Jubilation!!!!! Yes it is on.

In all honesty I was nervous yesterday when we were on our way to Sheffield to meet up with Alex, the man who would, if I passed the rigorous criteria,  be doing the denervation.  I had already met him at a conference we had attended and was so pleased that I had.  We both felt very comfortable talking to him.  He explained that he had read my notes very thoroughly, discussed me and my deterioration with David, my specialist ph doctor and they had both agreed that if the tests carried out whilst I was there were within the markers needed for the denervation were in the boundaries then it was ON!  

Well wouldn't you know that the MRI machine was broken, I needed the MRI before the operation was carried out.  Alex though had checked back to my many many MRIs and with that he could see by the latest one done only about five weeks ago that I would fit well into the band.  That said he has agreed that he will still carry one out on the day of my op in the morning and then do the op in the afternoon.  I asked how many he would do and he said that as I was tiny!!!!!!!  he would do less than the 8 that had been done for one person on the trial.  I said I was by no means tiny, standing at 5 feet 4 and a half inches and weighing in at 9 stone 8 pounds.  He explained that he meant that our lungs obviously  vary from person to person so my lungs would not be as big as some that would have all 8 of them done.  His explanation of the op was very precise and specific and I liked that he told me why I would be having this in the Northern as they have such a great cardiac team that if needed, though he did not foresee any problems all the best specialists  would be on hand.  I would then stay the night, Alex would too in the emergency call room just in case.  All being well I will return home the following day.

I am being sent a watch, something like a fitbit that monitors all I do, all the readings that they need so they can see exactly how my levels lower from time to time in a day.  I will wear this watch for two weeks, send it back to be “processed” and then have it returned and so on and so on.  I had been so scared that I would be deemed too well for this operation so the relief when he said I was just what they needed for this op was great.  

He did explain that they do not expect our levels to drop immediately, even if at all though they are hopeful.  Rather it will take around 4 to 6 months to see a marked improvement and they HAVE seen this in others.  We agreed that I would return on the 24th January to have this done and believe me my relief is huge, I feel like I have been given an amazing gift.  I will of course keep you updated when there is anything to add on to this.

We touched on other studies and would I be excluded due to having this done and the answer was an emphatic NO i would be able to trial after 12 months.  Selexipag reared its head again and I was assured that WHEN and he did say when and not IF we get it approved here then my having this op would not put up walls to receiving this medicine so it seems a win win situation.   It will either work or it wont but we will be moving ahead with the research needed to see if his can be offered to their other PAH patients or not.  Barbara Cherry was the first to have it in the UK, there were two before her in Belgium so we are now 10 months into this op being carried out and the signs, so far, though very early days, are good.

Colin rang my daughter last night as she really did not want me to have this op done just yet.  Her relief when all was explained to her was great and she says she feels a lot easier now she had this talk with Colin.  It did worry me that she had been so concerned so it is nice to have eased this for her.  

Meeting up with friends

I always love to met with my friends when I get to Sheffield.  The nurses are almost like family as they take such good care of us and we all know them so well.  I generally get a cuddle or two from them and then on to the individual wards to see my ph friends.  Parris was looking rather glum though I did get a huge smile when I walked in.  Poor love is so fed up and just wants to be home.  I believe she will be allowed home on the 23d  I did not get much time with anyone as a taxi had been booked to bring me home.I managed to catch a few words with Christine Fowlie for the first time face to face.  This was so lovely and it changes how we feel about them on the facebook page, we now feel we know them better so this was so nice.  Patricia Nelson always seems to be in when I am so again a very swift hello, goodbye but it was lovely to see her nevertheless. I do hope we all meet up at the conference in May, always a delightful time 

What is on your child’s Christmas list to Santa?

Izzy loves Club chocolate orange wafer biscuit and when she was given one after her meal the other day she whispered to me “grandma I just LOVE these and have put them on my list to Santa.”  She also told me she had put on that she wanted a bag of mini cheddars!  Well nothing too onerous there then.  The RSPB binoculars and the bird book and seed ordered from the RSPB website where Izzy is a member has arrived.  Sadly the bird table has not yet so we do hope it arrives in time.  She will get much pleasure looking onto the garden with her own  binoculars and recognising the birds in the book she has.  We always encourage her to enjoy wildlife and she does.  She jumps for joy when we show her documentaries about whales, frogs, elephants etc.  We just know this is a wonderful gift that will bring her much joy and teach her so much.  

Bizarre!

Just heard our fabulous cleaner talking to Colin in the kitchen and she said “do you think human skin would make good leather”!!!!!  If we ever disappear maybe you should be looking for us in the leather bound new editions.  Will really need to ask her in a while why she asked such a bizarre question.

Remember

The first person I wanted to ring when  arrived home yesterday with the news about my future op was my mom, I was so excited to tell her the news.  Sadly she is no longer with us, nor is my dad and my elder brother Antony.  Please please think about others, some we have never known who will no longer be around to share in the festivities of the season.  

I sponsor a child who lives abroad, it doesn't cost much, £15 a month and also send money to Great Ormond Street children hospital monthly too but I also try to send a little to ease the suffering of others at this time of the year, as well as filling my boxes with the much needed food or toiletries they badly need.  Please spare a thought for them whilst you are busy getting all in place for a very festive season.  A little goes a long way and if we can help in any way then how lovely it is.  It may be that you just pop a packet of biscuits in the big tubs they have after check out at the supermarket.  Just a small thing makes a huge difference.

Love this post

This so applies to most moms and dads I suspect.  It is just what we want and need to say to our children no matter how old they are.  It is a mothers prayer I believe.  I have no idea who wrote it originally, it appears to have been passed around, and rightly so.  Exactly what I need to say to my  two: -

My children each year ask me the same question. After thinking about it, I decided I'd give them my real answer:

What do I want for Christmas? I want you. I want you to keep coming around, I want you to bring your kids around, I want you to ask me questions, ask my advice, tell me your problems, ask for my opinion, ask for my help. I want you to come over and rant about your problems, rant about life, whatever. Tell me about your job, your worries, your spouse, your kids, your fur babies. I want you to continue sharing your life with me. Come over and laugh with me, or laugh at me, I don't care. Hearing you laugh is music to me.

I spent the better part of my life raising you the best way I knew how, and I'm not bragging, but I did a pretty darn good job. Now, give me time to sit back and admire my work, I'm pretty proud of it.

Raid my refrigerator, help yourself, I really don't mind. In fact, I wouldn't want it any other way.

I want you to spend your money making a better life for you and your family, I have the things I need. I want to see you happy and healthy. When you ask me what I want for Christmas, I say "nothing" because you've already been giving me my gift all year. I want you.

If you feel the same way, feel free to copy and paste... I did!

Thank you Karen Reams who found it and shared it.  

Nativity

They certainly are nothing like the ones we used to have when my children were small.  Izzy just had hers and was a cowgirl!!!!!  Se did make a very pretty one though and her singing and her actions were very good, very well rehearsed. I was just in her eye view so she sang to me the whole time, she makes me very proud. 

Her carpet is being laid on Tuesday which means her bed can then go up.  Her mommy has bought her a desk to do her homework on and this room will be really pretty, girly and so very lovely when finished,  I am so excited for her. 

Well it is a busy time of the year so I wont hold you up any longer.  I hope you manage to stay stable those of you with ph and for the ones that do not have ph then I hope that all goes well for you in the next few days as everyone seems to go into overdrive to get things done ready for the festivities ahead.

Warm love to you all, again thank you for the likes, the shares and the comments.  It means so much to me honestly.  

Carole xxx