In all honesty it has not been the best week. Standing for any length of time just isn't for me right now, the fear of fainting looms large. I feel safe in my chair though so spend too much time just sitting, all I want now is the knitting needles and yarn. I won't let it beat me though, I know between my A Team and Colin and me we can beat this, I know we will find the answer and change/adjust accordingly. The problem now is how long it will take to get the 24 hour monitor. I am heading for the doctors tomorrow morning so I shall ask if they have received the letter from Sheffield (I received mine) and if they are moving on the request for the said monitor. We shall see.
The pain management meeting was just brilliant. I didn't expect anything could be done for my neck as I had been told this by two different specialists as the operation I need requires anaesthetic so just accepted this and hoped he could tell me some exercises to help when my neck goes into spasms. How wrong was I. A brilliant doctor saw me and he is an anaesthetist really so why he was taking the clinic I have no idea but am pleased he was. He got up all my x rays and MRIs and was shocked when he saw just how much "real lung" is left now, not that much I can tell you. He was also very shocked at just how much I can do, well generally, just a blip at the moment. He looked at my neck MRI and said he could inject it with something that hopefully will take away much of the pain. He understands I can't take medicines containing opiates and feels this would be the best way for me. I left almost in tears at the thought of cutting out a lot of the pain and a prescription for the heparin he wishes me to have five days before the procedure. I will have to wait three or four months. Pity it couldn't be sooner as it would be great to have this over and done with before we go on holiday but I can't complain. I would ask for a cancellation as we live around the corner but of course I need to get my INR down to 1 before he will touch my neck so that doesn't work either. This is something to be looking forward to so a great result. Severe spondalitus of the neck is certainly no joke.
Colonoscopy I have these yearly as I am what is known as a polyps farmer. Sadly they always find a lot and most of the are of the type that MAY turn cancerous later so better removed than giving them a chance to grow, I have no problems at all with the procedure, don't take any form of sedation and have a giggle with the staff in the room. This time they didn't quite beat my last score of 9 having to leave it at 8 this year. The problems I had with the whole things was having to go 32 hours with NO FOOD. I take many medicines to try to control my ph and what with all these rattling around in me and no food to help to absorb anything by the time I was on the table I just wanted to eat a huge steak or a massive chicken. I received my two slices of toast and milk after the procedure and very grateful I was for it too. Home then to my bed I and I was certainly ready for it at this time.
Drains and pesky waste pipes, ugh!!!!!!
Danielle had been having trouble with her drains and sewage actually spewing out so she rightly got in touch with an expert who after lots of taking of videos and rodding etc declared the drain had collapsed. On then to the insurance company as she is insured for such an emergency. One would have thought the insurance company would get on with it rather swiftly due to it being a health hazard but no, they needed to send their own guy to look and it would take around five days before he could do it. We were all dreaming of the scenario of yet another five days with no drainage when it was decided Danielle and Izzy would move over to her boyfriends Chris's house. The insurance company went in to the drains though an entirely different entrance and declared that the reason it was blocked is that they could see concrete down the drain. Rubbish but non the less it necessitated Colin and Dave a builder both working hard on Saturday digging up the top of the drive and seeing just where this supposed concrete was. There wasn't any and the blockage is further down the drain where we had been told before. Colin and Dave put a new manhole cover in to make access easier for the insurance company and now they need to come back to look again.
Whilst all this was going on I was sitting or laying in the room and getting to know the delightful Harrison a little better. They had all to come back to Danielle's and beggar the drains as Danielle was working and Chris lives too far away to just jump in the car when needed re all this fiasco. It was lovely then to be with Izzy, without her beloved grandad, as he was busy outside, so it meant I got a look in. Harrison is a very lovely little three year old and by the end of the day he was actually sitting next to me with his head on my shoulder while Izzy was on the other and we were trying to solve a puzzle. A delightful day was had by us all inside the house as I was getting the children to try to walk with books on their heads and play football with small balls and getting them caught in the bottom of the couch meant a goal and oh all sorts of silly things. For me the day was brilliant. Not so much for Colin who had worked all day and was absolutely filthy. It is not everyone who can do this type of job but he just gets stuck in. Home then for a lovely long soak for him then and a much needed rest before he begins work on it again on Monday putting back all the top of the drive!
Away days again
Colin is hoping to go away again next Thursday in the motor home. I prefer to stay here and that gives him all the time he needs to take his photographs, walk and bike etc without worrying about getting back to the motor home for me. My sister kindly said I could go and stay with her whilst he is gone. Now she lives in a beautiful cottage in the delightful village of Heptonstall, the scene of many tv dramas etc. I have to say no though as she has stairs, stairs and I have been alien to each other for many a year so no, thank you for the kind offer Gill but here I shall stay, surrounded by good friends, near my local hospital and less than two hours away for Colin to drive home should an emergency occur.
How pulmonary hypertension develops
For my ph friends this may be of interest or if not show it to your friends and family to give them some understanding about ph. Just click on the link.
I shall finish now as Danielle and Chris along with the children are in the park opposite and about to come back here for a short while. So looking forward to seeing them all again, a lovely family the four of them make. I feel blessed.
Once again thank you for taking the time to read and for taking the time to click like or sharing.
Much love to each and every one of you
Carole xxxxxxxx
No comments:
Post a Comment