Well, I got my strength back in my legs and arms. I can finally climb my stairs unassisted. I'm still only 152 pounds (I've lost about 70 pounds), but I'm getting there. I currently have some Graft vs Host Disease in the form of a rash over most of my body, but that will go away.
I'm getting out and about more these days too.
I'm having a few issues with side effects with medications, but other than that, I'm doing well. I'm getting stronger every day, and hope to return to work physically (not just from home) soon.
When they said six months to a year for recovery, they meant it. I thought I would be further along than I am now, but I have to consider the muscle atrophy as a major setback. It put me back at least two to three months.
In any case, I'm getting back to the strength level I was at when I came home from the hospital initially.
Not all food tastes like it should. My taste buds are getting back to normal, but that's a long steady process too, from what I understand. I can't wait until I can taste food normal again.
Between my last post and this one, I've had a series of blood clots form in my right leg. They had to do surgery and install filters along the main arteries to my lungs, heart and brain. If a clot breaks through, it won't give me a heart attack, stroke or head for my lungs. I'm on blood thinners to dissolve the clots and get back to normal.
Also since then, I've fully recovered from the Acytes (all that fluid that had built up in my abdomen). It's completely gone, and I feel human again.
I also suffered a terrible fall in my bathroom. I fell straight across my tub right on my neck like a guillotine. My neck hit the side of the tub, and my chin slammed against the inside of the tub. 911 and an ambulance took me to the hospital. I took a few stitches to my chin and my voice is shot. I thought I broke my neck, but I didn't, thank God. It's going to take a long time for my voice to return to normal. In the meantime, I just do what I can.
I get good news every time I go for an appointment at City of Hope. They did another bone marrow biopsy (I think it was number 15 or 16 - I can't keep count anymore). I'm still 100% donor and there is still no cancer. I'm due for another bone marrow biopsy soon. I'm expecting the results to be the same.
As I close, I'd just like to say thank you to everyone for all their love and support. I really do appreciate it tremendously...
Monday, January 3, 2011
Friday, September 24, 2010
Day 90 and I'm back at work. My leg and arm muscles are still weak, but I'm working to build them back. That's my biggest challenge now. I have to get my strength back. I walk and do exercises with a physical therapist, but the home visits have only two left. After that, I'm on my own to get them done.
Anyway, they lifted my dietary restrictions. Since I'm only ten days away from day 100, they said I have no restriction as long as I make it at home. Finally, I can eat a salad. Believe it or not. When you are restricted to hot cooked food only, you crave things like radishes and fresh lettuce. I can't go to a restaurant or fast food, but that's ok with me. At least I can finally have a salad or eat guacamole.
10 days to day 100. Yay - getting close - buy buy mask - hello fresh air!
Anyway, they lifted my dietary restrictions. Since I'm only ten days away from day 100, they said I have no restriction as long as I make it at home. Finally, I can eat a salad. Believe it or not. When you are restricted to hot cooked food only, you crave things like radishes and fresh lettuce. I can't go to a restaurant or fast food, but that's ok with me. At least I can finally have a salad or eat guacamole.
10 days to day 100. Yay - getting close - buy buy mask - hello fresh air!
Thursday, September 2, 2010
It was a really long day (7 to 5), and they also gave me the drainage procedure. YA! You are not going to believe how much fluid they pulled out. And they didn't take it all, because it would be too much for my system to be that full and then completely empty. They pulled out a little over four liters of fluid. That's two giant two liter soda bottles. That's ten pounds of fluid I was carrying around in front of me. That's more than a baby!
Anyway, I finally have relief. Maybe now that I'm free from the water belly, I'll be able to get around better.
Tuesday, August 31, 2010
Its been a hectic week of clinical visits, procedures, blood draws, you name it.
Ultrasound today confirmed a diagnosis for the horrible, bloated belly. Its "ascites", the fluid buildup outside the organs in the surrounding tissue. They've got me on a special med (specialized diuretic), but they are going to schedule a procedure to remove the fluid. They are literally going to lay me down, poke a hole in my abdomen, insert a catheter, and drain the fluid out. They say it will bring instant relief, and I'll leave the procedure with an abdomen that looks pretty much normal without any fluid.
I'm impatient, so I can't wait for the procedure (even though I will be awake through it). Heck I'll bite a stick if they want me to. Just get this fluid out of me. In the meantime, I continue to take the medicine.
The imunoglobulin infusion is scheduled for Thursday, so we'll see how that goes.
I just wanted to drop a few updates today. Everything remains unchanged. I'm just taking it as it comes.
Ultrasound today confirmed a diagnosis for the horrible, bloated belly. Its "ascites", the fluid buildup outside the organs in the surrounding tissue. They've got me on a special med (specialized diuretic), but they are going to schedule a procedure to remove the fluid. They are literally going to lay me down, poke a hole in my abdomen, insert a catheter, and drain the fluid out. They say it will bring instant relief, and I'll leave the procedure with an abdomen that looks pretty much normal without any fluid.
I'm impatient, so I can't wait for the procedure (even though I will be awake through it). Heck I'll bite a stick if they want me to. Just get this fluid out of me. In the meantime, I continue to take the medicine.
The imunoglobulin infusion is scheduled for Thursday, so we'll see how that goes.
I just wanted to drop a few updates today. Everything remains unchanged. I'm just taking it as it comes.
Monday, August 30, 2010
Had a clinical visit at City of Hope today. Great news! ALL of my markers for complete graft came out at 100% again (a couple more markers showed 100% even from last testing).
There were a few issues with my regular lab work from today. My platelets are continually coming down (not good), white counts were low (again), and a couple other markers were troublesome. Good news on that is it's medicine related. My bone marrow is working perfectly. It's producing everything it's supposed to, but the medicines are still chewing up the cells. So they discontinued a medicine, adjusted others. I expect by my next clinical appointment on Thursday that my numbers will be going back up again.
I'm still weak, so standing from a sitting position is very difficult. Also, climbing my stairs at home has become almost an impossible task. I can't wait until these medicines flush completely out of my system. I'll start feeling human again.
My belly looks like I'm eight months pregnant, and it's hard as a rock. I have a scan scheduled for this week to see if the abdomen is swollen from GVHD or if there is a fluid buildup outside my organs in my stomach and intestines. In the meantime, the doctor has given me a specialized diuretic that is supposed to clear the fluid if that is what it is.
He didn't want to wait for the imaging test results, so he started me on them today. I started taking the specialized diuretic today, and I can actually feel it working physically. So I think the scan is only going to confirm that I have fluid buildup outside the organs. If that's the case, I'm finally going to have relief from this bloated, painful belly.
I got a call today from City of Hope that I need an infusion of imunoglobulin. It's a crucial part of fighting bacterial infections in your system. My levels on that were low today apparently, so I'm going in for infusion this week.
In any case, each day brings its own challenges. I have to take this one day at a time (not easy for me). I should be out of the woods with this chapter pretty soon.
There were a few issues with my regular lab work from today. My platelets are continually coming down (not good), white counts were low (again), and a couple other markers were troublesome. Good news on that is it's medicine related. My bone marrow is working perfectly. It's producing everything it's supposed to, but the medicines are still chewing up the cells. So they discontinued a medicine, adjusted others. I expect by my next clinical appointment on Thursday that my numbers will be going back up again.
I'm still weak, so standing from a sitting position is very difficult. Also, climbing my stairs at home has become almost an impossible task. I can't wait until these medicines flush completely out of my system. I'll start feeling human again.
My belly looks like I'm eight months pregnant, and it's hard as a rock. I have a scan scheduled for this week to see if the abdomen is swollen from GVHD or if there is a fluid buildup outside my organs in my stomach and intestines. In the meantime, the doctor has given me a specialized diuretic that is supposed to clear the fluid if that is what it is.
He didn't want to wait for the imaging test results, so he started me on them today. I started taking the specialized diuretic today, and I can actually feel it working physically. So I think the scan is only going to confirm that I have fluid buildup outside the organs. If that's the case, I'm finally going to have relief from this bloated, painful belly.
I got a call today from City of Hope that I need an infusion of imunoglobulin. It's a crucial part of fighting bacterial infections in your system. My levels on that were low today apparently, so I'm going in for infusion this week.
In any case, each day brings its own challenges. I have to take this one day at a time (not easy for me). I should be out of the woods with this chapter pretty soon.
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