Slow going

It's a little suprising how slow recovery has been. I tend to feel great when I take it easy and lie down most of the day, but when I push myself, fatigue and my stomach problems get the best of me. I am feeling better every day, but I'm definately not 100% by any means.

My blood counts are good, but my immune system is so immature and I have so few anti-bodies that I'm still on heavy restrictions. No public places, no sick visitors, no restaurants, no take out, etc. I can't wait until those restrictions are gone.

Off and On

It's day +22. I'm still at home and haven't had any fevers. I know I haven't been blogging as much, but that's because I'm not in the hospital and there's a lot less to report. My GI track is still quite affected. My stomach hurts a bunch, regardless of what I eat.

I have off times and on times. Sometimes I feel like a million bucks, other times I'm run down and feel like crap. It's tough to predict.

I have my first post transplant checkup with Dr. Ho tomorrow. I'm excited and a little nervous. I hope he says I can come off some restrictions in less than 100 days.

Happy Birthday John

Today is John Travolta's Birthday. That's what Kate just told me. To me it's day +18 and I've been home for 2 days. I'm feeling better every day. I still have a little bit of stomach trouble, but mostly I feel tired. I don't really feel sick, which sucks because I know I still can't be in public places or go to other people's houses or work. It would be easier if I felt god awful sick... it would be a helpful reminder of why I can't do those things. Don't get me wrong though... I still prefer the stir crazy and tired to the bed ridden sickeness.

The home life

Well, I'm at home now. I can go outside and in the car, but I'm not allowed in public buildings or other people's houses yet. My immune system is still too weak.

It's nice to be home in my own bed with my wife and dog. Just that does so much to help me recouperate faster. I already feel better than when I was in the hospital. I still feel very very worn out though, kinda like a Mac truck hit me.

For now it's great, but I think being confined to the house will make me stir crazy just as I was when confined to the hospital room.

Still, best thing is I'm at home with Kate.

Free at last

So, it's almost official. I have a couple of bags of IV fluid to go through and then they will take my hickman out and I should be out of here early this afternoon. Only 23 days after getting here and 2 days past my original release date.

They say I'll still feel like crap for about 2 weeks, but I'd rather feel like crap at home than here. :)

Thanks to everyone for all the cards! They filled my wall and reminded me of all the people who care!

Day ++1

It's day +15 now. Maybe I should call it day ++1 (expected release date plus one). Anyways, they say I'm comming home tomorrow as long as I drink my water. All else is good. They have to teach me some home care stuff with Kate this afternoon and then they should take out my catheter in the morning and hopefully send me on my way.

The only bad thing to report is that I had this horrible throat closing nausea last night. It felt like my through was closing in on itself and it was getting to my gag reflex, which was making me nauseaous. They're pretty sure it was due to withdrawl from morphine and they gave me some meds to take care of it.

Well, let's hope for tomorrow! I can't wait to see my girls.

Sleeping beauty

So, it's day +14 now. I've been here for 21 days. Today was my tenative release date, but they say I'm not quite ready to go home. My counts are up to about 6.5 or so, but they still have to wean me off all of the anti-biotics I've been on. I also have to be able to drink 1 and half of the little pitchers of water in a day before they let me go. (to make sure I don't dehydrate) They did take me off the morphine for the mouth pain today and they said my stomach infection is gone.

I've been able to eat a little again. Mostly yogurt and oatmeal, but I hadn't really eaten in the last 3 or 4 days. In fact, I probably spent 45 of the last 48 hours sleeping. The transplant just kinda wiped me out. It's not like I wanted to sleep, it's like I had no choice. Made me feel pretty worn out and lousy.

I was originally supposed to leave today, but hopefully tomorrow. I was hoping to get to spend valentines with my beautiful wife, but that's not gonna happen. She said she'd still be my valentine anyways. Gosh I love her.

So, now I gotta get weaned off the last of the drugs, drink my water, and wait for my home care instructions, then I'm on my way home. Let's hope for tomorrow!

The home stretch

So, I had a post started yestday talking about how it was day 11 and my wbc counts were up to about 0.87 but I was still feeling kinda misserable and that's why I hadn't posted in 2 days. Well, I thought I saved that to a draft so that I could finish it later, but it seems to have disappeared.

So, now it's day 12. My WBC count is up to about 2 today! That's almost what it was when I got here. They still have to run a differential on that, but one of the deciding factors before they can let me go home is my differential on a certian type of white cell must be 0.50. That means if 50% of the white cells are the type I need, and my count is 1.0, the differential count is 0.50. With a count of about 2, there's a darn good chance I'll be heading home soon.

Now I have every doctor aksing "How's your support system at home?", "Do you have people that can take you to clinic appointments?", "Do you have a way (other than yourself) to keep your house clean?"....
Shouldn't they have asked this before killing off all my bone marrow?

So, the good news is, I should be heading home wednesday or thursdays at this rate. I'm on so many anti-biotics and other support drugs that they can't just pull me off all of them at once, they have to wean me. Of course, that means for the first week or two at home and I'm gonna be all out of sorts, not having this constant flow of drugs into me. They're trying hard to get a bunch in my pill though.

is that the end of the tunnel up ahead?

Yesterday (day +8) was another one of the fevers / chills / sleeping / feeling like crap kept me in bed days. It's the morning of day +9 now. They told me to worst of the days would be +3-+9. Well, last night, to add to the fevers and chills, I came down with diarrhea. Not like the "trots", more like the "shouldn't that be solids". I don't need to sprint to the bathroom, but by stomach hurts and there definately is nothing solid about what comes out. The fun part, they have to collect it in this plastic hat thingy to make sure I don't have an intestintal infection.... fun for all.

Kate came up again last night. I fell asleep on her a number of times. She's very good to me though. She came up because she has the show this weekend, so she knew she wouldn't get as many chances this weekend. I still say she's doing to much.

Some good news from the Docs this morning! My white blood cell count was 0.11 this morning. Since I had my transplant, the white blood cell count has been between 0.04 and 0.08, oscillating each day due to statistical noise. 0.11 is defininately outside of the noise range, so it looks like my cells are starting to work and they expect my white blood cell count to start rising sharply now. That should help to get me out of here on time.... :)

HUH?!?

So, it's day +7 that means only a week left and that I should be feeling the dumpiest days right about now.

Today was a day full of confusions as well as some pains and plenty of sleeping.
So, it turns out that morphine tends to give very vivid dreams. Not scary dreams or anything, just very vivid. As an example, when I first woke up this morninging, I had been dreaming about being in my hospital room. When I woke up I was very confused. Had I just woken up, or had I just fallen asleep? Kinda trippy.

I finally figured out that the mouth pain was much worse, so I was awake. Add to the mouth pain and the confusion a 103.3 fever, and I was knocked out for most of the morning drifting in and out of conciousness. Then I had some med students come talk to me on their practicums. Hope I was coherent. Same for when Kara came to visit today.

This cycle of awake - asleep / coherent-incoherent / fever - broken fever / trippy - not trippy lasted well into the night. Then my favorite quote of the day when the nurse came in to tell me she had me and woke me from a deep sleep(sums up the way I felt all day)

Nurse: "I'll be your nurse on this next shift"
Jason: "Great! What time is it?"
Nurse: "9"
Jason: "AM?"
Nurse: "No, No, PM".

You see, I thought I had slept for at least 13 hours, in reality, it was 1.

Thanks for the support

I finally got up to check my blog. Thank you all for all of the encouraging comments!

As far as visitors went, I had Kate here yesterday, which is always nice. I also had visits from the Doctor team and some med students, but they don't count. It's always nice to see Kate and she has this magical ability to make me feel better, but with all the throat pain and off and on fevers, I was a little crabby. She pointed it out to me (she's not one to sugar-coat) but she took it in stride and kept giving me what I needed. She's really up for wife of the year award.

Like I've said, the fevers and throat pain have been really crazy. One of the problems with a fever is that I can't get blood or platelet transfusions if my temp is above 100F. This is because the body temp just kills off the cells. Well, my temp will often flirt with the limit and stay at like 99.8 and then all of the sudden I'll feel hot and flush and then have the chills and by that point my temp's usually up to like 102. Each time I spike they have to give me tylenol and get up to date blood and urine cultures to check for infection. If my fever is particually bad, I'll wake up shivering uncontrollably... not fun. I can usually tell when my fever breaks because I sweat like crazy for a while and then feel much better.

Yesterday was particually bad because I needed platelets and red blood cells, but it took a while to get my fever under control to give me the platelets. In order to control my mouth pain, I was all hopped up on morphine and then they had to give me benedryl with my transfusion (standard procedure). Well, that made me semi-comotous. It's really hard to keep up with the morphine drip button in that state, so I was half contious, cycling between semi-awake with crazy-pain, and out-like-a-light with no pain. My fever came back after my first bag of red blood cells, so I was only able to get one of the two.

My nurse Marsha convinced me to go onto a continuous morphine drip with the button to boost the effect when I wanted to eat. That seems to have broken the nasty sleep/wake pain/no-pain cycle. I was able to keep under the fever radar (i.e. below 100F) long enough to get 2 bags of blood today. They also increased my morphine dosage today. That has really helped to get the pain under control. Of course, since I started writing this, my temp has spiked again. 102F. That means more blood cultures and all. Hopefully I won't get the crazy chills and sweats tonight.

Kara and Brian came and visited me today. They both work in the area, so it's easy for them to stop by. Still, they've always been really good friends and it's always nice to see them.

Today is day 6. That means I started my neupogen shots yesterday and if all goes to schedule, I should engraft in the next 4-6 days for so. That means, if we stick on schedule, I'll be out of here in 8 days. I can't wait.

Slow couple of days

I apologize to everyone that's been following along that I haven't posted in the last 2 days. It's day +5 now and the puts me right on schedule for intense throat pain and fevers.

I've spent the last two days mostly in bed fighting fevers and pain.

Will post more details soon.

Day +3

Last night my throat pain went from uncomfortable to very painful like flipping a switch. They upped me to Morphine which helps with the pain but makes me sleep. I am on a drip so that I can get the Morphine when I need it. I had my first fever last night but it came down on its own.
My menu for the next five days or so looks like Jello, pudding, and popcicles. At least that is better than tofu stir fry.
In answer to Uncle Marty's question, I actually have a decent of view of the hills on the edge of the city.
Kate's brothers came to visit me today with Kate. They brought delicious icy things and we watched stupid movies.
I have enjoyed getting cards in the mail so please feel free to send them to my room number at Brigham and Women Hospital:
Jason Holmes
Floor 6C Room 53
Brigham and Women Hospital
75 Francis Street
Boston, MA 02115

Okay, now I am getting sleepy and need to go back to bed.

So fa so goo

Day +2 has been a pretty lazy day. My throat is really hurting now so I got some pain killers for it this morning. The pain actually woke me up. At least the pain meds work to keep it under control.

I slept in a bit this morning and then Dad called saying he was gonna come visit. I had my nurse unhook me from the IV so I could shower and then Dad showed up shortly after I got out. He brought two cards with him. I love getting cards. One of the cards had a hand colored airplane and a hand written note from Skip saying get better soon. It's the cutest thing and really made me smile. Thanks Skip!

I had to get some more blood in the afternoon since my counts were low again. This should help me feel better but I had to take benedryl before the infusion (standard protocol) so I basically slept from the time Dad left until just now.

Like I said, lazy day.

Who cares about the freaking light?

So, I've been here for 7 days now. I'm really itching to leave already. The good news is that 7 days is 1/3 of my time here. Only about 14 to go.

Today had some agrevating points and some nice points. My mouth and throat are starting to get more sore, but I expected that. This morning, at about 10:00 or so, a maintainence person came in to check on the light that was broken in the room. It had been broken ever since I showed up a week ago. He took a look and then said he'd have to call someone else. Since I had only experienced the room with the light broken, I told him that I didn't mind if they didn't fix it until I left. He said "OK".

About 20 minutes later another guy shows up and says he's here to fix the light. That's right about the time my grandparents Dede and Grandpa called from Curacao. I was really excited to hear from them and wanted to let them know how I was doing but this jerk didn't take the clue that I was avoiding him and trying to talk on this international phone call. He decides that he needs to move my bed and a bunch of other things so he can get at the light. No need for a tranplant patient to have access to his bed right?

Anyways, it was good to hear from Dede and Grandpa and that at least made things ok. But then this guy decides he's gonna take apart the whole light fixture to get to the wires so he can remove it to replace it. That takes like 30 minutes during which I had to just sit here in the dark. It's not like I can go to the cafeteria for a break or something. Long story short, he eventually replaces the light (which I didn't really care about) and then puts the bed back in place so that I can actually lie down.

As if that hassle wasn't enough, auditors at the hospital randomly selected my file to review, so my nurse (mind you, my nurse today was a new one to me) had to be off answering questions to the auditors for a couple of hours. Big hassle for her since she only knew me for 10 minutes before hand. Big hassle for me becuase I couldn't really get any nursing service for most of the morning.

After my nurse returned, however, my other grandparents, Nana and Papa, gave me a call and told me they were gonna stop by for a visit. That was great to hear... both sets of grandparents in one day. I took a shower before they got here and got to visit with Nana for about an hour. Papa couldn't wear the masks that are required becuase they were too hard to breath through, so I said "hi" through the glass in the door.

Ever since they left I've eaten dinner, chatted with Kate, and played PS2. So all in all, a day of frustration but also nice pick me ups. Ahhh... only 14 more to go.

On the positive side

Day +1. I'm finally on the positive side.

Pretty boring morning. My mouth and throat are starting to get uncomfortable, but that's to be expected since my counts are down. It's called esophagitis - i.e. sores in the esophagus.