I had an absolutely shocking day last Wednesday. I knew as soon as I got out of bad that it would not be the best, certainly if not a wafer biscuit day then it would be a mix between wafer and rich tea. I was very unsteady on my feet and there were a few times when I was standing that I felt I was about to fall forward. My heart and blood pressure were all over the place falling as low as 84 over 47 with a heart rate of almost 100 beats per minute. This same heart rate was very erratic indeed jumping around in my chest wall like a ping pong ball on a table, flopping around and missing beats. I hated this feeling.
As the day wore on I decided that I was not going to move from my bed, even to get a drink. I was taken well care of and to be honest was not even bored as I was feeling too bad to even feel this. Colin had a previous engagement at a friends house and was going to cancel but as we with ph know what good does it do to keep cancelling engagement after engagement, nothing would get done. He was only six minutes away in the car and I promised to ring and ask him to come home if I wanted him to. A couple of times he rang me to ask if he should return and I said no but on the third ring I said yes, he should, as I was thinking of heading off to my A & E department though very reluctantly. Minutes later he was home and we discussed what to do. I hate going to hospital and hate spending tax payers money in the A & E but sometimes needs must. However I also know how ph works and I know that we can change from minute to minute and it would be typical that I would go only to have a calm heart with a clear and steady heart beat!
We decided to wait until after midnight and if no improvement then we would go, it is only two minutes away in the car. The reason for this is simple. If we have had a night in hospital with our condition (other than elective as my denervation was} then we are punished when taking out holiday insurance. The price hike can be enormous and as we are hoping to go abroad again this year I did not wish for this. Had we arrived at even one minute to midnight and left one minute after midnight then we fall into this category, on paper we had spent a night in hospital as an emergency patient. Obviously if I was having a heart attack then we would have gone immediately. I just kept hoping for an improvement. Midnight came and no change but I sill wanted to hang about. Eventually we both fell into a light sleep with many periods of wakefulness but again a new day emerged, my heart had settled somewhat and my blood pressure had risen a little to a 92 over 54, certainly more acceptable. The thing that is so awful about pulmonary hypertension is that it is so unpredictable and without doubt this is annoying when we cancel so many events.
Most of us with ph can feel our heart beats easily. I find a simple way to monitor mine is to clasp my hands intertwining my fingers By doing this I feel each and every beat and I also of course then feel if they are inconsistent. I am happy to report that today the beat is a nice and steady one, hope this continues. I know our blood pressure machines also show how many beats per minute as do our oxygen monitors but they do not show the irregularities that my hand clasping does, simple but effective.
Strangely enough though through all this I did not get stressed, unlike the day before my denervation when I brushed my teeth with a steroid cream! Don't try it, not at all nice!!
Friday we decided to go to a kitchen showroom to see about designs for the new house. Though we are a long way off yet it is better to know what we want in it now. At this stage we can move a window here, shift a wall or a door there but once they are built we will be more limited. I was getting stressed at seeing Colin moving bits of paper representative of cookers and freezers etc and just wanted to get it looked at by a professional. Now do not get me wrong Colin is great at this, he has a "seeing eye" to where things will look best and is very good with a scale ruler but all it does to me who does not have this vision is send my stress levels through the roof. So off we went.
I did not do too badly for the first hour and was loving looking at kitchens and appliances but without warning it began, the sliding of my feet over the floor as I had not got the strength to lift them and the floppy feeling in my heart again so I needed to sit down. I had hoped it would go after a few minutes but no, it was home again to bed but this time with the lovely visions of what was to come instead of pieces of paper on a scale map.
Saturday we had our darling Izzy for the day and this is always a pleasure. She is rarely without a smile and this day was no different. Colin had to go down to our land to meet up with tree surgeons so it was just the two of us. Of course at six years old she dresses and washes herself but it is her honesty about this that always amazes me. I know she must brush her teeth for two minutes each time and at our home she does not have the toothbrush she does at her own home where it switches off after two minutes. Instead we have a timer and in she went to get ready. She came out with the timer in her hand and was bushing her teeth, she could so easily have just come out of the bathroom and said "I did it" but she did'nt, she wanted me to see she had brushed for the correct two minutes needed. There was lots of water splashed around the basin and the floor but she got some paper towels and mopped it all up so "I would not slip on it". Once she was ready her grandad was home and then it was backpacks sorted with flasks of hot chocolate, a biscuit etc, binoculars, bird book and pencils and away to our local Nature Reserve to see if more birds could be ticked off in her book.
Things did not go to plan as when they arrived they were told the bridge was out of action so the detour needed to walk was about one and a half miles each way. Not being deterred with backpack on her back she walked around by the river until they reached the Hide. She was so excited to tick off in her book and Orange Bullfinch so a very happy little girl returned home giggling as she told me how her day had been and laughing as she said how her grandad had tripped over a root and lost half of his crisps!!!!
Today I have not had the time to assess how my day will be. I am not getting despondent though as I know well from a friend who had the same procedure it took a while to feel any improvement at all. After all our lungs have been damaged, we need time to heal. We shall see in time if it helps but improvement or not I will never regret trying, I will not give in to this disease though it may knock me down a few times. I always seem to find the strength to stay and fight another day and will continue to do so.
On the Pulmonary Arterial Hypertension support group page we only had two admins for the group, one here in the UK and one in USA. Though this worked it did make me think about the "what if" aspect of hospital stays etc and then only one to cope with all the admin requited. Paul and I decided we needed another two as there is strength in numbers. I knew of an ideal candidate here in the UK, Parris Kelvey as she is always wanting to help people and I knew she would be great in the roll of admin. I asked her and she happily accepted so we now have three. If there is anybody out there away from the time zone here in the UK who would like to take up the other admin roll we have then please message either myself or Paul.
A very short blog I know but as I am still recovering we are not doing much at all. I still felt you needed an update though as I know you will be wondering and the longer times go with no news then we can always fear the news is bad. This is not bad news, just a "no news to report" blog.
Thank you again for taking the time to read, for actually bothering to click the like button and for the comments.
Go well each and every one of you and I send you much love.
Carole xxx
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