I haven't posted in well over a week. The reason being I've been just too fatigued to do almost anything.
Sarah and I picked up some sort of respiratory infection over a week ago and It's knocked me back to the point that I'm about as weak as I can get and still move around the house (all be it tethered to the oxygen tube). On top of that I've been battling with low blood counts and bleeding.
Today I'm starting to feel a little better but it's not a huge improvement.
My breathing has been so bad I can hardly sleep at night for the discomfort and I have to sleep sitting upright with three pillows. At the beginning it was so bad that when I breathed out the air would keep flowing for up a second or so after I'd stopped exhaling. It's a bit better now but I still make whistling and crackling noises when I breath and it gets worse if I try sleeping on my side.
After the drama of the thirty two hour nose bleed from a few weeks back things only got worse as far as uncontrolled bleeds were concerned. I developed an internal bleed into my stomach somewhere and that was really scary as there was no way of knowing how bad it was.
After thinking long and hard about my current transfusion situation and what my counts have been (1-2) I suggested to the doctor that I would need at least two units of platelets every time I came into the day ward in order to keep the count above 5 or so. I've never had any bleeding episodes previously. They didn't start until my counts got down around the 1-2 figure of recent weeks. The problem being that we weren't putting enough in to cover the distance until the next appointment which could be 3-4 days away. So I'd be fine for only about half the time and at risk the rest, it just didn't make any sense having only half the protection. It just made the window for uncontrolled bleeding a bit smaller. It didn't fix the problem.
So now I decide how many units I will need based on the FBC (full blood count) taken when I arrive in the morning and we plan from there. So far so good.
I had my second cycle of Gemcitabine yesterday, again so far so good. It's hard to say at this early stage in the course of things whether it's working or not. Dr D'Souza isn't expecting my bone marrow to rally until after this cycle finishes in twenty days or so. The crazy itch has completely gone so I'm grateful for that. Would be good if I could get these lungs to start working so I can exercise and get around without this oxygen tube trailing behind me. Guess that will come with time.
..Ron
Thursday, September 13, 2012
Tuesday, September 4, 2012
A new schedule for bloods
I had a fantastic weekend!
Saturday I had enough energy to do some clearing up in the workshop of my tools that were scattered over the work benches where they had sat since May when I went into hospital.
Then my friend John came over and together we finished the high performance exhaust system on my Evo 6.5. He hack-sawed the pipe, I welded it and then he bolted on the car. By the end of the day I was worn out but very happy that I'd done so much. It was certainly the best day I'd had in the last six months.
Sunday I felt a little worse for wear and by Monday a complete write-off.
Today when I went in for more blood the answer was obvious: My haemoglobin was down to 82, the lowest count I've ever had!
I spent all day getting the two units each of blood and platelets (they were down to a count of 1) and did some thinking. The Tuesday/Friday schedule just wasn't working. The platelets were probably only good for raising my counts for a day, the rest of the time I was flying without a parachute. Whats the point of having a transfusion that only gives me less than 50% protection?
Then there's the haemoglobin. I'd been trying to keep my minimum count at around 105 and then transfusing to always be above that. But I'd had a good count early last week and made the mistake of only asking for one unit of blood. This meant that by the time Friday came around my counts were in the low 90's and most of the two units I got went towards topping that up and not actually giving me the benefit of a reasonable blood count that afforded me some oxygen to my muscles. Hence fatigue set in after only a day and half.
I spoke with the duty doctor and suggested that somehow we needed to get three units of blood into me in one day and that we needed to change the frequency of the transfusions to three times a week.
Monday, Wednesday and Friday being the best option. She agreed as did the senior nurse who is responsible for the schedules. So that's now the new plan: Keep the bloods at a more consistent level and try to iron out the big dips that leave me open to bleeding and fatigue.
This new schedule starts next week. This Friday I will arrive super early and get three units of blood to bring my baseline haemoglobin back to something sensible (for me).
I had a heart scan this morning to see if there was any damage from the last infection. The technician couldn't really say anything but what she did say was that my heart muscle was in good shape considering it's "running flat out". I'm sure that if there was a problem with the heart valves I would have heard from one of the doctors during the long six hour wait while getting blood today. ;)
So far I've managed to avoid any infections (I guess had I not you wouldn't be reading this!) which pleases the docs no end. I think they have strong fears that I'll end up in ICU again. That's something I am absolutely determined not to have happen. I doubt, as they do, that I'd come out alive.
I love a challenge and I can't think of a better one than staying a live! :)
..Ron
Saturday I had enough energy to do some clearing up in the workshop of my tools that were scattered over the work benches where they had sat since May when I went into hospital.
Then my friend John came over and together we finished the high performance exhaust system on my Evo 6.5. He hack-sawed the pipe, I welded it and then he bolted on the car. By the end of the day I was worn out but very happy that I'd done so much. It was certainly the best day I'd had in the last six months.
Sunday I felt a little worse for wear and by Monday a complete write-off.
Today when I went in for more blood the answer was obvious: My haemoglobin was down to 82, the lowest count I've ever had!
I spent all day getting the two units each of blood and platelets (they were down to a count of 1) and did some thinking. The Tuesday/Friday schedule just wasn't working. The platelets were probably only good for raising my counts for a day, the rest of the time I was flying without a parachute. Whats the point of having a transfusion that only gives me less than 50% protection?
Then there's the haemoglobin. I'd been trying to keep my minimum count at around 105 and then transfusing to always be above that. But I'd had a good count early last week and made the mistake of only asking for one unit of blood. This meant that by the time Friday came around my counts were in the low 90's and most of the two units I got went towards topping that up and not actually giving me the benefit of a reasonable blood count that afforded me some oxygen to my muscles. Hence fatigue set in after only a day and half.
I spoke with the duty doctor and suggested that somehow we needed to get three units of blood into me in one day and that we needed to change the frequency of the transfusions to three times a week.
Monday, Wednesday and Friday being the best option. She agreed as did the senior nurse who is responsible for the schedules. So that's now the new plan: Keep the bloods at a more consistent level and try to iron out the big dips that leave me open to bleeding and fatigue.
This new schedule starts next week. This Friday I will arrive super early and get three units of blood to bring my baseline haemoglobin back to something sensible (for me).
I had a heart scan this morning to see if there was any damage from the last infection. The technician couldn't really say anything but what she did say was that my heart muscle was in good shape considering it's "running flat out". I'm sure that if there was a problem with the heart valves I would have heard from one of the doctors during the long six hour wait while getting blood today. ;)
So far I've managed to avoid any infections (I guess had I not you wouldn't be reading this!) which pleases the docs no end. I think they have strong fears that I'll end up in ICU again. That's something I am absolutely determined not to have happen. I doubt, as they do, that I'd come out alive.
I love a challenge and I can't think of a better one than staying a live! :)
..Ron
Saturday, September 1, 2012
24hrs later..
After bleeding all day Thursday I was very tempted by late afternoon to go to the emergency dept.
I decided I wouldn't. My logic was that I wasn't loosing enough blood to be of significance and that I was due in the hospital day ward the next day for blood anyway.
Sarah and I got up up early and got to the blood & cancer centre just after 9am. The nurses and doctors on the front desk could see by the tissue plugs in my nose that were dripping blood that things weren't quite right today.
I found a chair and within a short while two large bags of platelets had been administered via my PICC line. I continued to bleed profusely from my nose for several more hours.
Finally I took the gamble and removed the plug from my right nostril. A large gelatinous red/black mass of gunk followed it out. I continued to bleed for another couple of hours.
Then later in the day while getting two units of whole blood I was talking to the duty doctor and quite subconsciously gently "pulled" on some "mucus" at the back of my throat. That was not a good thing to have done! It just kept on coming until my entire mouth was full of this mass of congealed blood! I looked around for somewhere to spit it out before I choked as my nose was still blocked. Sarah must have realised what the problem was because she handed me a plastic bowl and I quickly emptied my mouth's contents into that.
Now that was gross!
It wasn't until about 5pm Friday that I stopped bleeding. A total of around thirty two hours.
Today I'm feeling great. I have plenty of energy from the new blood and I can cough now without blood coming from my mouth and nose. It's not a taste you get used to.
I woke this morning to a temperature of 38C. At 38C I'm supposed to go to the emergency dept.
We waited for another half hour or so and it slowly dropped. Phew!
Dr D'Souza spotted me yesterday while in the day ward and said "now you are going to get through this without any dramas aren't you!" I assured him I would. Not that I have any control over my bodies choice of infection. We all realise that I can't afford another major infection, it will almost certainly kill me.
All I can do is keep away from other people, wash lots, and keep taking the GCSF injections to stimulate my blood counts.
Today I have a friend coming over to work on my Evo's exhaust system. It seems so strange that here I am a person who has spent thirty years building high performance exhausts and now I have to sit in a chair and give instructions to someone else. Such is my poor level of fitness.
On that note I do feel a lot better these days, even just since last weekend. My cough is better and my feeling of well-being is vastly improved.
..Later
I decided I wouldn't. My logic was that I wasn't loosing enough blood to be of significance and that I was due in the hospital day ward the next day for blood anyway.
Sarah and I got up up early and got to the blood & cancer centre just after 9am. The nurses and doctors on the front desk could see by the tissue plugs in my nose that were dripping blood that things weren't quite right today.
I found a chair and within a short while two large bags of platelets had been administered via my PICC line. I continued to bleed profusely from my nose for several more hours.
Finally I took the gamble and removed the plug from my right nostril. A large gelatinous red/black mass of gunk followed it out. I continued to bleed for another couple of hours.
Then later in the day while getting two units of whole blood I was talking to the duty doctor and quite subconsciously gently "pulled" on some "mucus" at the back of my throat. That was not a good thing to have done! It just kept on coming until my entire mouth was full of this mass of congealed blood! I looked around for somewhere to spit it out before I choked as my nose was still blocked. Sarah must have realised what the problem was because she handed me a plastic bowl and I quickly emptied my mouth's contents into that.
Now that was gross!
It wasn't until about 5pm Friday that I stopped bleeding. A total of around thirty two hours.
Today I'm feeling great. I have plenty of energy from the new blood and I can cough now without blood coming from my mouth and nose. It's not a taste you get used to.
I woke this morning to a temperature of 38C. At 38C I'm supposed to go to the emergency dept.
We waited for another half hour or so and it slowly dropped. Phew!
Dr D'Souza spotted me yesterday while in the day ward and said "now you are going to get through this without any dramas aren't you!" I assured him I would. Not that I have any control over my bodies choice of infection. We all realise that I can't afford another major infection, it will almost certainly kill me.
All I can do is keep away from other people, wash lots, and keep taking the GCSF injections to stimulate my blood counts.
Today I have a friend coming over to work on my Evo's exhaust system. It seems so strange that here I am a person who has spent thirty years building high performance exhausts and now I have to sit in a chair and give instructions to someone else. Such is my poor level of fitness.
On that note I do feel a lot better these days, even just since last weekend. My cough is better and my feeling of well-being is vastly improved.
..Later
Thursday, August 30, 2012
Blood:
This probably isn't the nicest thing you'll read all day, But I feel like venting my frustrations and because this is my forum for such things, Vent I shall.
Seven years ago at the start of my treatment for Hodgkins Lymphoma I suffered a serious side effect from my chemotherapy, my bone marrow was depleted so badly from just one infusion of ABVD chemo that it failed to regenerate and I was left with what was considered at the time a seriously low platelet count. I remember the counts were around the mid twenties and the doctors were all quite concerned as the normal rnage is 150-400.
I personally believe that I was given an incorrect dose of one of the four chemo drugs involved in the ABVD regimen I was undergoing. Possibly by a factor of ten. Recently hospitals have implemented new procedures to avoid this quite common mistake when dispensing medication whereby the decimal place is incorrectly/mistakenly placed. I however was completely ignored when I suggested this might be the case. The doctors preferring to believe it was an idiosyncratic episode unique to me. Despite their being no other documented cases of such a response happening anywhere else in the world. The net result was that all treatment was stopped for fear of loosing what working marrow we had left.
It was suggested radiation treatment would to be my only option. I declined. For the next eighteen months while I battled for continuation of the ABVD convinced I had been overdosed, I was in complete remission with no discernible signs of lymphoma. Not bad from one sniff of a supposedly relatively mild chemotherapy applied at the correct dose! (heavy sarcasm)
Anyway time moves on and I've gotten used to having a low platelet count. Platelets are the glue that binds blood together and stops bleeding. Without them, like water, the bleeding (leaking) would never stop.
There are whole support networks on the internet for people that suffer from low platelet counts Idiopathic thrombocytopenic purpura (ITP). Typically these people have counts below the normal range of 150-400 (refers something like 10 to the power of 9 per litre).
I've seen posts by people with counts of around 100 genuinely concerned at their "very low" platelet count and they start facebook forums to discuss their plight.
I haven't had a count over 50 in seven years. Usually it's mid twenties and it has never stopped me from doing any activity. I used to regularly motor race on counts considered too low for surgery. I just drove a bit more carefully. hmmmm come to think of it no I didn't!.
Anyway here we are today, platelet count "1" (read zero!). I had been getting two units of platelets along with whole blood twice a week for the best part of this year. When ever I returned to hospital in the following days for a blood test, my counts would be right back where they started. It became obvious that the transfusions were probably only any good for the few hours, maybe a day even following the top-ups.
I'm also on a drug that helps clotting called tranexamic acid. We have decided that in light of the fact that I have had no major bleeding events we will treat the low platelet count less and reduce the transfusions.
Right now I have blood trickling out my nose. It won't stop, it's been going for the last six hours, it's bloody annoying but what can I do? Nothing.. just mop up the red stuff into numerous tissues as I type and accept it as part of my life. I tried putting a plug of tissue in my nose but when I removed it there was a huge gelatinous mass behind it and that was even more gross than just letting the fresh stuff trickle down my face.
I have to be ultra careful about scratching or just picking at some innocent "thing" that might attract my attention. I can't just squeeze what ever it is that's on the end of my nose because next time I look in the mirror there will be a large purple bruise. Same goes for scratching an itchy arm or leg. I'm covered with hundreds of little purple marks from even the most innocuous attention.
It gets worse. Going to the toilet almost always results in a fairly worrying amount of blood being left in the bowl. If I didn't know what was causing it I'd be calling an ambulance!.
The doctors know the situation but what can we do? We are hoping that after a few rounds of chemo my marrow will start producing again. It's happened before, so there is hope.
It all makes a mockery of the "you can't have more chemo, you can't make us kill you" attitude of one oncologist (now retired) all those years ago. I guess now it's because if the patient dies, no heads will roll. Desperate times, desperate measures...
When I was in Germany getting treatment in 2008 I made a bus trip into the nearby village of Bad Tolz. While on the bus I was phoned by the hospital and told I must get off and wait for someone to pick me up as I had a platelet count of just 20 and was at serious risk of uncontrolled bleeding if I bumped myself. I wonder what they would say now to a count of 1?
I had the second part of the Gem chemo on Tuesday. I feel tired, worn out and pretty low. I know it will pass. I just wish the train wreck of an alien body I'm inhabiting would work, would put on some weight, would stop itching, would have some energy, would stop leaking blood...
..Ron
Seven years ago at the start of my treatment for Hodgkins Lymphoma I suffered a serious side effect from my chemotherapy, my bone marrow was depleted so badly from just one infusion of ABVD chemo that it failed to regenerate and I was left with what was considered at the time a seriously low platelet count. I remember the counts were around the mid twenties and the doctors were all quite concerned as the normal rnage is 150-400.
I personally believe that I was given an incorrect dose of one of the four chemo drugs involved in the ABVD regimen I was undergoing. Possibly by a factor of ten. Recently hospitals have implemented new procedures to avoid this quite common mistake when dispensing medication whereby the decimal place is incorrectly/mistakenly placed. I however was completely ignored when I suggested this might be the case. The doctors preferring to believe it was an idiosyncratic episode unique to me. Despite their being no other documented cases of such a response happening anywhere else in the world. The net result was that all treatment was stopped for fear of loosing what working marrow we had left.
It was suggested radiation treatment would to be my only option. I declined. For the next eighteen months while I battled for continuation of the ABVD convinced I had been overdosed, I was in complete remission with no discernible signs of lymphoma. Not bad from one sniff of a supposedly relatively mild chemotherapy applied at the correct dose! (heavy sarcasm)
Anyway time moves on and I've gotten used to having a low platelet count. Platelets are the glue that binds blood together and stops bleeding. Without them, like water, the bleeding (leaking) would never stop.
There are whole support networks on the internet for people that suffer from low platelet counts Idiopathic thrombocytopenic purpura (ITP). Typically these people have counts below the normal range of 150-400 (refers something like 10 to the power of 9 per litre).
I've seen posts by people with counts of around 100 genuinely concerned at their "very low" platelet count and they start facebook forums to discuss their plight.
I haven't had a count over 50 in seven years. Usually it's mid twenties and it has never stopped me from doing any activity. I used to regularly motor race on counts considered too low for surgery. I just drove a bit more carefully. hmmmm come to think of it no I didn't!.
Anyway here we are today, platelet count "1" (read zero!). I had been getting two units of platelets along with whole blood twice a week for the best part of this year. When ever I returned to hospital in the following days for a blood test, my counts would be right back where they started. It became obvious that the transfusions were probably only any good for the few hours, maybe a day even following the top-ups.
I'm also on a drug that helps clotting called tranexamic acid. We have decided that in light of the fact that I have had no major bleeding events we will treat the low platelet count less and reduce the transfusions.
Right now I have blood trickling out my nose. It won't stop, it's been going for the last six hours, it's bloody annoying but what can I do? Nothing.. just mop up the red stuff into numerous tissues as I type and accept it as part of my life. I tried putting a plug of tissue in my nose but when I removed it there was a huge gelatinous mass behind it and that was even more gross than just letting the fresh stuff trickle down my face.
I have to be ultra careful about scratching or just picking at some innocent "thing" that might attract my attention. I can't just squeeze what ever it is that's on the end of my nose because next time I look in the mirror there will be a large purple bruise. Same goes for scratching an itchy arm or leg. I'm covered with hundreds of little purple marks from even the most innocuous attention.
It gets worse. Going to the toilet almost always results in a fairly worrying amount of blood being left in the bowl. If I didn't know what was causing it I'd be calling an ambulance!.
The doctors know the situation but what can we do? We are hoping that after a few rounds of chemo my marrow will start producing again. It's happened before, so there is hope.
It all makes a mockery of the "you can't have more chemo, you can't make us kill you" attitude of one oncologist (now retired) all those years ago. I guess now it's because if the patient dies, no heads will roll. Desperate times, desperate measures...
When I was in Germany getting treatment in 2008 I made a bus trip into the nearby village of Bad Tolz. While on the bus I was phoned by the hospital and told I must get off and wait for someone to pick me up as I had a platelet count of just 20 and was at serious risk of uncontrolled bleeding if I bumped myself. I wonder what they would say now to a count of 1?
I had the second part of the Gem chemo on Tuesday. I feel tired, worn out and pretty low. I know it will pass. I just wish the train wreck of an alien body I'm inhabiting would work, would put on some weight, would stop itching, would have some energy, would stop leaking blood...
..Ron
Monday, August 27, 2012
Up and down
It's been a hard couple of days, the high strength Dexamethasone steroid is now out of my system but it really makes you feel ill as you come down off it. Way worse than anything I've had with prednisone weening.
I had that really great day on Friday where all my vital signs were normal and I felt really well.
I haven't been so lucky since. Although my body temp has stabilised at a normal figure and my itch has almost completely gone, something I'm very pleased about.
I am however plagued by stomach aches and a feeling of being poisoned. All quite normal chemo side effects. Oh and the enlarged lymph nodes in my groin have reduced in size. Which is promising.
How much of all this to do with steroids and how much is chemo I can't say. Tomorrow is another chemo day but no steroid this time so I'll be able to get some idea of what's happening later in the week.
..Ron
I had that really great day on Friday where all my vital signs were normal and I felt really well.
I haven't been so lucky since. Although my body temp has stabilised at a normal figure and my itch has almost completely gone, something I'm very pleased about.
I am however plagued by stomach aches and a feeling of being poisoned. All quite normal chemo side effects. Oh and the enlarged lymph nodes in my groin have reduced in size. Which is promising.
How much of all this to do with steroids and how much is chemo I can't say. Tomorrow is another chemo day but no steroid this time so I'll be able to get some idea of what's happening later in the week.
..Ron
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