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Dawn Pearce donated to her brother. This is her story.

Monday

As I live 1½ hours way from the hospital they arranged for me to stay the night before surgery in a lodge run by hospital volunteers. 

I had my main meal at 6pm then had a couple of biscuits at 8pm.

Tuesday

Before Surgery:
I got up at 5.30am and had a shower as advised I also had a sip of water at 5.45am.

Arrived at the hospital (Derriford Hospital, Plymouth) at 6.50am and went to the ward. I sat in the waiting area for 5 minutes then was called to start completing paperwork. 

I saw the assistant surgeon who went through the procedure. I then answered some questions with a nurse.  Another doctor went through the risks and marked in pen an ‘x’ on the side the kidney was being removed.

The Living Donor Co-ordinator, Sarah, was waiting for me with my gown to change into.  She wished me luck and said the anaesthetist would come and collect me shortly. Before I had finished changing I could hear Sarah talking to the anaesthetist so off we went.

In the anaesthetist room I remember lying on the couch whilst they struggled to put the cannula in my hand.  The last time I remember is 8.25am.

After Surgery:
I don’t remember the recovery room at all.  When I came round it was about 10pm.  I recall them showing me the button to release the morphine.  I remember waking up during the night and feeling slight pain, then pressing the magic button. I was very itchy and couldn’t stop itching all over. 

Wednesday

When the nurses came in, I couldn’t see them.  Everything was white and felt as if it was rolling.  The surgeon explained that the itchy and sight loss was a reaction to the morphine and the only way to fully restore my sight was to stop the morphine.  I felt that my sight was more important so they stopped the morphine and my sight started to return and the itching got better. From then on I was only on paracetamol.

Sitting up in the bed was really painful (especially without morphine); I had to keep calling the nurse to help sit me up.  In the afternoon I was helped out of bed and into a chair.  My family came to visit me in the afternoon. I asked them to ask the nurse for some anti-sickness tablets as I was feeling quite sick.

It was discussed about taking my catheter out that afternoon but I said I did not want it out as I felt that I needed more time before having to get out of bed and walk to the toilet.  We agreed to take it out on the Thursday morning.

Sarah (LDC) came to visit me which was nice; she said she would take me to see my brother on the Thursday morning.

Thursday

When I woke up in the morning I found it a bit difficult to breathe. When the surgeon visited I mentioned this to him and he said I probably had some fluid on my lungs so to sit in the chair all day and use oxygen.

The catheter was removed.  I was sad to see this go as I quite liked it and the thought of having to sit myself up and stagger to the toilet wasn’t a pleasant one.  I was then helped to walk to the toilet; my legs were like jelly. This was the only supervised walking I had.

Sarah took me to see my brother which was amazing.  He was sat up in bed, was very chatty and was glowing.  His colour had changed completely; I was used to see him looking grey. After an hour I was taken back to my ward to rest.

Some friends visited me in the afternoon which was nice.  I had a bit of dinner, I didn’t feel hungry but thought I should eat something (this was the first time I’d eaten since the Monday evening). 

Friday

I had no real sensation of wanting to go to the toilet.  At 3.30am I called the nurse to help get me out of bed and my breathing was difficult again.  When I got up at 6.00am I was gasping for breath and was quite panicky.  When the surgeon came round I mentioned it and another doctor said not to take any changes as it could be a blood clot forming on my lung.  I was taken down for a chest xray mid-morning.  The nurse said that I needed a CT scan. I was concerned as I was due to go home that day and my lift was planning to collect me at approx. 6pm. 

Mid-afternoon I was taken down for the CT scan.  After waiting ages I asked the nurse what was happening as my lift was in the building (visiting my brother).  One of the doctors came to see me and said that I had a build-up of fluid on my lungs and it was up to me if I went home or stayed another night.  I decided to go home; I was told to sit up as much as possible, take deep breaths and keep moving. 

The journey home wasn’t too bad (I live 1½ hours away from the hospital).  I definitely needed to pillow to put over my stomach to protect it.  After a stop at KFC for some ‘real food’ I arrived home.

 Saturday

It was much better sleeping in my own bed as I found it easier to roll-out.  I still wasn’t able to get much sleep as I can’t sleep on my back and there was no way I could roll on my side or front.

Tuesday

I went to the local community hospital so they could change my dressings.  I had 2 keyhole wounds and a 5” wound above my belly button.  I had internal dissolvable stiches and glue.  The wounds were dressed with a clear dressing.  The nurse thought the dressings should have been changed sooner.  It was quite painful having the dressing removed.  The nurse said the wounds were very neat.

Still feeling good I managed the trip to see my brother as he was still in hospital.  It was good to see him and his progress.

A week later

I had been having really bad back ache to the point that I didn’t know what to do with myself.  I also kept having waves of feeling really hot and having excruciating pain in my stomach that lasted approx. 5 seconds but felt like an eternity.   

After a few days of this I was sick and started to get breathless again and didn’t feel well.  I rang the hospital to see if this was normal and they said to see my doctor as it sounded like an infection.

I saw my doctor who referred me to hospital straight away as it sounded like a blood clot.  After various blood tests I was then given a chest x-ray.  They said they wanted me to have more tests the following day and said that I could either stay in or go home but return first thing the next morning; I opted to go home.  I was given an injection in my stomach in case there was a clot.

The next morning I returned to hospital.  They said they wanted to do a CT scan but weren’t sure as my body had gone through quite a bit of radiation in the past few weeks.  They decided to do the scan. I have had several scans before whilst undergoing compatibility tests but this time it was not a pleasant experience.  When the injected the dye it was very painful and I screamed out.  Inside the machine I felt very sick.  When I walked back to the waiting room I was very sick (which hurts immensely!).

Tests showed that I had pneumonia and pleurisy.  I was given strong antibiotics and pain killers for 10 days.  These seemed to do the trick.

After the medication I started to feel a lot better and slowly started to return to my normal self.

3 months on and I feel quite good.  I started back at work 5 weeks after the op (only a few hours here and there) and started driving after 4 weeks.  I have had the occasional pain in my right side and have been told it’s because I’m doing too much too soon.  Trouble is when you feel ok you push yourself with carrying/lifting etc then realise you shouldn’t have done it.

For people considering a nephrectomy I would urge them to ask the nurse for a laxative, it was nearly 10 days before I went and that was the worst of the pain.  Also consider what clothing you are going to wear after, as my main wound was just above my belly button that is where all trousers/skirts have the waist band, this is really painful. Indoors I lived in my PJs, when I ventured out I would have to wear tracksuit bottoms and push them down; I found the clothing situation a nightmare for quite a while.

My brother was in hospital for 10 days after the operation as the new kidney went into overdrive and produced 13 litres of urine the next day (it also produced urine during the operation!).  As the kidney was dehydrating him they had to monitor his levels closely. 

He had to attend clinic at the hospital twice a week for 2½ months, he then was moved to his local hospital where he has to attend once a week.  At the appointments they discuss his health, weight him and take blood.  Twice he has been called back into hospital as his creatinine and potassium levels fluctuate quite a bit.  He has much more energy now and is getting back to a ‘normal life’ without dialysis.

All in all, I feel that the operation went well and just by looking at my brother, if I could, I would do it all over again.

 

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4 Responses to “Dawn Pearce”

  • Rebecca Farwell:

    Dawn, thank you for sharing your story and giving such an accurate (if painful) picture of the donation process, particularly for those of us who can’t tolerate morphine (also a problem for me although it manifested itself differently).
    I hope that you are both doing well now.

  • karen:

    Thanks for sharing a very frank description of your experience. I have been waiting 6yrs to give my brother a kidney and it now looks like it’s really going to happen. Your account is helpful as I want to understand the bad as well as the good. I hope both you and your brother are now fully recovered.

  • Tracey:

    Thank you Your story was what I needed to read , I’m going to donate to my husband it’s going to be same hospital ,so it’s really good to hear about staff I know there .I cannot wait to donate but very scared about the pain when it’s over ! All the best to you and your brother

  • Diane:

    Hi Tracey,
    How wonderful you are a match for your husband and will be donating. What a beautiful Gift of Life and Love .

    Please try not to think too much about the pain. It really really does vary person to person. I had some pain and most of the time did not take pain relief mainly because I wanted to be reminded I had had an operation and not to over do things. Only if I went for a walk or just before bed (the effort of getting into bed was a tad painful) then I would take some. But for me it was never that bad. The worst being the day I got out of bed in the hospital. Laying still in bed no pain at all, so I needed to have some to enable me to get out of bed. The only way I can describe th pain is it was rather like a muscle that you have very much over used, but one in your tummy. It was certainly less than childbirth pain, lol 🙂 🙂

    All I can say is keep fit … as that does help. Rest often afterwards and don’t go rushing to do things just because you dont feel ill. Cos you are not ill 🙂 … but you will have had a major operation. Just make sure you listen to your body. For your body to heal, it has to have energy. If you do too much when at home, even going for a walk, then your energy will be going into what you are doing, and not into healing ….. so you will get tired very quickly …. if you do, you must rest up. 🙂 🙂

    All the very best to both you and your husband. Please let us know how you both are afterwards.

    Any pre op questions or any concerns after and want to chat to someone who has been through it .. please just post back here or you can contact me direct using the Contact link top of the page.

    All the best to both of you

    Di
    xx

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