Back from Plasma - feel ok today imagine that I will feel tired later and need a sleep. I actually enjoyed plasma today - it is quite boring sitting at home alone and not being able to go out because of quarantine. The staff at the blood service are happy people who can take a joke and joke back. They are also very caring. It is slightly different to dialysis in the fact that plasma is one on one nursing whilst dialysis is not. This means that you talk and get to know the plasma nurses better and they have a better idea of how you are feeling.
I had iron for the first time in a month last night- there had been some confusion and it had been missed for a while. My iron had dropped to a low level. Iron is important as it helps hb carry oxygen around the body. I actually feel a lot better today with a bit more energy and think this may be down to iron. It could also be all in the mind.
I have not heard anything about the cross match tests from monday- so I presume treatment carries on as is.
I am feeling ok both physically and mentally which is good, the donations are brilliant and it gives me something to do.
Showing posts with label plasmaphersis. Show all posts
Showing posts with label plasmaphersis. Show all posts
Wednesday, 3 October 2007
Wednesday, 19 September 2007
Tired
I am feeling tired at the moment. I put it down to a number of things. First the treatment is increasingly severe on the body. It seems to take longer each time to feel normal after plasma. Secondly my hb has dropped significantly over the past 17 days from 14.5 to 9.9 although it was slightly up today at 10.5. This basically means that I have about 2/3rds of the oxygen carrying cells in my body - this basically makes it harder to do things and recover from procedures. The level I am at the moment is not that low but I think the rapid decrease has made it feel worse.
I hope that the hb downward trend has stopped.
I am also feeling less hungry by the day, no idea the exact reason for this. Probably due to a combination of things. It is a sort of chemical sickness feeling that takes away the feeling of hunger.
I also often feel slightly fluie in the evenings.
Apart from all the above,which I think are all expected side effects I am fine.
I note that my potassium was 6.1 the other day. This is the most it has been since being on dialysis. No idea why it was at that level - perhaps lab error or perhaps plasma puts it up? A high potassium level is not good - it can cause a heartattack.
I hope that the hb downward trend has stopped.
I am also feeling less hungry by the day, no idea the exact reason for this. Probably due to a combination of things. It is a sort of chemical sickness feeling that takes away the feeling of hunger.
I also often feel slightly fluie in the evenings.
Apart from all the above,which I think are all expected side effects I am fine.
I note that my potassium was 6.1 the other day. This is the most it has been since being on dialysis. No idea why it was at that level - perhaps lab error or perhaps plasma puts it up? A high potassium level is not good - it can cause a heartattack.
Monday, 17 September 2007
Long day - lots happening
Today has been hectic and I am pretty tired.
First update as I have not done a proper update since last wednesday. Things are mostly fine with plasma and dialysis. In Friday one of the nurses accidentally managed to prick herself when taking one of the needles out, this caused a bit of confusion as what the protocol is. It turns out that we both have to have our bloods checked for viruses. I am pretty confident that I am fine as I am screened regularly, they did a viral screen on Saturday and again today. These things happen...
Friday eve and Sat morning was suffering from a bad stomach. This is not like the normal stomach pains - it is hugely chemical drugs based and unpleasant. It seems to go as quick as it comes though
My dialysis session on Sunday was changed to Saturday twighlight as the sunday staff wanted to go to a leaving party. This was fine although it did mean we had to run plasm a little slower today as I have more creatinine in mm blood.
Otherwise the end of week and weekend has been fine. I went orienteering on Saturday - basically 1 hour of running around trying to find hidden points using a map and compass. I could not manage to run the whole thing - but had fine and got some fresh air.
Today
Plasma was fine - ran slower due to dialysis on sat and not sunday. HB dropped again to 10.3. Spoke to doctor later in the day and he agreed to increase eypo to 60 from 20. This will take a while to work.
Met with the surgical team as well. They impressed me, one of the top uk surgeon is doing my transplant which is great. Due to the treatment the date of the transplant could be 28th of this month but it could also be after that. The surgeon said they may even have to come in on a saturday. I responded that means I have also put off what I am doing and come in on a saturday "that caused much laughter"
He asked me questions and considered my past history. He shook his head a bit and decided that I needed a full scan of my arteries and veins around my stomach and legs to decided which is the best place for the kidney. He thinks he will take out the current kidney that failed and replace with the new one.
He also said as I have basically not passed urine for 18 months my bladder would have shrunk. I have to go and my bladder stretched before the operation. This makes my eyes water thinking about it, basically a tube up the private part into the bladder. Water then pushed in and drained out. This will cause it to stretch and hopefully be better for the surgery and the kidney afterwards. Will reduce the build up of pressure.
I then had to go to see a ethics person with my family to prove we were related etc. All pretty simple stuff. A bit more paperwork...
They managed to fast track the renal scan, so had this done in the afternoon. Took about 30 mins, the guy was very informative. I hate echos and that whooshing sound. Anyway from what he said it seems that I have very good arteries and veins. Like a normal person. That is good. Did you know the more movement you do the better it is for you veins and arteries.
They review todays cross matching on Wednesday. This will probably give us a good idea about the potential of the transplant happening next Friday.
First update as I have not done a proper update since last wednesday. Things are mostly fine with plasma and dialysis. In Friday one of the nurses accidentally managed to prick herself when taking one of the needles out, this caused a bit of confusion as what the protocol is. It turns out that we both have to have our bloods checked for viruses. I am pretty confident that I am fine as I am screened regularly, they did a viral screen on Saturday and again today. These things happen...
Friday eve and Sat morning was suffering from a bad stomach. This is not like the normal stomach pains - it is hugely chemical drugs based and unpleasant. It seems to go as quick as it comes though
My dialysis session on Sunday was changed to Saturday twighlight as the sunday staff wanted to go to a leaving party. This was fine although it did mean we had to run plasm a little slower today as I have more creatinine in mm blood.
Otherwise the end of week and weekend has been fine. I went orienteering on Saturday - basically 1 hour of running around trying to find hidden points using a map and compass. I could not manage to run the whole thing - but had fine and got some fresh air.
Today
Plasma was fine - ran slower due to dialysis on sat and not sunday. HB dropped again to 10.3. Spoke to doctor later in the day and he agreed to increase eypo to 60 from 20. This will take a while to work.
Met with the surgical team as well. They impressed me, one of the top uk surgeon is doing my transplant which is great. Due to the treatment the date of the transplant could be 28th of this month but it could also be after that. The surgeon said they may even have to come in on a saturday. I responded that means I have also put off what I am doing and come in on a saturday "that caused much laughter"
He asked me questions and considered my past history. He shook his head a bit and decided that I needed a full scan of my arteries and veins around my stomach and legs to decided which is the best place for the kidney. He thinks he will take out the current kidney that failed and replace with the new one.
He also said as I have basically not passed urine for 18 months my bladder would have shrunk. I have to go and my bladder stretched before the operation. This makes my eyes water thinking about it, basically a tube up the private part into the bladder. Water then pushed in and drained out. This will cause it to stretch and hopefully be better for the surgery and the kidney afterwards. Will reduce the build up of pressure.
I then had to go to see a ethics person with my family to prove we were related etc. All pretty simple stuff. A bit more paperwork...
They managed to fast track the renal scan, so had this done in the afternoon. Took about 30 mins, the guy was very informative. I hate echos and that whooshing sound. Anyway from what he said it seems that I have very good arteries and veins. Like a normal person. That is good. Did you know the more movement you do the better it is for you veins and arteries.
They review todays cross matching on Wednesday. This will probably give us a good idea about the potential of the transplant happening next Friday.
Wednesday, 12 September 2007
Smiling
I am happy tonight as I have just seen England beat Russia at football on the tv. It is good to see a English team that actually looks like a team and not a bunch of overpayed , ego inflated individuals. I hope the manager does not bottle it and keeps the same team for the next match.
On the health front things are ok, had a bit of stomach ache which is not good. Similar to what I go previously from mmf. Not sure how to get rid of it? Hopefully the lower dose may help.
Plasma was fine today, they ran it at the fastest they have so far. They seem surprised by the tolerance of my body. When I had finished plamsa I went to visit a friend on the ward who is in being treated after his 4th transplant. Whilst I was talking to him I noticed that my arm was getting warm - I had started bleeding again. So I grabbed some paper towel and walked down to RDU to get one of the nurses to patch me up. It was quite red and messy.
I spoke to the transplant coordinator today - just a catch up really. She has organised a number of things for next Monday including seeing the surgeon and getting the ethics side of the transplant donation done. It will be good to get all that out the way.
No other news.
On the health front things are ok, had a bit of stomach ache which is not good. Similar to what I go previously from mmf. Not sure how to get rid of it? Hopefully the lower dose may help.
Plasma was fine today, they ran it at the fastest they have so far. They seem surprised by the tolerance of my body. When I had finished plamsa I went to visit a friend on the ward who is in being treated after his 4th transplant. Whilst I was talking to him I noticed that my arm was getting warm - I had started bleeding again. So I grabbed some paper towel and walked down to RDU to get one of the nurses to patch me up. It was quite red and messy.
I spoke to the transplant coordinator today - just a catch up really. She has organised a number of things for next Monday including seeing the surgeon and getting the ethics side of the transplant donation done. It will be good to get all that out the way.
No other news.
Friday, 7 September 2007
Sunshine and the weekend
I have finished my plasma session. They managed to run it even faster today thus took less than 2 hours. I have had no reactions so far to the treatment and the citrate. I think my body is pretty accepting and strong.
The doctor in charged said she had not met anyone who was so laid back during treatment, I took that as a compliment. The thing is I actually feel very laid back and not that worried about it. I suppose I have accepted what will be will be and that the more relaxed I can be the better for my body, my brain and the people around me.
I think often when you are ill, a lot of the stress you build up is related around worrying about the effect you are having your loved ones. You don't want them to worry but it is difficult as this is a natural reaction. It can be a difficult situation.
I now have a break and don't need to go back for anything until Sunday afternoon. That means I have got a complete day off tomorrow which I am looking forward to as is my arm. And it is sunny I think I might go for a run/walk later to get some sun and fresh air.
My lymphocytes are now 1.2 from 1.6 which I think is good.
hb 13 (this week it has ranged from (13 - 14.7) that is a big range.
I am trying to chase one of the doctors to organise blood taking for monday - to all be done at the blood unit. This would simplfy things but I need to get hold of him to tell him that the plasma unit have agreed. I have left a message.
This week I have been on machines for about 30 hours. That is 30 hours of my blood being pumped around and around. I still find this weird - it is just amazing that the body can deal with it.
What post the pictures soon..
The doctor in charged said she had not met anyone who was so laid back during treatment, I took that as a compliment. The thing is I actually feel very laid back and not that worried about it. I suppose I have accepted what will be will be and that the more relaxed I can be the better for my body, my brain and the people around me.
I think often when you are ill, a lot of the stress you build up is related around worrying about the effect you are having your loved ones. You don't want them to worry but it is difficult as this is a natural reaction. It can be a difficult situation.
I now have a break and don't need to go back for anything until Sunday afternoon. That means I have got a complete day off tomorrow which I am looking forward to as is my arm. And it is sunny I think I might go for a run/walk later to get some sun and fresh air.
My lymphocytes are now 1.2 from 1.6 which I think is good.
hb 13 (this week it has ranged from (13 - 14.7) that is a big range.
I am trying to chase one of the doctors to organise blood taking for monday - to all be done at the blood unit. This would simplfy things but I need to get hold of him to tell him that the plasma unit have agreed. I have left a message.
This week I have been on machines for about 30 hours. That is 30 hours of my blood being pumped around and around. I still find this weird - it is just amazing that the body can deal with it.
What post the pictures soon..
Monday, 3 September 2007
7 Hours later
I am tired but ok. Underwent my first plasmaphersis session followed bu the infusion of Rituximab.
The plamsapherisis took about 3 hours. It was painless and pretty simple. I did not appear to have any side effects - except for a the end when I had a tiny bit of tingling in my mouth and a strange test this is from the citrate (anticoagulant)
I basically had 60% of my blood plasma removed and replaced with other plasma. In total about 2.5 litres. It is weird to see your blood plasma collecting in a bag above your head and thinking other peoples is replacing yours.
The nurses and staff seem to be excellent. I had loads of blood taken about 15 bottles full.
Following Plasma I went up to the renal unit for the infusion. I landed waiting around for ages. Inventually I was given a bed. The nurse tried to get a needle in my hand (my veins are crap like most renal patients) she missed. But the doctor who was looking after me hit it. Well done to him.
I was then started on the infusion at a rate of 16 ml an hour. That is pretty slow - but this is to ensure that any reaction that occurs is limited. They then sped the process up and after 4 hours it was finished.
During the process I did feel a bit fluie and a tiny bit short of breath but not enough to mention to the medical staff- it would have just worried them and caused a fuss.
I will write more later
The plamsapherisis took about 3 hours. It was painless and pretty simple. I did not appear to have any side effects - except for a the end when I had a tiny bit of tingling in my mouth and a strange test this is from the citrate (anticoagulant)
I basically had 60% of my blood plasma removed and replaced with other plasma. In total about 2.5 litres. It is weird to see your blood plasma collecting in a bag above your head and thinking other peoples is replacing yours.
The nurses and staff seem to be excellent. I had loads of blood taken about 15 bottles full.
Following Plasma I went up to the renal unit for the infusion. I landed waiting around for ages. Inventually I was given a bed. The nurse tried to get a needle in my hand (my veins are crap like most renal patients) she missed. But the doctor who was looking after me hit it. Well done to him.
I was then started on the infusion at a rate of 16 ml an hour. That is pretty slow - but this is to ensure that any reaction that occurs is limited. They then sped the process up and after 4 hours it was finished.
During the process I did feel a bit fluie and a tiny bit short of breath but not enough to mention to the medical staff- it would have just worried them and caused a fuss.
I will write more later
Sunday, 2 September 2007
Dialysis
Dialysis went ok today. Arrived at 1 and set the machine up. Got on at 1.30 and away by 6 pm. Sundays are good - no waiting around. Normal wait time is between 1 to 2 hours. That can be a real drag.
Going to try and get a fairly early night tonight - after match of the day. Have followed the doctors orders to eat calcium to stop me becoming hypocalciumic during plasmapheresis. Basically been eating cheese and drinking milk..
Not much else to say. Emotionally feel pretty stable and have not got butterflies yet. I am not looking for to having all the drugs put into me - basically in one day I will go from having a pretty normal immune system to basically nothing. But it is best not to think of that. I am given anti viral drugs and antibiotics to to and offer some protection.
It makes me think when people complain about having to take antibiotics - come and join my world tomorrow, that would stop the complaining.
Going to try and get a fairly early night tonight - after match of the day. Have followed the doctors orders to eat calcium to stop me becoming hypocalciumic during plasmapheresis. Basically been eating cheese and drinking milk..
Not much else to say. Emotionally feel pretty stable and have not got butterflies yet. I am not looking for to having all the drugs put into me - basically in one day I will go from having a pretty normal immune system to basically nothing. But it is best not to think of that. I am given anti viral drugs and antibiotics to to and offer some protection.
It makes me think when people complain about having to take antibiotics - come and join my world tomorrow, that would stop the complaining.
Saturday, 1 September 2007
Desensitisation Protocol
What is it all about?
Having already had 2 kidney transplants that have had varied life spans my body has been exposed and thus sensitised to a number of antibodies. The kidney they want to use for the next transplant (a fmaily member) has one of these antibodies and thus my body would attack the organ if it was transplanted without precautionary treatment.
This treatment is called desensitisation, it has not been carried out at my unit yet but has been succesful in the states and London.
The basic idea behind the programme is to remove that antibody and prevent it from growing back and attacking the kidney.
The treatment includes plasmaphersis and the use of Rituximab an antibody killer. This is carried out until the antibodies reach the correct level and the transplant is carried out. I am not going into any more detail here, I will do it as I blog the progress.
Having already had 2 kidney transplants that have had varied life spans my body has been exposed and thus sensitised to a number of antibodies. The kidney they want to use for the next transplant (a fmaily member) has one of these antibodies and thus my body would attack the organ if it was transplanted without precautionary treatment.
This treatment is called desensitisation, it has not been carried out at my unit yet but has been succesful in the states and London.
The basic idea behind the programme is to remove that antibody and prevent it from growing back and attacking the kidney.
The treatment includes plasmaphersis and the use of Rituximab an antibody killer. This is carried out until the antibodies reach the correct level and the transplant is carried out. I am not going into any more detail here, I will do it as I blog the progress.
Subscribe to:
Posts (Atom)