Denervation news - the results are in for this stage

Shattered but pleased

I can't  believe how exhausted I feel today after my hospital follow up for the denervation.  I think it must have been all the pent up thoughts and questions etc going around in my head.

Anyway here goes........  the news is good, not amazing but good,  I will take that.  My walk test was really good which astonished them so much they checked and re checked the measures on the floor.  Now not to say I could do this all the time, remember I was high on adrenalin but nonetheless a pleasing result.  

After lunch we were taken to the day care ward prior to my right heart cath and given a bed, oh the joy of getting my feet up at last but it was not long before I was on the move again.   All proceeded very quickly and efficiently as it seemed in no time I was taken up to the room next to the theatre.  Here I had a wonderful surprise.   Dan, the nurse who was with me throughout my denervation and who also took care of me for the 4 hours afterwards when I was waiting to be stable enough to return to the ward walked in.  Oh the joy of being enveloped in his arms and be given a huge squeeze.  He said he had seen my name on the board and wanted to try to get into theatre with me.   This proved not to be possible due to an emergency they were expecting but hey, so lovely to see him again after the lovely support he gave me before.  

Onwards then to the theatre.  The right heart cath holds no fears for me so no sedation was necessary. What a lovely lot they were in the theatre too.  All very pleasant and so well versed in their own roll.  Alex covered me up but left a little of my face exposed and on we went.  Now if I expected this to take only around 20 minutes I was so wrong.  Being part of research they needed a lot more than the normal pressures, wedges etc.  Once again I wore the mask after the initial pressure and wedges were taken and breathed in the nitric oxide for ten minutes and then more readings were taken. 

One hour and twenty minutes after being taken off the ward I was back in recovery.  This time I was greeted again by Dan who was staying with me to do the blood pressures necessary etc.   Alex came in and took all my notes so he could compare them to last time.  Dan, well versed in procedures of the a similar nature very kindly got me a box of tissues ready should they be needed when the results came in.  I did not have long to wait before Alex returned and told me that my pressures had dropped by 6, my heart was coping ok with the pressures though no real change there.  Alex was also pleased and relieved that nothing done concerning the denervation had had a detrimental effect on my ph. or my pulmonary artery.  We need to remember that this is all research and a learning curve so again a good result.  

Pushed back to the ward I was able to get off the trolley and walk to my bed.  No pat slide needed this time as there was after the denervation.  Colin had been concerned as I had been gone by this time for two hours.  We had then to wait to see Alex who was at that time doing another denervation patients' right heart cath.  At six o clock he came to see us and explained to Colin the results of the tests and we were allowed to go home.  We will return again in four moths time but no right heart cath needed, the last one will be at the twelve month follow up so who knows, my pressures may continue to drop a little.  I know too they may rise so I have no expectations, just pleased this step of the research is over and now on to living with ph and coping from day to day.

Talks

Today we are seeing the builder we gave all our plans to to discuss his prices etc for our new house.  I am very interested in this so I am fortunate enough that though still tired it is not such a day where I need to stay in bed.  We both have many questions buzzing around in our heads so need to keep our wits about us as we go through this very crucial stage. 

Just the sweetest thing these last few days

As you know I love to trundle on our canal and river banks, especially at this time of year when there is so much happening.  I had watched with interest a family of Canadian Geese on a certain stretch of the canal.  I saw their three goslings following the mom as they went gliding effortlessly by.  

Well on Wednesday Colin went with me and we saw these same goslings nestled under the wings of their mommy on the bank.  We both stopped and took pictures and as we looked around we saw yet another group of goslings, though slightly older than the first. They were so cute we snapped away at them and were happy to see that they had no concerns that we were so close.  

It is days like this that I am so extremely thankful we have the researchers, the doctors and the nursing staff that takes care of me.  I know without a doubt that their care watching over me  watching over me the sight of these goslings would not have been afforded to me.  I would have been gone, lost to all of this.  I love nature and the smell of the fresh air, the beauty that surrounds us and was once again so grateful to still be here to see such beautiful things. 

Our weekend

We have the had as you know the plans for our new home but no building is yet going on.  We cannot leave the site to  overgrow with grass as this would be so disrespectful to those that drive past.  This weekend will be spent mowing the grass and repairing a gate that was damaged when all the tree felling went on.  No easy job for Colin as there is a lot of digging to be done and a new post to concrete in position. 

Stacie Pridden

Most of us on here will know our lovely Stacie, and  will have followed her journey through her heart and lung transplant and seen the remarkable recovery she made.  We will then have gone on to see how she then began to deteriorate to the extent that now she has been told there s nothing to be done, no magic cure, no second chance of a transplant.  If we follow her blog "LifeisWorthTheFight" we will also see how she is still enjoying life to the best of her ability.  In order to do this she has the help of course of her family and friends but she also has her wonderful partner Mark.   

https://spark.adobe.com/page/sf5KW5mhaIZVT/ 

In order to do even more in the time left to her she has set up a go fund me page.  Now I would not normally mention them in my blog but as she is so remarkable coping with all of this I want to give you the opportunity if you visit her page to donate a small amount of money if you wish,  She is hoping to raise enough to buy one of the wheelchairs that cope with harder terrain than the norm so that she can be pushed up mountain sides, on the sands and rocky beaches etc.  When the time  comes she no longer needs this it will be handed over to another person to benefit from his wonderful gift.

Please read this blog. It will have you in tears so have your hankies ready and consider if you can think about helping her reach her goal.  

Well all for now but I must finish with saying a huge thank you for all your well wishes and support.  I really can't begin to comprehend how all those not  in a support group manage to cope without all the back up we have, all our brothers and sisters with ph who really get "how we feel". I am always thankful too to my other friends who are supportive when they themselves do not have ph.  They still offer their support and love and I feel so humbled.  

Warm love to each and every one of you

Carole xxxx