I do live life at the end of a tether – this tether being metres and metres of oxygen tubing! Although it does pose the question “Am I at the end of my tether?” On some occasions I would certainly say ‘YES!’ Waiting for a transplant (double lung in my case) is not exactly at the top of one’s ‘to do list’... People who know me well will also know that I’m not exactly the most patient person! I was really reluctant to write a blog, as it makes the situation seem more real and in all honesty, I was a bit embarrassed. This may sound incredibly odd, but when you are attached to an oxygen tank and you meet old acquaintances and even old friends, they are obviously a bit shocked to say the least! Then comes the awkward social dance... do we acknowledge the oxygen tubes or not? Or do we ask about it outright? Personally, I prefer the latter, as at least it gets the issue out in the open straight away! However, I have been cajoled into writing down my experiences and it is my hope that these will educate people on both the disease Cystic Fibrosis and about organ donation; even if only one person learns something new then it’s all worth it.
I suppose I’d better start at the beginning! I was first diagnosed with CF at about 6 months. CF is a genetic condition so although I had it since birth, the doctors didn’t manage to identify what was wrong with me until then. After the diagnosis I was put on a regime of drugs and treatment which included about a million tablets (I of course jest, probably closer to 10 drugs), nebulisers, inhalers and daily physiotherapy. The aim of physio is to bash out the thick sticky mucus from my lungs, firstly so I could breathe easier and also to reduce the risk of infection. The most well known complication with CF is the thick mucus which is difficult to remove, especially from the lungs and leads to recurrent chest infections. These infections then damage the lungs and in essence transform healthy lung tissue into scar tissue which means my lungs don’t work effectively. The aforementioned sticky mucus also affects other organs including the liver, pancreas and CF causes many problems in the gastrointestinal tract. As a young child I was in and out of hospital fairly frequently, but more so when I reached about 10 years of age. I would have regular two weekly stints in hospital where I would receive intravenous antibiotics to get fight infections. I remember spending the whole of my summer holiday in hospital between primary and secondary school! My hospital is in London, so I remember mum having to take me down the King’s Road to John Lewis (the cheapest shop there!!) to buy my uniform for secondary school! At this point I also had a gastrostomy tube fitted. This was a feeding tube inserted directly into my stomach for overnight (liquid!) feeding as I found it so difficult to maintain a decent weight. Another facet to CF is the constant weight watching, and in the opposite sense to the norm. Currently, I have to aim for a 3000 calorie-a-day diet to maintain a BMI of 20 (normal)! Every cloud, eh?!
I went through secondary school with little trouble – the odd spell in hospital here and there. I had my feeding tube removed as I was maintaining my weight well. When I was older I was also able to have my IVs at home as Mum had been trained to do them. My CF didn’t cause me too any problems during my later school years, I got 10 good GCSEs, did my A levels and then went onto university where I trained to be a teacher. Miraculously, I got through uni without a single day off due to CF! I met some great people there who have become friends and who have been so supportive of me during this tough time. Oh yes... I must not forget to mention my husband. I met Luke back in August 2002 and we have been married for four years.
I started my teaching career and had a great time and a school full of really supportive colleagues. I adored teaching and taught year 5 for 2 years. I was pretty ill at the end of my first year and was hospitalised during the summer holiday. (What is it with me and being in hospital over the summer?!?!) This was in all honesty a horrific experience as I had not been an inpatient for 10 years. I was miles from home, in deep dark London (Ok, Chelsea...) and I felt so scared and alone. I was on a non-invasive ventilator for the first week of this admission which was scary, but I got through it with the support of a very devoted husband, a loving family and some pretty amazing friends who trekked up to see me... After that admission I had to have therapeutic oxygen at home which really depressed me, as it felt as though CF was beating me. I knew that a transplant was the only way that I was going to be able to breathe on my own again, but I had a tough time admitting it. Despite this, I returned to teach another year at school and remained pretty well throughout after about half a term’s worth of rehabilitation. However, at the beginning of my third year of teaching I got another chest infection. It was at this time the doctors at the Brompton said that I should really consider being assessed for a transplant. It was here I learned that even though my lungs are crap enough to mean that I need a transplant, you actually need to be assessed to see if you can even be listed!!!! So here began a rigorous series of tests to see how the rest of my body was behaving. I had to have about 20 different types of blood tests to get my blood group, tissue type and to check for viruses and various other health issues. I had a heart echo, ECG, liver and kidney ultrasounds, saw an ear nose and throat specialist and even had to see a dentist to make sure I was dentally fit for surgery!! Of course, being an awkward so and so, I needed my bottom two wisdom teeth removed! Boo hiss.
However, halfway through this assessment admission I had a ‘little setback’. One night Luke and I were watching the TV drama series ‘House’ and I just couldn’t breathe. I had been feeling a bit funny all day, but my observations had been ok... Luke ran to get a nurse who did my ‘obs’ and discovered that my oxygen saturation levels had plummeted and my heart was racing at a whopping 170 bpm! After emergency an ECG and X-ray there was no sign of a collapsed lung causing this episode, so I had an intense 3 hour physio session and then back onto the non-invasive ventilator I went (there were a whole host of underlying complications that caused this set back and many others that followed that I won’t go into at this point). Luckily, after a couple of weeks, I was able to breathe on my own (well, with my old friends the nasal specs) again and could go home. Whilst this was a terrible experience, it did make me really want a transplant. Before I was incredibly reluctant to admit I needed one but when the choice was almost taken away from me, I soon realised that I do want to beat CF and if getting a transplant will give me a few more years of quality life, I’m all for going for it!
I am happy to say that I was deemed ‘fit’ for transplant and have been waiting for my double lung transplant since January 2010. I go to Harefield hospital (which is the transplant centre) every 6 months for a check up and I’m at the Brompton every 4 – 8 weeks for a check up there too. I have been stable for the 18 months I’ve been waiting. I live in hope that I will remain stable until I receive that call. The main way I remain sane is through my faith and I would like to end my first blog by sharing my favourite bible verse:
Psalm 23 v4 ‘Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff comfort me’.