Living With Cystic Fibrosis - The Heidi Dowden Story

Heidi (Centre) with Gary and Kirsty

I first met Heidi Wheeler as she was, in January 1989. In fact, I'd seen her before Christmas when she was in the same video shop as me where her mum used to work and it was her mum who set us up on a blind date early in the new year which in itself was delayed for two days when my car broke down when I initially drove out to her little village to meet her. I am certain that none of us would have predicted what the next two decades had in store.

Ultimately Heidi was quiet and a bit shy, only really opening out when she felt comfortable in my company. On my part, I felt at ease with her despite being a similar quiet and shy type so it's amazing that we hit it off at all really but we did and so much so that within two weeks, she felt comfortable enough to drop the bombshell that she suffered from Cystic Fibrosis (CF). In those days when the Internet was a figment of a few techies imaginations, I did manage to get an idea of what CF was via the library and via what Heidi explained to me but what I didn't realise at the time, and only really figured out some years later, is what an amazingly brave and courageous move it was to tell me of her illness so early in our relationship. I did tell her this later in our time together but she hated being called brave ironically enough.

Now, I won't go inside the details of what CF is and how it affects the sufferers but in short, a build up on mucus in the lungs adversely affects breathing and leaves sufferers open to chest infections. There is obviously more to it than that but that's the general gist.

It didn't put me off her. She was the type that enticed you into her world because she was so likeable. With her `girl next door` looks and wonderful sense of humour, I knew back then how lucky I was to call Heidi my girlfriend and within ten months of meeting, she had moved in with me and we became engaged. Too quick? Actually no, history proved that we made the right decision even though I had just turned 22 and Heidi was 19 shortly before.

At the time, Heidi's illness was being managed by a regime of medication ranging from vitamins to anti-biotics via inhalers and a daily dose of physio, either through breathing exercises or `percussion` which involved someone (almost always me) patting her chest rhythmically for anything up to half an hour to free up any stuck mucus in the lungs and she was reasonably fit with walking distances not a major problem for her.

Time moved on and she got herself a part time job in the newsagent where I worked and in October 1992 we got married in one of the proudest two days in my life as she became Heidi Dowden. A lovely honeymoon in Blackpool followed as the daily fix of medication and physio became a fixed routine for us both and in the summer of 1993 we found out that Heidi was pregnant. I'll admit that I was terrified! Partly for Heidi's health but also for how we would cope. I was never a children person and whilst I was naturally pleased as punch, like many new dads-to-be, I had my fears.

Christmas and New Year came and went but in early 1994, Heidi was losing weight despite being eight months pregnant and she was admitted to the maternity ward at the Royal United Hospital (RUH) in Bath. Five weeks of careful care and treatment later and our daughter - Kirsty - entered the world on February 11th. It was a natural birth and as equally a proud a day for me as our wedding day. Heidi and Kirsty remained in the RUH for two more weeks, during which time we discovered that Kirsty also had CF, before they were both allowed home.

Much like Heidi, Kirsty relied on a daily regime of medication and physio to keep her at a decent level of health but pregnancy had taken it's toll on Heidi and the chest infections became more regular, as did the hospital admissions. Heidi frequently told me that she never ever regretted getting pregnant and having Kirsty despite the adverse affect on her health and even in 2010, she said the very same thing to Kirsty during an emotional time in hospital.

People might (and have) say that we were wrong or selfish to have a child with the obvious risk to Heidi and the new arrival however once Heidi discovered that she was pregnant, there was never any doubt regarding what Heidi wanted to do and for all her subsequent health problems, Heidi was an amazing mother and Kirsty remains to this day an amazing daughter who copes with her illness in the same uncomplaining way as Heidi.

As CF is a degenerative illness, Heidi's condition got very steadily worse but she had a port-a-cath fitted which enabled her to do intravenous (IV's) medication at home rather than go through a hospital stay. She was also referred to other hospitals including the Bristol Royal Infirmary (BRI) and the Royal Brompton in London, all of which was to aid her care and treatment. Through all of this, she continued to work in the shop and we looked after Kirsty between the two of us, however by the time the new millennium came around, Heidi was struggling a little more with breathing.

I can't recall which hospital brought it up but it was suggested that additional oxygen might be a good idea, just as and when she felt she needed it at home and out and about so various pieces of kit and equipment was installed in our house. It was probably around then (2003-ish) that I realised just how serious this illness was and how incredible Heidi was at coping with it. She was still the same Heidi as I met years earlier - laughing, joking, never complaining, loving, caring and never once letting her illness grind her down.

Her cocktail of medication was increasing by the year and one side effect was high frequency hearing loss brought on by the frequent usage of one particular drug. Various tests confirmed what Heidi had thought and whilst hearing aids were an option, she tried them and couldn't get on well enough with them to justify wearing them constantly. Add to this the discovery of blood clots in her upper chest and you wondered just what she'd done to deserve this.

More than once, the hospital suggested a wheelchair to help her get around. Her legs were fine but walking was taking it's toll by the mid-noughties and eventually she relented and used a wheelchair (with me pushing) when out and about. Throughout all this, she still worked when she could and remained a constant member of her local church including singing in the choir, despite the obvious struggle it must have been to keep her breathing at a comfortable level. Daily physio helped but CF was beginning to take it's toll.

In September 2006 she was assessed for a double lung transplant and was put on the transplant list via Harefield Hospital. Due to her relatively small size we knew that finding a match wouldn't be easy but she wasn't prepared not to give it a go and for a while, we would look at each other when the phone rang thinking, `this could be the call`. By 2007, she was on constant oxygen 24 hours a day but still went out regularly in her wheelchair to go to church and various days out courtesy of portable oxygen. We were still lucky enough to go on holiday and visit family and friends up north, again courtesy of portable and temporary oxygen.

For three years in a row, we spent New Year at her mum's near Blackpool but in 2009 (into 2010) it became obvious that she was struggling more than usual. Things that she had coped with the previous year were now difficult if not impossible and the signs were there that a transplant could not come soon enough for Heidi before she became too ill to even be considered. On April 1st 2010, everything changed...

Heidi was in the BRI for routine IV's when her port-a-cath got blocked and although they sorted that out, I had a phone call when I was at home asking me to go down to the hospital for a chat with the doctor. Although they told me that it was simply to discuss future treatment for Heidi, I knew there was more to it than that and having rang Heidi on her mobile, she burst into tears and said that the doctor had told her that she wouldn't be going home. Cue plenty of tears from me and Kirsty although our daughter was to become my rock and my shoulder to cry on - literally.

The hour long drive to the BRI felt like a day long trip and after more tears when we went into Heidi's room, we had the pre-arranged chat with the doctor. Kirsty - now 16 - was with me as the doc told us that this was as bad as he had ever seen Heidi and that we needed to prepare ourselves for the worst. Indeed her gave her a week, probably less. Heidi had mentioned 18 months previously that she had two wishes when the time came. Firstly that she would be in a hospice where care took precedence over treatment and that when the final minutes came, that she wouldn't know anything about it - she didn't want to be in a position where she was conscious that she was dying and struggling to take her final breath.

The Easter weekend passed and family and friends converged on the hospital to say final goodbyes and a week after our meeting with the docs, she was transferred to Dorothy House hospice for her final days. After initially struggling to settle, she rallied and after a few ups and downs, it became obvious that she was holding her own and not getting drastically worse and over the course of a month, we managed to get her out of her room and took her around the gardens in her chair.

Astonishingly, nine weeks after the news that she was effectively in Gods driveway, she was allowed home early in June! By then, we had a number of additional aids in the house to help her out but her confidence had been destroyed and she hated being on her own and got extremely anxious if there was any deviation from the normal routine. It became a struggle to move from room to room and after a couple of short stays in hospital to start IVs, she was admitted again on October 6th 2010 when her new port-a-cath was again blocked.

Within two weeks she was again transfered to Dorothy House with a view to different ways of care and treatment to that provided by the hospital and eventually home again. To anyone close to Heidi, it was very apparent that everything was a desperate struggle, even getting out of bed to use her comode, and she now hated being alone to the stage that I gave up work to care for her full time. I didn't regret it at the time and I don't regret it now.

Early in November 2010, she was having bad days, worse days with the occasional good day and going home was again a possibility until one Sunday night when she took a massive turn for the worst. When I arrived at the hospice on the Monday, she was asleep but when she came around, it was obvious things had changed. She was like a rag doll and it took all her strength and effort to do the smallest things like turning over in bed or talking. Indeed as the week progressed, even opening her eyes were hard for her.

Heidi's mum and stepdad came down on the Wednesday but her mind was wandering by now to the point that her long term memory was still good but short term seemed to be non-existent and it was suddenly akin to talking to a child. The anti-anxiety meds were doing their stuff, keeping her calm but sleeping for long spells. Conversation was now impossible but we did get strange phrases from her, most chillingly regular mentions of God and Jesus and about how she was ready to meet them! She also stated that there was nothing for Kirsty to be scared of and when I asked her what she was talking about, she said, "no need to be scared of dying!" That said, her sense of humour still shone through when she also blurted out that "I'm pi**ed off now." during a time when we thought she was asleep! We never discovered exactly what she was pi**ed off with!

After a bad night on the Thursday, her mum and I agreed that we would not leave her alone and would take turns to stay with her constantly, at least until the end of the weekend when her mum was due to go home. The docs told me that they were going to increase her anti-anxiety meds and when I checked the syringe driver, I noticed that they almost doubled the dose from 17.5mgs to 30mgs. I think deep down I knew then what was coming. She closed her eyes around noon on Friday 19th November 2010 and her breathing remained nice and regular for a good eight hours. After that, deeper breaths became more and more regular until at 22:30, she took one final deep breath and slipped away with me holding her hand and her mum and stepdad in the room. No struggle at all with a final breath - exactly as she wanted it to be.

Kirsty came down within the hour and said a final goodbye to her mum who, by now, had her oxygen mask off for the first time in years and looked totally at peace. No more suffering, no more struggling, no more pain. Whilst it was a very sad moment obviously, it was equally a relief knowing that Heidi was finally free from her illness and that her life had ended with her loved ones with her and in exactly the way and the place that she had requested.

Back in April, when we initially thought that she was on her final days, lots of things were said to the extent that none of us were left with any regrets or anything unsaid. Not that there was much to resolve as we were always a very close family. In that respect, I consider myself very lucky to have the opportunity to say a proper goodbye as many do not get that privilege.

Also resolved in April were choice of music for her funeral as she chose Bobby McFerrin's "Dont worry, be happy" to go into the church and ELO's "Rock and Roll is King" on exit. She also specified that the vicar, who had known her for six years, would NOT wear black and the mourners could wear any colours they liked - the brighter the better! Father Neil ended up wearing orange and white and the entire service was a mass celebration of her life rather than mourning her death, again precisely as she requested.

Kirsty and I miss her like crazy. She was my soul mate, my best friend, my wife. That said, it's a massive comfort to know that she's at peace now with all pain, struggling and suffering left here in this world. She was an inspiration to me and everyone who met her, never more evident than at the church for her funeral service where it was standing room only.

She is, and will be, sadly missed but her legacy lives on through Kirsty who tackles her illness in the same no nonsense, no fuss, no complaining manner epitomised by Heidi. I am proud of the way that Kirsty coped with Heidi's passing and am equally proud to say that she remains my shoulder to cry on during the tough aftermath of the last few months but most of all I am hugely proud of Heidi Dowden (26 Sep 1970 - 19 Nov 2010) and that she chose to spend over half her life with me and that she was my wife for 18 wonderful years.

Rest in peace, rise in glory Heidi: Always missed, never forgotten, loved forever.

Update: March 2011

UPDATE: We buried Heidi's ashes in Christchurch Church (Frome) memorial garden on Wednesday 30th March 2011. Heidi's mum had the idea of releasing helium balloons afterwards with messages attached to them which was a superb idea and worked really well although Heidi's continued influence meant that a couple got temporarily stuck in a tree as if her wicked sense of humour continued! I carried Heidi's casket from the church to the garden and Kirsty lowered her in and all went well.

We continue to miss Heidi on a daily basis but the sadness and tears are gradually being replaced by happy memories, both obvious and long forgotten, of the many good times we had with her.

Update - March 2013

Almost three years since `that phone call` and life does (and indeed has) moved on. Many things have changed for us - many remain the same, Kirsty and I continue to hold a positive attitude to life and our attitude to life has also changed - carpe diem (seize the day) and all that! We laugh daily and know that life is too short to hold grudges. Heidi will always hold a incredibly special place in our hearts - as she will to everyone who were lucky enough to know her - and will never be forgotten. People come and go - but memories will always remain strong.

A Musical Montage Tribute To Heidi Dowden

Comments 1 comment

claire wheeler 6 years ago

A beautiful insight into my sisters life.

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