Yesterday I had an appointment with Dr. Oran. She did not believe me when I told her that, except for my eyes being dry and bothersome and the sores in my mouth, I have been feeling pretty well. She asked IRael If he thought I was doing as well as I said I was, since I'm "not a complainer."

I learned that the last CT scan I had in January was completely clear. There were no signs of infection, both bacterial and fungal. I am meeting with Dr. Young 02 March to get her opinion on whether or not I can get off my IV caspofungin (and get my PICC line removed). I asked Dr. O how sue felt about stopping caspo and removing my line. Because of my history I need to remain on an antifungal indefinitely. I used to be on VFEND, an oral antifungal, but while I was on it I contracted several microorganisms, so it appears to have a limited effectiveness for me. So it seems unlikely that I would be put back on VFEND when caspo is responsible for successfully clearing my infections. Which means I wouldn't be getting rid of my line anytime soon.

That's Dr. O's take on the situation, but she will defer any decisions to Dr. Young, the infectious disease expert. I'm not really expecting her to say anything different. But we'll see. Dr. O said there is another class of oral antifungals, different from VFEND, that I haven't tried yet, so that might be an option.

I've been getting around alright, although I've been having more pain than before. When I go from a seated position to standing I have an incredible pain in my hip. I dint know if it's part of the healing process, or if something is wrong, or if maybe I'm becoming tolerant to my pain medications. I'll see if it improves in the next few days, otherwise I need to contact my physical therapist and ask what she thinks about it.

Since I'm doing well enough I won't be seeing Dr. O for two weeks. That same week I will be seeing my surgeon and having X-rays of my hip taken. I also have my one-year anniversary labs and bone marrow biopsy. Man am I not looking forward to that.

Home-sick

I saw my surgeon's nurse yesterday. He took a look at my incisions and thought they were healing nicely. I was cleared to not see my surgeon for four weeks. At that time I'll have X-rays taken and will meet with my actual surgeon to hear how he feels things are going.

I feel useless. Since I can't put any weight on my right leg and thus need to use a walker to go anywhere. That makes it virtually impossible to carry anything. So that means I rely on assistance for everything. I can't really cook, I can't do much cleaning, I can't do laundry, I can't take care of Baxter. In addition I haven't left my apartment except for clinic appointments. It is exhausting moving from my front door to the exterior of my building into a car, I couldn't imagine going someplace without using a wheelchair, like at my clinic appointments. So I don't go out; people need to come to me to visit.

I spend my days laying on the couch, watching the same shows from day to day on tv, and sleeping. I feel so useless, lonely, and trapped. I wish I could walk and get out of here. So I could resume my normal life.

It's gonna be a long four weeks.

Back in the Saddle... Figuratively, Of Course

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.

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.

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.