BABY STEPS - ONE STEP FORWARD
Sunday, February 20, 2011
They were "baby steps" indeed very slow and very uncomfortable.
That first shower as promised by Cassie was quite a feat - there was quite some skill required to get me to the bathroom along with all my drains and tubes - even getting me out of bed was rather like unraveling a ball of string - questions such as which side of the bed and can you stand? That was a joke - could I stand - I had no idea - I was having enough trouble sitting up.
With much laughter and encouragement Cassie and another nurse got me to the shower on a wheeled shower chair - then came the joy of plastic wrapping me so the dressings wouldn't get wet. But it was all worth while - the sheer bliss of the warm running water over my sore body and the pleasure of clean hair again.
It was a shower I will never forget - and there were to be many of them.
The pure joy of being dried and having a clean gown and getting back into a beautiful clean bed will stay with me always. Then to have dressings changed and drains checked and then the pleasure of drifting off to sleep again, only to be woken by the Physiotherapist (or should I really call them what I felt they were at the time - "Physio Terrorists"
They were kind and had my best interests at heart - but even a slight small cough caused nasty sharp pains. I understood full well the reasons for their care and concern. They gave me a pillow for my tummy and also a breathing type apparatus which when I used encouraged and helped me to breathe deeply.
Life went on in a blur of similar days - blood tests early (06.00) then medication and then breakfast, then shower, visit by Doctor and team, a visit from the Transplant Coordinator, Physio then a nap before lunch .
Each time I felt as though I had run a marathon - and John put it into perspective for me when he said that after all that I had been through it was like a marathon for my body.
I came to dread the visits from the Doctor - often telling me that my bloods were not looking good and they wanted to give me transfusions of whole blood and other blood products - another line and another contraption to carry around and learn to sleep with.
Albumin is something I was transfused with many times.
http://www.transfusion.com.au/blood_products/fractionated_plasma/albumin
I received several measures of "Fresh Frozen Plasma" which seemed like an oxymoron to me.
http://www.transfusion.com.au/blood_products/components/plasma
Another blood product I received was Prothrombin
http://www.righthealth.com/topic/prothrombin_complex_concentrate
All of this and vitamin K too - both in transfusion and tablet form as well as whole blood.
The days were moving on and for me are quite a blur - lots of things happened and I am not quite sure in what order they happened.
It was necessary for me to have a "picc" line inserted for bloods etc. This was a real blessing as the poor Blood Nurses had trouble getting blood from my veins. This meant I had regular visits from a nurse who specialized in these. Another visitor - this time a lovely Irish nurse who had very gentle hands and a very cheery smile and manner. This was done in the Endoscopy Suite I think.
http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter
Ultra sounds of the liver were done and one day I had to go for a liver biopsy and this was done with a local anaesthetic which meant I had to joy of watching the procedure on a screen and viewing the piece they had taken for testing. The staff were lovely and apart from discomfort as opposed to pain - all went well and they were happy for me to be awake for the procedure.
All of this and there didn't seem to be any significant improvement so a decision was taken during those early weeks to insert a "biliary stent"
http://www.surgeryencyclopedia.com/A-Ce/Biliary-Stenting.html
This was done to allow the bile to flow and the hope was for better results.
This was inserted during a procedure called an E.R.C.P.
"Endoscopic retrograde cholangiopancreatography"
http://www.gesa.org.au/leaflets/ercp.cfm
This is a procedure I have come to understand quite well due to the frequency of having to have them. Most of mine have been plastic stents
Biliary stent
to me it looks rather like a reinforced garden hose.
Biliary Stent
These are part of my life and my condition now.
These first few weeks post transplant were busy ones and there is lots more to come - "watch this space" it seems I write this better at night but now I am off to bed to try to catch at least a few hours sleep.,
Thank you for visiting and sharing the journey with me - if you are on a list waiting for transplant - I hope it helps you and gives you an idea of how things can go - it is different for everyone and this is my story.
If you are a transplant recipient then lots of these things will be familiar to you - some will have had a more difficult road and for others a smoother path - again this is my story about what happened to me.,
Love and hugs,
That first shower as promised by Cassie was quite a feat - there was quite some skill required to get me to the bathroom along with all my drains and tubes - even getting me out of bed was rather like unraveling a ball of string - questions such as which side of the bed and can you stand? That was a joke - could I stand - I had no idea - I was having enough trouble sitting up.
With much laughter and encouragement Cassie and another nurse got me to the shower on a wheeled shower chair - then came the joy of plastic wrapping me so the dressings wouldn't get wet. But it was all worth while - the sheer bliss of the warm running water over my sore body and the pleasure of clean hair again.
It was a shower I will never forget - and there were to be many of them.
The pure joy of being dried and having a clean gown and getting back into a beautiful clean bed will stay with me always. Then to have dressings changed and drains checked and then the pleasure of drifting off to sleep again, only to be woken by the Physiotherapist (or should I really call them what I felt they were at the time - "Physio Terrorists"
They were kind and had my best interests at heart - but even a slight small cough caused nasty sharp pains. I understood full well the reasons for their care and concern. They gave me a pillow for my tummy and also a breathing type apparatus which when I used encouraged and helped me to breathe deeply.
Life went on in a blur of similar days - blood tests early (06.00) then medication and then breakfast, then shower, visit by Doctor and team, a visit from the Transplant Coordinator, Physio then a nap before lunch .
Each time I felt as though I had run a marathon - and John put it into perspective for me when he said that after all that I had been through it was like a marathon for my body.
I came to dread the visits from the Doctor - often telling me that my bloods were not looking good and they wanted to give me transfusions of whole blood and other blood products - another line and another contraption to carry around and learn to sleep with.
Albumin is something I was transfused with many times.
http://www.transfusion.com.au/blood_products/fractionated_plasma/albumin
I received several measures of "Fresh Frozen Plasma" which seemed like an oxymoron to me.
http://www.transfusion.com.au/blood_products/components/plasma
Another blood product I received was Prothrombin
http://www.righthealth.com/topic/prothrombin_complex_concentrate
All of this and vitamin K too - both in transfusion and tablet form as well as whole blood.
The days were moving on and for me are quite a blur - lots of things happened and I am not quite sure in what order they happened.
It was necessary for me to have a "picc" line inserted for bloods etc. This was a real blessing as the poor Blood Nurses had trouble getting blood from my veins. This meant I had regular visits from a nurse who specialized in these. Another visitor - this time a lovely Irish nurse who had very gentle hands and a very cheery smile and manner. This was done in the Endoscopy Suite I think.
http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter
Ultra sounds of the liver were done and one day I had to go for a liver biopsy and this was done with a local anaesthetic which meant I had to joy of watching the procedure on a screen and viewing the piece they had taken for testing. The staff were lovely and apart from discomfort as opposed to pain - all went well and they were happy for me to be awake for the procedure.
All of this and there didn't seem to be any significant improvement so a decision was taken during those early weeks to insert a "biliary stent"
http://www.surgeryencyclopedia.com/A-Ce/Biliary-Stenting.html
This was done to allow the bile to flow and the hope was for better results.
This was inserted during a procedure called an E.R.C.P.
"Endoscopic retrograde cholangiopancreatography"
http://www.gesa.org.au/leaflets/ercp.cfm
This is a procedure I have come to understand quite well due to the frequency of having to have them. Most of mine have been plastic stents
to me it looks rather like a reinforced garden hose.
These are part of my life and my condition now.
These first few weeks post transplant were busy ones and there is lots more to come - "watch this space" it seems I write this better at night but now I am off to bed to try to catch at least a few hours sleep.,
Thank you for visiting and sharing the journey with me - if you are on a list waiting for transplant - I hope it helps you and gives you an idea of how things can go - it is different for everyone and this is my story.
If you are a transplant recipient then lots of these things will be familiar to you - some will have had a more difficult road and for others a smoother path - again this is my story about what happened to me.,
Love and hugs,
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