Today is day 28. I've been here the best part of a month, and yet most of it seems a blur.
Yesterday I was visited by family members who had come up from Christchurch for my Mum's 80th birthday dinner on Saturday night. (The doctors had given me the night off to attend but I was very sick on Saturday, so was unable to go)
It was while talking to my family that Sarah and I laid out the progress I've made in the weeks that have passed and also I came to realisation just how sick I was.
To me I just think "I'm sick, but I'm OK" I just deal with what I have and make the best of it.
It was Sarah that reminded me that in the first few days I had to be spoon fed, was on oxygen and had a tube in my chest. That it took three weeks before I could walk again, and only a couple of days ago that I could shower myself. I think your brain just glosses over all that. If I can open the laptop and type a few words, turn on the TV.. I must be OK.
Yesterday was the first time I had enough courage to do some research on my illness.
I was in for a shock. The bug I picked up, Nocardia, is often fatal and usually causes brain damage, heart valve damage and can be extremely hard to remove. No wonder the doctors were in such a spin.
Curiously once in the lungs it demonstrates exactly the same symptoms as BOOP.
It's entirely possible that I've had the bug since late last year and it's been mimicking BOOP and I've been throwing steroids at it. Lowering my immune systems defences even more.
Fact is no one knows, the Doctors can't say and I can only guess. It was two weeks after starting antibiotics that my lungs were tested for the bug, by then it was gone. The question is was it there in the first place, or just in my chest cavity and blood? I think It was in my lungs personally, but that's just a hunch and if I'm guilty of anything it's that I have been second guessing my illness and it's treatment in the dark for quite some time now. (as have the doctors)
If my pneumonia was from nocardia then my experiment with erythromycin may well have been working and I may have been well on my way to weening off prednisone.
My hope is that they will let me try again once my lungs have recovered from this current illness. Apparently they are a mess with even more scarring and fibrosis which never recovers. Those parts of the lung will no longer function. I can live with that. As long as I can walk in the hills and do moderate exercise I'll be fine.
I may well be home in a couple of days, I'm fairly stable now. However I'd like to have seen an increase in my blood counts and a lower heart rate first. I guess if they aren't going to improve, it doesn't make much difference where I am. Home or hospital bed.
The cotrimoxazole antibiotic that I will need to take for six months to battle the nocardia bug also has a negative effect on my blood counts.
The plan for when I return home is to make the house safe for me from falls. My legs are incredibly weak and an effect of the prednisone is that sometimes they just turn off and I fall like a brick to the ground. We will put a hand rail in the shower and any other mods I might need once I've been back for that first day we should have a better idea.
I certainly won't be going upstairs for a while!
We plan to set up my stationary cycle trainer in the lounge and I will sit on that slowly pedalling while watching a movie, TV etc. Daily walks on the treadmill too. My legs are like bits of string. All the doctors comment on them when they first see them. Just skin and bone, the muscle has been stripped by the steroids and 10kg weight loss since arriving here.
Well, I'm off for a short walk around the corridors..
Monday, June 27, 2011
Thursday, June 23, 2011
Yay!
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 :)
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 :)
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).
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