So I've decided that I need to resume writing this blog. I know I've said that before but this time I really mean it.
As I sit here in clinic I've decided that I'm going to tell people I have a broken leg. Broken hips are for senior citizens. Since I'm not in my 60s yet it seems more appropriate I call it a broken leg. It's the truth, technically, since hips are on femurs. Plus the entirety of the implanted metal is in my femur.
Broken leg, not broken hip. That's my story and I'm sticking to it.
07 February 2011
22 September 2010
Stupidest Day Ever
So my edema has been worse the past couple days. As a result, I've increased the amount of Lasix I'm taking, which in turn has made the BMT doctors concerned about my kidneys. So they wanted me to come in today for a checkup. While there they performed a blood test that indicated my heart is under stress, similar to those in heart failure. My doctors wanted EKG and ECHO tests performed along with supplemental IV drugs to take off the excess water. They convinced me the best way to do this was for me to be admitted to the hospital. So I was.
Worst decision ever. Sure, I had my EKG and ECHO, but I spent the rest of the day sitting around not hooked to any IVs or receiving any treatment for my edema because today it is much better. I took all my medications as I would have at home (after lengthy explanations of my medication regimes.... they still don't have it right), but instead of being free I got to sit in a hospital room. It is so stupid.
On top of it all I'm on a low-sodium diet so I couldn't order anything I wanted off the hospital menu. Literally everything I tried to order had too much salt in it, I had to modify it somehow (read: had to make an already crappy meal even crappier).
We'll see what the EKG and ECHO results are, but the doctors had better have a treatment plan for tomorrow. Because after a day like today it needs to be damn convincing if they expect me to stay inpatient.
Worst decision ever. Sure, I had my EKG and ECHO, but I spent the rest of the day sitting around not hooked to any IVs or receiving any treatment for my edema because today it is much better. I took all my medications as I would have at home (after lengthy explanations of my medication regimes.... they still don't have it right), but instead of being free I got to sit in a hospital room. It is so stupid.
On top of it all I'm on a low-sodium diet so I couldn't order anything I wanted off the hospital menu. Literally everything I tried to order had too much salt in it, I had to modify it somehow (read: had to make an already crappy meal even crappier).
We'll see what the EKG and ECHO results are, but the doctors had better have a treatment plan for tomorrow. Because after a day like today it needs to be damn convincing if they expect me to stay inpatient.
20 September 2010
Complete with Velcro
Today I went and was fit for a pair of diabetic shoes. Hopefully I'll be able to better fit into these shoes than my current ones.
My edema has gotten worse over the past week, since the time I started taking the narcotics. I've upped my Lasix and have been wearing my compression stockings, but they're not much relief. The sooner the pain from the shingles goes away the sooner I can get off the narcotics and, hopefully, stop the massive swelling again.
My shingles sores have dried up and become crusty, now they just need to peel off. The rash is like one big scab. It's itchy as hell and still hurts but the narcotics keep me comfortable, even if I feel like every time I sit down I could fall asleep for hours.
Dr. Oran had her baby, a girl. Everyone is doing well as far as I heard, even though she was four weeks premature. Because she was so early her transition plan hadn't yet been determined, so now that she's out (probably until the new year) my nurse coordinator Carol is still trying to figure out which doctor will be taking over my case. It should be decided sometime this week.
The shingles is stable, my GVH seems to be stable, so I don't have an oncology appointment until next week.
My edema has gotten worse over the past week, since the time I started taking the narcotics. I've upped my Lasix and have been wearing my compression stockings, but they're not much relief. The sooner the pain from the shingles goes away the sooner I can get off the narcotics and, hopefully, stop the massive swelling again.
My shingles sores have dried up and become crusty, now they just need to peel off. The rash is like one big scab. It's itchy as hell and still hurts but the narcotics keep me comfortable, even if I feel like every time I sit down I could fall asleep for hours.
Dr. Oran had her baby, a girl. Everyone is doing well as far as I heard, even though she was four weeks premature. Because she was so early her transition plan hadn't yet been determined, so now that she's out (probably until the new year) my nurse coordinator Carol is still trying to figure out which doctor will be taking over my case. It should be decided sometime this week.
The shingles is stable, my GVH seems to be stable, so I don't have an oncology appointment until next week.
09 September 2010
Moldy... Old.... I'm gonna get something to eat!
Tuesday I was supposed to meet with Dr. Oran. However, since she is pregnant, she didn't want to see me because of the shingles. Shingles is contagious but the only at-risk populations are people who haven't had chicken pox, immunocompromised people, and pregnant women. So I met with another doctor who examined me and discussed everything with me, then went and discussed her findings with Dr. Oran, then came back with what Dr. Oran had to say - sort of like the game "telephone".
The three of us decided that it is still too early to tell if my shingles treatment is effective. More time is needed to see if new lesions are developing. Until then, I'll continue taking my antivirals and pain meds. We also decided that my GVHD has stabilized since discontinuing the prednisone pulses, which means we're going to try slowly reducing the prednisone I'm taking daily from 30mg to 20mg. My creatinine has slowly been climbing as well (it's been hovering around 1.5-1.6), so I'm also reducing the amount of Lasix I'm taking. That should help reduce the stress on my kidneys, as long as the edema stays under control (it's been a lot better recently).
All my tests from my six month anniversary came back normal/clear. There is no signs of leukemia anywhere and the marrow is 100% donor. Furthermore, all three cell precursors are present and producing cells (white blood cells, red blood cells, and platelets). The other genetic tests that were done all came back with favorable results. Finally, my lung x-ray was clear (no pneumonia visible).
My next appointment is tomorrow to check on the shingles. If there is no improvement or I'm still producing new skin lesions I will need to take different antivirals. I'm told, however, that these would need to be done IV which means I'd have to be hospitalized. Hopefully it won't come tot that.
The three of us decided that it is still too early to tell if my shingles treatment is effective. More time is needed to see if new lesions are developing. Until then, I'll continue taking my antivirals and pain meds. We also decided that my GVHD has stabilized since discontinuing the prednisone pulses, which means we're going to try slowly reducing the prednisone I'm taking daily from 30mg to 20mg. My creatinine has slowly been climbing as well (it's been hovering around 1.5-1.6), so I'm also reducing the amount of Lasix I'm taking. That should help reduce the stress on my kidneys, as long as the edema stays under control (it's been a lot better recently).
All my tests from my six month anniversary came back normal/clear. There is no signs of leukemia anywhere and the marrow is 100% donor. Furthermore, all three cell precursors are present and producing cells (white blood cells, red blood cells, and platelets). The other genetic tests that were done all came back with favorable results. Finally, my lung x-ray was clear (no pneumonia visible).
My next appointment is tomorrow to check on the shingles. If there is no improvement or I'm still producing new skin lesions I will need to take different antivirals. I'm told, however, that these would need to be done IV which means I'd have to be hospitalized. Hopefully it won't come tot that.
04 September 2010
Photos
 |
| The pictures are kinda washed-out. The rash looks much more bright red in reality and there are large white blisters near my midline on both my front and back (they're hard to see in the photos). I'm told eventually the entire rash will blister, pop, crust over, and peel off. |
Since the antivirals I'm on are hard on the kidneys (go figure), I went back to the BMT clinic yesterday for lab work and to re-evaluate my shingles. My creatinine came back at 1.53, which isn't great but acceptable. The doctor started me back on Gabapentin (Neurontin), which should help with the generalized abdominal pain I have. She also switched me to a Fentanyl patch. It'll provide constant pain medication instead of having to take pills every 3 hours. I was started on a low dose and so far all it seems to do is make me drowsy. I'm still taking Dilaudid every 4-5 hours to manage the pain. Between the two it covers it well, but being on strong narcotics isn't ideal, the combination of the two basically leaves me stoned. It's better than being in pain, but I'm hoping Tuesday, when I meet with Dr. Oran, we can work something better out so I don't spend my days in such a dug-induced fog.
Subscribe to:
Posts (Atom)
