Also thanks to Bob from whom I shamelessly ripped the photo off without permission;) Stay well:)
Showing posts with label North Western Hospital. Show all posts
Showing posts with label North Western Hospital. Show all posts
Saturday, April 21, 2012
The Fab Four
There was but one single day when four CIDP patients were going through the SCT at the same time and we all met up in the patient waiting room for a quick chat and a photo opportunity. From left to right it's Bob, me Wendy and Cory.
Also thanks to Bob from whom I shamelessly ripped the photo off without permission;) Stay well:)
Also thanks to Bob from whom I shamelessly ripped the photo off without permission;) Stay well:)
Sunday, April 15, 2012
Day +4
So, it has now been four days since my transplant and six days since my last bout of chemotherapy and if I am to be honest I have to say I still feel like crap.
But 'crap' is such a wee fickle and relative word. Compared to four days ago, I feel amazing. However, I am still a long way from normal. It is still a struggle to walk one lap of the ward and summoning up the strength to have a morning shower feels like mustering up the power to run a marathon.
But I don't want to whinge. Now I am through the other side and fingers crossed, it will all be onwards and upwards from here. But I did have a slight hiccup today. It was strange because as I said before I felt fine (relatively) so I was surprised when my temperature came in at 100.4F. That was considered a low grade fever.
Interestingly enough, I normally feel like I know when a fever is coming on, but here I was genuinely surprised. Anyway, they gave me an extra shot of antibiotics and everything is back to where it should be. The other thing I noticed was that I have developed a rash on my trunk and back. Since it doesn't itch or hurt and looks like clearing up, the doctors are not too worried.
Well, tomorrow I hope that I can go back to giving you lots of boring news and I'll be feeling better still. Until next time, stay well:)
But 'crap' is such a wee fickle and relative word. Compared to four days ago, I feel amazing. However, I am still a long way from normal. It is still a struggle to walk one lap of the ward and summoning up the strength to have a morning shower feels like mustering up the power to run a marathon.
But I don't want to whinge. Now I am through the other side and fingers crossed, it will all be onwards and upwards from here. But I did have a slight hiccup today. It was strange because as I said before I felt fine (relatively) so I was surprised when my temperature came in at 100.4F. That was considered a low grade fever.
Interestingly enough, I normally feel like I know when a fever is coming on, but here I was genuinely surprised. Anyway, they gave me an extra shot of antibiotics and everything is back to where it should be. The other thing I noticed was that I have developed a rash on my trunk and back. Since it doesn't itch or hurt and looks like clearing up, the doctors are not too worried.
Well, tomorrow I hope that I can go back to giving you lots of boring news and I'll be feeling better still. Until next time, stay well:)
Day +3
I think what I need more than anything is some patients. Don't get me wrong, I know I can't go anywhere and I don't plan to. Honestly, leaving the sterile environment of the 15th floor Prentise building without the benefits of IV antibiotics would be really stupid, but I've been away from home a long time now and I am just willing the days until my counts are back up and I can go.
Aside from that, my counts are still bottomed out and I can't expect them to pick up by themselves for at least five more days. But for me, for now it is just trying to pass the time and feel as well as possible. Until next time, stay well:)
Aside from that, my counts are still bottomed out and I can't expect them to pick up by themselves for at least five more days. But for me, for now it is just trying to pass the time and feel as well as possible. Until next time, stay well:)
Saturday, April 14, 2012
Day +2
Every day I'm feeling a little better and a little stronger. I'm still relying on the marinol for a little anti nausea and to give me a small feeling of appetite, but hopefully tomorrow that cease to be the case and I'll be able to eat unrestrained.
Interestingly enough, I don't think that in Australia they approve MMJ for medical purposes. Having only taken it in a hospital setting here in Chicago I really don't know why. I mean what I've gone through in the past week ain't fun, but the marinol has certainly made it easier. Provided it is administered properly, I don't have a problem with it at all. It is all to do with patient comfort.
As for my counts, well, they have started writing TLTC which stands for 'too low to count'. Normally counts rise by their own on day +8 to day +12 and that is the point they will let me out. Right now, we are just waiting and watching, but it is nice to feel through the worst of it. Until tomorrow, stay well:)
Interestingly enough, I don't think that in Australia they approve MMJ for medical purposes. Having only taken it in a hospital setting here in Chicago I really don't know why. I mean what I've gone through in the past week ain't fun, but the marinol has certainly made it easier. Provided it is administered properly, I don't have a problem with it at all. It is all to do with patient comfort.
As for my counts, well, they have started writing TLTC which stands for 'too low to count'. Normally counts rise by their own on day +8 to day +12 and that is the point they will let me out. Right now, we are just waiting and watching, but it is nice to feel through the worst of it. Until tomorrow, stay well:)
Friday, April 13, 2012
Day +1
I really wanted to write these posts on the day of the day I actually passed through them. I am a day behind, but I am OK with that. I think that to be anywhere else would be unrealistic.
So how am I feeling? I feel better than yesterday and hopefully that will be a trend that will continue as I progress. The biggest problem however is the dribbling. Saliva keeps running to my mouth and if I do not expel it will make me feel sick. But being in hospital is not the time to worry about manners and etiquette, so my best friend has been a delightful yellow bucket that I can use to contain any unwanted discharges.
But even though I still feel pretty ordinary I am actually exactly where I want to be. When you go into something like this you don't expect to just feel good the very next day. I expected the slow deterioration through the chemotherapy and so far the recovery from that has been pretty much what I could have imagined.
Saying that, I am currently neutropenic, basically meaning I don't have an immune system so there is plenty of potential for things to go wrong. Hopefully they won't. They are giving me plenty of antibiotics, so for now, it is just sit back relax and recover. Until tomorrow, stay well:)
So how am I feeling? I feel better than yesterday and hopefully that will be a trend that will continue as I progress. The biggest problem however is the dribbling. Saliva keeps running to my mouth and if I do not expel it will make me feel sick. But being in hospital is not the time to worry about manners and etiquette, so my best friend has been a delightful yellow bucket that I can use to contain any unwanted discharges.
But even though I still feel pretty ordinary I am actually exactly where I want to be. When you go into something like this you don't expect to just feel good the very next day. I expected the slow deterioration through the chemotherapy and so far the recovery from that has been pretty much what I could have imagined.
Saying that, I am currently neutropenic, basically meaning I don't have an immune system so there is plenty of potential for things to go wrong. Hopefully they won't. They are giving me plenty of antibiotics, so for now, it is just sit back relax and recover. Until tomorrow, stay well:)
My room for transplant
I'll talk more about the rooms in more detail later. They do so much better here in the USA, but visa versa too. I think explaining these differences may lead to better health care ideas in both countries. For now, here is the video of my room. Stay well:)
Wednesday, April 11, 2012
Transplant Day!
The day I have been waiting for is finally here. I would love to say that it was all pomp and ceremony, glitz and glamor, but the whole parade was quite anticlimactic really. Or was it? From the outside looking in it may look like that, but from the inside it is massive. Truly I have struggled with the words and honestly I could not better than the words of my friend Bob Boen who wrote this on FaceBook.
"Today is a very special day! Not for me, but for two of my very good friends in the SCT unit at Northwestern. As I write this note, Andrew Price and Cory Smallegan are both undergoing their Stem Cell Transplantation procedures up on the 15th floor at the Prentice Hospital on the Northwestern Campus.
I know that their wives, Suzie Price and Amanda Smallegan are there with them to aid and comfort them both, and will be with them to share in the success and achievement of the day. This has not been an easy road to travel for either Andrew or Cory, as they had to fight very hard just to get into the program in the first place, and then struggle just as hard to cope with the multiple number of tests and procedures just to stay in the program.
This is not an easy road to walk. Trust me on this... I know of what I speak.
Cory and Andrew will join a very rare and exclusive club today. They will become the 27th and 28th persons (respectively) in North America to become CIDP Stem Cell Transplant survivors, and thence to have a chance to put this disease into remission.
I will follow them in 15 days with my transplantation on April 25th, followed by my friend Wendy Nash with her transplant on April 26th.
Our entry back into the program should in no way diminish Andrew and Cory's accomplishment of today, but rather should serve to underscore our mutual deep sense of gratitude and thanks towards Dr. Burt and his staff for getting us to this point at all!"
"Today is a very special day! Not for me, but for two of my very good friends in the SCT unit at Northwestern. As I write this note, Andrew Price and Cory Smallegan are both undergoing their Stem Cell Transplantation procedures up on the 15th floor at the Prentice Hospital on the Northwestern Campus.
I know that their wives, Suzie Price and Amanda Smallegan are there with them to aid and comfort them both, and will be with them to share in the success and achievement of the day. This has not been an easy road to travel for either Andrew or Cory, as they had to fight very hard just to get into the program in the first place, and then struggle just as hard to cope with the multiple number of tests and procedures just to stay in the program.
This is not an easy road to walk. Trust me on this... I know of what I speak.
Cory and Andrew will join a very rare and exclusive club today. They will become the 27th and 28th persons (respectively) in North America to become CIDP Stem Cell Transplant survivors, and thence to have a chance to put this disease into remission.
I will follow them in 15 days with my transplantation on April 25th, followed by my friend Wendy Nash with her transplant on April 26th.
Our entry back into the program should in no way diminish Andrew and Cory's accomplishment of today, but rather should serve to underscore our mutual deep sense of gratitude and thanks towards Dr. Burt and his staff for getting us to this point at all!"
On a less up beat note, our friend Wendy Nash, who is slated for her transplant on the 26th of April has had some complications. Please could you all spare a thought for her as she tries to come to terms with this ordeal.
Until next time, stay well:)
Saturday, April 7, 2012
Wednesday, March 21, 2012
Last one EVER!!!!!!!
Well hopefully anyway. Dr Burt says that some patients may need more afterwards but hopefully that won't be me. Oh, silly me I haven't told you the last one of what yet. The last IVIG treatment EVER. Anyone that has IVIG knows how much it sucks. Basically you go into the hospital, get hooked up to an IV, sit there all day then leave with a head ache and feeling like crap. Yes, it is like an outing to Movie World.
And I just had my very last one ever. There were some differences between having the treatment here and in Australia some were better and some weren't. On the plus side at North Western there was just one bottle of IVIG. Admittedly, it was a very big bottle that contained 70gms of IVIG, but in Australia I have five bottles each containing 12gms and three bottles of 3gms. It makes for a much longer day as there has to be seven change overs and a much higher probability of something going wrong.
They also ran it through at a much higher rate of 300ml/hr as opposed to 240ml/hr so I was done much quicker than at Cabrini in Melbourne. Lastly, the good nurses at North Western gave me paracetamol and Benadryl which helped a lot.
So where does Cabrini have the upper hand? Well, quite simply, the day oncology department at Cabrini is simply more comfortable. At the North Western blood centre I felt like I was placed in a broom cupboard that had three recliners in it and mine was in the door way. Cabrini may have more recliners in it but there is also more room and a window that looks out onto a garden. They also run fluids through with the IVIG which helps, but I did prefer the Benadryl and paracetamol.
Probably the most amazing thing is the service. Now given my experience over the last month, I have to say that hands down, Americans are the kings of customer service. But, not in this case. The service you get at Cabrini is outstanding and the food is better too and the recliners are more comfortable. Now it is not that the the nurses and staff were bad at North Western. They were fantastic. It is simply that there are more nurses on staff at Cabrini and the support staff are also a lot more visible and available (Yes Patrick, that means you). And at North Western it is hard to get someones attention when you are stuck in a broom closet.
But back to the point at hand. My last IVIG ever and I will take this opportunity to thank everyone that has given blood ever. Your gift has given life and helped me every month for the last ten years. It has kept me walking. It has kept me functional it has even saved my life. So thanks to all donors, you guys rock! Until next time, stay well:)
And I just had my very last one ever. There were some differences between having the treatment here and in Australia some were better and some weren't. On the plus side at North Western there was just one bottle of IVIG. Admittedly, it was a very big bottle that contained 70gms of IVIG, but in Australia I have five bottles each containing 12gms and three bottles of 3gms. It makes for a much longer day as there has to be seven change overs and a much higher probability of something going wrong.
 |
| IVIG |
So where does Cabrini have the upper hand? Well, quite simply, the day oncology department at Cabrini is simply more comfortable. At the North Western blood centre I felt like I was placed in a broom cupboard that had three recliners in it and mine was in the door way. Cabrini may have more recliners in it but there is also more room and a window that looks out onto a garden. They also run fluids through with the IVIG which helps, but I did prefer the Benadryl and paracetamol.
Probably the most amazing thing is the service. Now given my experience over the last month, I have to say that hands down, Americans are the kings of customer service. But, not in this case. The service you get at Cabrini is outstanding and the food is better too and the recliners are more comfortable. Now it is not that the the nurses and staff were bad at North Western. They were fantastic. It is simply that there are more nurses on staff at Cabrini and the support staff are also a lot more visible and available (Yes Patrick, that means you). And at North Western it is hard to get someones attention when you are stuck in a broom closet.
But back to the point at hand. My last IVIG ever and I will take this opportunity to thank everyone that has given blood ever. Your gift has given life and helped me every month for the last ten years. It has kept me walking. It has kept me functional it has even saved my life. So thanks to all donors, you guys rock! Until next time, stay well:)
Sunday, March 18, 2012
Saturday, March 17, 2012
The Harvest
It made for a busy day. My alarm clock woke me up at 6.30am. I was not allowed breakfast so I went straight into the shower before dressing in my hospital garb. Yes, I do have clothes I wear just for the hospital. There is no room for fashion when dressing for the hospital. For me, it involves a t-shirt, loose fitting sweater, tracksuit pants, comfy socks and running shoes.
After dressing it was time to have my last neupogen shot before heading to the hospital with my mother. My first appointment was with interventional radiology. Which I guess id a nice way of saying they want to do something nasty to you while taking an x-ray at the same time. I was here to have my temporary catheter inserted in my chest. I wanted to video tape it, but the set up was exactly like a real operating room, so I wasn't able to bring my bloggie.
Like the bone marrow transplant, there was no pain during the procedure but it was uncomfortable. You wouldn't do this for fun either. Once we got there we were asked to wait in a holding room whilst we filled out all the mandatory paperwork (again). We were then consulted by the nurse and the doctor came around. Luckily for me I was the first cab off the rank that day so there was virtually no waiting. Before I knew it I was being trollied around level four of the Galter building to the operating suite.
Once there the room was very busy with the prominent exception of one kind of important individual, the doctor was not there. However, he was not far away so the nurses started busying themselves preparing me for the procedure. Again I found myself talking about the usual rubbish in order to keep my mind off the procedure. After they had laden me in antibacterial and sterilising solution it was time to get the show on the road.
Normally the doctors prefer to put the catheter in the right shoulder, but since the wires for my neural stimulator run down the right side of my neck into my chest, they decided to go in the other side. I wasn't too unhappy about that. They then moved the x-ray machine over my chest which looked like some UFO from a sic-fi movie. The doctor had me turn my head away while he worked so I could not see a thing. It felt like a lot of pulling and pushing, but after about ten minutes he was done and I had three delightful tubes protruding from my neck.
They had me sit in the recovery area for about ten minutes before letting me go and then it was down two floors to the blood centre. Before they got started they had to draw some blood to test. While I waited for the results they told me to go and get some breakfast which I was quite happy about as hunger had certainly started to take hold. I have to say though that the cafe at North Western Hospital does not do a very good breakfast. After which I felt myself feeling a little worse. The local anaesthetic in my shoulder was starting to wear off and pain was beginning to proliferate. So we headed back to the blood centre where we were immediately shown through to our apheresis room.
The nurse checked the catheter site and adjusted the taping. She then gave me some Tylenol and we were good to go. She connected up the apheresis machine, which looked more like a computer from a bad 1960's space movie and away we went. Video and pictures will follow later. I then sat back and relaxed as the four hours of blood processing began. The main symptom I had during the process was tingling in my face and teeth. This is because the calcium in your body is slowly leached, so to counter this they gave me a supplement via the IV.
Tick, tock, tick, tock........ The time seemes to pass by very slowly. Luckily I had Ferris Beuler to keep me company as I snailed my way through this endeavour. And what a great movie. Any self respecting 80's kid has to have it in their top ten.
When it was all done the catheter line could come out, and an apple juice and half an hour later I was ready to go. Upon completion I would have to say that I did not feel that bad, but certainly not 100%. I was mildly feverish, had a headache and felt extremely warn out, so it was back to the hotel for a sleep and some food and I felt much better. Until next time, stay well:)
After dressing it was time to have my last neupogen shot before heading to the hospital with my mother. My first appointment was with interventional radiology. Which I guess id a nice way of saying they want to do something nasty to you while taking an x-ray at the same time. I was here to have my temporary catheter inserted in my chest. I wanted to video tape it, but the set up was exactly like a real operating room, so I wasn't able to bring my bloggie.
Like the bone marrow transplant, there was no pain during the procedure but it was uncomfortable. You wouldn't do this for fun either. Once we got there we were asked to wait in a holding room whilst we filled out all the mandatory paperwork (again). We were then consulted by the nurse and the doctor came around. Luckily for me I was the first cab off the rank that day so there was virtually no waiting. Before I knew it I was being trollied around level four of the Galter building to the operating suite.
Once there the room was very busy with the prominent exception of one kind of important individual, the doctor was not there. However, he was not far away so the nurses started busying themselves preparing me for the procedure. Again I found myself talking about the usual rubbish in order to keep my mind off the procedure. After they had laden me in antibacterial and sterilising solution it was time to get the show on the road.
Normally the doctors prefer to put the catheter in the right shoulder, but since the wires for my neural stimulator run down the right side of my neck into my chest, they decided to go in the other side. I wasn't too unhappy about that. They then moved the x-ray machine over my chest which looked like some UFO from a sic-fi movie. The doctor had me turn my head away while he worked so I could not see a thing. It felt like a lot of pulling and pushing, but after about ten minutes he was done and I had three delightful tubes protruding from my neck.
They had me sit in the recovery area for about ten minutes before letting me go and then it was down two floors to the blood centre. Before they got started they had to draw some blood to test. While I waited for the results they told me to go and get some breakfast which I was quite happy about as hunger had certainly started to take hold. I have to say though that the cafe at North Western Hospital does not do a very good breakfast. After which I felt myself feeling a little worse. The local anaesthetic in my shoulder was starting to wear off and pain was beginning to proliferate. So we headed back to the blood centre where we were immediately shown through to our apheresis room.
The nurse checked the catheter site and adjusted the taping. She then gave me some Tylenol and we were good to go. She connected up the apheresis machine, which looked more like a computer from a bad 1960's space movie and away we went. Video and pictures will follow later. I then sat back and relaxed as the four hours of blood processing began. The main symptom I had during the process was tingling in my face and teeth. This is because the calcium in your body is slowly leached, so to counter this they gave me a supplement via the IV.
Tick, tock, tick, tock........ The time seemes to pass by very slowly. Luckily I had Ferris Beuler to keep me company as I snailed my way through this endeavour. And what a great movie. Any self respecting 80's kid has to have it in their top ten.
When it was all done the catheter line could come out, and an apple juice and half an hour later I was ready to go. Upon completion I would have to say that I did not feel that bad, but certainly not 100%. I was mildly feverish, had a headache and felt extremely warn out, so it was back to the hotel for a sleep and some food and I felt much better. Until next time, stay well:)
Friday, March 9, 2012
Thursday, March 8, 2012
I can't sleep.....
With all the drugs they have given me over the last 24 hours I can't sleep. I'll start with where I left off last post. I am now pretty much all the way through now so I should be able to give you a fairly accurate account of what happened.
The first thing that they started was the fluids. 150mm per hour of saline for 24 hours. That is 3.6 litres of fluid over the entire day plus all the water and other fluids I ingest. After that the fun stuff starts. The first drug they give you (and for me that started at 3.00pm) was a drug called Mesna. Mesna is a drug they use to alleviate the symptoms of the chemotherapy drugs. How it works I am not quite sure. When I came in yesterday I didn't know it was on the cocktail menu so I haven't had time to research it yet.
After that they ran through a dose of zofran for a prophylactic anti nausea, they also ran through a shot of dexamethazone for the same reason. This was weird they said that it could make your arse feel like it was on fire. I wouldn't say it felt like my arse was on fire, but I did feel rather intense pins and needles all over my anus. Delightful hey. Luckily, It only lasted a couple of minutes and then it was over.
Next, the main event. The chemotherapy. They give just a single dose of a drug called Cytoxan in order to kill off a few blood cells. The resulting outcome is the body goes into stem cell overdrive in order to replace what has been lost, so in ten days when harvesting starts their are plenty of little stemmies to collect. The cytoxan was run for about two hours. But there was a problem.
I starter getting a side effect to the cytoxan called wasabi nose, because you get a burning sensation in your nose. Seriously I felt like I had been sniffing chilli powder and I was twitching my nose like a rabbit on steroids. In order to get past this the infusion rate of the cytoxan was reduced and gave me some benadryl which made me feel drowsy.
In order to make sure that I wasn't retaining all the water that they had given me they also gave me a drug called lasix which is designed to make you go to the toilet. So if it wasn't enough to chuck 3.6 litres of fluid through my system I needed something to make me go even more. Over the night I had three courses and on the first one I passed over a litre of urine in 45 minutes. That level of urine output made my kidneys hurt more, so to combat this they gave me some Norco and Fiorcet, which were both analgesia to arrest the pain, and this seemed to work fine.
The other problem I had was that after I ate my evening meal of lasagne and mac and cheese I started to feel a little nauseas. I decided to tell the nurse as I thought it best to nip this one in the bud, which I think was the right thing to do as they gave me more zofran and I felt fine. Courtesy of the benadryl I then slept for four hours where I woke up at two and couldn't go back to sleep. So I polished of the remaining of season two of Supernatural. After breakfast I fell asleep again and woke up around 12.30, just in time for lunch.
So how do I feel. Honestly, for those that are following me through the SCT process, there is nothing to fear from mobilisation (so far). Apparently my WBC will hit rock bottom in about five days so I might not be over the fun part yet. Also, hair falls out about the five day mark so I will keep you informed of any follicle displacement. So right now, all is good. I have lots of reading to do and I still need instruction on what to do with the prophylactic medications they want me to take at home and the neupogen shots.
I will keep you posted. Until next time, stay well:)
The first thing that they started was the fluids. 150mm per hour of saline for 24 hours. That is 3.6 litres of fluid over the entire day plus all the water and other fluids I ingest. After that the fun stuff starts. The first drug they give you (and for me that started at 3.00pm) was a drug called Mesna. Mesna is a drug they use to alleviate the symptoms of the chemotherapy drugs. How it works I am not quite sure. When I came in yesterday I didn't know it was on the cocktail menu so I haven't had time to research it yet.
After that they ran through a dose of zofran for a prophylactic anti nausea, they also ran through a shot of dexamethazone for the same reason. This was weird they said that it could make your arse feel like it was on fire. I wouldn't say it felt like my arse was on fire, but I did feel rather intense pins and needles all over my anus. Delightful hey. Luckily, It only lasted a couple of minutes and then it was over.
Next, the main event. The chemotherapy. They give just a single dose of a drug called Cytoxan in order to kill off a few blood cells. The resulting outcome is the body goes into stem cell overdrive in order to replace what has been lost, so in ten days when harvesting starts their are plenty of little stemmies to collect. The cytoxan was run for about two hours. But there was a problem.
I starter getting a side effect to the cytoxan called wasabi nose, because you get a burning sensation in your nose. Seriously I felt like I had been sniffing chilli powder and I was twitching my nose like a rabbit on steroids. In order to get past this the infusion rate of the cytoxan was reduced and gave me some benadryl which made me feel drowsy.
In order to make sure that I wasn't retaining all the water that they had given me they also gave me a drug called lasix which is designed to make you go to the toilet. So if it wasn't enough to chuck 3.6 litres of fluid through my system I needed something to make me go even more. Over the night I had three courses and on the first one I passed over a litre of urine in 45 minutes. That level of urine output made my kidneys hurt more, so to combat this they gave me some Norco and Fiorcet, which were both analgesia to arrest the pain, and this seemed to work fine.
The other problem I had was that after I ate my evening meal of lasagne and mac and cheese I started to feel a little nauseas. I decided to tell the nurse as I thought it best to nip this one in the bud, which I think was the right thing to do as they gave me more zofran and I felt fine. Courtesy of the benadryl I then slept for four hours where I woke up at two and couldn't go back to sleep. So I polished of the remaining of season two of Supernatural. After breakfast I fell asleep again and woke up around 12.30, just in time for lunch.
So how do I feel. Honestly, for those that are following me through the SCT process, there is nothing to fear from mobilisation (so far). Apparently my WBC will hit rock bottom in about five days so I might not be over the fun part yet. Also, hair falls out about the five day mark so I will keep you informed of any follicle displacement. So right now, all is good. I have lots of reading to do and I still need instruction on what to do with the prophylactic medications they want me to take at home and the neupogen shots.
I will keep you posted. Until next time, stay well:)
Wednesday, March 7, 2012
It's procedure time
This is where I had my IV put in for mobilisation. It is only an IV line, just about everyone has had it done before. But this for me was different. I have never had chemo before, so this did get the nervousness going a bit. Not that my BP would give anything away, it was a picture perfect 117 over 73. This video does however highlight the fact I need to lose weight. Well in August anyway. Stay well:)
Waiting....
Well the day has finally arrived. This morning I woke up at the Senaca Hotel bright and early so I had time to get ready for my 7.30am appointment at the second floor of the Feinberg Pavilion. Because I had my overnight bag and I was worried about being late we decided to catch a cab.
At around 7.45am we were greeted by the admissions representative who told us to sit tight whilst they tried to prepare a room for us, so we waited. The waiting doesn't really bother me. I know I'll be in here overnight so whether I wait now or later is really of no consequence.
At around 8.30 the rep came back and we were off to find my hospital room. It was quite a hike. We took the elevator down to the basement and from there we walked through the bowels of the hospital to the Prentice Women's Building where I am to undergo mobilisation chemotherapy. At this point the admitting rep said his goodbyes and I was introduced to Marie, my Patient Care Technician (PCT) and Jon the RN. After the standard formality with the paperwork and signing the necessary disclaimers, Jon hooked me up to the IV and started running fluids through.
At 11.00 Amy came in to ask me all the standard questions. Do I have diabetes? Do I smoke? Have I ever had a toy car get stuck in my ear? Have I ever got my hand caught in a vending machine? (FYI, the answer is no to all) She also ran me through the whole procedure and answered all my questions so I would know what to expect.
Now I am just waiting for the nurse to come in and get the ball rolling. All the meds have been ordered, Dr Burt has signed off on everything, so all that's left to do is get this party started. Well, infusion anyway. Stay well:)
At around 7.45am we were greeted by the admissions representative who told us to sit tight whilst they tried to prepare a room for us, so we waited. The waiting doesn't really bother me. I know I'll be in here overnight so whether I wait now or later is really of no consequence.
At around 8.30 the rep came back and we were off to find my hospital room. It was quite a hike. We took the elevator down to the basement and from there we walked through the bowels of the hospital to the Prentice Women's Building where I am to undergo mobilisation chemotherapy. At this point the admitting rep said his goodbyes and I was introduced to Marie, my Patient Care Technician (PCT) and Jon the RN. After the standard formality with the paperwork and signing the necessary disclaimers, Jon hooked me up to the IV and started running fluids through.
At 11.00 Amy came in to ask me all the standard questions. Do I have diabetes? Do I smoke? Have I ever had a toy car get stuck in my ear? Have I ever got my hand caught in a vending machine? (FYI, the answer is no to all) She also ran me through the whole procedure and answered all my questions so I would know what to expect.
Now I am just waiting for the nurse to come in and get the ball rolling. All the meds have been ordered, Dr Burt has signed off on everything, so all that's left to do is get this party started. Well, infusion anyway. Stay well:)
Sunday, February 26, 2012
It's cold today
If my kids were here today they would have gone nuts! When I woke up this morning and looked out of the window it was snowing. The last time that I saw real snow was back in 2002. My wife and I were on our honeymoon and we went to Niagara Falls on a bus tour. When we woke up in the morning there was a light dusting of snow on the ground and for some reason the tour guide was extremely apologetic about the awful weather. I don't think she really understood that the majority of Aussie tourists on the bus rarely saw snow and we were all running around outside like kids in a toy store having a great time.
I have to say when I looked out the window and saw the snow a childish grin beamed across my face as the thought of listening to the fresh snow crunch under foot and the cold flakes bite against my face seemed quite appealing. However, that feeling did not last long as my felt like they were in roller skates under the fresh snow and someone had replaced the rubber stopper on my walking stick with ball bearings.
Luckily I managed to make it to the hospital unscathed and the first thing I had to do was go up to laboratory services and drop off the two and a half litres of sample that had been requested by the good doctors. It did feel nice not to have to lug around a big bottle of urine any more but I do feel that one thing that Australia could learn from the hospital here is to get some decent bottles for the 24 hour urine tests. The bottle they provided here was so much easier to use and it didn't leak either. The bottles they use in Australia are just like over sized milk containers and inevitably leak around the top.
After the drop off, it was time to see Dr Allen, the neurologist. Again I had the standard form routine followed by the nurse who weighed and measured me and also took my vitals. Still everyone was extremely nice, something some service orientated staff in Australia could learn. After that it was time to see the doctor.
He had already done all the nerve conduction studies, so it was all about taking my history first, doing the manual observations like strength and feeling and then asking me a few questions about the SCT. He really wanted to find out two things for Dr Burt. First, he needed to give his own diagnosis on whether I did in fact have CIDP (a diagnosis with which he concurred) and that I had tried enough treatments to render an SCT necessary. After 12 years of CIDP and the full range of treatments in-between, he was confident I had done enough.
We also talked about my expectations and he said even if the SCT is successful, the degradation in my feet and around my thumbs might be too much to reverse. Unfortunate, but understandable. I am looking at this procedure as worst case scenario stopping the progression of this disease dead in its tracks. Anything more than that is a bonus.
Well, that is about it for me today, until next time, stay well:)
I have to say when I looked out the window and saw the snow a childish grin beamed across my face as the thought of listening to the fresh snow crunch under foot and the cold flakes bite against my face seemed quite appealing. However, that feeling did not last long as my felt like they were in roller skates under the fresh snow and someone had replaced the rubber stopper on my walking stick with ball bearings.
Luckily I managed to make it to the hospital unscathed and the first thing I had to do was go up to laboratory services and drop off the two and a half litres of sample that had been requested by the good doctors. It did feel nice not to have to lug around a big bottle of urine any more but I do feel that one thing that Australia could learn from the hospital here is to get some decent bottles for the 24 hour urine tests. The bottle they provided here was so much easier to use and it didn't leak either. The bottles they use in Australia are just like over sized milk containers and inevitably leak around the top.
After the drop off, it was time to see Dr Allen, the neurologist. Again I had the standard form routine followed by the nurse who weighed and measured me and also took my vitals. Still everyone was extremely nice, something some service orientated staff in Australia could learn. After that it was time to see the doctor.
He had already done all the nerve conduction studies, so it was all about taking my history first, doing the manual observations like strength and feeling and then asking me a few questions about the SCT. He really wanted to find out two things for Dr Burt. First, he needed to give his own diagnosis on whether I did in fact have CIDP (a diagnosis with which he concurred) and that I had tried enough treatments to render an SCT necessary. After 12 years of CIDP and the full range of treatments in-between, he was confident I had done enough.
We also talked about my expectations and he said even if the SCT is successful, the degradation in my feet and around my thumbs might be too much to reverse. Unfortunate, but understandable. I am looking at this procedure as worst case scenario stopping the progression of this disease dead in its tracks. Anything more than that is a bonus.
Well, that is about it for me today, until next time, stay well:)
Friday, February 24, 2012
How was my day
You know, I gave it some thought and realised that my schedule is fraught with danger. The appointments are actually quite close together and if the first one is late, it could throw out my whole day, bouncing around from late appointment to late appointment. Fortunately, the day went really smoothly and again was very productive one.
I started off with a visit to the infectious disease expert, Dr Ison. One thing about North Western is they are so thorough it is borderline obsessive compulsive. Again I was asked to fill out some paperwork and check over the same information to check that I am really me. One thing I find funny is that the first question on the form is about insurance. I have to admit that the hospital and its facilities are probably the best I've ever seen, but I feel that those facilities might be out of reach without the proper insurance or finances.
After the forms a nurse showed me through to a consulting room where they took my vitals and quizzed me about why I was here to see Dr Ison, after which I was left by myself to await the good doctor. The next people who came into the room were the pharmacy people who wanted to write down my entire list of medications that I take on a day to day basis.
They then left and once again I was left by myself until Dr Ison came in. He was a nice man and we got straight down to business. Dr Burt was worried about the complications my brain stimulator might have on the transplant. Apparently implanted medical devices can harbour bacteria which could be a problem when you have no immune system. His main concern was that I would have wires exposed through the skin and since I don't he really wasn't worried. Personally, this for me was a huge relief. I had been worried about the implications because if an infection did manifest itself in my stimulator, it would have a short track right to the middle of my brain. It is still a factor for me, but at least now I am much more comfortable with it.
After then it was back to laboratory services where this time they actually had my order. I thought seeing that I had a bunch of blood work done back home in Australia they wouldn't need that much. I was wrong. I think there were actually 28 tubes. I had a great nurse and we got straight into it. After five tubes we were still going strong. After ten things were starting to slow down, and about the twenty mark we were really starting to struggle.
With just four tubes to go the vein dried up and alas I had to get stuck again. At least I have two arms so it was off to the other side and the rest was a breeze. The other great thing about it was I didn't have to wait long so I had time to go to the cafeteria for a quick bite before I finally got to go see the legend, Dr Burt.
Now I hate putting doctors up on a pedestal like that. I believe that doctors are people too and we need to test them to make sure that they are doing their job properly. But Dr Burt does fit the mould of legend. He is not just practicing medicine, he is writing a whole new chapter of his own. The work he is doing has the potential to help a lot of people in the future. However, doctors are people too and can have bad days and make mistakes. As a patient I believe that you have an obligation to make sure a doctor is giving you the best care available.
In Dr Burt's case I don't think there will be a problem. He seemed extremely knowledgeable and was very personable and engaging. Don't you just hate it when someone is that great in every way? He got the ball rolling by telling me about his trip down under and his little sojourn down the great ocean road. If you reading this Dr Burt, the Victorian Police department thanks you for your kind donation;)
What people said about him being fast was also true. Don't get me wrong he was thorough, but after Paula had taken my vitals (again) he came in and did his thing and left. I had questions to ask him, most of which we covered in the main part of the consultation but I only just got my last question in while he had one foot out the door. I feel quite comfortable being under his care.
Given the mix up of the first day, I have to say that the hospital has got an A+ for the last two days. Right now I have the joyful task of a 24hr urine test, which has rendered me pretty much hotel bound for the day. I have to keep the sample refrigerated too, so it is sitting on the second shelf of my fridge next to my water bottle. Man I hope I don't make a mistake:0
Until next time, stay well:)
I started off with a visit to the infectious disease expert, Dr Ison. One thing about North Western is they are so thorough it is borderline obsessive compulsive. Again I was asked to fill out some paperwork and check over the same information to check that I am really me. One thing I find funny is that the first question on the form is about insurance. I have to admit that the hospital and its facilities are probably the best I've ever seen, but I feel that those facilities might be out of reach without the proper insurance or finances.
After the forms a nurse showed me through to a consulting room where they took my vitals and quizzed me about why I was here to see Dr Ison, after which I was left by myself to await the good doctor. The next people who came into the room were the pharmacy people who wanted to write down my entire list of medications that I take on a day to day basis.
They then left and once again I was left by myself until Dr Ison came in. He was a nice man and we got straight down to business. Dr Burt was worried about the complications my brain stimulator might have on the transplant. Apparently implanted medical devices can harbour bacteria which could be a problem when you have no immune system. His main concern was that I would have wires exposed through the skin and since I don't he really wasn't worried. Personally, this for me was a huge relief. I had been worried about the implications because if an infection did manifest itself in my stimulator, it would have a short track right to the middle of my brain. It is still a factor for me, but at least now I am much more comfortable with it.
After then it was back to laboratory services where this time they actually had my order. I thought seeing that I had a bunch of blood work done back home in Australia they wouldn't need that much. I was wrong. I think there were actually 28 tubes. I had a great nurse and we got straight into it. After five tubes we were still going strong. After ten things were starting to slow down, and about the twenty mark we were really starting to struggle.
With just four tubes to go the vein dried up and alas I had to get stuck again. At least I have two arms so it was off to the other side and the rest was a breeze. The other great thing about it was I didn't have to wait long so I had time to go to the cafeteria for a quick bite before I finally got to go see the legend, Dr Burt.
Now I hate putting doctors up on a pedestal like that. I believe that doctors are people too and we need to test them to make sure that they are doing their job properly. But Dr Burt does fit the mould of legend. He is not just practicing medicine, he is writing a whole new chapter of his own. The work he is doing has the potential to help a lot of people in the future. However, doctors are people too and can have bad days and make mistakes. As a patient I believe that you have an obligation to make sure a doctor is giving you the best care available.
In Dr Burt's case I don't think there will be a problem. He seemed extremely knowledgeable and was very personable and engaging. Don't you just hate it when someone is that great in every way? He got the ball rolling by telling me about his trip down under and his little sojourn down the great ocean road. If you reading this Dr Burt, the Victorian Police department thanks you for your kind donation;)
What people said about him being fast was also true. Don't get me wrong he was thorough, but after Paula had taken my vitals (again) he came in and did his thing and left. I had questions to ask him, most of which we covered in the main part of the consultation but I only just got my last question in while he had one foot out the door. I feel quite comfortable being under his care.
Given the mix up of the first day, I have to say that the hospital has got an A+ for the last two days. Right now I have the joyful task of a 24hr urine test, which has rendered me pretty much hotel bound for the day. I have to keep the sample refrigerated too, so it is sitting on the second shelf of my fridge next to my water bottle. Man I hope I don't make a mistake:0
Until next time, stay well:)
Thursday, February 23, 2012
My daily stroll
I have been walking to the hospital every day so far and to tell the truth I am quite enjoying it, so I thought I would video it and share it with you all. According to google maps it is 0.4 miles and should take 8 minutes. It took me nearly double that. I hope you enjoy my ramblings. Stay well:)
Wednesday, February 22, 2012
A good day
Wow, I have so much to write about I really don't know where to start. I think I will save my more quirky observations for next time and just tell you about my day. And it was a good day relatively speaking. Read on, I will explain.
Actually, I should have titled it a really good day. I started off meeting Paula in the hospital lounge. It seemed a bit odd meeting in the lounge, but in hindsight I have to say it was great. It was really nice to talk about what is up coming in an informal environment. I had also psyched myself up to talk about the less than perfect day I had the day before, but it was unnecessary. Paula mentioned it first, and the elephant in the room had vanished. From there we we free to talk about everything and anything stem cell related.
My next appointment was with the blood centre for a vein check. In all honesty I have to say that it was probably unnecessary although appreciated. I thought that they would check my veins for access or something, but no. It was just a meet and greet and a quick tour of the facility but very welcome. In a previous post I said that it would be great if you could a tour of a facility pre surgery and this is exactly what this was. Next time I go back I will know exactly where I am going and what is happening. It was very well appreciated and will make my next trip there much, much easier.
My last appointment was why I had a good day relatively speaking. Please don't get me wrong, the staff were fantastic, everything was punctual and everything was done to make me feel as comfortable as possible. But nerve conduction studies suck. My fellow CIDP readers would understand. And this was the most thorough exam I had ever had. I was there for over an hour getting electrocuted but it was necessary and when that is the case you just have to put up with it.
However, the best part of the day was still to come but I am going to keep you in suspense and tell you about that next time because I'm tired and I want to go to bed. Until next time, stay well:)
Actually, I should have titled it a really good day. I started off meeting Paula in the hospital lounge. It seemed a bit odd meeting in the lounge, but in hindsight I have to say it was great. It was really nice to talk about what is up coming in an informal environment. I had also psyched myself up to talk about the less than perfect day I had the day before, but it was unnecessary. Paula mentioned it first, and the elephant in the room had vanished. From there we we free to talk about everything and anything stem cell related.
My next appointment was with the blood centre for a vein check. In all honesty I have to say that it was probably unnecessary although appreciated. I thought that they would check my veins for access or something, but no. It was just a meet and greet and a quick tour of the facility but very welcome. In a previous post I said that it would be great if you could a tour of a facility pre surgery and this is exactly what this was. Next time I go back I will know exactly where I am going and what is happening. It was very well appreciated and will make my next trip there much, much easier.
My last appointment was why I had a good day relatively speaking. Please don't get me wrong, the staff were fantastic, everything was punctual and everything was done to make me feel as comfortable as possible. But nerve conduction studies suck. My fellow CIDP readers would understand. And this was the most thorough exam I had ever had. I was there for over an hour getting electrocuted but it was necessary and when that is the case you just have to put up with it.
However, the best part of the day was still to come but I am going to keep you in suspense and tell you about that next time because I'm tired and I want to go to bed. Until next time, stay well:)
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