Cystic Fibrosis Hospital Admissions & Covid 19
Hopefully this post will be helpful for anyone considering a hospital admission for their CF. These are my own views and related to ward 26 at Heartlands Hospital, Birmingham and only really relevant to people with Cystic Fibrosis. On this ward patients have their own individual rooms with an ensuite bathroom, so obviously a different kettle of fish to other wards.
It’s a bit of a long blog post but I tried to cover everything! I had a couple of people messaging me on Facebook and Instagram asking me about how things were “on the inside.” My main advice is not to put off going in (as I did!). I felt completely safe and wish I’d taken my own advice from the future! Hopefully, now I’m on Trikafta (more of this another time – it is quite a saga) I won’t be back in for a while! Famous last words…
Hospital Admissions with Cystic Fibrosis During Covid 19
Having spent A LONG TIME in hospital due to my ongoing sinus issues, I was not really keen to go in again. I’d just about got used to being out and getting in a good routine, but my lungs and sinuses had other ideas.
After 2.5 weeks of home IVs I finally bite the bullet and accept it ‘might’ be beneficial to come in. By ‘might’ I mean, I hoped it would be beneficial and I’d actually get better rather than hoping I would. My main motivator for going in was how exhausted I was at home trying to cope with everything, then IVs and not having a carer currently.
My boyfriend asked what would I get from being in hospital that I wouldn’t get from being at home. It was a good question to make you think if a hospital admission for your CF is going to be helpful. To be honest, for me, the main answer was a rest – with everything brought to me: food, water, IVs, entertainment (hmm maybe not that one!). Then on top of that, I could have fluids and more intense physio. Plus, of course, access to the medical team and any tests I needed.
Being in Hospital Just as Covid-19 was kicking off
I had been in hospital just as Covid was starting and it was Very Stressful (or Very F***ing Stressful as the case may be) for all concerned. Patients, staff, everyone. There was a fear of what was coming, and the expectation of this tsunami of cases hitting. Procedures were changing every day and visiting canceled as well as clinic appointments.
Staff weren’t wearing masks, or any PPE as standard. They were however trying to clear out as many CF patients as possible from the ward. I have to say my anxiety was pretty high especially surrounded by constant features on the TV about it, and social media – I mean what else do you do in hospital? Apart from fueling your fears, filling your head with ‘what ifs’ and waiting for the proverbial to hit the fan!
Packing for Hospital Stay as a CF Patient in Covid-19 times
I was not sure what to expect when I went in. I had to think carefully about packing as I knew I’d not be getting visitors to come in and restock clean clothes etc. So I tried to make sure I had absolutely everything I needed. I failed on the first part when unpacking and realised I’d not packed any bras and only had the one I was wearing. Oops!
I suspected it might be quite warm on the warm so made sure I packed warmer weather gear and left my dressing gown at home. As family live quite far away, I tried to pack enough clothing, toiletries, and entertainment to last me. And my fan! I am so glad I packed that. I’d recommend taking a home spirometer if you have one too as they weren’t doing lung function as standard. I’d suggest packing more in entertainment than usual as with less visiting there are more hours to kill. Anything meditative or mindful, like cooking books or knitting I’d suggest. Or anything that eats up your time without realising. For me, I watched about 100 hours of makeup tutorials on YouTube (and having practiced since coming out, I can safely say that I am as shite as before!).
Arriving at Hospital for an Admission on the CF Ward
My boyfriend was able to take my stuff up, although we came the back way in so didn’t have dealings with security.
In some aspects nothing has really changed in hospital. The daily routine is the same: You still have physio, IVs, and food at the same time. You still have your same room equipped with fridge, TV and the usual accessories. Catering is pretty much the same with the usual food options and extra meals/snacks ordered via the dietitians.
The other thing I noticed was how well-staffed the ward was. It was very unusual! Apparently, as the wards at Solihull Hospital were closed, a lot of their staff were helping out on the wards in Heartlands. It makes you realise how chronically understaffed the ward was before getting the new staff on. I hope they get to keep a higher staffing level when (if!) things ever get back to normal.
No Visitors on Ward 26 Heartlands Hospital Currently
The only real difference is there is no visiting which definitely makes things quieter on the ward. In some ways it feels nicer as its quiet, but obviously it makes a long stay difficult. The doors are currently locked which keeps people out and actually makes the ward feel really safe. No worrying about having to hide valuables etc.
I believe that you are allowed off the ward, as long as you are wearing a mask when you leave your room. So you would be able to see visitors in the hospital grounds or go down to the shop if you liked. This wasn’t relevant for me as I couldn’t go out unsupervised (due to my balance issues, not that I might do something reckless – if only!!).
The ward also has a balcony which is nice to take a few minutes on to enjoy some “fresh” air (as fresh as Bordesley Green can provide).
PPE for Cystic Fibrosis Wards
All staff now wear masks – that is everyone who is working in a hospital even if they do not have direct contact with patients. Within a day or two, you quickly become used to it. After a while you begin to look from the differences in how people fashion their masks – they may have a knitted extender, or it appears a twist before the mask goes over the ears is popular too!
Guilty Until Proven Innocent (Positive until proven Negative)
They need to treat you as a potential source of Covid-19, until you have had a test come back negative. The difficulty lies with a respiratory ward that the symptoms we have when we are unwell are similar to the symptoms of Covid: High temperatures, worsening cough etc. So until you have had your swab come back as negative, everyone entering your room has to wear PPE to protect themselves and others.
Covid 19 Tests and Swabs in Hospital
The initial Covid test was just sputum – easy as you like. Well easy for most CF patients (unless you have already started Trikafta!)! But as I stayed in longer and they started to prepare for the ‘second wave’ everyone on the ward started to have weekly Covid screenings on the same day. This totally makes sense as someone may be negative when they come in and then pick it up when they go to a different department. For example, I was in for six weeks and in that time went to have an MRI scan, to visit the ENT department and to use the parallel bars in a different department, so you never know what you could pick up.
The ‘proper’ Covid swab tests, I had heard weren’t very pleasant! I have to agree! With the cough element, it felt a little like the nurse was trying to choke me and I had tears in my eyes. Apparently they are told tears in the eyes are a good sign of a well-executed test! They also poke the swab up your nose but having had all manner of debris taken out of and poked up there in recent months, a swab was nothing! She said I was the best at the nasal swab! It’s nice to be the best at something, I’ll take it – a wins a win! I might even put it in my National Record of Achievement! (I’m aware this joke is only applicable to a selected audience age!)
PPE For CF Physio or “Aerosol Generating” Activities
Once the swab has come back negative, you only have to have people wearing PPE when you have been doing ‘aerosol-generating activities’. What the bloody hell is an aerosol-generating activity I hear you ask…? I had imagined that as being nebulisers – but no, the aerosol is generated by you, not the machine. So anything that makes you cough, or releases your breathe into the air more vigorously. Basically anything involved in physio – exercise, percussion, airway clearance – as it makes you cough. And also if you wear an NIV.
So this means anytime you have physio and then an hour afterwards, people need to be PPE’d up if they enter your room (or wherever you have been doing physio). In reality, this isn’t a problem as they can pass you things through the door and tend to avoid coming in until the time is up.
This also means that if you sleep with an NIV on overnight, they need to be wearing PPE to come in whilst you are on it or an hour after you’ve come off it. For me it hasn’t been a major issue as I tend to wake up an hour before breakfast so they can come in.
PPE Kit – What Physios Will Be Wearing When They Treat You
The PPE kit consists of an FFP3 respirator (mask), visor, long-sleeved gown ‘fluid-repellent*’ and two pairs of disposable gloves. *Could this be a more repulsive term?
They have a system on the door with clocks on saying what time it is ‘safe’ to go in, and if a physio session is in place which makes it easier for others to see what is going on. There were quite a few times when being asked what I wanted for lunch, the menu was held up or shouted/mimed through the door!
Walking and Exercise During The CF Hospital Admission
If you usually go for a walk during physio, you can still do this. If you leave your room for any reason you MUST wear a mask. They tend to favour walking outside as it reduces the chances of infection. You can take off your mask once you are outside too. Or you can just walk on the ward if this is something you normally do. You can als0 use the gym, but capacity may be limited as after each user it needs to be cleaned and then no one else can use it for an hour afterward. You may be able to get an exercise bike or treadmill in your room too, if you promise to cough up loads of junk!
NIV Set Up on Covid 19 Hospital Admission
When I first went in there was an issue with the NIV in that I had to use a ‘closed circuit’ to ensure any air I breathed out was not contaminated. This meant I couldn’t use my usual set up and mask that I’d use at home. This is because they consider you infectious until your results have come back negative, so need to filter the air you breathe out.
The first night I had to wear a ridiculously sized mask, plus two filters to ensure the air that I breathed out was filtered before it got released into the air. I felt like I was suffocating and had to get it off my face. You know things are bad when you’d rather sleep without an NIV (or in my case this is how I felt). For some reason, this was only available in a “Large”, though I did manage to get my hands of a small (which was still massive, but not as ridiculous!). Feel free to laugh at how ridiculous it it – there has to be some benefit to this night of my life!
Bear in mind, I’ve been using an NIV to sleep on for four and a half years and this is the first time I’ve ever felt like this. Even the first time using an NIV mask, or using the range of rigid plastic masks before I fell in love with my sleepweaver mask!
Luckily, I was able to go back to my usual mask set up after I was confirmed Covid-negative. My usual mask has never felt so good! Obviously this only applies to people using an NIV to rest on, not do physio on, and I was able to do physio on my nasal pillows without issue (after I’d been cleared of Covid).
In Conclusion – What To Expect In a Hospital Admission With Cystic Fibrosis During Covid-19
Other than getting used to the physios coming in looking like they were coming to do a nasty procedure (especially when they came in putting on plastic gloves – which reminded me of the Blink 182 album cover Enema of the State), nothing really felt particularly different.
The whole time I was in hospital, I felt completely safe. Everyone stuck to the procedures and there didn’t seem to be any issue with PPE being in short supply
The biggest issue, other than the first two nights on a different NIV circuit, was the lack of visitors or contact with the outside world. It’s worth taking your own spirometer if you have one as you may not be able to do a lung function on the ward. Also remember to take more activities to occupy your time if you usually spend a lot of time with visitors.
I hope this was useful. Have I forgotten anything? This is correct to the best of my knowledge in the end of July 2020 when I left hospital. For more information check the Heartlands Hospital Covid 19 webpage or speak to someone from the CF team. Or visit the Heartlands CF website (which has all the contact numbers for the team).