A Busy Week of Hospitals April 2012

A host of golden daffodils!

Easter and my birthday have come and gone and all building work finished on the house. We have managed to get back to the Lake District, but were delayed a few days as my sickness returned with a vengeance. Once it felt safe to travel, we did, but drug side effects took their toll again, while we were out and about. I can tell you, it is not funny being caught short in a forty minute queue for the Windemere Ferry, unfortunately this was the nearest place with a loo, when the terrible nausea started. Two ferries later and a lot of funny looks by waiting passengers, I got Rob to reverse out of the queue and get me to Hawkshead quickly, where there are more good public loos, but not in front of a bored audience looking for excitement while they sit in a ferry queue!

Newby Bridge, Nr Windermere

Forty minutes later, we decided to make a run for it and try and get back to the cottage. Safely back at the cottage and I still don't  feel that good. We start humming and aahhing about whether we should head home, I have had some bleeding with all of this too. My INR had tested high at my last warfarin clinic and a small alarm bell was going off in the back of my head. We decided to sleep on it and in the morning and after a good sleep everything was much better, no more sickness and more importantly no more bleeding. We had an easy day and didn't venture very far and only somewhere that has good toilet facilities! Planning a day out around toilets isn't unusual, I remember our little break in Norfolk recently and because of my diuretics, we went everywhere via Cromer as our first stop, where we had found a little car park with loos! The trouble with all of this is that it can make you anxious and lose confidence to go out. We had a few more restful and uneventful days and then returned home.

View from the Windermere Ferry

A week of hospital visits were looming, first stop a review at Papworth by the transplant team and then a series of visits to Addenbrookes for patch testing at the Dermatology Clinic to try and get to the bottom of the ongoing 'dressing allergy saga' as I was now calling it. In the middle of this I had another warfarin clinic to check my INR range.

The visit to the Transplant team went smoothly, weighing, measuring, blood tests, CT scan and then an update with a doctor. The CT scan was part of the team's routine check to get accurate measurements of my chest. The 'Domino Transplant' wasn't mentioned, so I asked about it again and whether it may have been discussed. The co- ordinator managed to check with the consultant, who informed us that it would not be a way forward for me. I was disappointed at this news, but at the end of the day, the thing I should be most concerned about is that I get a donor and that my own transplant goes well. I reasoned it was probably being a bit greedy to think I might get to save someone else's life in the process, but it would have been a remarkable thing.......I would have liked to do something remarkable amongst all of this if I could. The doctor also thoroughly checked my stomach, because of all the tummy upsets I was having and because I had gained a few pounds and she needed to check it wasn't fluid retention. She felt all was well, so that gave me some peace of mind.  

The following day, I had my INR checked and it was stable again and back in range, again more peace of mind  after recent events.

During this period, we had the sad news of two members of the PH community losing their battle to PH. One lady, I had never met, but I had spoken to her on the PHA forum during those first few months of my diagnosis and she had been helpful and encouraging towards me. The other lady, I had met through the Papworth PH Matters support group and she had sat with Rob and I and made us welcome on our first visit there. She was younger than me and seemed lively and bubbly and appeared quite well. I do not know the circumstances of her PH, but it was shocking to hear of her death and how sudden it had been. It really brought it home to me once more how this disease is relentless and cruel and can strike in different ways.

Life is fragile for everyone, but with PH it sometimes feels like you are walking round with a bomb, which can go off with a blast when it feels like it or it may go ever so slowly, fizzing and then stopping, fizzing and then stopping until one day it just stops. It can be very scary and in black moments I wonder if it will be a 'blast' or a 'fizz and then stop' when it gets me and I hope against all hope that it wont be either and my transplant will come and save the day. In the meantime life has to be enjoyed to its fullest and the only way forward is to think positive.

The series of visits to Addenbrooke's went very well, I was seen fairly promptly with not too much waiting around, which I had been dreading.  I was even seen ten minutes early on one visit. They found several things that I'm allergic to - some substances used in making perfume, nickel, a substance used in battery making and used as a preservative in various products and more importantly a substance used in rubber production, which may be contained in the adhesives in various dressings. They reassured me that there was no major reaction happening to any of them, which may put me in danger, they are just lower grade contact allergies.

The Viaduct at Arnside  

It still does not really sort out the problem of which dressings are safe to use on an ongoing basis to cover my Hickman Line puncture site, as I doubt that a whole breakdown of products used in making the dressings can be obtained. The doctor also agreed with my common sense view that it is not really a natural thing to have a dressing permanently stuck on your chest and that it is no surprise that the skin underneath may become sensitive, especially as I am sensitive to various products. I will just have to hope and pray that the dressing I am using now continues to behave itself until I can get my transplant.