in the past three years.

We will, of course, have a chat on August 21st.  More details to follow.

Edit:  The chat will be on August 20th. 

If you would like, please announce this information in your journal.  

Now let's go make this an Anniversary to remember!

Krissy :)  


Monday, August 7, 2006

monday morning question


Do you like SPAM?  If yes, then could you share your favorite SPAM recipe with us?


My answer:  No, I don't like it.  Once I thought I would give it one more chance.  So I made Country Fried SPAM, LOL.  With gravy!  It only made it worse!  How about you?  Krissy :)

photo scavenger hunt #87


The entries for Scavenger Hunt #87 will be due on Sunday, August 13 at 11:00 PM EST.

The subject this week is: Summer/Winter

It works like this.  Go outside and take a photo of anything.  Maybe let us see how your yard looks in the hot summer.  Then go through your old photos and find one where snow abounds, maybe your yard covered in snow.  These are just guidelines, do what you want.  Then post the pictures.  This will perhaps help us to cool off.  If not, we can at least look at some cool shots!  Happy posting!  Krissy :)

Photo Scavenger Hunt #86 Participants...

Hello photographers and friends!  This week we have some really great photography to showcase for you.  So let's get to viewing your fantastic works.

This week's topic was: photo(s) of your choice

Here are the participants:

This Momma's Drama 

My Photo Journey


Ye Olde English Posy

Lost in my own thoughts

Photo Trek

Linda's World

Welcome to my travels

Holiday photos

A Couple of Nomads

Footprints in the Sand

Confessions Of An Angel Waitress (topic: glass)

Tuesday, August 1, 2006

AOL Tech Support


              Graphic by Georgette.  Visit her at Chronicle of a Meandering Traveller.

Related Posts Plugin for WordPress, Blogger...