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).
Saturday, June 18, 2011
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.
Wednesday, June 8, 2011
Not a well man..
It's now wednesday, I've been here eight days. The last few days I've been incredibly ill.
The bug I picked up is in my blood and chest cavity, it's usually found in soil, so it's a long way from home!
A team from Infectious Diseases visited me this morning, I guess I'm a curiosity.
They want to transfer me to Wellington Hospital so they can put together a team.
Worst case scenario is that the bug has attacked my heart valves and I will require surgery to repair them.
Also if the fluid in my chest cavity doesn't completely drain and the bug is still hiding in the cavity, They may have to open me up and wash out my chest of any infection.
Scary, scary!!
I do feel a lot better today, but it's relative... I'm still very,very sick.
Will post again when I can. ...Ron
The bug I picked up is in my blood and chest cavity, it's usually found in soil, so it's a long way from home!
A team from Infectious Diseases visited me this morning, I guess I'm a curiosity.
They want to transfer me to Wellington Hospital so they can put together a team.
Worst case scenario is that the bug has attacked my heart valves and I will require surgery to repair them.
Also if the fluid in my chest cavity doesn't completely drain and the bug is still hiding in the cavity, They may have to open me up and wash out my chest of any infection.
Scary, scary!!
I do feel a lot better today, but it's relative... I'm still very,very sick.
Will post again when I can. ...Ron
Saturday, June 4, 2011
Bubble and swing.
I've been very naughty and I'm now paying the price.
It's become apparent that some time ago I contracted a bug called "Nocardia".
It's a fairly uncommon bacteria that attacks mainly people with weakened immune systems and patients who have had stem cell transplants. That would be me. Hutt hospital see's around one case of it a year so it's fairly rare.
I ignored the warning signs and assumed that my decreasing health was probably asthma or my BOOP lung disease.
I started running a high grade fever early last week and took paracetamol to break it.
I thought I'd struggle on for a few days as I really wanted to help out at Rally Wairararapa sweeping.
It's a job Sarah I have done for six years now and we thoroughly enjoy it, I didn't want to miss out.
I promised myself (and Sarah) that I would check in with the hospital as soon as we got back.
Unfortunately over the weekend my health plummeted and I found that I was unable to walk more than a few metres without becoming puffed and my heart racing. At night I ran a high fever and soaked the bed in sweat.
However once dosed up on panadol and neurofen I was still physically able to drive the 4WD sweeper vehicle without any problems. In fact some of our stage times were close to that of the slower
tail end cars.
One reassuring aspect was the fact that our role as sweeper required that we had a paramedic with us at all times. He even offered me oxygen should I need it... (The fact that I was so breathless that a fully trained paramdeic was offering me oxygen should have been a big clue I needed attention.)
Once back in Lower Hutt I arranged to see my GP, knowing full well that I needed to be admitted to hospital urgently. Doing it through my GP fast-tracked the process of getting through the emergency department.
Once under the care of the doctors my body just collapsed, I broke into a massive fever and was wracked with chills and rigor. I developed a pain in my chest that was 9 on the pain scale. When I coughed it felt like all my ribs were broken. I almost passed out with each choking cough.
They pumped me full of morphine but that didn't seem to help, it just made me sleepy but still in massive chest pain.
An Xray showed that I have pneumonia and a pneumo thorax, meaning the lung had detached from the chest wall and the cavity behind was full of air and liquid.
That night they inserted a tube into my chest to drain the fluid and air. The tube attaches to a plastic box that collects the fluid and also shows the movement of the air and quantity of fluid collected.
There's a section on the screen that swings up and down with my breathing and shows that the tube is clear and flowing.
On another is a section where the air can bubble through a coloured liquid to show that draining of air from the chest cavity is occurring. The medical staff call this "Bubble and swing"
I was also given three units of whole blood due to my anemia. 135 or below is considered anemic, my reading was 66 upon admission. My health steadily declined that night to the point I was unable to breath without oxygen, talk or even move unaided. It's the closest I've been to dying. Certainly the sickest I've ever been!
I woke the next morning to a fuzzy world of pain and incredible weakness. My chest tube had blocked and was no longer draining anything. Certainly no bubble or swing.
I was taken down to a theatre to have a new tube inserted using ultrasound to get it positioned perfectly.
That failed and so I was taken immediately to the have a CT scan and markers were placed on my chest so they could guide a wire to the correct position of the pneumo thorax cavity. It worked beautifully and we had bubble and swing as soon as they plugged the large silicone hose into the fitting under my left armpit.
The next day was a blur, too weak to push myself up in bed. Too weak to talk on occasion and had Sarah not spoon fed me the little food I could manage to eat, I'd have gone without. Too weak to even hold the spoon up to my mouth.
It's now saturday afternoon and I still have the drain in my chest, it will be in another day or two.
Today was the first time I am able to stand up un-aided, even if it was only to swing from my bed to a guerney so that I could be taken to have yet another Xray. I've had six xrays since tuesday and one CAT scan.
My strength is slowly coming back, I can just manage to push myself up in bed. However my breathing is still in a terrible state and if I cough I become puffed from the effort and the whole thing snow-balls.. hence the need to be on oxygen 24/7.
I've had a constant stream of well-wishers drop by and visit me (Medical ward 5, room 8, Hutt Hospital) which has been great. Looks like I'll be here for a while longer, I'll post a few updates as I find the energy to write more (This has taken three days to write)
Thanks for everyones well wishes and messages of support.!
...Ron
It's become apparent that some time ago I contracted a bug called "Nocardia".
It's a fairly uncommon bacteria that attacks mainly people with weakened immune systems and patients who have had stem cell transplants. That would be me. Hutt hospital see's around one case of it a year so it's fairly rare.
I ignored the warning signs and assumed that my decreasing health was probably asthma or my BOOP lung disease.
I started running a high grade fever early last week and took paracetamol to break it.
I thought I'd struggle on for a few days as I really wanted to help out at Rally Wairararapa sweeping.
It's a job Sarah I have done for six years now and we thoroughly enjoy it, I didn't want to miss out.
I promised myself (and Sarah) that I would check in with the hospital as soon as we got back.
Unfortunately over the weekend my health plummeted and I found that I was unable to walk more than a few metres without becoming puffed and my heart racing. At night I ran a high fever and soaked the bed in sweat.
However once dosed up on panadol and neurofen I was still physically able to drive the 4WD sweeper vehicle without any problems. In fact some of our stage times were close to that of the slower
tail end cars.
One reassuring aspect was the fact that our role as sweeper required that we had a paramedic with us at all times. He even offered me oxygen should I need it... (The fact that I was so breathless that a fully trained paramdeic was offering me oxygen should have been a big clue I needed attention.)
Once back in Lower Hutt I arranged to see my GP, knowing full well that I needed to be admitted to hospital urgently. Doing it through my GP fast-tracked the process of getting through the emergency department.
Once under the care of the doctors my body just collapsed, I broke into a massive fever and was wracked with chills and rigor. I developed a pain in my chest that was 9 on the pain scale. When I coughed it felt like all my ribs were broken. I almost passed out with each choking cough.
They pumped me full of morphine but that didn't seem to help, it just made me sleepy but still in massive chest pain.
An Xray showed that I have pneumonia and a pneumo thorax, meaning the lung had detached from the chest wall and the cavity behind was full of air and liquid.
That night they inserted a tube into my chest to drain the fluid and air. The tube attaches to a plastic box that collects the fluid and also shows the movement of the air and quantity of fluid collected.
There's a section on the screen that swings up and down with my breathing and shows that the tube is clear and flowing.
On another is a section where the air can bubble through a coloured liquid to show that draining of air from the chest cavity is occurring. The medical staff call this "Bubble and swing"
I was also given three units of whole blood due to my anemia. 135 or below is considered anemic, my reading was 66 upon admission. My health steadily declined that night to the point I was unable to breath without oxygen, talk or even move unaided. It's the closest I've been to dying. Certainly the sickest I've ever been!
I woke the next morning to a fuzzy world of pain and incredible weakness. My chest tube had blocked and was no longer draining anything. Certainly no bubble or swing.
I was taken down to a theatre to have a new tube inserted using ultrasound to get it positioned perfectly.
That failed and so I was taken immediately to the have a CT scan and markers were placed on my chest so they could guide a wire to the correct position of the pneumo thorax cavity. It worked beautifully and we had bubble and swing as soon as they plugged the large silicone hose into the fitting under my left armpit.
The next day was a blur, too weak to push myself up in bed. Too weak to talk on occasion and had Sarah not spoon fed me the little food I could manage to eat, I'd have gone without. Too weak to even hold the spoon up to my mouth.
It's now saturday afternoon and I still have the drain in my chest, it will be in another day or two.
Today was the first time I am able to stand up un-aided, even if it was only to swing from my bed to a guerney so that I could be taken to have yet another Xray. I've had six xrays since tuesday and one CAT scan.
My strength is slowly coming back, I can just manage to push myself up in bed. However my breathing is still in a terrible state and if I cough I become puffed from the effort and the whole thing snow-balls.. hence the need to be on oxygen 24/7.
I've had a constant stream of well-wishers drop by and visit me (Medical ward 5, room 8, Hutt Hospital) which has been great. Looks like I'll be here for a while longer, I'll post a few updates as I find the energy to write more (This has taken three days to write)
Thanks for everyones well wishes and messages of support.!
...Ron
Saturday, May 7, 2011
It's been a while..
So I thought I'd better write an update as to my condition.
I'd gotten quite run down and fatigue was a major issue a few weeks back. The slightest exertion would have me puffing and panting and my heart racing. (it still idles at around 115bpm)
Then one Monday about three weeks ago I just seemed to spark-up and each day since then has seen a small improvement in my stamina and energy levels. The Erythromycin certainly seems to be working in allowing me to use a lower dose of prednisone than would otherwise be required to keep my BOOP in check. I would say that I am certainly on the mend from apparent relapse earlier in the year that caused a steady decline in my health from December till mid April.
I had a meeting with my respiratory Doctor last Thursday afternoon. It was the shortest medical appointment I've ever had. I told him what dose I was administering, for how long, and what my view was on the efficacy of the Erythromycin treatment. I had originally been told that they wanted me to be down to 20mg of Pred as of two weeks ago. I disagreed with this and stayed on a higher level until I was satisfied my body had adjusted. I'm only now just reaching the 22.5mg level.
I asked him if he could see any flaws in my reasoning. He said he agreed with what I was doing. He wrote down what I had said, the dosages of the Erythromycin that I had settled on through my own research, closed his folder. Said that they were all watching my case with great interest, shook my hand and we departed. The whole meeting took only a few minutes.
One bit of bad news was my haemoglobin count. Still waaaaay down at 88, it was 96 last time I checked it. I bet if it were in the normal range above 135 I'd be bouncing off the walls!
Have no idea why it's so low, but I'm hoping that it will improve as the chronic BOOP also dissipates.
I'm still being driven nuts by the constant itch. Life would be great if only I could stop scratching! I've tried herbal teas, lotions, potions and pills. Nothing works. I have some spray I've ordered off the Internet arriving next week. I live in hope!
Sarah and I went on a holiday to Takaka last week. We had a great time, it's a lovely place, however the trip was ruined somewhat by my constant need to scratch.
I'd gotten quite run down and fatigue was a major issue a few weeks back. The slightest exertion would have me puffing and panting and my heart racing. (it still idles at around 115bpm)
Then one Monday about three weeks ago I just seemed to spark-up and each day since then has seen a small improvement in my stamina and energy levels. The Erythromycin certainly seems to be working in allowing me to use a lower dose of prednisone than would otherwise be required to keep my BOOP in check. I would say that I am certainly on the mend from apparent relapse earlier in the year that caused a steady decline in my health from December till mid April.
I had a meeting with my respiratory Doctor last Thursday afternoon. It was the shortest medical appointment I've ever had. I told him what dose I was administering, for how long, and what my view was on the efficacy of the Erythromycin treatment. I had originally been told that they wanted me to be down to 20mg of Pred as of two weeks ago. I disagreed with this and stayed on a higher level until I was satisfied my body had adjusted. I'm only now just reaching the 22.5mg level.
I asked him if he could see any flaws in my reasoning. He said he agreed with what I was doing. He wrote down what I had said, the dosages of the Erythromycin that I had settled on through my own research, closed his folder. Said that they were all watching my case with great interest, shook my hand and we departed. The whole meeting took only a few minutes.
One bit of bad news was my haemoglobin count. Still waaaaay down at 88, it was 96 last time I checked it. I bet if it were in the normal range above 135 I'd be bouncing off the walls!
Have no idea why it's so low, but I'm hoping that it will improve as the chronic BOOP also dissipates.
I'm still being driven nuts by the constant itch. Life would be great if only I could stop scratching! I've tried herbal teas, lotions, potions and pills. Nothing works. I have some spray I've ordered off the Internet arriving next week. I live in hope!
Sarah and I went on a holiday to Takaka last week. We had a great time, it's a lovely place, however the trip was ruined somewhat by my constant need to scratch.
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| Wainui Falls, Takaka |
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