Living With Kidney Disease - Member Showcase

This is a very stirring story of an incredibly tough time in your life. We thank you for sharing your story with the GrownUps Community, and we are so proud of the strength and support you showed during this trying time. We hope this story helps give support to other members of the community facing similar problems. It can help so much knowing that others have gone through what you are going through and have come out the other side!

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Dear GrownUps Readers

My story is about living with kidney disease and I am telling this in the hope that this might allay any fears one might have of becoming a donor.

My physically fit, sport mad, builder husband suddenly became ill with what everybody thought was a virus of some sort.  After 3 weeks of not being able to keep food down and after losing 2 stone in weight he was finally sent for a scan which showed up a huge mass in his stomach.  Naturally we thought "Cancer"  but no, they told us Polycystic Kidney Disease (PKD) - something we had never even heard of.  A trip straight to the library to do some research (we didn't have internet in those days) and what we discovered was quite horrifying. Cysts were growing all over his kidneys and since there was no cure this would  mean renal failure in the end and a life of Dialysis.  Amazing we thought that this could happen so quickly to someone so fit and otherwise healthy but after more research and talks with the Doctors we discovered this was something he had been living with for probably 30 odd years and hadn't known about.  (After further research we discovered his PKD was probably genetically inherited from his mother's father.)  The only sign had been his high blood pressure.  At the time high blood pressure was in the family on his father's side and we used to wonder why my husband had it  when he was so physically fit (he ran marathons), a non smoker and a very moderate drinker.   We assumed it was a heredity thing.  The reason he was suddenly so sick was that one of the cysts had grown so large it was blocking his intestines so an emergency bypass surgery was advised.  Amazingly with only days to go the blockage unblocked - cysts apparently grow and burst sporadically and this is what must have happened in this case.  Thankfully surgery wasn't needed.

The following 10 years he was monitored by the hospital and his Doctors.

It would be a gradual decline to Dialysis -  ten years of living with a cloud over our heads. At times months would go by with hardly any noticiable changes to our lives at all.  Never-the-less things were happening in his physical health although he tried desperately to keep up with his exercise and the appearance of normalcy.  It was frustrating that the powers that be couldn't add him to the transplant list until he was actually so sick that he would be on Dialysis.  Further down the track however, the hospital decided that because he was such a fighter and refused to give up the struggle to be healthy, he would be an excellent candidate for transplant surgery and agreed to add him to the transplant list a bit earlier.  Once on the list we were told it could happen tomorrow or 4 years down the track -  it all depended on the next best match.

So began the wait.  My husband was telling me that if a donor didn't come along in time there was no way he would go on dialysis, due I imagine to his fear of needles.  Meanwhile he struggled to carry on day to day but determinedly went off to work every day, building.  His health had deteriorated so much by this stage that the hospital had him on self administered steroid injections.  It was amazing to see this man who was so frightened of needles that he always suffered the pain in the dentist's chair in preference to having a painless injection actually having to inject straight into his stomach. He became covered in bruises as he grew so thin it was difficult to find any fat on his stomach to inject into.

Three months on and the middle of winter we decided to chance a little trip to Oz.  By now he was feeling the cold dreadfully so a warmer climate would be a good break for him. But this turned out to be the worst decision we ever made as amazingly while we were away a donor became available.

Unfortunately we didn't get the message until we arrived back.  We were devastated!  What awful luck. How could this be happening to us?  A couple of weeks later, we picked ourselves up and tried to carry on.  But it was hard to cope with the depression and the anxiety.  I decided I needed to do something more proactive so without telling my husband I made an appointment with the transplant co-ordinator.  I wanted to talk about becoming his donor so had a long list of questions.  At the end of two hours talking I had made my decision. The one fact that really clinched it was that live donors are so much more successful than dead ones.  I came home and gave him the news that night.  Of course he didn't want me to do it but I had nine months to talk him around as it would take that long for me to have all the necessary tests.  First though was the blood test to see if I was the same blood group - I was. We were elated.  Then came a thorough physical from top to bottom.  Heart, lung, kidneys, everything was tested, scanned and xrayed.  Miraculously I looked to be a perfect match so the surgery was booked for May 4th 2006.  I had heard that the operation is often harder on the donor than the recipient but there was a possibility they could do it laparoscopically.  However they wouldn't know for certain until they were actually operating.

On February 25th of that year I celebrated my 55th birthday so we had a big party celebrating that and the upcoming transplant.  In April we went to Queenstown for a week to rest before the operation.  I thought I was going to lose him during that week.  He was extremely weak and breathless.  He could barely walk out to a restaurant and had to keep stopping for rests.

Also he couldn't sleep due to all over itchy skin caused by the toxins in his system. I felt like my heart was in my mouth the whole time.  I would go out for long walks by myself and wonder what I would find when I came back.  It was all very frightening.  Thankfully he made it and on May 3rd we found ourselves admitted to the hospital ready for our operations the following day.

Just as a light hearted aside, things kept happening that made me think I was doing the right thing.  We had friends who were quite religious and used to live in America.  She sent emails out to all her friends and they had whole congregations praying for us.  The same thing happened in Singapore, Germany and the UK.  Even though we werent religious we felt terribly comforted by it. Then on the night before the operation we were allowed to venture into town for a nice dinner together.  Music was playing - modern music - then out of the blue an old Dean Martin song came on which used to be one of my father's favourite.  I got very weepy and felt as though he was also watching over me.

At 8.30am on Monday 4th May  I was taken down to the operating theatre.

The operation would take about 4 hours and they would have my husband ready as soon as they had the kidney out.  All went well and I was relieved to discover they had managed the Laparoscopic surgery.   I had 4 tiny 5cm incisions along my left side and a larger 10cm incision above the groin where they manouvered the kidney out.  I was back in the ward by 2pm in a drug induced euphoria and nervously waiting to know what was happening with my husband.    Where I had been rather blase about everything up to now this was by far the worst. My daughers waited anxiously with me.  Then we got word that everything had gone well, the kidney responded as soon as it was connected which is the best news we could expect to hear.  Soon he was brought up to his special sterile room next to mine and I could hear the nurses administering to him.  I could also hear his voice talking and talking and talking.  In fact he talked all night long.  He was feeling so well and was so elated to be feeling well that no one could stop him talking.  This went on for two days before sleep finally found him and he crashed for two days, but not before we were all satisfied the operation had been a huge success and continues to this day to be a huge success.  We were warned that over the next few weeks and months there may be various problems of one sort or another but nothing eventuated.  He was truly lucky and made me realise how much this was just meant to be. Was this the reason he had missed out on the earlier donor kidney?   His drugs, blood and urine were monitored every week for quite a few months and he religiously kept his appointments because he was all the time so excited to be well.  His gratitude to me was unending and it was wonderful to see him return to his original good health.  Initially he had to build his strength back up as his muscle mass had virtually disappeared.  He joined the gym and started walking. Soon he was back at work and his energy was soon usurping mine.

Five years on and he is running again and is thinking about running a half marathon - even at 63 years old.

As for myself, I was feeling so well after my part of the operation I was told I could go home on the Wednesday afternoon (only two days after the op) and sleep in my own bed that night.  I never had to have any further pain management after the first day and as it was easier to stand than sit I walked every day.  Being a donor for my husband in no way felt like a sacrifice of any sort.  The rewards were huge and almost selfish on my part in that I had a well, happy, fit husband back again.  I would do it again in an instant and hope that this might encourage anyone else that has this decision to face.

Kind Regards,
Lorraine
 

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