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.
26 April 2010
18 April 2010
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.
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.
10 April 2010
Day 40
Hemoglobin 8.2
Platelets 102
WBC 5.3
Creatinine 1.60
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.
Platelets 102
WBC 5.3
Creatinine 1.60
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.
08 April 2010
Day 38
Hemoglobin 8.8
Platelets 86
WBC 3.5
|Neutrophils| 1.5
Creatinine 1.26
I met with Dr. Oran on Tuesday and again she was pleased with the improvement in most of my counts. Since my creatinine has finally reached acceptable levels she put me back on cyclosporine. The dose is only 25 mg (10% of a standard dose) and we will see how my kidneys react. I believe Dr. Oran wants to increase this dose until we reach the highest level possible that my kidneys will tolerate. She also prescribed a Z Pack (azithromycin, an antibiotic) to help potentially treat whatever I have been coughing about. She considers it "overmedicating", but she'd rather be safe than sorry.
I met yesterday with endocrinology and they don't think the problems I'm experiencing in my feet is neuropathy. It isn't presenting like standard neuropathy, so they think it is more likely due to a medication associated with my kidney function. They will continue to monitor it, in case it is early-stage neuropathy, but recommended I discuss it with nephrology, hoping they would have some insight.
I also met with my ophthalmologist yesterday about my left eye. The good news is that there is no serious or continuing damage in my eye. The vessels are very sensitive and can bleed even if when my platelets aren't < 30. The bad news is that there isn't much he is willing to do about it at this point. It may take weeks for the blood to clear, and that's only if it isn't continuing to bleed. But since my body is still adjusting from the transplant he doesn't think surgical removal of the blood is a good idea. If I continue to have this problem after things "have settled down", then we can discuss surgical intervention. For now, I have to wait it out, as annoying as it is having only one good eye. Maybe I should get a patch...
Platelets 86
WBC 3.5
|Neutrophils| 1.5
Creatinine 1.26
I met with Dr. Oran on Tuesday and again she was pleased with the improvement in most of my counts. Since my creatinine has finally reached acceptable levels she put me back on cyclosporine. The dose is only 25 mg (10% of a standard dose) and we will see how my kidneys react. I believe Dr. Oran wants to increase this dose until we reach the highest level possible that my kidneys will tolerate. She also prescribed a Z Pack (azithromycin, an antibiotic) to help potentially treat whatever I have been coughing about. She considers it "overmedicating", but she'd rather be safe than sorry.
I met yesterday with endocrinology and they don't think the problems I'm experiencing in my feet is neuropathy. It isn't presenting like standard neuropathy, so they think it is more likely due to a medication associated with my kidney function. They will continue to monitor it, in case it is early-stage neuropathy, but recommended I discuss it with nephrology, hoping they would have some insight.
I also met with my ophthalmologist yesterday about my left eye. The good news is that there is no serious or continuing damage in my eye. The vessels are very sensitive and can bleed even if when my platelets aren't < 30. The bad news is that there isn't much he is willing to do about it at this point. It may take weeks for the blood to clear, and that's only if it isn't continuing to bleed. But since my body is still adjusting from the transplant he doesn't think surgical removal of the blood is a good idea. If I continue to have this problem after things "have settled down", then we can discuss surgical intervention. For now, I have to wait it out, as annoying as it is having only one good eye. Maybe I should get a patch...
04 April 2010
Day 34
Hemoglobin 8.3
Platelets 81
WBC 2.8
Creatinine 1.37
I met with Dr. Oran yesterday, she was pleased to see that my counts had improved slightly. She tweaked the dosing on my medications a little more and hopes to add cyclosporin back when I meet with her again Tuesday. She also ordered a chest CT to investigate this cough I still have, but because I have no other symptoms she didn't think it would show anything significant.
Last Thursday I woke up and the hemorrhage in my left eye was back, again disrupting about 90% of my field of vision in that eye. It is exactly like when I was inpatient and my platelets were low, but since that is not the case this time (my platelets are at an acceptable level), I'm not sure what is going on. I have an appointment with a retina specialist on Wednesday to get it checked out.
I have also been having a lot of pain in my legs and feet. By the end of the day my feet are swollen with a tingling/burning sensation - Dr. Oran believes this to be neuropathy, a common complication for diabetics. I also have joint pain in my right knee as well as deep "bone" pain in both legs from my knees to my ankles. I don't think this too is neuropathy, but Dr. Oran is expediting an appointment for me to see an endocrinologist. Neuropathy is their specialty so they will figure it out.
Platelets 81
WBC 2.8
Creatinine 1.37
I met with Dr. Oran yesterday, she was pleased to see that my counts had improved slightly. She tweaked the dosing on my medications a little more and hopes to add cyclosporin back when I meet with her again Tuesday. She also ordered a chest CT to investigate this cough I still have, but because I have no other symptoms she didn't think it would show anything significant.
Last Thursday I woke up and the hemorrhage in my left eye was back, again disrupting about 90% of my field of vision in that eye. It is exactly like when I was inpatient and my platelets were low, but since that is not the case this time (my platelets are at an acceptable level), I'm not sure what is going on. I have an appointment with a retina specialist on Wednesday to get it checked out.
I have also been having a lot of pain in my legs and feet. By the end of the day my feet are swollen with a tingling/burning sensation - Dr. Oran believes this to be neuropathy, a common complication for diabetics. I also have joint pain in my right knee as well as deep "bone" pain in both legs from my knees to my ankles. I don't think this too is neuropathy, but Dr. Oran is expediting an appointment for me to see an endocrinologist. Neuropathy is their specialty so they will figure it out.
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