Wednesday, 15 February 2017

Three weeks denervation

Sadly still not a lot to report.  I take heart in remembering that another ph friend took a few weeks to pick up.  I spoke to Alex a few days ago who wanted to know how I was getting on.  He was  surprised that I was not feeling a little bit better but said he is still quietly optimistic.  He did say that the week before when my heart was flopping around all over the place that I should have gone to my local A & E as they could have done something to get my heart back into its natural rhythm.  I did know this and was considering it but as I had a friend who had died having this done I naturally have a reluctance about it. 

I THINK  there may be slight changes for the better.  Definitely that silly cough we all suffer from is not nearly as bad.  This is something I had not given a thought to as we with ph just live with it all the time until we just don't really notice it.  Once Colin pointed it out to me, as did a friend, I was quite shocked really and yes, of course, pleased.  My breathing is still not the best but hey, I do have ph and this was never going to cure us of ph at all. just hopefully reduce some pressures. My stats remain around the same generally at around 100/79 with a heart rate of around 89, I wish I could slow down my heart rate a little lower. This is the rate when I am just sitting but of course it raises up to around 115 when I stand to say get a glass of water,  again not too bad but it takes quite a while for it to drop once I reach this stage.  If I have done anything energetic it raises to around 130 but it does drop swiftly to the  115 stage again. where it remains for quite a long time.  This is when I have tried to do light exercises.  

I do go out, but do not feel I dare go out on my own just yet as when my battery drains it does so totally that I can't even get into bed myself and need help, even to remove my own socks.  This has not happened for the past three days though so again are we on the up, who knows.  I go for my MRI and check up one day next week and will also see Alex so that will be very interesting.  If they are asking for an MRI after just a month then I presume that they hope to see a change, we shall see.  

I find that when I stand still for any length of time then I go grey and need a hand to walk back to the car but his is nothing new either, I was hoping to get rid of this.  

If it does not work was it worth it?  Heck yes it was!!!!!!  I still believe I will improve but if I do not then anything going on in my body will be measured, looked at and it all goes down into research, of course I am pleased I did it.

Colin also reminds me that unlike some people who have immediate responses to drugs and procedures  I do not with one exception.  He reminded me that when I was first diagnosed and was thankfully admitted to Royal Hallamshire  I could not walk more than a few steps.   Colin had been showering me and dressing me as I could not do this for the week before I arrived at the hospital. When I was admitted I was told bed rest and there I stayed for a week, of course going for tests etc but pushed in wheelchairs or beds. Given the iloprost infusions immediately I arrived, well almost, I was shocked, pleasantly when after the said week in bed I was able to get up and walk around!!!!!  This was a great day on my ph journey and though I have never said the pump is a lovely thing to deal with I have always thanked god and my specialists for it as without this I would not be in the place I am in now.

Once my heart settled and I went onto oral meds we again realised it took two to three months for me to react to the new regime so is this going to go down the same road?  We hope so.  

There has only been one time and one drug that I reacted to swiftly apart from the iloprost and that was too a detriment.  It was a drug I trailed that had no name, it was just numbers.  More or less as soon as I began I became very poorly and had no energy at all.  This was so bad that even when I went to my clinic appointments my research nurse asked that I lay on the bed for all of the visit.  I tried, really I did to continue with it and managed three months before my ph doctor pulled me off it.  Oh the joy!!!!!  Since then I have been told that this drug has been discontinued for people with ph, the trial ended way before it was initially hoped to end and some people have said to me that they too suffered the same problems on this drug.

So there we go, I do take time, or my body takes time to get on with new things and so all we do is wait and hope for a different day.  I have noticed I am staying up a little later than I did too, I would often have been in bed in the afternoon but this is not happening much now so onwards and upwards.

I have never been one to moan and groan about my ph preferring to just get on with it as moaning wont get me anywhere.  I feel this philosophy of not feeling sorry for myself and my lot has helped me on this ph journey.  I hope it helps me now I have had the denervation and I see an improvement for myself and the others coming after me.  

The person about to be number 10 { I will not mention names here as I have not asked if I may} has promised me that when in theatre he/she will shout to the staff that number 8 says hello!!  This should raise a smile I hope.  

House news

We went back to one of the kitchen places to check over the design they had done for us and it was rubbish!!!  I know we all like our own way of doing things and I hate huge cupboards etc, preferring to have everything low level if it can be done.  Ours is a large kitchen and once we configured it correctly we had everything we need and no eye level units.  This was really thanks to Colin rather than the designer but she did have the 3D so we could keep changing things around to get the design that works for us. Not sure if we are going with this company but we need three quotes so at the moment it is something we need to do.

Colin is going to our land to begin to clear some of the huge edges etc as soon as his chain saw is back from its service.  I am looking forward to this as it will seem that at last we are moving in the right direction.

Ray of sunshine

We are having Izzy tonight, or as it will be when you read this post, last night.  I cannot post it until tomorrow as there is a secret going on for Valentines day and the other party who I know reads my blogs will see it and the cat will be out of the bag!!  So looking forward to seeing her and for the time we will have telling stories and cuddling.  Her favourite chicken dinner with all the trimmings and plenty of broccoli and carrots and other veggies will be cooked for her.  

Being spoiled

I have received many many cards to wish me better that I have been quite overwhelmed, plus the flowers!!!  I had them in every room and three vases in one room at one time.  People are so kind and I am also enjoying the lovely Molten Brown bathing products that were given to me before my procedure, still some left so I am smelling gorgeous!!   It is nice that we can all do nice things for each other to boost our spirits. 

Follow on

All of this was yesterdays news so I will close with this.  Izzy has decided to become a vegetarian but will eat chicken, tuna and an occasional chicken nugget meal!!  I cannot see this lasting very long as she has school lunches and they will not be in a position to change her meals around.  This has come about after watching programmes on the tv called Planet Earth, she hates to see animals killed and eaten. We had a great night and I took many pictures.  

She woke up being her usual happy smiley little girl and went off to school in a joyous mood.  She had read her book to me the previous evening and we laughed as it was about a boy named Kipper and his antics.  I love to see her enjoying her schoolwork.

I just went into town to buy more oranges, { I eat so many } and could not park outside this particular store as no spaces.  I went up the next road where I managed to park but was worried about walking back to the car with my heavy oranges and nectarines.  I was pleasantly surprised to see that I did it with barely a worry and was pleased that my breathing quickly returned to normal once I sat down.  Dare I believe an upward trend, a lowering of my pressures. ?  we shall see. 

So I leave you to get on with your day  Not sure what the day holds for me but I have told Izzy that as it is such gorgeous weather  I may go and collect her from school on my mobility scooter, such a treat for her!!  Have a lovely day, enjoy  spring like temperatures we are experiencing and stay well.

Thank you again and again for reading my blog, for bothering to click the like button, this means more than you know and for any comments.

Warm love to you all

Carole xxx






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