Day 68

Benefit Information via Facebook

Dad's Belgian Waffle Breakfast Feed

Saturday 15 May 2010

0800 - 1300

Christ The King Church

1040 South Grade Road

Hutchinson, MN  55350

I met with Dr. Oran Tuesday.  This was the first time I've seen her since I've developed GVHD and she was surprised that my symptoms had not completely cleared yet.  Even today my skin, especially my hands, feet, and face, are red and peeling, signs that GVH is still present.  Dr. O said symptoms should have disappeared completely within 10 - 14 days, which was Tuesday.  Normally at this point I would have been put on stronger immunosuppressants to quell the remaining GVH, but (of course) my situation is more complicated.  First, it was Dr. Oran's first time seeing me, so she had no reference as to whether my symptoms are getting better or getting worse or staying steady.  Secondly, the Vancomycin I was taking (an antibiotic) can cause a condition called Red Man Syndrome.  This syndrome causes the skin to become red, achy, and peel, thus closely mimicking GVH symptoms.  Dr. Oran consulted the GVHD expert at the BMT clinic and the two of them were not enough convinced my symptoms are purely GVHD (thinking the Vancomycin and Red Man Syndrome were playing roles) to justify further immune suppression at this point.  Apparently the suppression treatment is pretty high-octane, so they don't want to resort to it unless they can be confidant it is necessary.

So it was decided I would be switched from the Vancomycin to Clindamycin (another antibiotic that would do the same job sans the Red Man Syndrome) until the antibiotic run concluded Friday.  I'm meeting with her again Tuesday morning.  Then she'll be able to note what sort of changes have taken place and decide if further suppression is needed.

It seems that my symptoms have improved since I've stopped the Vancomycin, but my hands especially are still red and painful.  My thighs, chest, and back all look good, so I'm confidant the GVH isn't getting worse, it just should be better at this point.

My taste is still all messed up, but it's better than it was before.  At first nothing tasted good.  Now I've come to enjoy savory things - meat, vegetables (I eat lots of salads), pastas, plain yogurt, cottage cheese, and orange juice.  I still have little sensation of salty or sweet, but I've found enough foods to keep me eating well.  I have such cravings for the flavors I'm missing, it'll be a great day when they come back.

I've been retaining a ton of water too.  When I was discharged from the hospital on 27 April I weighed about 165#.  Now I weigh about 190# and my legs look like plump sausages.  I've been eating a lot (my appetite is back with a vengeance) but there's no way I put on that much weight from eating (plus if you saw my legs you'd know they're not right).  Dr. Oran said GVHD can cause edema, plus one of my blood pressure medications causes water retention.  Plus I bet the antibiotics didn't help.  Either way, Tuesday I'm guessing Dr. O'll prescribe a diuretic to help alleviate some of the pressure.

Day 61

I've been out of the hospital for five days now and it is great to be home.  My skin is still peeling all over my hands, face, and shoulders but it doesn't bother me too much.  My sense of taste is still gone - I can't taste anything sweet or salty.  It seems to be coming back slowly, but maybe I'm just adjusting to the bland taste of everything.  I miss taste so bad, I never would have thought losing it would bother me as much as it is.  I'm hoping it doesn't last much longer...

Otherwise things are ok.  My diabetes is under decent control even though I'm still on steroids.  It's good to be outside and enjoying the spring weather.

Day 56

So I haven't been writing much lately mainly because I've been frustrated with my care recently and haven't felt like talking about it.  Today the doctors said I could be "revved up" on the high-dose steroids I'm currently taking, making me more agitated and short-tempered, but I think I'm just so sick of being in a damn hospital.  Let's recount 2010 so far:

Days Hospitalized:
January - 31
February - ~14
March - ~21
April - 10 (so far...)
Total - 76 (out of 116)

That's 66% of my year spent in this hospital.  And they say it's the meds that have me revved up.


Anyway...


I'm still inpatient.  I was finally diagnosed with mild GVHD Friday after the doctors spent a week diagnosing me incorrectly with who-knows-what.  So with GVHD comes high-dose steroids, which I'm glad to say I've been tolerating well with my diabetes.  They have also greatly reduced my GVH symptoms, so I've been feeling well the past few days, although that makes it harder to stay in a hospital room all day.  I've been arguing with my attending doctor about a discharge date and I finally got him to commit to tomorrow, pending no changes yadda yadda....  i just hope he walks in on rounds at 10am with my discharge paperwork filled out, cuz I'm going to be packed and sitting on the bed ready to go.

With GVH, I look like a snake my skin is peeling so bad, everything I eat tastes like styrofoam, and I have diarrhea.  Other than that things are going well I guess.  I just need to get the frack out of here.

Day 47

Friday morning I woke up around 0430 and couldn't stop coughing and couldn't catch my breath.  So IRael took me to the ER and they gave me medications and calmed me down.  They also drew a bunch of blood cultures to investigate why I have been having low-grade fevers.  We were in the ER until around 0730, then we went to the BMT clinic and met with a provider there who changed some of my medications around.  My creatinine had also jumped to 1.9, so i received a liter of saline before they sent me home.

I spent the rest of the day sleeping and feeling crappy.  Then this morning I received a call from one of the BMT fellows saying one of my blood cultures grew streptococcus.  He said I could treat this as an outpatient, but because it is a weekend and additional testing needed to be done, he recommended that I come spend a few days inpatient.  So here I am again - room 4B-223.  So far they've started me on antibiotics and have drawn a lot more blood.  Otherwise I've been sleeping a lot.  We'll see what the doctor has to say tomorrow.  Hopefully I'll only be in for a few days.

Day 40

Hemoglobin 8.2
Platelets 102
WBC 5.3
Creatinine 1.60

BREAKING NEWS: Republicans, Leukemia Team Up to Repeal Health Care Law

Yesterday I met with a midlevel doctor. She thought things are going well except that my creatinine is elevated again, most likely because of the cyclosporin I began Tuesday. My kidneys seem to be sensitive to even this extremely low dose, so I again stopped the cyclosporin. I'm meeting with Oran again Tuesday and we'll discuss what to do instead then.

I also am going to be evaluated by physical therapy. I think the pain in my feet and legs is (at least partly) because my muscles have atrophied (due to the extended hospital stays and not being as active when at home) and become very tight. Some days my legs are so stiff I can barely walk. The doctor yesterday also explained that when muscles tighten they can do so around nerve endings, causing pain. Couple this with the edema I have in my feet putting more pressure on nerve endings and it could explain the faux-neuropathy symptoms I experience.

I've never been a very limber person, but lately it has gotten ridiculous. Some nights I will lay on my back and have IRael help me stretch out my legs. The next day there is a significant improvement in how they feel, so I think PT will do some good. I hope it will make it easier (pain-free) for me to get exercise, especially once my counts are good enough for me to start training to get my strength back.