It is mid-March and we are heeding government advice to remain indoors as we are both in our 60s and I am Type 1 diabetic although I have not had a letter telling me to shelter. My son and daughter in law have decided to deal with shopping for ourselves and her parents.
My wife starts to feel unwell complaining of ‘not being able to get a deep breath’ this is quickly followed by loss of sense of taste and smell. The only place she has been in the previous 6 days is to church. A week has passed and my wife is no longer able to do the cooking, she is very short of breath. My son starts providing cooked meals (he doesn’t think I can cook) but my wife feels unable to eat them. I think it is prudent to set up a bed in another room for myself.
It is Thursday and she is in despair and I am beginning to feel unwell. She phones the 111 service and after waiting for hours gets through. They send an ambulance. The crew takes her temperature etc and decide to take her to hospital. They take mine as well but decide mine is ok for now.
After a series of questions, they decide she needs antibiotics and should have a swab test but gets forgotten about. A nurse brings her the antibiotics and says she can go home. The nurse literally throws the antibiotics at her as she doesn’t want to come to near. A different nurse arranges a taxi home and sees her to the door passed a group of doctors and nurses blocking the way trying on PPE. They were not too pleased.
She arrives home. I am surprised but pleased. I expected her to be in overnight.
It is Sunday, my wife is gradually getting better whilst I deteriorate. I am struggling with high blood glucose readings and coughing and I sleep a lot. My wife tries to waken me and gets no response, she worries I may have gone into a diabetic coma. She phones our daughter in law in a panic who manages to calm her down and arrange for an ambulance. I am woken by the crew and wonder what the panic is about. The crew decides I am not ill enough for hospital.
On Monday I contact the diabetes team as I am on a trial of the Libre system which tracks my blood glucose 24/7. We change the fast-acting insulin/carbs ratio and up the long acting insulin dosage. I am reminded that I can measure blood ketones on my new meter and should do so whilst ill. They tell me I should call the 111 system if things get worse. I test for ketones and see that I have them and take extra insulin doses as recommended.
It is Tuesday 31st March my ketones have come down but I have vomited and can’t keep food down. My lips are peeling as I am clearly dehydrated. I test my ketones again at lunchtime and they have risen. I can hardly talk without going into a coughing fit. I phone the 111 service and wait whilst they deal with 120 calls ahead of me. 90mins later I get through and go through the set script they are given but of course my diabetes issues don’t fit their script. After 40 mins of questions where they had to keep going off line to consult a supervisor, they said they couldn’t admit me to hospital and that I should consult my primary carer (GP) to see if I should be admitted to hospital.
I get a phone appointment with a GP an hour later. Whilst waiting on the GP my diabetes team calls to see how I am getting on. They are clearly worried but tell me they can’t arrange hospitalisation in the current climate. I speak to my GP who takes no more than 5 mins to say I need to be in hospital but is barred from sending for an ambulance at this time, so need to go back to the 111 service. This time I have to wait 40mins for 70 calls ahead of me. After giving them my details, they start to repeat the series of questions I answered 2 hours previously. I was upset by this and asked them if they have not recorded my previous call. (Yes, but just checking things haven’t changed). I tell them to go straight to the end of my previous call where they wanted my GP to confirm the need to go to hospital and that he has confirmed it. I was in no mood to repeat the questioning. They said they would arrange an ambulance as soon as possible.
My wife hastily packs me a bag with enough needles and insulin for 2 days after all I will be in overnight (little did I know). She is much improved after 5 days of antibiotics.
The ambulance arrives and 1 member of the crews’ husband has Type 1 diabetes and knows what I am struggling with. She is so reassuring even though it takes me 20mins to get settled in the ambulance due to my coughing at any exertion.
In the few days since my wife attended A&E they have managed to split it into 2 separate areas, 1 for Covid and 1 for non Covid, very impressive. The ambulance crew do an excellent handover saving me the need for explanations. I get x-ray, 3 x cannular fitted, 4 assorted IV drips, blood taken, hourly blood glucose tests, and a throat and nasal swab which was administered very gingerly by a nurse who did not want to get too close.
I am moved to an overflow room adjacent to A&E awaiting admission to a ward, but can’t rest here due to an aggressive man in the bed next to me trying to get out of bed and ultimately landing on the floor.
I get moved again to AMU ward in an isolation room, it is 3am the room is quiet but ketones are being checked every 30mins making sleep difficult. It is 10am and I’m told I’ve got pneumonia and am being given large infusions of antibiotics. They are telling me I could be in for 2 days.
It is 5:30pm and I am moved again to a room in (removed for privacy reasons) and still getting my finger pricked every hour and still feeling nauseous but no sign of the anti-sickness drug they mentioned.
It is 9:30pm the doctor has been and tells me the nasal test came back negative, so no Covid (then what have we had?) and I am moved again to a bay in (removed for privacy reasons). My wife reminds me its been my Birthday I am 68, not the birthday present I expected.
Next day I have slept quite well for the first time and had a bed bath, gown change and fresh sheets, whilst coughing throughout the whole process. I feel more comfortable as a result.
Doctor visits and suggests I’ve had a false negative for Covid and I am moved again to a room as far from the nursing station as you can get and another swab has been taken. I now realise I am going to be in hospital for some time and my lifeline to the outside world is my phone, but I have no charger. My brother rings to see how I’m doing but I have to cut him short as the phone is low. My son rings the ward and arranges for a charger and a few other bits and bobs to be delivered to me.
My wife is much better, but feels dreadful that she passed the virus to me and has embarked on an extensive deep clean of the house to keep her occupied. She is fielding all the queries from family and friends as I simply can’t respond to them all, I’m too tired to concentrate.
My ketones are under control and they want me to go back to self-control of my diabetes and suggest twice a day insulin. I tell them that is inappropriate as I carb count and adjust accordingly at each meal time.
Tried e-mailing my diabetes team as my Libre sensor is running out and thought they could get one to me quicker than I could get one from home. The e-mail refused to go and I eventually worked out if I disabled the hospital Wi-Fi the mobile signal works and the e-mail was sent.
They can’t get the antibiotics in so I need a new canular which unfortunately after several attempts by staff has failed. They are sending someone from the phlebotomy team to try later. This lady arrives and fits one in under 5mins making the rest look like amateurs.
Next day I am more or less settled into this wards routine and have asked my son to send in a new Libre sensor. They have put me on oxygen through a nasal canular and confirmed I am Covid 19 positive. I receive the sensor from my son just in time as I am being moved once again to (removed for privacy reasons). As I am wheeled out of (removed for privacy reasons) low and behold they hand me a new sensor from the diabetes team, my son needn’t have bothered.
This new ward is where I remain for the rest of my stay in hospital and I soon get used to the routines. I gradually get better and am moved to an oxygen mask rather than a canular. I still suffer from coughing fits brought on by exertion of any sort. The first time I was asked to get out of the bed and sit on a chair, it took me 30mins to achieve and settle down. Needless to say, I stayed in the chair as long as I could, preferring to take my meals there.
I had a hypo during my first night in this ward and was appalled when the night staff thought I needed insulin when it was food I needed. I was constantly having to ask for needles and only getting 1 or 2 of the wrong type when I needed an average of 6 per day. I had to keep explaining as the staff changed that I couldn’t tell them how much insulin I had to take until I had seen the food and calculated the dose.
Unfortunately, the staff really couldn’t stop and chat for any length of time and the 3 other patients in the ward couldn’t communicate so I started to feel very cut off. There was no TV or newspapers so I was totally dependent on my phone for contact. My wife arranged for my son and grandson to be on the other end of a face time call and this was so uplifting to see and hear them it brought a tear to my eye. My wife revealed that my son thought I might never come home after I was taken into hospital. Things got better when a patient was discharged and another arrived. He was in the bed next to me and we were able to have nice long chats.
I had one visit from a physio to try and help me clear my lungs. She gave me some exercises but there was no follow up. They considered putting me on a full mask but after a visit from a medical doctor he realised I was not as bad as the oxygen readings led him to believe. I was grateful for that escape.
The nursing staff were very professional dealing with the 4-hourly routine of blood pressure, temperature and oxygen levels and in my case the additional blood glucose reading and insulin dose. The cleaning, bed changing and personal care staff were quite competent but occasionally missed patients out due to other health care professionals turning up at the same time. The meal staff could be quite comical at times. They tended to stay out of the unit and depend on food requests being relayed to by the medical staff. The Muslim patient next to me was brought ‘bacon, beans and toast’ when he thought he was getting ‘baked beans and toast’. He nearly had a fit. We were nearly always asked ‘What would you like for…’ which elicited the reply ‘What’s on offer’ which resulted in them going away to find out. On the whole everyone was doing their best in a difficult situation.
The day of release was ‘Good Friday’, my blood oxygen levels were acceptable and I had to maintain them till 6pm.
Free of the tether I was able to wash and brush my teeth at the sink, it felt like heaven. I had not been able to shave in the 10 days in hospital and although I had my electric razor it did not have the beard attachment. I know I’ve lost weight but I don’t know how much. I have not had my hair washed for nearly 2 weeks. After last minute tests I am told I can go home.
I let my wife know and get dressed ready to leave. The discharge letter is handed to me without explanation and am told to get an x-ray in 6-8 weeks’ time and that I will still have a long way to go to recover fully.
It would have been nice to have someone sit with me and go over the letter in detail as some of the terminology I did not understand.
After 2 hours an ambulance crew came to take another patient home, we thought we may be going together as his house was on route to mine. That was not the case and I waited around for another 6 hours till 2am before it was my turn.
As I left I got a round of applause, which rightfully belonged to the staff, and my name added to the survivors’ board.
I’m home, a tearful reunion, too tired to do anything other than get to bed. That’s when I found that climbing the stairs, took much more effort than I expected and that I was very weak. Next morning with the help of my wife and after breakfast in bed, I managed to shave and shower. I felt I couldn’t breathe under the shower but to get my hair washed for the first time in nearly 2 weeks felt wonderful. Then came the bliss of the electric toothbrush to clean teeth which had only seen a too soft manual one once over the hospital stay. I weighed myself and found I had lost 10kg or 14% of my pre covid weight.
The next 2 weeks were spent regaining strength and spending less and less time in bed.
My wife couldn’t do enough for me, making sure I was fed well with all my favourite foods. I developed a numb patch on my bottom and heel whilst in hospital which has not cleared up to this day.
The thought occurred that I was given anti-clotting injections in hospital but nothing to prevent the same at home whilst I was relatively inactive. The coughing was still getting me down and I took to using a propriety cough medicine to help relieve symptoms prior to bed time.
I would have appreciated a follow up call to see how I was doing at this time.
My next step was to get out for a walk, but I could find no guidance for ex covid patients, as to whether this was allowed or sensible. So, we took to going out early whilst very few people were around and gradually increased the distance until I was able to do around 2 miles. I nearly always had to have a sleep in the afternoon after my walk, such was the feeling of exhaustion.
6 weeks after discharge I tried to ring the hospital for an appointment to have an x-ray but found it impossible to get through with the general number just disconnecting after a while. So, I drove to the (removed for privacy reasons), put on a mask, walked to the radiology department, and was seen promptly.
A further 2 weeks passed by during which I was having good days and bad days, when I received the copy of the letter to my GP, saying ‘I was much improved’ but if I was continuing to have symptoms contact the consultants’ secretary. This took 2 days to achieve after leaving messages the secretary called back.
I had another 2 weeks to wait for the phone appointment from the consultant. I told her of my concerns and she suggested another x-ray towards the end of August. I was surprised when she said she remembered me considering 2 months had past and she must be dealing with many patients. I felt greatly heartened and reassured by her call.
It was about 3 months when the coughing finally stopped, I still get tired easily, my concentration is not what it once was, 3 miles is about my limit in terms of walking and am breathing very heavily when walking up hill.
I simply can’t do what I was able to do prior to the virus. Progress seems to have plateaued but on the positive side my diabetes is back under control although I now need more insulin than previously.
It is now 22 weeks since leaving hospital or 25 weeks since I started feeling ill. The consultant has phoned with the results of my most recent x-ray and I am glad to say that the pneumonia has gone and that I appear to be left with no permanent damage to my lungs. (Hooray) I am now discharged from the respiratory team and am told if, in another 6 months, I am not back to full health, to contact my GP for further investigation.
I still get tired easily, 3 miles is about my limit in terms of walking and am breathing very heavily when walking up hill. In the last week I have driven 50 miles round trip twice to collect and return my grown-up grandchildren. This is the longest I have driven since mid-March. Each time has resulted in me having to lie down afterwards and to feel very tired for a couple of days. So, my lungs might be better but I still have some way to go. How much of this is influenced by my diabetes, I couldn’t say. I have not been able to see the diabetes team or had the usual round of blood tests to see if any of the indicators have got worse.