Just spoke with the head of respiratory, Dr Jones, and he said that if all goes well I should be out of here next Tuesday. Exactly four weeks since being admitted.
One thing that surprised me was that he is in charge of my case and he said it was not until today that he found out that the Nocardia bug had invaded my blood when first admitted. I knew that the day after I was admitted. These doctors obviously don't share their notes!
How bizarre.. Ten minutes ago I had a fleeting visit from a dermatologist I'd asked to see. He grumbled about not usually calling on patients at such short notice, looked at the small ulcer I have on my elbow. Said it was nothing of concern, probably to do with picking and scratching and then left. He was quite abrupt and dismissive.
Move ahead ten minutes and he returns with a completely different attitude.
"I've just had a talk with your doctor and read your notes" He said he was really sorry, no longer believed it was from picking and that with the number of highly unusual medical problems I have it would be prudent to do a biopsy for a number of possible causes including Nocardia and lymphoma.
Isn't it amazing what a difference actually doing your homework does to your work standard. At least he had the decency to apologise.
I have a tummy ache again today, I've only just been given medication for it after asking the nurses for two days. Ask the Doctor and it was here in ten minutes.
Gee I complain a lot!! ;)
Two posts in one day... gosh :)
Thursday, June 23, 2011
small improvements..
Today we reduced the prednisone to 40mg. I have serious doubts as to whether 40mg is enough to continue the reduction in inflammation and repair my lungs. I guess I'll find out in the coming days. If it does then great, otherwise it's back up to 60mg.
Each day I am that little bit better than the day before. Yesterday I showered myself for the first time and only felt a little fatigued from the exercise. I can walk almost normally now, rather than shuffling like an old man. There's still very little strength in my legs and I'm unable to push myself up on the balls of my feet. However that is improving daily.
Both heart rate and blood counts are trending in the right direction. Very, very small improvements, but at least they are going the right way now.
I still have to hound the nurses for just about everything. Yesterday I had an appointment with the dermatologist at 4pm and no one came to pick me up. Called the nurse and she blamed the previous shift for not telling her.
There's been dozens of little incidents like this over the last three weeks. I can only imagine what it would be like for someone that cannot monitor their own treatment. I even have to ask for my meds some days.
One morning someone signed me off as having taken all my medication when I was in fact "nil by mouth" that morning. I gave them a rev about that as it was my prednisone and without that I would have been very sick.
I'm having trouble with an acid stomach at the moment. It started yesterday. Any time I eat anything I get a stomach ache and a feeling like a hot ball of acid in stomach. Told the nurse yesterday. Nothing done about it yet.
Oh well, that's enough complaining for one day.. ;)
Each day I am that little bit better than the day before. Yesterday I showered myself for the first time and only felt a little fatigued from the exercise. I can walk almost normally now, rather than shuffling like an old man. There's still very little strength in my legs and I'm unable to push myself up on the balls of my feet. However that is improving daily.
Both heart rate and blood counts are trending in the right direction. Very, very small improvements, but at least they are going the right way now.
I still have to hound the nurses for just about everything. Yesterday I had an appointment with the dermatologist at 4pm and no one came to pick me up. Called the nurse and she blamed the previous shift for not telling her.
There's been dozens of little incidents like this over the last three weeks. I can only imagine what it would be like for someone that cannot monitor their own treatment. I even have to ask for my meds some days.
One morning someone signed me off as having taken all my medication when I was in fact "nil by mouth" that morning. I gave them a rev about that as it was my prednisone and without that I would have been very sick.
I'm having trouble with an acid stomach at the moment. It started yesterday. Any time I eat anything I get a stomach ache and a feeling like a hot ball of acid in stomach. Told the nurse yesterday. Nothing done about it yet.
Oh well, that's enough complaining for one day.. ;)
Tuesday, June 21, 2011
Progress..
Well I've been on 60mg of prednisone now for 5 days. There's been a dramatic improvement in my breathing and sense of well-being (pred would do that anyway).
On day seven we are going to drop down to 40mg and stay there for some time.
I'm suggesting four weeks, no one is disagreeing with me.
I had a really good talk with the head of respiratory, Dr Jones. He's in charge of my case and the overall treatment plan. I said to him that I knew he was very set in his view of my situation and how to treat it but that I had no idea what that plan was.
He really opened up and talked to me in a very relaxed manner, not like the confrontational approach he had when we first met. He listened to what I would like to see happen and did not disagree. I told him I wanted to give erythromycin another chance, that I really needed to get off prednisone before it completely wrecked my body (more than it has already). But that I didn't want to make the mistake of weening too fast. I believed a 6 month taper would be best. I think we are on the same page.
Today I had an ultrasound guided needle inserted into my back in an attempt to get a sample of the fluid that was remaining in a small pocket in my chest. It was 38mm long and they had about ten goes at finding the tiny pocket. In the end they managed to get just a tiny (maybe 1ml) sample of fluid. So that was good, Had they drawn out a quantity of pus I would have been in for surgery and having my chest opened up, drained and washed out. I wouldn't recover from that in a hurry.
I'm now walking down the corridors a couple of times a day. My leg muscles are so atrophied that they hurt from just a few hundred metres of walking. It will be a long road to recovery when it comes to physical fitness. I'm a real physical mess, no muscle mass at all.
I'm getting wiser to the food people, they still screw up at least half my food orders, but I try and add things I know they can do so at least that way I don't go hungry. Today I ordered a chicken salad and instead of contacting me to say "not available, choose something else" they just left it off! Good thing I also added the ingredients to make a bacon and egg sandwich which filled me up nicely by itself. I didn't trust them to make me one, best to just order the ingredients.
I'm coughing a lot, not involuntarily, but because I have a lot of phlegm on my chest.
It sits in my airways and rattles so I have to cough to get it clear. It's annoying but also surprising just how much I cough up. Must drive the guy in the bed next to me crazy. But he doesn't say anything.
Till next time...
On day seven we are going to drop down to 40mg and stay there for some time.
I'm suggesting four weeks, no one is disagreeing with me.
I had a really good talk with the head of respiratory, Dr Jones. He's in charge of my case and the overall treatment plan. I said to him that I knew he was very set in his view of my situation and how to treat it but that I had no idea what that plan was.
He really opened up and talked to me in a very relaxed manner, not like the confrontational approach he had when we first met. He listened to what I would like to see happen and did not disagree. I told him I wanted to give erythromycin another chance, that I really needed to get off prednisone before it completely wrecked my body (more than it has already). But that I didn't want to make the mistake of weening too fast. I believed a 6 month taper would be best. I think we are on the same page.
Today I had an ultrasound guided needle inserted into my back in an attempt to get a sample of the fluid that was remaining in a small pocket in my chest. It was 38mm long and they had about ten goes at finding the tiny pocket. In the end they managed to get just a tiny (maybe 1ml) sample of fluid. So that was good, Had they drawn out a quantity of pus I would have been in for surgery and having my chest opened up, drained and washed out. I wouldn't recover from that in a hurry.
I'm now walking down the corridors a couple of times a day. My leg muscles are so atrophied that they hurt from just a few hundred metres of walking. It will be a long road to recovery when it comes to physical fitness. I'm a real physical mess, no muscle mass at all.
I'm getting wiser to the food people, they still screw up at least half my food orders, but I try and add things I know they can do so at least that way I don't go hungry. Today I ordered a chicken salad and instead of contacting me to say "not available, choose something else" they just left it off! Good thing I also added the ingredients to make a bacon and egg sandwich which filled me up nicely by itself. I didn't trust them to make me one, best to just order the ingredients.
I'm coughing a lot, not involuntarily, but because I have a lot of phlegm on my chest.
It sits in my airways and rattles so I have to cough to get it clear. It's annoying but also surprising just how much I cough up. Must drive the guy in the bed next to me crazy. But he doesn't say anything.
Till next time...
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