The Louise Church Memorial Fund

11/09/2007

My sister in law Louise Church was diagnosed with PH in 2004 at 37 years of age. She was married to my brother Tim and she lived with them near Ipswich and their two children Harriet now 7 years and William 10 years.

Unfortunately her PH was diagnosed late so her heart was already very damaged so she did not respond as well to her treatment. She was given a hickman line (a needle that sat in her stomach permanently to drip the medication in) and they tried a new drug on her Remoudulin unfortunately this gave her horrendous side effects – constantly vomiting and huge weight loss but with it she was able to function bit more of a normal life.

Unfortunately as PH is progressive the treatment only works for a limited time and before long she was wheel chair bound and needing constant extra oxygen. The only hospital able to help her with her condition was the Hammersmith Hospital in London and her visits there were becoming more and more frequent and each stay longer. Louise was then accepted as a recipient of a double lung and heart transplant at the Harefield Hospital, Middx. But chances of finding a perfect donor and match are very hard, however in December 2005 they found a donor and Louise was rushed there to take the final tests before the operation could go ahead and as time is limited to transfer the organs from one person to the next. To be then told by the surgeon the hospital had undergone some refurbishment and the operating theatre was not in a fit enough state to go ahead with the operation. This was absolutely devastating news to everybody and I noticed a huge decline in Louise as she thought this could have been her last chance.

However miraculously another donor came up again in December 2006 and the operation went ahead. We were all terrified as only 1 in 3 make it out of theatre and Louise was the only person in the UK in 2006 to receive this operation, the years then of anti rejection drugs etc . The operation was a success and they sent Louise home 10 days later as her biggest risk was to get an infection as she could not take antibiotics as they would counteract the anti rejection drugs. Sadly Louise did get a cold and pneumonia which resulted in her returning to the Harefield and never leaving. This was after countless operations and ending up on a ventilator until she gave up her fight 21st June 2006.

In the whole of that time Louise never once complained, moaned or seemed distressed about her condition, she remained so calm, so positive and cheerful and fought so so hard to live. The whole time there she planned all the things she would do with her family when she came home, the places she would go and visit and her main thing was ideas how to raise money for PH and make awareness for it . This is when I said I would run the London marathon for PH this year hence I kept my word to her and did. I had to apply through the ballot as PH had no charity places, I was heart broken when I didn’t get a place and wrote to the organisers explaining my situation and they gave me a place in what they call their golden ballot for special places. I started off with a goal of raising 10k and was absolutely delighted when in total I raised with tax nearly 30K. I trained from December until 22nd April and was horrified it was such a hot day but thrilled to complete it in 3.54mins and when I hit that wall, which for me seemed at 8 miles, what kept me going was thinking of all the suffering Louise went through and it was just nothing in comparison.wWe all miss her terribly and it was the anniversary of her 1st death in June and would have been her 40th on 2nd July but what keeps us going is raising money for PH which is what she wanted and if one day we help to find a cure against this terrible illness her death would not have been in vain.

NIKKI RHYS


Well done to Nikki Rhys and her families and friends for raising in excess of £33,000 to date.