Sean’s Story

I want to tell you what it was like to become a Living Donor for my sister Eileen. I was 5 years old when Eileen was born and I remember as a child she spent quite a lot of time in and out of hospital. She had kidney problems from birth.

I presumed all was well as we grew up, moved away and settled down until my other sister Hilary rang me in September 2009 to say Eileen was in renal failure and would require a kidney/ dialysis in her future. She asked me what blood type I was and if I would consider being a living Donor for Eileen. I knew very little about the living donor programme at that time.

This was a big shock to me and initially my reaction was to say no. I met with Eileen some time after and told her I wasn’t ready to be a donor at that time. I guess my ignorance of the whole Living Donor programme helped lead to this difficult conversation.

Some time after this my brother-in-law John fell ill and we then discovered this was due to  acute kidney failure and required medication & dialysis 3 times a week. I was aware of dialysis as I have worked nearly 23 Years in the ambulance service. During that time I took many patients to and from the Dialysis Units throughout Northern Ireland. However what I learned more from my brother-in-law John was how dialysis affects/restricts the life of the patient and their family. It is a life limiting but a necessary process while waiting for a kidney donation. I knew that a kidney would change John’s quality of life so much. My thoughts turned to my sister and her impending wait for dialysis or a kidney?

In January 2013 our family had gathered together  4 weeks after my mum passed away. I noted that Eileen didn’t look well and she confirmed to me that her kidney function had deteriorated further again since we last met.

I decided there and then i would contact the Living Donor transplant co-ordinator Pauline to test to see if I indeed could be considered as a living Donor and what that would entail should I meet the criteria.

This phone call was the start of a wonderful journey. Pauline explained what was involved and gave me leaflets and information all about the living Donor programme.
We arranged for an extensive ‘work up’ to be done to check my suitability and then met Dr Aislin Courtney. She said that I was indeed a suitable donor for Eileen and that If I donated my kidney to Eileen my remaining kidney would serve me well for another 30/35 years. I could continue to live life as before without any restrictions. Brilliant exactly what we wanted to hear and know.

Never at any time did I feel any pressure to make this decision. I was over the moon that not only was I in better shape than I thought at 48 years of age but was able to go through this process without detriment to my quality of life.

I discussed this with my wife Collette and my four children and I made my mind up there and then ‘this was meant to happen’. I knew there was always options at any stage to withdraw from this process but the confidence, reassurance and professionalism left us in no doubt that donating a kidney to Eileen would prevent her from going on to dialysis and improve her quality of life. All the signs were pointing to a very positive outcome. I became very focused on proceeding with this operation and never had a doubt from the initial decision made.

Part of the process requires I inform any life assurance companies of operation to ensure cover wasn’t compromised. I telephoned my good friend Aidan ( i’d secured my life insurance through him) to check details with him and discovered that he too was going through the same ‘work up’ to be a living donor for his Uncle John ( my brother- in- law that was on waiting list too) . I couldn’t believe it and joked with Aidan that we could have ended up Bed buddies.

I was glad to hear that John was going to get a kidney from Aidan.

There was a little frustration on my behalf waiting for a date as we had to wait until the optimum time for Eileen to gave her maximum longevity from the donated kidney. This I understood and wanted for Eileen.

Murphy’s law usually isn’t too far away and when the first date was offered in June 2014. i couldn’t take it as i was taking my son Rory to All Ireland Special Olympics in Limerick.The next date arranged was the 30th June 2014. After we returned from Limerick my wife had bumped into Carmel, an old friend that we haven’t seen for a while. In catching up with life between the 2 families Collette discovered that Chris ( Carmel’s husband) was due to go to Belfast City Hospital the week before I was due to be a living donor for his sister too!

This was uncanny. I had not known many people who were living donors and here was 3 operations planned within a 3 week period involving family and friends I knew. I was able to follow Chris’s progress through his operation and recovery. Both Chris and Carmel were able to provide great wee tips in how to deal with recovery ( e.g. Eat light on day before or Pillows for below seatbelt on homeward journey). It was great to hear that Chris and his sister were recovering so well after the donation. It was then my turn and as we checked in to wards in hospital the operation was cancelled last minute. I wasn’t too anxious about this cancellation but was sort of glad it was cancelled as my sister appeared very anxious indeed. We eventually agreed a new date for 16th July 2014.

In the meantime my brother-in-law John received a kidney from his nephew Aidan. Again both operations went exactly as described by transplant team. Witnessing family and friends go through the same operation as Eileen and I were about to do, gave us a degree of insight to this operation that not everyone going through this could experience. Chris and Aidan feedback was invaluable. When the 16th arrived both Eileen and I were well settled and right up for it.

On the day Eileen & I arrived to ward, my brother-in-law John was being discharged from the ward. His bed became Eileen’s bed.

My experience in the ward was very attentive. It was nice to be just down the corridor from Eileen. When my turn came,  I went down to theatre with Elaine the living donor co-ordinator and everyone was kept informed about both my progress and again Eileen’s when she went to theatre too. When I returned from theatre i felt no pain. I had a local anaesthetic drip inserted around my wound site (this was a new procedure and worked very well indeed)  and as a result did not require any morphine during my stay. It was uncanny, major surgery and pain was managed by paracetamol. The surgical team came in to check on me and informed me I had given Eileen a ‘whopper’ of a kidney. I panicked slightly, thinking they’d taken the wrong kidney? I quickly checked my scars and was able to go back to sleep knowing they took the right one.

Everything that was told to me that i would experience, I experienced. Day after surgery was uncomfortable due to the gas in the shoulder, that I was expecting. I was able to walk it off or take peppermint tea. and it was gone by following morning.

Oh my god what a feeling to wake up and know that I have helped my sister and that within 48 hours her kidney function was normal! Very surreal and mind blowing feeling.

I have worked in the health Service for nearly 23 years and I can safely say that I have a new level of pride for the NHS after my experience in 11 South.

I do see and hear advertisements for people to join the organ donor register which is very good. I know that it is a difficult decision for families to make about deceased organ donation. However, I truly feel that we are generous but cautious population and if we realise the true potential of being a Living Donor to the people we know and love the demand for deceased donations would be eased.
When i joined the ambulance service I didn’t know if would be for me or not. I said at the time if I could make a difference to at least one person it would be worth it all. I know I have made a difference to a lot of people over the years thank God. There is nothing like the feeling of knowing I have given Eileen the best possible opportunity through being a living donor. I feel there are a lot of people out there that could be living donors just like Chris, Aidan & I.

I hope this story can encourage others to step forward to be considered as a Living Donor.

Can I thank everyone for their help, support and dedication to the living donor programme.

Sean Mullan