Wednesday, 30 January 2013

Advice for potential living donors

They say there is no better teacher than experience. So through my own experience of being a living kidney donor, I'll share some important tips should you consider becoming a living donor too.

Most importantly: do your research and find out as much as possible about the benefits, process, procedure and risks as you can. There is a lot of information available on the internet, where I found most of mine. You can also speak to the Renal Co-ordinator at a hospital. Below are links to a few very useful sites:

http://www.organdonation.nhs.uk/how_to_become_a_donor/living_kidney_donation/

http://www.uhb.nhs.uk/living-kidney-donors.htm

http://www.giveakidney.org

What helped me in my decision to make the donation was reading all the success stories of other donors. There are more than a hundred personal stories to be found here:

http://www.livingdonorsonline.org/experiences/experiences.htm

Before hospitalisation:
  • Ensure that you are as healthy and fit as possible with a healthy diet and physical exercise. The better shape you are in before the operation, the faster your recovery time will be and the smaller the risk of complications.
  • Minimise your daily stress as best you can. Stress is bad for your body and state of mind. Being overloaded by work before I left on sick leave with the fear of a very large operation caused me two weeks of agonising tension headaches. Try to stop working a week before the operation if possible. It's also best not to think about the "what ifs" during this time, as it can also cause stress.
  • If you haven't already, update your will and ensure you have sufficient life insurance. It's not nice to think about, but there is a 1 in 3000 mortality rate for living donors. Telling your life insurance provider before the operation of your intention will ensure that you are covered during the operation, and for any event that may cause your death as a result of the donation.
  • Pack a trolley suitcase with comfortable clothes, underwear and toiletries. I took Crocs shoes to walk around with because they are comfortable to walk in on the cold hospital floors, and you can shower in them. The main cut which is about 12cm long is about 3cm below the belly button, which is right on the belt line for most trousers/skirts. Make sure you wear tracksuit trousers on the day of discharge as the cut will be very sensitive.
  • Take something with you to keep you occupied as you will be in bed for 3-6 days. Books, music and movies on a tablet or smartphone are a great way to pass time. 
  • Take earplugs and eye flaps to block light and noise. There is normally activity in and around the ward all throughout the night.
  • Have a very light meals the day before the operation, I can't stress this enough. The operation will cause your digestive system to go to sleep for a day or two, and any food left in there will remain in there until your first bowel movement. You don't want that to be a something spicy, trust me!

At the hospital:

  • Stay positive and focussed on what you are there to do. You will constantly be surrounded by sick people, loud machines and staff which can add to your stress levels.
  • Be insistent. There are only a few nurses and doctors attending to many patients, and you can easily be forgotten about. I waited from 3pm to 10pm the night before the operation for my chest x-ray before making a fuss, and had to go to the Emergency Room x-ray department as the local one was already unmanned, and only got to bed at around midnight.
  • Ask questions. Nurses and doctors may give you injections and medication without explaining what they are and their side effects. If you're not happy with it, ask for an alternative. I remember being given pain tablet that only days later I was told contributed to my nausea!
  • Go easy on the morphine if you haven't had it before. As I mentioned previously, I had a bad reaction to it and the anaesthesia, causing severe nausea, shivers and sweats. Only use it when you start feeling discomfort.
  • Since childhood my mom has always given me Ginger Ale to drink for nausea. Peppermint is also very good. Take some peppermint lozenges with and keep them in your bedside drawer. They are also very handy for the days when you don't get up to brush your teeth.
  • As uncomfortable as it is, try to get out of bed and walking the day after the operation. This will wake up your digestive system. The sooner you can pass urine, the sooner you will have the catheter removed. You will not be discharged before you have a bowel movement! Because I couldn't eat or drink for two days due to the nausea, I had to stay in hospital for an extra two days.
  • Try not to lie in one position for too long. Being in bed for about 20 hours a day takes its toll on the back and muscles, and you can easily develop bed sores. Even if you can't stand upright, try to sit upright in the bedside chair.
  • Put your hand on your cut and apply light pressure before coughing and sneezing. The will minimise the pain.
  • Drink plenty of water to ensure you are passing enough urine - this is vital to monitor the function of your bladder and remaining kidney. Otherwise you will be connected to a drip to keep you hydrated.
At home:
  • Get as much rest as you can during the first few weeks after the operation. Your body will be working hard at healing the cuts and adjusting to the single kidney, using up all your energy. 
  • You may not feel like it, but try to eat healthy, high-energy foods to give your body the energy it needs.
  • Drink plenty of fluids, preferably water, and no caffeine or artificial sweeteners.
  • Bend with your knees, not your back when bending over. Avoid any strain on those scars.
  • Take showers, not baths until the scars are closed and healed. Cover them with waterproof plasters to keep the water from softening the skin which may cause tears.
  • Don't strain yourself by lifting heavy items or doing too much exercise. Those orders were given by the doctor for a good reason. Take it slow and be patient. It takes time for the body to heal and adjust.
  • Keep hourly track of what you eat, drink and the medication you take. This will help you keep an eye on your fluid intake, and help it figure out what medication gives you any side effects.
If after reading all this and you're still motivated to go through with it, I'm very proud of you. It's tough, both physically and mentally, but only for a short time. After a few months you will be back to your old health and radiate with pride and love for what you've just done. Someone at work told me last week that I look different, that it looks like there is a halo around my head. I do feel different. I feel like I have finally done something really amazing with my life, made a difference, on a human scale. It makes the strive for success and the gaining of wealth feel almost feeble. As a society we are brainwashed to join the rat race and climb the corporate ladder at any cost, and we become blind to the needy, the poor, and the sick among us.

Keep focussed on the life you are saving, there is no greater motivator. Your altruism will echo through all eternity.







Does this surprise you?

The NHS in England spent an estimated £1.45 billion on chronic kidney disease in 2009–10. This is equivalent to £1 in every £77 of NHS expenditure and more than the annual cost of breast, lung, colon and skin cancer combined. Please support Organ Donation and Kidney Research UK.



Progress at home

Since my last update - What a wonderful feeling to be back home being able to rest and recover from surgery. For the first three days I could barely sit still from all the excitement and new found energy but soon realised that I had to take my recovery a day at a time, especially after all of the pain medication had worn off as some days could still be a bit uncomfortable.

Furthermore I also attend clinic three times a week where my results are very closely monitored through blood and urine samples which enabled the doctors to make adjustments to my medication to ensure optimal functioning of the new kidney. I'm very grateful that Lizelle could be my side during this first month of recovery as she was always happy to drive us to the hospital which sometimes could be a bit daunting. After every visit I always look forward to update John on the successive progress of my results. Lizelle and I have such a wonderful appreciation for this new life which is so dear to us being able to spend more time with each other & friends and getting up each morning thanking God to have given us another day.

We also enjoyed a very special Christmas together with John, Natasja and Anton as always eating too much and enjoying the holiday season. What an amazing end to 2012 and so much new adventures to look forward to in 2013 and beyond.


Thank you to all our family and friends, for celebrating our joy, supporting us and sharing our happiness. We sincerely thank John & Natasja for this generous gift of life and new hope.
With all our love, we thank you!

Pieter & Lizelle

Saturday, 26 January 2013

Medal of Honour

I was pleasantly surprised when I received an envelope from NHS Blood and Transplant in the post this morning. Inside was a beautiful letter of thanks for my kidney donation by Chief Executive Lynda Hamlyn, and a blue box containing a silver pendant.




Thank you NHS for the kind gesture, I'll wear my medal of honour with pride.



Tuesday, 8 January 2013

My 6-weeks check-up

My 6-week post-operation check-up was due today. However on Wednesday 02 January I bent over slightly and felt a sharp pain in my large scar in my stomach. I looked down and saw that it had opened up in the corner by about 1cm. The next morning after a shower I noticed some redness and yellow fluid in the opening. I didn't want to take any chances at this early stage so I went to the hospital to have it looked at.

I was seen by Ray Trevit, who told me it didn't look too serious and it could be that an internal stitch may have pierced the scar and caused the inflammation and tear. Just to be on the safe side Ray took a swap of the fluid for testing for an infection. Whilst I was there Ray also took my blood pressure, urine sample and some blood, which was going to be done today. I was told to keep the scar clean and keep Ray updated.

The following morning after a shower I noticed the tear looked slightly purple! I gave it a bit of a squeeze (as you do!) and something purple came to the surface! I grabbed a tweezer and pulled on it, and out came a large piece of undissolved stitch! A few weeks ago one of the keyhole scars wouldn't heal, every morning I noticed that it had opened up again. One morning I saw a tiny piece of stitching stick out, and pulled out a similar undissolved stitch, only this one was clear, so I was relieved because I knew that was what caused the tear in the large scar. Over the next few days it closed up again.


I received my test results today. Ray was very happy with the results and so was I. Every test came back normal, my kidney function is good at 62% (It was 82% before the operation with 2 kidneys), creatinine level is 117 which is normal for my size, age and single kidney, blood pressure is normal, and the swap for the infection came back negative. We discussed my health and recovery and I mentioned that I felt fine and almost as good as before the operation. I only have some discomfort from the internal stitches that still have to dissolve fully and the tissue to mend and the swelling to dissipate, and my energy levels are still a bit low. So I was told to rest for a few more days and only return to work on Monday 14 January 2013. I now only need to return for a check-up once every year.



With the worst now behind me and my recovery almost complete, it feels great knowing what I did for Pieter and seeing him also recovering so well. I won't lie to you, it was a tough few weeks both physically and mentally. But it's only for a few weeks, soon it will all be a distant memory. But for Pieter it means a normal, healthy life.


Tuesday, 1 January 2013

Happy New Year!!

As amazing as 2012 was for Pieter and I, 2013 will be the one to keep a close eye on this blog!

Follow Pieter's progress as he gets healthier and stronger. I can't wait to see what he gets up to this year will all his new energy, health, time and determination!

Here's to wishing you all a happy, healthy and prosperous year! Thank you all for following our blog and your support.