THE phone call

THE phone call

Well today I knew as soon as my phone rang and it was an unknown number that it would be my trial co-ordinator Katy.  She asked if I could attend next Wednesday at 9.00 for a very full screening appointment, MRI included and then a talk with Alex, the guy who carries out the denervation.  Of course I agreed and the day was free except for an eye appointment to change and ask Danielle to collect Izzy from school, (generally our pleasure on Tuesdays and Wednesdays) I keep thinking well I WILL if I pass screening agree to this procedure, then I hear something about it and think well no I won't, I will have the line.  The truth is I will probably change my mind time and  time again until the final say.  Anyway the talk with him should be interesting and I will have many questions to ask.  

December 4th was our wedding anniversary. We have made it to 18 years.  When we married after just four months, we were also engaged after thee weeks, people thought it could never last.  How wrong were they,  We have had our ups and downs but we are still strong together.  My hubby is my rock and an amazing stepdad to Haydn and Danielle and the best grandad ever.  

Both our lives changed dramatically after being diagnosed with ph and it is such a scary time on all fronts.  We had to make a change in where we lived, our lifestyle due  to my limitations and leave friends behind, though of course we are all still in touch.  The fears with my health were huge, such a shock and could we ride this roller coaster and stay firm together.  Six years on from diagnosis we are here, still happy and still "getting on" with this darned pulmonary hypertension. 

We decided to go out for lunch to celebrate at a very nice restaurant we frequent and we were fortunate to get a table.  We rarely book much in advance as we never know if we will be able to make it due to "off" days but make it we  did. Not a drinker in the alcoholic sense I did succumb to a lovely glass of mulled cider, it was absolutely delicious.  I love that it is often available at this time of the year.  I always have this treat if we are in Howarth at Christmas time as it is served in the local pub and as I drink it I always try to go back in time in my head  to when Branwell, the only boy in the Bronte family would frequent this very pub and drink too much and take his drugs. anyway I digress,  back to our meal.   I wasn't too impressed with the food  which is unusual for this lovely restaurant so we decided Sunday was just a "bums on seats day" for them. I only got a sniff when I pointed something out to the waitress that was not as I asked for with my meal.  We will return but never on a Sunday.  Just before we left I had the feeling that overwhelms me when I am going off.  Colin took one look at my face and could see immediately what was happening to me so we got the bill and  left,  I hate this about ph.  You can never know if you will see the whole experience through or will ph raise its very ugly head.  My legs were like jelly and I was hugging the wall on the way out.  Colin laughed, in a nice way, and said that the other diners would be convinced I was drunk and yes, he was right they would have absolutely thought that, I would too if I saw somebody walking as I do when I have gone "off" and so it was home and pyjamas and a rest.

Monday

 I went for an early doors appointment to my local warfarin clinic on what I assumed was my allotted day.  Blood taken the nurse said "you do know you have come a week early don't you?"  Fool that I am I didn't,  I suppose that as I am mostly at this clinic weekly I just never gave it a thought.  As it happens I think it will be fortuitous as my level of INR  was rising  above what they like, though only slightly but I still think they will reduce my weekend warfarin a little.  I have learnt to attend this clinic at around  8.20 as there are rarely more than a couple of people in front of me, sometimes none at all. This is great though I do miss listening in to other people's conversations as  sometimes they can be very interesting!  

On the way home I stopped to look at the old nurses accommodation they are now converting into houses.  When I pass it always brings back memories of many years ago when I nursed and lived in this home.  I can't believe it was almost fifty years ago I shared a room with three other nurses.  How time flies. I always look up and see the room I shared, strange to think somebody will be living here.  I wonder if they will ever think about the ones that lived there before them, listen for the ghosts of the past, wonder about their hopes and dreams and wondering in which direction their lives have taken them.  Gosh how time flies, I could never have known then how my life would unfold to where I am today, some good and some bad.  

Arrived home to a lovely breakfast of scrambled eggs on toast.  Colin does the best eggs, soft and lovely and just as we finished eating the phone rang,  It was my daughter to say she had taken Izzy to school and then went on to work. She then received a phone call to say the heating  had broken in all the school so could Izzy be collected. This is a bonus as it means more time together, though we will do some school work, very important when children miss a day and are well enough to be taught.  I have no day clothes for her here though so she will have two choices, remain in her uniform or put nice comfy pyjamas on, her choice.  So we will see how the day unfolds.  

8 hours later, the day went well. Two hours of teaching and then much playtime with grandad, two meals eaten and a bath...... home time!  Now we can catch up with the things we need to get on with.  Had a lovely time with her, we shall see if the heating is back on tomorrow at school.

Is it only men? 

I can't believe women do this, it surely must just  be men!  Why do they leave the last dregs in the bottom of the twiglet  bag, biscuit  tin or sweet bag!  If it were me I would leave the empty bag in sight so that the item could be put on the shopping list,  Once again I went in the cupboard for something to find a teaspoon full of crumbs at the bottom of the twiglet  bag!   It makes no sense to me at all, I wish he would stop this habit, annoying for sure.

Brain fog.

I went to a funeral  last Friday (well I went to the church) only to discover that I was a week early.  Strange that this week I was a week early for bloods. So angry with myself as I had got ready when really I was so exhausted .  Now I will do it all again as I will attend this Friday, correct day, and pay my respects to a very elderly lovely neighbour.  I know the church will be packed so I will arrive early to make sure of a seat.  I hate that my brain does not work right and yes, of course I know I should check my diary but the truth is ......... I forget to look at it!  I know my ph friends will totally get how frustrating it all is.

  I hope I remember on Thursday that the garage is taking my car over to Leeds for yet another repair on a faulty valve that speaks to the computer,  Would hate to be out when they come for it. I could do with a talking diary that tells me as soon as I wake up what is on the cards for the day without me having to remember to turn it on. 

Telling family and friends of diagnosis

I have seen a post by one of the newly diagnoses ph patients asking how to tell family and friends of their diagnosis and even if they SHOULD tell them.   

This is a tough one as ph is so difficult to describe just how bad we feel when we look so good on the outside.  For me it was important that everyone I knew or came into contact with knew just what I was dealing with,  I ran off some of the relevant details of pulmonary hypertension, the ones describing it  in more layman terms  were the best, along with my doctors letter stating the seriousness of the illness and my meds.  I would then tell my family and friends of my disease and then show them the articles I had run off that were pertinent to me.  After saying all of this it did take a year to get this far as I was way too poorly initially to do very much about it and had to leave it to Colin to explain as best as he could this truly terrible devastating illness.  I think I was helped by the fact that I also had a Hickman line,  When they saw and  they could actually hear the pump zipping out the meds every two minutes, it was easier for them to understand the seriousness of this condition, that this contraption connected to you 24/7 is your lifeline, without it you undoubtably WILL die sooner rather than later it did help the process. 

Just a pic

I read somewhere that posts with a picture on are read more than those without so I shall add this picture as I certainly like my blog being read by you all.  It is just a pic of my darling Izzy.  She is staying overnight with us on Monday, I am just pleased to have her here, to know we will be snuggled up in bed whilst I make up stories for her as I used to do with mine when they were young.  

Well time to rise and shine, a new day has dawned and things to do people to see and all of that.  Thank you all for reading, again for the likes and the shares.  I just LOVE the comments and I will write next Thursday after we have talked to the specialist about the denervation telling you where I am next headed on this ph journey, one I would never have believed I would still be in a position to be talking about over six years later.  Though life is hard with ph it is still good.  So many new discoveries in the ph world on the horizon to look forward to.

Warm love to you all and hope your day is a good one. 

Carole xxx