Rather than trying to find the time to catch up and do things in the correct chronological order, I’m just going to post this now. A lot of health issues have gradually come to the surface over the past few months, but then quite suddenly seem to have rushed together into ‘something’. I will write it all up, but it may be out of order. As this is current, it’s coming first.
First, a bit of background… Prior to the allogeneic stem cell transplant, I had a lung CT scan. This was to provide a baseline, so they could monitor me in the recuperation process.
The FEV1 test consists of taking a deep breath and keep blowing, keep blowing, keep blowing out as much air as possible into a mouthpiece attached to a tube with a recording machine at the end.
The test is not deemed to be 100% reliable, as it is effort-dependent, i.e. if you’re tired then you will blow less strongly and if you’re energised, you may blow more strongly, therefore not giving a consistently reproducible and precise representation of actual lung function. So small variations are not given too much heed.
My baseline figure prior to transplant is not shown on this chart, but it may be that the ’2.5′ at the top of the FEV1 column reflects that initial test.
Since then, I have had regular check-ups, with unfortunately regular, yet gradual drops in lung function. After this photo were two more appointments on 7 Nov and 5 Dec. The FEV1 results for those dates were 1.65 and 1.6 respectively.
While each time I took the test, the figure has dropped, it has not been seen as critical. The difference between 2.0 and 1.95, and the difference between 1.65 and 1.6 are negligible, given the inexactitude of the test. However, the difference between 2.4 and 1.6 over one year, is a loss of a third capacity. And this has now become an issue of concern.
In October, I had had a cough/cold for about a week, so it was possible that in November, I was still getting over it in terms of recovering my lung function. I was also very tired that day, so both these aspects may have made a difference to the test results.
Nonetheless, they asked me to have a chest CT scan and come back in a month, rather than the usual three-to-four months. The CT scan would show up if there were any signs of infection, e.g. pneumonia, TB or anything else to be concerned about. The main concern is Graft versus Host Disease [GvHD], which I’m beginning to understand is not easily diagnosed, only by eliminating the other possibilities.
I had the CT scan on 27 November. It was an innocuous procedure. Fortunately no barium this time, just lying on the moving bench and having to take and hold breaths from time to time. It was over in about 20 minutes.
On 5 December, I saw Dr James Donaldson, and the results of the scan – they showed nothing serious. However, as the FEV1 results that day showed I was now down to 1.6, clearly there had been no improvement from the previous visit. James suggested that I came back in two weeks, but said he would check with the clinic head, Dr Andrew Fogarty after I’d left, to seek his opinion on how to proceed.
A short while later, at the Transplant clinic, James called me to say that Andrew Fogarty wanted me to have a bronchoscopy at this point, rather than wait a further two weeks. An appointment was made for Tue 17 December @ 3:15pm.
Meanwhile, away from clinic… At some point in November/December, I began to notice feeling breathless on slight exertion. If I dashed upstairs or if I was talking excitedly, or talking while I walked, I’d have to catch my breath. Fortunately I rarely have to run for a bus these days. I had also developed a slight dry cough – just occasionally during the day, with no phlegm. It was only at this appointment in December that I really recognised they were happening. Sometimes things just creep up so slowly, you barely notice. This is now part of my daily reality, but fortunately, as yet doesn’t impact too much on my activities.
The bronchoscopy was to be done under sedation. The literature said I needed to arrange for someone to collect me and take me home. It also said that someone should stay with me for 12 hours after the procedure, which would mean someone staying overnight. For some mad reason, I chose to understand that this was advisory rather than mandatory.
I live alone, so I put out a request on Facebook for anyone who was willing to take and collect me. Sharron, whom I’ve befriended recently at Maggie’s, stepped up, happy to chauffeur me. In fact I was also able to help her as she had an interview beforehand near where I live, so I could accompany her and use my disabled parking badge for her to park. It felt like a win-win reciprocal arrangement. I like those!
Arriving at the Endoscopy unit at 3:15, I waited a while before being seen by a nurse to complete the consent documents, around 3:45. It was at this point that I mentioned not having anyone to stay with me. She was very down-to-earth about it and said that on a personal level, she could see that I was sensible and would undoubtedly be fine, but on a professional level, she would not be happy to proceed and nor would the consultant.
What to do? I had a few choices… I could re-arrange it for another day, I could ask Sharron to stay over or see if I could find someone else who would, or I could try having the procedure without sedation. Theresa seemed to think that I’d be fine, that the sedation is not about managing pain, but the anxiety of having a tube stuck up your nose and down your throat.
I agreed to give it a go, on the condition that if I couldn’t tolerate it, they would stop and we could rearrange. And then I waited, and I waited, and I waited, on uncomfortable narrow flip-up seats, not much better than at a bus stop. I did have a nice chat with a woman who was also waiting and was much more nervous than me, so keeping her occupied and calm passed the time and I think was beneficial for her too. Nice little aside – she used to live near the church in the old part of the village where I live.
Meanwhile, it was now almost 5:00pm and I hadn’t even been called in to the treatment room. The doctors are supposed to finish at 6:00. I hadn’t eaten anything all day as the instructions said no food for six hours prior to the procedure. I only woke at 9am. I hadn’t drunk anything since 1:00pm, for similar reasons. Strangely enough, I wasn’t annoyed or irritated, I just became very logical and assertive. I thought, this isn’t working, so I got up and left.
I was able to rearrange the appointment for Thursday 19 December @ 8:45am. It would mean an unusually early start for me, but no one would need to stay overnight, just until 10-ish at night. I would have to find someone to take me into the hospital, but Sharron was quite happy to take me home and spend the evening with me. Again, I put out a request on Facebook and another friend, Sandy (who also writes a blog) stepped up and agreed to take me in.
I’m so pleased with myself for daring to ask for help and being willing to accept it gladly. For someone who has spent most of her adult life often choosing not to ask for help for fear of resounding rejection, resulting in having to be resolutely independent, this is a big step in my inner journey.
They say “Be Strong enough to stand alone, Smart enough to know when you need help and Brave enough to ask for it when you do.” I’m happy to say that this experience was a success in that regard.
Thursday went much more smoothly. Firstly, I wore my new red boots from Barcelona. These super-power boots would get me through today, don’t you think? Because we all need super powers from time to time. Happily, I didn’t have to wait too long. I chose to wait in the waiting area at Reception, on comfortable chairs. I felt calm sitting in the early morning sunlight pouring through the window, knitting in fact. How mindful is that?
The procedure was fully explained to me. A tube would be passed through my nose and down my throat into my lungs. The tube is about the thickness of a ball pen, but a lot more flexible, with a camera on the end. In the treatment room was a screen to see what the camera shows. I knew from a previous colonoscopy that I would not be aware of anything at all. So sadly any curiosity I had about my insides would have to remain. They also told me they would do a lavage, where they squirt fluid into the lungs and then remove it to then try to grow cultures (bacterial, viral and fungal) in order to diagnose potential infection.
The only slight complication was cannulating me. They had to try four times before succeeding. We were close to me popping next door to Haematology to get them to do it, but fortunately the last attempt was successful. The problem with not eating and drinking is that one dehydrates and that makes it harder to find a vein. Mine are difficult enough without any further hindrance. But I have to say, they were some of the least painful attempts to cannulate me ever. And they were such a caring, communicative team of doctors and nurses, I felt very safe, respected and cared for. So a big thank you to Dr Amy Binnion and her team.
All I knew about it once they’d managed to cannulate me, was a dose of sedative, followed by an unpleasant shot of liquid local anaesthetic up my nostrils and I think a further dose of sedative into the cannula. That was it. I was out of it. I always react very sensitively to any kind of anaesthetic.
The next thing I knew I was waking and dozing on a trolley on and off for a few hours. And then it was time to get up, have a drink and a biscuit and ask Sharron to come and walk me over to Maggie’s where she had a yoga class. I hung out chatting in the kitchen with volunteers and other centre users. It’s such a warm friendly space to spend time and not have to do anything.
Later we went home and I cooked dinner while Sharron had some quiet time knitting and enjoying the carnations I’d bought the day before. She tried feebly to complain that she was supposed to be looking after me, but I wasn’t having it. I think she’d been more worried about me than I was, so it was her turn for a rest.
I was fine and it was nice to give something back. I just needed someone with me, ‘in case’. Fortunately, there was no ‘in case’ and we had a lovely evening eating Quorn spaghetti bolognese, with a wee glass of cream sherry and chatting till the cows went home, which after 10:00pm, Sharron did too. And no, this scenario didn’t happen. All in all, it was a really good day! How weird is that?
The Cancer Research UK website is simple and clear in its information around Graft versus Host Disease. This is what they have to say about chronic lung GvHD:“You may be short of breath and wheeze when you breathe. You may also have a persistent cough, and be more prone to chest infections.” And about chronic GvHD generally: “The length of time chronic GVHD lasts varies… The average length of time to have chronic GVHD is between 1 and 3 years.”
I will be back at Dr Fogarty’s clinic on Thu 2 January to see if they’ve managed to grow any bacterial, viral or fungal cultures from the lavage. If so, then I will probably have to take tablets, but if not then I think they will confirm Graft versus Host Disease in my lungs. What they will want to do about it, I have no idea. More steroids perhaps?