Not all smooth sailing

Well, despite the good news about my bone marrow, I still am dealing with having it newly “rebooted.” So with all the cell counts declining it was only a matter of time before I would need some medical intervention.

I was admitted back into the hospital Sunday night. Virginia actually had to call a few times (the first time we were told to take a couple of Tylenol and see them in the morning). Finally, after my temperature had reached above 103 they started to move things along, transferring a non-cancer patient to another part of the hospital, so I could have his room. I’ve since moved two more times and am back in the room that I was originally in when I first started all of this back in March (nothing like coming full circle for the last stay).

My fevers which have been pretty persistent, and in some cases quite high (so far 104.9 is the highest) are due largely in part to a bacterial infection by a strain called Gemella morbillorum. Of course the infectious disease doctors have tailored the antibiotics, but since I still have been getting fevers (although fewer and less severe) they are wondering about other possibilities.

One thing we’ve found out about our stays in the hospital is that there isn’t a whole lot of patience when it comes to seeing if a treatment is working. I’ve already had another echocardiogram to see if the bacteria has seeded in one the valves (which it hasn’t) and an x-ray of my jaw to see if there isn’t a pocket of the buggers hanging out (haven’t heard about those results, yet). Now rumors are spreading about the possibility of removing my hickman line. I’m like, “can’t we just wait a wee bit longer before doing anything rash.” The antibiotics are supposed to do the trick, right? I don’t know, it’s a little frustrating being at the mercy of some of these doctors knowing that within another week or so my white blood cell counts will start to be high enough that this won’t be an issue anymore. But, I’m not a doctor, and acknowledge that I don’t have the same understanding as they do. 

In the meantime, I’m happy that I’m starting to feel better (the last couple of days totally wiped me out) and can actually sit up for more than 30 seconds, and grateful that there are blood donors for the platelets and packed red cells that I’ve been receiving nearly every day now since Friday. It’s the little things.

4 Replies to “Not all smooth sailing”

  1. Dan,

    Sorry that things are not going as well as we all hoped. May I offer you some thoughts?

    You are totally within your rights as a patient to request a delay in treatment, esp if you think the pace is rash. Your doctors owe it to you to stop and explain their reasoning and answer all of your questions until you are satisfied. Don’t allow them to bully you!!! V has to be your advocate if you don’t have the strength for it. You are also totally within your rights to refuse a treatment. One of the reasons the medical establishment is in such a hurry, hurry, hurry to do things is because hospitals fear litigation – eg, being sued for dawdling and not taking prompt action, not running the right test, not taking pre-emptive action, etc.

    When I was in labor with my daughter, I had an overeager young resident who was anxious to push my progress and have me deliver on his idealized schedule. At that point, the baby did not seem to be suffering, it was just a normal (if slow) labor. We had a terse conversation the third time he came around to offer me a procedure I didn’t want. I think I said, “Look, thank you for telling me about my options. I understand these are available, but I DO NOT WANT THEM RIGHT NOW.” After the nurse also chided his aggressiveness, he retreated. Anyway. My point is that you can ask for more information and can ask them to slow down or at least get a better understanding of why they can’t slow down.

    Take care, Dan. We’re all pulling for you.

  2. Hang in there, Dan – we’re thinking of you. Hope you’ll be better soon.

  3. dan,

    i have to ‘fess up when i hadn’t seen a posting from you, i had begun to worry a little. i think it’s important for you and v to be comfortable with your line of treatment and the speed to which it’s administered. it’s okay to get a second opinion, though sometimes i’ve found some doctors are better at explaining things in layman’s terms than others, and all i really needed was to have things explained to me by another doctor. they were also to the doctors i felt most comfortable asking questions. i hope the x-rays results are negetive (no pockets of buggers).

    sending good energy your way.


  4. Hang in there, Dan. I wish you and V. all the best! I hope that with each day, you feel a little better.

    Take care,


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