My hospital visit
My health had been suffering the last few weeks and I was hoping this was just a ph blip, it happens. I noticed a change when we had snow a couple or three weeks ago.
A walk around the reservoir with Colin and Izzy to make a snowman was so hard. My feet were so difficult to lift and my breathing was very laboured. I thought it was the cold despite my wearing a mask and carried on. Snowman built and pictures taken I was more than happy to get back to the car. Izzy and granddad were very pleased to have built the snowman and many pics were taken. Who knows when we will get snow again. This was the last time I have done anything significant due to my deteriorating condition. I kept expecting to wake to a better day but it was not to be as the following paragraph will explain why.
We were surprised last week on going into the bedroom to see my heart monitor flashing like mad. This meant that something had been flagged up in Sheffield on their monitors and they needed me to give myself an ECG! This is very simple to do due to my having the chip in my chest. The ECG seemed to go for a long time and just as I was beginning to think it was a blip in the machine when I got the tick on the screen which showed it was done and all data was being downloaded and sending off to the correct person to read these results. Both Colin and I knew this meant something was going on apart from the regular palpitations I often have - it was a first for me in two years, not the normal one of just a brief touch to my chip and the reassuring blip the data had been sent. Thank goodness for this chip and the ease of taking and relaying results to my specialist. We heard nothing more about it then but I was in touch with my hospital due to having water retention around my trunk and wrists and thighs. On top of that my breathing was dreadful (still is) which meant I could not walk far and standing up to brush my teeth sent my heart rate up to 127 bpm which I knew was not a good sign. An appointment was made for me to attend a clinic on Friday in Sheffield and we were both relieved as we hoped to find some answers.
There were just three of us in the clinic though all the beds on the wards were full. More or less as soon as I sat down I was greeted by the lovely medics Jen and Alex. They asked what had been happening and then I was informed that my ecg had shown “ two unusual things” on it and they were going to see if a heart specialist could put any light onto it. They did ask if I had noticed anything different and all i could say was the vein in the right side of my neck was more jumpy than usual. I had had a few pains in my chest but generally I try to dismiss them as muscular spasms! I was also told that the pressures had risen in my lung, - again thank goodness for the chip in my pulmonary artery which pulled this up. These chips have to be the way of the future. Of course whilst they cannot stop deteriorating conditions they may catch a problem before it gets too far.
It was clear to them that I was struggling trying to breath. They did note from my Fitbit results - which they can see at any time through the powers of computers - that my pressures were rising when I was NOT walking but the problem was I just felt too poorly to walk! Catch 22 for sure. So yes, I know the huge importance of exercise which for me is a good walk helps our pressures but with breathing difficulties it is very hard to walk.
Jen and Alex left after virtual hugs all round and another ECG was done on the ward. I wish I had remembered to ask the doctor I saw later if that too showed unusual data but I forgot, Colin would have remembered but as he was not allowed in this was a question that did not get addressed. I also did my walk test but not for long as my legs began to wobble. The results later showed no rise or fall in blood pressure or in my oxygen levels where normally oxygen might drop to 72 percent, I was not surprised as I had put no effort into this walk as I just felt too breathless to be dealing with it right then and only did a few steps. Time then for my consultation with my doctor.
I had only met this particular doctor once when admitted in July so though he was very nice we did not have the rapport that grows over the years with my regular specialists. He was very polite though and told me what I already knew - that I was monitored on just about everything remotely which was a great thing but obviously the machines cannot let them know how I am feeling, We discussed my breathing issues and I asked if I could be low on ferinject. He said he was wondering that himself as my body is clearly struggling to get oxygenated blood around my body and it could be the result of low ferinject that coats my red blood cells to hopefully help move the blood flow. More blood tests are scheduled and an overnight stay sometime in the new year to monitor me is on the cards. He sorted out the infusion and after I had it I was allowed to go home with no real answers but things ongoing for me. These ferinject infusions can take up to three weeks to show any signs of improvement due to our red blood cells only being replaced one percent per day. Still we remain hopeful. Right now I may be down but I am NOT out and will continue in my belief that I will improve, that my doctors will find a way to help me, I simply will not allow myself to give in.
Oh and I STILL have water retention despite being at a very low weight so goodness knows quite what I will weigh if eventually we do manage to get rid of it all. I dread to think. He did ask about my appetite and I said that whilst it is ok I don’t always manage to finish a meal due to total fatigue and breathlessness.
This morning I made homemade broccoli and blue cheese soup as very easy to get down and enough calories to help my weight rather than the salads and fruit I so love for lunch. Might be bad for me but if I need to try to stop my weight loss some things must change,
COVID
I have been watching the news reports about Christmas and the changes that have been made due to the latest rises in the numbers of cases and the new strain of the virus that has materialised. My heart goes out to those that had planned lovely days with family after the heartache of the last eight months. Quite how it will work I do not know, they can’t knock on the door of all householders to make sure no breach of the rules, We are not seeing anyone as I said before except for a brief drink under my families gazebo next door, then home to an easy but delightful meal for us of halibut steaks with small potatoes, loads of veg and a sauce of anchovies and capers etc. I do not have a huge appetite and quite frankly looking at all the food eaten on Christmas Day actually curbs my appetite even more so we are really looking forward to our lovely simple meal - then a little time with the family in the open air wearing masks and back to maybe watch a movie or two.
We are currently watching "The Long Way Up" featuring Ewan McGregor and Charley Boorman riding electric Harley Davison motorbikes from Tierra del Fuego at the bottom of South America up to Los Angeles, a ride in excess of 13000 miles, so if we are not caught up by then we shall finish seeing them complete their challenge, This is a very enjoyable thing to watch in front of a roaring fire and the weather can do whatever it likes, we shall be very cosy,
(Gosh just watching the rules for the Christmas period will be a nightmare for many. I am not sure if my hairdresser will still be allowed to stay open now or not, I have an appointment booked for first thing on the 22nd December and I really need this mop of mine cutting. )
My heart is breaking for families affected by these new changes and I just wish we could get this virus under control. If all followed the rules who knows, maybe we could have curbed it but sadly we see so many who take a great delight in doing whatever they wish and not bothering to wear masks, no social distancing etc. It makes my blood boil to see these protests going on etc. about their human rights, what about the rights of the ones they may so easily pass on the virus! We MUST work together to beat this. We have followed the rules even to the extent of not even driving up my friends drive to deliver a cake! Problem solved as she can drive up our road and take said cake from a wall outside Food bought in, plans made and then all to be dashed for so many I understand the reasoning behind these rules but it does not stop me from feeling for loving families so looking forward to these few days snatched away. How can a loving parent choose between which family to share the day with, son and his wife and kids or daughter and her family etc, which set of grandparents! Nightmare. We personally will be fine but heartbreaking for many others.
Well I must leave this here and get this blog out as there are many lovely people asking what went on yesterday. So much easier and more detail to do it this way.
Please have as good a holiday as you can and think about those who have lost loved ones. The chairs around the table will be empty of many this year due to deaths or the recent restrictions. We need to think about them and if somebody you know is affected maybe a phone call might go down well so they won’t feel so alone. Such a sad time instead of a merry one.
Please take care.
Warm love to all.
Carole xxx
