In one sense these symptoms were not entirely new because my allergies have all been getting worse for a while now. But it felt different in both nature and intensity. It felt just like it had when I had a reaction to rituximab. I wasn’t that surprised when later on I developed a temperature.
The assumption myself and the health professionals came to was that may be an infection causing the asthma to get worse. One GP wanted me to go to A and E immediately, but I was very reluctant for obvious reasons. We agreed a compromise. I would start prednisolone orally for the asthma symptoms and also my rescue pack of antibiotics, and go if I didn’t quickly start to feel better.
In this case we went for doxycycline mostly because that had worked for my most recent infection which had been in the sinus. We were all working on the assumption that as both myself and the people I am living with are strictly shielding (I.e. we haven’t been going out) it surely couldn’t be a virus so by elimination it surely had to be a bacteria. The temperature resolved overnight suggesting I was on the right antibiotic and the asthma control was initially really good too.
I also found that I gained a huge boost in mental and physical energy. This is why despite the risk of long term side effects I find myself wishing I could be on steroids all the time! You might have noticed a burst in activity for me online during this period including three interviews and several articles. It is amazing what steroids can do. I feel like I have been doping. In fact the increase in activity to at least some degree predated the steroid since I also got some improvement in mental energy from the montelukast which started a week or two before my chest worsened.
So for a while everything was great. I began to carefully go out for social distance walks early in the morning when they told us it was safe for us to go out. I would get some symptoms at night but the daytime was good.
I was enjoying being able to write more easily as my energy and concentration were higher. It looked like I was on the right antibiotic. Unfortunately whilst the steroid seemed to put a brake on the inflammation after a few days it fought back. So we spent some days adjusting the dose up, then down, but then back up again as I couldn’t tolerate the symptoms as the dose was reduced.
After two weeks of all this the doxycycline course had run out. I tend to take two weeks of antibiotics not one as otherwise I tend to get another infection quite quickly. But this time it seemed as if two weeks were not enough. After a couple of days the increased temp and pulse returned. So we restarted the “foxy doxy” alongside continuing the prednisone.
Everything was great for a few days. I was even able to walk for 30 minutes for the first time in years! The asthma was well controlled. The hay fever was well controlled. The skin itching almost completely disappeared.
But then on Friday night into Saturday morning (13 June) I was suddenly woken up by very bad itching and an urticaria rash. The asthma wasn’t too bad, but the hay fever was. It was a few hours before the steroid was due, and when I took the steroid everything settled down. I didn’t think too much of this.
But twenty four hours later in the early hours of Sunday Morning (14 June) despite still being on the foxy doxy and 40mg of pred combo I was woken by a severe asthma attack of the “I really can’t breath and my chest is really tight and feels like it is closing up” kind. I felt like my whole bronchial tree (airways inside my chest) was squeezing itself hard. I also had a really itchy skin, rash, and bad rhinitis.
Extra inhalers helped a bit but I had a difficult few hours until the oral steroid was due. When my temperature also went up, it was straight back onto the health professionals wondering if I could have yet more steroid and a different antibiotic. My pulse was high. My temp was high, though less than the magic 38C/100.4F and my blood pressure was really quite high. And I was developing a concerning symptom which although psychological can indicate something is severely wrong with you. I had a deep and foreboding sense of impending doom and that if we didn’t do something urgently I would be in real trouble.
So reluctantly I agreed to make the trip to the UCLH Accident and Emergency room. It is a familiar place to me, but things looked very different. They had roped off most of the chairs in the waiting room. But it didn’t matter since nobody was sitting in any of them anyway!
A burly security guard on the door looked at me almost daring me not to wash my hands with alcoholic hand gell and replace my mask with one of theirs. It was not his role to assess the suitability or otherwise of other people’s masks and later on I was allowed by the nurses to revert to using my N99 Cambridge Mask. I walked through the door, gave my details to the receptionist who was behind a screen then moved straight to a nurse who took a set of basic observations right there and immediately moved me thought to a side room.
I felt very safe. Bloods went off within two minutes of me being in the department, alongside an ECG and A few minutes later IV tazocin (a high strength broad spectrum antibiotic). I used to call that internal bleach until we had to be very careful mentioning the b word thanks to a certain politician.
For the first hour or so it felt like I was with a member of staff almost the entire time. Which felt a bit strange having been isolated for so long. But I did feel safe as they were all wearing masks and kept their distance wherever possible. A number of other tests including a COVID19 swab and Chest X-ray were swiftly and professionally performed alongside a hefty dose of compassion. There was zero waiting whatsoever.
Soon my X-ray came back as normal which is good but doesn’t prevent there being an infection elsewhere or indeed even a mild chest infection or bronchitis. Given my severe constriction of the breathing tubes at night I suppose that is probably what was going on. Relatively mild thankfully though it sure didn’t feel mild! Not pneumonia. But making me feel dreadful and messing up my blood pressure pulse and temperature.
We soon found out I wasn’t neutropenic, that my lymphocytes remain really low (as expected post treatment with chemotherapy), that to nobody’s surprise I did not have COVID-19. They had the result for that swab inside an hour which is impressive.
The conclusion seemed to be that it was probably just a mild chest infection making my asthma worse. Some doctors spoke about possibly sending me home, but now I was there and had been fighting this alone for so long so I wanted to stay. This was due largely to this strange sensation in my chest that something was seriously wrong. My observations were also out of the ordinary so I was admitted overnight, and ended up staying for two nights.
I did get a huge shock, when I found out that I tested positive for rhinovirus. This is of course nothing to do with rhinoceros but rather the nose (the Rhino being named for its rather fine horn of a nose). I had the common cold. It sure didn’t feel common. And maybe I did also have something bacterial since my temperature went down pretty quickly after the dose of tazocin.
Two questions still bother me a bit: How could a cold make me feel quite so bad? I should say I had no sneezing or cough. And how could I have caught any virus despite strictly shielding alongside everyone I am currently staying with? Even my social distancing walks seemed very safe to me and the timing would be wrong anyway since my chest symptoms pre-dated starting that. The only conclusion I can come to is that perhaps I was not quite as careful in washing things delivered as I thought I was being. Maybe my hand washing technique needs some work. The doctor said that viruses are incredibly infectious and it is very hard to totally eliminate the risk of catching them. I am obviously very grateful it wasn’t coronavirus which got though my defences.
Day two of being in hospital was spent dozing. The doctors decided to stop my steroids suddenly to help my body fight the infection better, and in case the steroids were contributing to the raised blood pressure. I mourned (and still mourn as I write this) the absence of energy. I spent most of the whole day drifting in and out of sleep or having brief conversations with the nurses or doctors. My chest felt tight but not as bad as it had been feeling.
Psychologically I found being around so many kind compassionate professionals quite healing. I hadn’t realised just how much I have missed a variety of human contact. One nurse, when they saw I was really upset, even offered me a hug. I took then up on their kind offer whilst of course wearing my mask and making sure I breathed over their shoulder. I felt like a human being again.
When I was resisting going to hospital I had been concerned about catching COVID-19 there. And of course it is still possible that I may have done. But if so it won’t be due to any carelessness on behalf of the hospital staff. Everyone wore their masks, washed their hands, used gloves and aprons, and I had no contact with any other patients. The X-ray machine and echocardiogram equipment came to me rather than me to them. All in all I felt remarkably safe and well looked after. If you do need hospital then rest assured they will most likely take every effort to keep you safe.
All the doctors, nurses, physios, radiographers, porters, receptionists, volunteers, cleaners I met and anyone else that I have forgotten deserve honour, thanks, and yes a pay rise.
Day three had me feeling a bit less drowsy, and my chest feeling better also, though still a bit tight. An echocardiogram was carried out to check my heart was still beating (or that was the joke I made as I was being examined). It is quite a strange test actually, especially during this period of social isolation. There is no other way to describe it than being hugged by the person doing the test. So that was a bit more physical human contact for this reluctant hermit.
As I write this I am back here at my parents home, strictly isolating myself from my parents in the upstairs area until we are sure I haven’t brought anything nasty back with me. Food is being delivered to me outside my living area just as it was at first when I arrived. And that little taste of social contact with people other than my parents has gone. A conversation from the top to the bottom of the stairs and video calls with friends and family will have to do. But I really do miss being an actual human being rather than a virtual one already!
Photo taken from UCLH tower October 2018 during a previous admission.