Day 38

Today is Monday, Day 38 and I’ve had 3 relatively good days in a row. Not only that, but I’ve been able to get in walks outside for about 15 minutes on each of those days.

If things continue to go as they have where there isn’t much to report for each day, I may spread out these updates even more. In other words, you can assume that no news is good news. However, please don’t forget about me because I feel like I really need your prayers and positive thoughts. I don’t take them for granted and I express gratitude to my God every day.

Hoping the good days continue while knowing that some won’t feel so good,
Justin

Day 35

Wednesday, Day 33 was one my best days in quite a while; I had a bit more energy all day.

Thursday, Day 34 started out well, I was in at the clinic for a couple of hours in the afternoon which kind of wore me out, and was pretty tired by evening. My blood counts were down a little, but they say the counts never just go steadily in one direction, and the counts are still looking good. It appears my weight loss is slowing as I only lost 2 pounds during the week instead of 5 or more. The doctor is OK with it, but the PA is concerned and wants me to keep track of what I eat. The doctor also said that the loss of appetite could be a mild form of graft vs. host disease (GVHD).
WBC – 5.3
Hgb – 11.3
Plt – 227

Today, Day 35 is back to a lower energy than Wednesday or Thursday, but still not too bad. I’m starting to wonder if I’m seeing improvement week to week instead of day to day (which I really can’t see).

Well, today is 5 weeks post transplant and I’m still home and doing well.

Love,
Justin

Day 32

Yesterday, Day 31 (one month anniversary of the actual transplant!), I spent much of the day getting a new Hickman catheter placed. It was supposed to happen at 1:00 PM, and I was supposed to go into the clinic at about 12:30, so I got a ride and left home at shortly after noon. After getting my tests done at the clinic, they said they were running behind at the hospital where the central lines are done so it would be closer to 2:00. (BTW, the hospital and clinic are on the same campus, just a few hundred yards apart.) Well I didn’t actually see the surgeon until about 4:00 PM and didn’t get home until almost 5:30PM. It seemed like a long time to be sitting around waiting for a fairly simple procedure, but I guess it wasn’t much worse than sitting around at home.

I got a glimpse at my blood counts:
WBC – 5.5
Hgb – 12.1
Plt – 272

So they are continuing to look good. Only my hemoglobin is below normal (14), but it continues to rise.

Today, Day 32, I felt extra tired all day and wound up sleeping a good deal into the afternoon. When I sleep (night or day), it’s never for long stretches. At night I’m glad if I get one or two stretches of 2 hours. The rest of the time, I generally only sleep for a half hour or hour at a stretch.

Your tired but feeling good friend,
Justin

Day 30

I don’t have much to report. Friday was OK, but not great, Saturday was better, and today, Sunday, was even better (most of the day). I’m starting to feel a little worse and more fatigued here in the evening. Maybe I tried to do too much today, even though it wouldn’t seem like a lot if I described it.

Tomorrow, I’m scheduled to get my PICC removed and a new Hickman catheter implanted.

I’ll let you know here if anything big comes up.

Feeling pretty good,
Justin

Day 27

Tuesday, Day 25, was an extreme fatigue day in which by the end of the day, I felt totally exhausted and therefore kind crummy all over.

Wednesday, Day 26, was a much better day. The thing is, I’m fatigued all the time, but if it’s not extreme and doesn’t get worse during the day, I feel like it’s a good day. The good days are good relative to the not so good days.

Today, Day 27, it’s somewhere between a good day and bad day. This morning, I went for my weekly clinic visit and got some exciting news. As a result of last week’s bone marrow biopsy, we found that 100% of the bone marrow is from donor cells and there is no evidence at all of any host cells or excessive blasts from the host cells. Most people see this around Day 30, and mine showed at Day 21. This doesn’t mean I’m cured, but it does mean that the transplant totally took and wiped out the diseased marrow, and that’s big. We’re all still wondering if and how the GVHD will be manifested.

My blood counts today were also quite good today with my Hgb and Plt both up.
WBC – 4.1
Hgb – 11.8
Plt – 223

I was talking to one of the nurses this morning about my constant fatigue and she said it’s normal. I said that I had to give up on the idea of getting a little stronger every day and she said that was true and that I would feel better rather suddenly. When I asked when that might happen, she said after about 6 months! K

There is a little concern about my rapid weight loss ( 30 – 35 pounds in the last 4 or so weeks), but my doctor is not too concerned because he says he often has to slow patients down on the eating later.

Finally, I’m scheduled to get my PICC replaced by a double lumen Hickman catheter on Monday. The doctor said he doesn’t like to leave a PICC in for more than about 3 weeks because they can get clogged and infected more easily than a Hickman. The double lumen Hickman is just like the one I had in before except that it has two lines instead of three. He says I will need some kind of central catheter for at least another 8 to 10 weeks.

A day at a time.

Love,
Justin

Day 24

Sunday and Monday, Days 23 and 24 were pretty similar to Day 22 in that I have not been feeling bad at all and have been able to eat, but also have had a pretty high level of fatigue most of the time. I am grateful to be feeling pretty good and for not getting fevers, but I think there has been a part of me that was hoping I would feel a little stronger every day, and I’m not noticing that. So once again, I’m realizing this is a long process and I need to be patient. I really am grateful that I’m doing as well as I am and that I’m at home and not in the hospital.

Sunday, I finished my Vancomycin, which is the antibiotic I’ve been taking twice a day intravenously for several weeks to clear up the MRSE infection I got in the hospital. I’ll be interested to see if I feel any better after stopping it, because the doctor said it can cause fevers and lack of appetite.

Hanging in there with your help,
Justin

Day 22 - catching up

First of all, let me apologize again for being so negligent in keeping this blog updated. I know some of you may worry when I don’t write for a while. The bottom line is I have good days and not so good days, but overall, I’m doing fine.

I did come home on Tuesday (Day 18) after they put a PICC in my arm. It was a bit difficult for the surgeon (and consequently for me) because I have an unusual vein structure in my arm so where most people have a single vein, mine splits into two, and the surgeon started down the wrong split. When she discovered the problem, it went in fine.

Wednesday (Day 19), I was extremely fatigued even though I don’t think I had much of a fever.

Thursday (Day 20), I went in for my second weekly clinic visit. They were very pleased with my blood counts.
WBC 4.3
Hgb 10.5
Plt 176

Friday (Day 21), I went back to the clinic for a bone marrow biopsy/aspiration. It was probably the least painful of the 7 bone marrow biopsies I’ve had. The PA who did it did an excellent job. They’re sending samples of my circulating blood as well as the bone marrow samples off for cytogenetic testing. The PA predicted that the percentage of stem cells from the new bone marrow in the circulating blood would be 100%, and the percentage in the marrow at 95%. We won’t know all the results for at least 2 weeks however. Later in the day, I ran a pretty high fever which made me feel a bit lousy but mostly stole my appetite and sapped my energy levels again.

Today (Day 22), I’ve had a pretty good day so far.

Again, I won’t be making entries every day, but will try hard to do it every 2 or 3 days instead of 5. Thank you for caring and for supporting me through all of this.

Love,
Justin

Day +17

Today was the first day in a while where my temperature stayed below 100°. In addition, my blood cultures have all continued to come up negative. As a result, there is a good chance I will be able to come home again tomorrow. The main thing that would prevent it is if something like another fever or GVHD shows up between now and tomorrow morning. It feels much better to have no fever and be able to eat something. The other thing they are likely to do before I leave tomorrow is install some kind of new line – either another Hickman catheter or what they refer to as a PICC (peripherally inserted central catheter) line which is put in the upper arm and threaded through a vein to the jugular. It is a central line and is much easier to install, but only has one lumen (line), whereas the Hickman has three lumens.

I may also have to continue my antibiotic (called Vancomycin) for another week or two because they’re not convinced that my fevers were not caused by some kind of infection. One interesting tidbit I learned about this antibiotic is that while I thought it was a powerful antibiotic because it was the third one they gave me, the doctor says it is not considered powerful, but is good at fighting the kind of blood infection I had (called MRSE), whereas penicillin is not. It actually doesn’t kill bacteria as much as just keep it from spreading, allowing the immune system to knock out the existing infection. I like that idea.

They doctors are very pleased with my blood counts, especially the platelets, and feel I probably won’t need transfusions any more.

WBC – 4.1
Hgb – 10.5
Plt – 122

It would be nice to go home tomorrow.

Love,
Justin

Eric Masson,
I’ve marked October 28 on my calendar and I along with many others who read this blog will keep you in our thoughts and prayers prior to, during, and after your transplant. I’m convinced it helps. If you’d like to email me directly, feel free to do so at jkhyatt[at]bluehen.udel.edu (replacing the [at] with @).

Day +16

Well it’s Sunday evening at the hospital (more or less real time now). It’s been a good day with no high fever yet (8:30 PM), plus I was able to eat something.

The doctor this morning said they won’t know much about the cause of my fevers and loss of appetite until the cultures have cooked a while longer. He said the problem could still be an infection, but it also could be the start of GVHD. If it is GVHD, we should soon see another symptom like skin rash, diarrhea, or a liver problem (jaundice?), and if any of those show up, they will biopsy the appropriate organ. So far, I have no other symptoms. The third possibility is that the drugs could be causing the problems, although I’m not sure which would be the potential culprits. He sort of indicated that if the cultures are negative, I may go home Tuesday, but also said that if I was still here Friday, they would probably do the bone marrow biopsy here. I’m voting for going home on Tuesday.

This evening, the nurse said the cultures are still negative, so it may have been unnecessary to remove the Hickman catheter.

WBC – 5.9
Hgb – 10.1
Plt – 113

Love,
Justin

Day +15

Saturday morning, I woke up feeling pretty good. After giving myself my morning dose of antibiotic, I took my temperature not because I felt bad, but out of curiosity because I used the same line as they had used for magnesium and I was worried that something like an infection in that line might be causing the fevers. My temperature had gone from about 99.5° before to 101.0° after. It came down pretty quickly, but I was concerned, so I called the BMT unit at the hospital. They told me to come in and they would take out the catheter right away which they did after drawing blood cultures. It seemed like they had already decided that that was what they would do if I spiked another fever. They then admitted me again and I developed a pretty high fever that afternoon leaving me feeling wiped with no appetite again. They temperature went up to 101° again, but came back down early Sunday morning.

Part of me wonders whether they took the catheter out partly because it was the start of Labor Day weekend, and they didn’t want to have to call in a surgeon later in the weekend if necessary.

I’m not glad to be back in the hospital, but it’s nice not to have to worry about the fevers at home. Additionally, the cultures they took should give us a clue about what the fevers are about. The problem is that they have to wait up to 48 hours to see if the cultures develop anything, which means Monday is the earliest they would make a decision, but since it is Labor Day, they may not be able to get another catheter or line inserted until Tuesday, so that is probably the earliest I could come home again.

I’m sure it’s helpful that we live so close to the hospital (15 – 20 minutes), because they are more likely to let me ride out a fever at home or send me home sooner than they would if I lived 3 or 4 hours away.

Love,
Justin

Day +14

I’m sorry I haven’t written for a while. I’m actually writing this on Sunday, but I think I’m going to make this just for Friday and then write again. I’m not planning to write every day now. For instance, Thursday was pretty uneventful, so I didn’t plan to write then. On Friday, Day 14, I went in to the bone marrow clinic for my first of some number of weekly outpatient visits. My counts were really good and the doctor seemed almost ecstatic. They had ordered red blood cells to transfuse me, but it turned out they weren’t needed because my hemoglobin went up. My WBC and ANC are both well into the normal range, the platelets are near normal, and the hemoglobin should get there before long. They did give me two hours worth of intravenous magnesium because my levels were so low. My next visit is scheduled for next Thursday, and they also scheduled me for a bone marrow biopsy on Friday.

WBC 5.0
Hgb 10.4
Plt 99
ANC 3.5

Subsequent to the clinic visit, I developed quite a fever in the afternoon, and it lasted well into early Saturday morning. I called the clinic at about 5:00 PM, when I noticed a fever of 100.7° (I’m supposed to call if it exceeds 100.5°) and they told me to come in if I started feeling a lot worse or got shaking chills. My temperature went up to about 101.4°, but I never felt a lot worse, so I just rode it out. My fever broke at about 4:00 AM Saturday morning. I felt really weak from the fever and essentially ate nothing all day Friday, but I was still glad to be at home.

BTW, the hair loss has started in earnest. So far it is mostly coming off the top of my head and is making a mess everywhere I rest my head.

Love,
Justin

Day +12 - I'M HOME!

I’M HOME!!! It’s amazing how good it feels to be at home and not at the hospital. It’s actually been very emotional for me. I’ve wept several times today just from the relief of being at home. Part of that might be that some part of me remembered that one of the possibilities was that I would never make it home from the hospital. I didn’t think about that at a conscious level much at all because I always felt like I would get home, but I’m sure there was a part of me that knew it didn’t have to be that way. Being outside, moving around, eating foods that were actually appealing, sitting on the porch, etc. all felt soooo good. And I’m so much more comfortable here, that I’m sure it will speed my recovery to feeling more normal.

Driving home from the hospital at around noon today, including stopping to get a truckload of drugs at the pharmacy (which took a while), I realized that I was in no hurry. It was a nice day and I had nothing I had to get to. I also realized that for the next 3 or 6 or 12 months, I’m not really going anywhere. Besides doctor’s appointments, there’s nowhere I have to be and it is an amazingly different perspective on my “busy” life. IOW, in my “normal” life, I’m “busy” and often have “somewhere I have to be”. But because I’m sick and can’t do all those things without risking my life, I can take maybe a year off from all that.

Last night at 10:00, my temperature was 100.1°. The nurse said, “Uh oh. If you spike a fever, you won’t be going home tomorrow.” I was a little worried, of course, but was also pretty sure it would go down without spiking, because I didn’t feel very bad and it was sort of a pattern I had seen before. At 11:00, it was at about 99.8°, and when she checked again at about midnight, it was about 99.6°. Then in the morning it was down even more, so my suspicion was borne out.

I have about 10 prescriptions that I take 2 or 3 times a day each. I also take an antibiotic intravenously (through my catheter) which I was shown how to do myself here at home by a nurse who came this evening. It’s interesting, the medicine comes in a ball that contains its own pump in that there’s a spring that keeps the liquid under pressure. It also doesn’t require any help from gravity so I can carry the ball around in my pocket.

My platelet count was up satisfyingly today. It’s definitely being created by my new marrow. My hemoglobin is up primarily because of the transfusion I got yesterday. There will not be daily counts now for a while because I’ll only be having them taken once a week or so unless I wind up back in the hospital for some reason. Also to follow up on yesterday’s normal blood count ranges, I have a sheet here that indicates that for me, normal WBC is 4 – 11, normal Hgb is 14 – 18, and normal Plt is 150 – 400.

WBC 3.3
Hgb 9.8
Plt 38
ANC

BTW, I’ve just corrected yesterday’s blog to add a “not” that I left out about feeling worse by 6:30 PM.

Loving being at home …