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...
Saturday, June 18, 2011
Waiting...
Waiting for progress. I've been in hospital now for two and a half weeks, the last week here at Wellington. Boredom is a problem. I have plenty to do but no inclination to do much.
I could write forever on how bad the food is here, and even after talking to the dietitians and getting a free reign on what I eat. The food that is delivered is seldom what I have ordered. I asked for spaghetti on toast with melted cheese on top yesterday and what was served was a splodge of spaghetti on a plate, two bits of dry white bread and a couple of plastic wrapped cheese singles.
The nursing staff are over worked and I often have to ask for my medications hours after they were scheduled. In the Hutt things were much more relaxed and the staff very attentive.
The doctors can't agree on a treatment plan and won't have a full discussion about me for another week. So not a chance of getting out of here any time soon.
The respiratory doctor is treating me for relapsed BOOP with high dose steroids, std treatment. The Infectious Diseases expert (apparently NZ's top man in his field) believes that it's been the Nocardia bug that's been giving me symptoms that I've mistaken for BOOP and that we should drop the steroids back to a controlling dose (possibly with the erythromycin) and let the antibiotics do their work. He believes that high dose steroids is like putting petrol on the fire and that my already trashed body will be a train wreck if I stay on the pred.
I know this myself. The ID doctor wants me to believe in him and for me to push for the lower dose pred. I certainly can see the logic in what he is saying and I'd agree that it all fits. The bug could well have been with me since late last year or earlier. It's dragged my health down and given me lung problems almost identical to BOOP. By increasing the prednisone dose all I have managed to do is provide a better environment for it to grow.
The respiratory Doc disagrees.. But then nearly all the doctors here have never seen a patient with a massive Nocardia infection, or even a small one. The Infectious Disease man has seen and managed many.
I've devised a simple test.. I'm now on 60mg of pred, if I have relapsed BOOP I should see a huge improvement in my breathing by Monday. If I don't then it's the pneumonia from the Nocardia and I can advise the Docs to taper me back to where I was previously (20mg and backed up by erythromycin).
I just want some sort of functioning body at the end of all this and high dose steroids will rob me of that if used for another year.
I'm finding this all quite frustrating. Today I'm coughing non stop, phlegm is choking me and still no energy. Fits with the ID diagnosis, so there's some bright side to it all.
Had a meeting with a haematologist yesterday. He gave me a good check over and we talked about all my Hodgkins fears, symptoms and the lack of them. His final word was that in his professional opinion he is 99% certain that I am still in remission and that Hodgkins Lymphoma is playing no part in my current health problems. That is very, very good news. (Although Sarah and I decided quite some time ago that we would live life believing that to be the case).
I could write forever on how bad the food is here, and even after talking to the dietitians and getting a free reign on what I eat. The food that is delivered is seldom what I have ordered. I asked for spaghetti on toast with melted cheese on top yesterday and what was served was a splodge of spaghetti on a plate, two bits of dry white bread and a couple of plastic wrapped cheese singles.
The nursing staff are over worked and I often have to ask for my medications hours after they were scheduled. In the Hutt things were much more relaxed and the staff very attentive.
The doctors can't agree on a treatment plan and won't have a full discussion about me for another week. So not a chance of getting out of here any time soon.
The respiratory doctor is treating me for relapsed BOOP with high dose steroids, std treatment. The Infectious Diseases expert (apparently NZ's top man in his field) believes that it's been the Nocardia bug that's been giving me symptoms that I've mistaken for BOOP and that we should drop the steroids back to a controlling dose (possibly with the erythromycin) and let the antibiotics do their work. He believes that high dose steroids is like putting petrol on the fire and that my already trashed body will be a train wreck if I stay on the pred.
I know this myself. The ID doctor wants me to believe in him and for me to push for the lower dose pred. I certainly can see the logic in what he is saying and I'd agree that it all fits. The bug could well have been with me since late last year or earlier. It's dragged my health down and given me lung problems almost identical to BOOP. By increasing the prednisone dose all I have managed to do is provide a better environment for it to grow.
The respiratory Doc disagrees.. But then nearly all the doctors here have never seen a patient with a massive Nocardia infection, or even a small one. The Infectious Disease man has seen and managed many.
I've devised a simple test.. I'm now on 60mg of pred, if I have relapsed BOOP I should see a huge improvement in my breathing by Monday. If I don't then it's the pneumonia from the Nocardia and I can advise the Docs to taper me back to where I was previously (20mg and backed up by erythromycin).
I just want some sort of functioning body at the end of all this and high dose steroids will rob me of that if used for another year.
I'm finding this all quite frustrating. Today I'm coughing non stop, phlegm is choking me and still no energy. Fits with the ID diagnosis, so there's some bright side to it all.
Had a meeting with a haematologist yesterday. He gave me a good check over and we talked about all my Hodgkins fears, symptoms and the lack of them. His final word was that in his professional opinion he is 99% certain that I am still in remission and that Hodgkins Lymphoma is playing no part in my current health problems. That is very, very good news. (Although Sarah and I decided quite some time ago that we would live life believing that to be the case).
Sunday, June 12, 2011
Sunday June 12th
It's been a good couple of days. My health has now stabilised in so much that each day is much like the one previous. Although I have had periods where I have felt ill, over-all I can't complain. I'm no longer hooked up to oxygen or have cannulas in my arm.
However the point that I have stabilised on is extremely low. I can only walk two or three metres before I need to sit down completely exhausted. My heart racing and my breathing unable to keep up, as if I'd just completed a 100M sprint. Leaning forward, turning and adjusting my pillow, as I have just found out, leads to an only slightly lower level of breathlessness and fatigue.
The problem is I have almost no haemoglobin, and with lungs that aren't processing the oxygen into my blood to start with, what little oxygen that does get in has little chance of hitching a ride to my muscles.
Good news.. My heart valves are in good shape, so that's one less thing to worry about.
CT scan shows a small pocket of air and fluid still in my chest but it's considered small enough to resolve by itself. So hopefully no chest opening and washing out for me. Brain scan revealed nothing. (The doctors drag that old chestnut out every time Ive had one done)
Tomorrow I hopefully get to see the team of specialists and find out the master plan to getting me out of here. I also hope to speak to the dietitian and ask to be put on their special menu as I have now lost 10kg and it's still dropping. The food here is terrible and BOOP has a side effect of turning off your appetite, which doesn't help.
The Hutt hospital dietitian said I could have pizza and chicken! yum.. but then they transferred me to Wellington. I've survived the weekend on chicken salads and coleslaw in a bun. If I see another plate of boiled beans and beef strog I'll throw a very violent, if not brief, tantrum!!
Sarah and I have been blown away by the support offered and given to us by family and friends. In some cases by people that I've only had a tenuous link with, such as customers and acquaintances.
We both thank you all for all that you have done, and offered to do. You have no idea how reassuring it is to know that there's a whole team of people out there covering nearly all the bases for us.
Cheers Guys, you are legends.
However the point that I have stabilised on is extremely low. I can only walk two or three metres before I need to sit down completely exhausted. My heart racing and my breathing unable to keep up, as if I'd just completed a 100M sprint. Leaning forward, turning and adjusting my pillow, as I have just found out, leads to an only slightly lower level of breathlessness and fatigue.
The problem is I have almost no haemoglobin, and with lungs that aren't processing the oxygen into my blood to start with, what little oxygen that does get in has little chance of hitching a ride to my muscles.
Good news.. My heart valves are in good shape, so that's one less thing to worry about.
CT scan shows a small pocket of air and fluid still in my chest but it's considered small enough to resolve by itself. So hopefully no chest opening and washing out for me. Brain scan revealed nothing. (The doctors drag that old chestnut out every time Ive had one done)
Tomorrow I hopefully get to see the team of specialists and find out the master plan to getting me out of here. I also hope to speak to the dietitian and ask to be put on their special menu as I have now lost 10kg and it's still dropping. The food here is terrible and BOOP has a side effect of turning off your appetite, which doesn't help.
The Hutt hospital dietitian said I could have pizza and chicken! yum.. but then they transferred me to Wellington. I've survived the weekend on chicken salads and coleslaw in a bun. If I see another plate of boiled beans and beef strog I'll throw a very violent, if not brief, tantrum!!
Sarah and I have been blown away by the support offered and given to us by family and friends. In some cases by people that I've only had a tenuous link with, such as customers and acquaintances.
We both thank you all for all that you have done, and offered to do. You have no idea how reassuring it is to know that there's a whole team of people out there covering nearly all the bases for us.
Cheers Guys, you are legends.
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