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Thread: Transplant

  1. #121
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    Default Re: Transplant

    I was discharged last night and finally got to sleep in a bed that wasn't hot and sticky.
    Well, I say sleep, but between midnight and 7am I had to go pee 5 times (passed 3lts/over 100 fluid ounce). Then it was straight back to hospital for my first post - transplant appointment (I now go 3 times/week). Even with little sleep and recovring from surgery , I still feel more "awake" than after a full night's sleep pre - transplant!
    With this new lease of life, I decided to walk from the carpark to the hospital and back. 3 days ago I still needed the nurses to help me from my bed to the toilet. But I must have pushed too hard. Once I got back to the car I was exhausted and weak and 5 hours later I'm still worn out.

    I look forward to the kidney settling down as I have to drink 500ml/17fl.oz more than what I peed the previous day. So I'm having to get through 6000ml/200+fl.oz of drinks/day.

    Thank you all for your messages whilst I was in hospital.
    Diagnosed April 1995

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  3. #122
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    Default Re: Transplant

    Forgot to let you all know how my dad is getting on.
    He caught the bus to town with my mum. They had lunch and my dad stayed behind, reading a newspaper, while my mum did a few jobs. They then met back up and caught bus home. He said it was tiring but he managed fine and said next time he'll accompany my mum around town.

    At my appointment, it was the surgeon that had operated on my dad that held my appointment.
    Diagnosed April 1995

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  5. #123
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    Default Re: Transplant

    Wow, how thrilling that you're back home, except for appointments, and that everything is going according to plan. Also that your dad is doing well and getting around and about. Before you know it, things will be completely back to normal, before your kidney issues. Congratulations on making it through this after all the delays and anxiety! I look forward to hearing more about progress being made.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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  7. #124
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    Default Re: Transplant

    Oh my, I will never take pee'ing for granted again.

    I'm so glad that you are home and that both you and your dad are recovering well.

    The difference in posts is absolutely amazing.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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  9. #125
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    Default Re: Transplant

    I wrote the following on a kidney forum and thought I'd share here. It's quite long and some of the information will be things I've already posted on this forum, so hopefully not too boring -

    This is my transplant story from the day before surgery until 11 days after surgery. It's quite long, hopefully not too boring.


    I was due to be admitted into hospital the night before surgery, but due to my bleeding risks, I was admitted at lunchtime so that coagulation tests could be done. I was admitted to the renal ward and due to lack of beds, my dad (the donor) was admitted to a general surgery ward.
    I didn't sleep well, but think this was more due to the waterproof mattress and pillows and high room temperature, rather than nerves (not that I wasn't nervous).
    Awoke early to have a shower (with the surgical scrub I'd been using for the last 5 days) and to have my first of many cannulas. I then received some platelets, due to my bleeding issues.
    I was then, surprisingly, asked if I would prefer an epidural and stay awake during the procedure. I politely declined that offer!
    My dad and I, had been told that we would be walking to theatre on the day together, but on the day, I was wheeled on a bed to theatre. I was put in an holding area and a few minutes later my dad was also wheeled in. I was pleased to be able to see and speak to my dad before surgery.


    Whereas usually the donor's kidney is removed first and then the recipient is "opened up", the plan for us was different. I was due to be worked on first and if I didn't begin to bleed too bad, they would then operate on my dad.
    The surgery went as follows -
    I was anaesthetised and worked on until the very final stage before the new kidney was connected. This is when things didn't go to plan. My dad's surgical team began to operate on him and whereas everyone was aware of my bleeding issues and precautions had been taken, no one knew that my dad would begin to bleed bad. It took my dad's team around 6 hours to remove his kidney safely, while my surgeon just had to stand around waiting for it. I was finally sewn up 9 hours after being anaesthetised.


    My dad was taken back to general surgery ward and I was taken to High Dependency. My dad had been given the option of a catheter and he chose not to have one, but he awoke with one in. I presume this was because surgery was such a long time his bladder would need emptying (which you can't do when asleep). My dad was due be discharged the following day, but they ended up keeping him in an extra day. I was due to return to renal ward the day after, but I picked up an awful infection and was kept on HD until almost midnight on the 2nd or 3rd day after surgery (I really wasn't well so can't remember which day).


    My kidney began working immediately and at a crazy rate. It is beginning to settle a little now, but it still produces up to 8500ml and on average 6000ml. I have been needing to match these figures with the amount of fluid I drink. From yesterday, I've been told to drink 5000ml, hoping to persuade the kidney to slow down a little. If my kidney continues to produce 6000 - 8500ml then I'll have to increase my fluid intake again.


    My first bowel movement was on the evening I was transferred back to renal ward. It was very painful. Many patients don't empty their bowels for a good few longer than I did. Since that first bowel movement I've had diarrhoea. The nurses think it could be due to mycophenolate and have now split my dose 3 times a day and make sure I take it with food.


    I was due to be discharged on the 5th day after surgery. But as I was still needing IV antibiotics 3 tiime/day, I was kept in for a further 2 days.
    I had 8 cannulas whilst an inpatient. My veins have always struggled with cannulas and this inpatient stay was no different.
    On the 5th day after surgery my catheter was removed. It had caused a cut/tear inside my penis 2 days after surgery. This meant removing it was very painful and the next few times I emptied my bladder it stung real bad. But it was from this point where I made massive progress until I was discharged 2 days later.


    Since returning home I feel my progress is slowing down since those last 3 days in hospital. The post transplant nurses think I'm being harsh on myself. They've said that I probably don't realise how little you do in hospital and how much extra you do at home (walking up and stairs, not having nurses doing most things for you, etc).
    The pain in the location of surgery has begun to increase. The post transplant nurses told be that after the initial pain from surgery, the pain gets a little less each day. Then becomes a point where your nerves begin to reconnect and this can be very painful (this is the stage I'm at, 11 days after surgery)


    I'm struggling to sleep mainly due to my frequent toilet visits and pain at surgery site. It is much harder to get out of my own bed without pain. In hospital I would leave one set of bed rails up so that I could grab it and pull myself up.


    For anyone worrying about transplant, I wouldn't worry too much. My 2 main issues were the infection and back pain (I have a bad back and never usually sleep on my back which I had to do after surgery). These 2 things are problems that won't exist for most people.


    If anyone has any questions please don't hesitate to ask.
    Diagnosed April 1995

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  11. #126
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    Default Re: Transplant

    Thank you for sharing your experience, this will be beneficial to others. It sounds like you and your Dad, had a lot on you and made it on thru to the rest and healing process. Please take good care of yourself and your new Kidney. Sending prayers for you healing!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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  13. #127
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    Default Re: Transplant

    That is amazing Pete, thanks for sharing your results here.

    They seriously asked you if you want to be awake

    I hope your pain is getting less each day, and I hope you dad is feeling okay

    Take it as easy as possible, and remember, you are allowed to ask for help, I'm sure your family wont mind.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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  15. #128
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    Default Re: Transplant

    Wow, totally amazing and fascinating Thank you for sharing, Pete. You are a great fighter. It was a tough journey but you have made it

    Do you still have diarrhea from the cellcept or was it the result of the antibiotics ? Are you still on antibiotics ? Do you take pain meds ? Can you feel that you have a new kidney, and if you do - in what way can you feel it ?

    Sending more prayers to you and to your wonderful father, God bless you.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  17. #129
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    Default Re: Transplant

    Hi Alysia,

    I'll answer your questions.

    Cellcept seems to be the main cause of my diarrhea. Splitting the dose in to 3 times/day and taking with food hasn't seemed to make much difference yet.
    I finished the day IV course of antibiotics on the last day in hospital. I still take co-trimoxazole once/day and will do for 6months post transplant.
    As for pain killers, I'm only taking paracetamol which doesn't really help. I stopped codeine because I constantly need to increase the dose to keep it's effectiveness, plus it gives my chronic headaches once the initial pain numbing wears off.
    It's definitely too tender at the moment to actually feel that there is a new kidney there.

    I'm sure that in the coming weeks I'll feel a massive benefit. But this recovery period is a bit worse than I was expecting. My dad is doing well and gets a little better everyday. Whereas I seem to be making progress then getting worse. I guess the biggest difference between me and my dad is all the drugs I'm on and the multitude of other illnesses and conditions I have.
    Diagnosed April 1995

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  19. #130
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    Default Re: Transplant

    How are you doing so far, @gilders ? Keeping you in my thoughts & prayers ❤
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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