Anything But Ordinary...

Time for a catch up. The infection I talked about in my other blog got worse and I gave up and went in hospital for IVs. I pushed it and pushed it though and before I knew it a week had passed since my clinic appointment. I was so very worried about the blood results, I'm terrible for over assessing things and worrying. The thought of potentially having to go through the process of seeing kidney doctors and haematology before transplant could be reconsidered was terrifying. Even though my doctor promised he would rush it through if that was the case it would still take months, I knew that. I became very down through worrying, then on the Friday before I was due to call for the blood results on the Monday something arrived in the post. I hadn't ordered anything so I didn't know what it could be. I opened the envelope and there in 2 neat little bags were 2 bracelets, no note and no explanation. Then I realised what they were and my eyes filled with tears. A friend of mine who was awaiting a lung transplant passed away on April 6th after a long battle with cystic fibrosis. Before she died and whilst very unwell she started making bracelets to raise money for the CF trust. I ordered the bracelets March 21st and after not receiving them and then hearing the worst a few days later I presumed she hadn't had time to make them and that was ok, my donation had gone to the CF trust and was now part of her memory, I didn't expect to receive them. Suzy always spoke so warmly of the NHS and the treatment she received from her CF team, she sympathised with my struggles with doctors and my fight for life whilst I was in the hospice. I like to think the bracelets just arriving out of the blue like they did were her way of saying it WILL be ok. Later that day I went into hospital to start IV antibiotics.
On the Monday I phoned the transplant co-ordinators, my co-ordinator answered the phone and she brought up my results on the system. Both blood results came back within normal limits, no further intervention was going to be needed. That was the boost I needed having spent a difficult weekend in hospital. My case was to be discussed at their weekly meeting on Friday and things would go from there.
That week in hospital was not easy and to make thing worse, my NIPPY which I had been relying on almost 24/7 because I had an infection overheated and broke. I should have seen it coming, NIPPY ventilators are old, noisy and recently it had been stated that mine was not fit for it's job anymore, it was providing enough support. After a few hours of being off it I felt the affects my carbon dioxide starting to raise. The doctors began to worry and asked the physiotherapists to see me to try and help me clear my lungs. The consultant physio who I know well came to see me. She knows the situation and sorted me out with a hospital non-invasive ventilator (NIV), lucky for me the NIV service had been set up just a week ago, if I wasn't able to have NIV on the ward eventually I would have had to have gone to the high dependency unit. The NIV I was set up with was called VPAP (click for explanation!). It was so much better than my NIPPY and helped a great deal. My consultant contacted the regional NIV centre (which also happens to be my transplant hospital) to ask them to sort me out with a new NIV.

On VPAP with my quilt

Whilst all this was happening I received a very special gift from a company called quilts for adults USA. They had been working on my quilt for months and it arrived whilst I was in hospital I snuggled up to the quilt and imagined it as a big hug! It includes cross stitched squares of my favourite things.
A week or so later I was fit enough to travel to chest clinic and meet the NIV team, I have met the doctor before, under different circumstances which I'm not going to go into here but he had a look at my blood gases and we had a chat. I had been off the VPAP for 3 hrs and my carbon dioxide levels had already risen. He was happy to set me up with one of their VPAP machines, he adjusted the settings a little and asked me to do overnight pulse oximetery to check the settings were ok. I was so relieved, VPAP,is smaller, quieter, portable and now I have an expert NIV team on my doorstep, I couldn't be more grateful. I returned to the ward at my local hospital with the VPAP, decided seen as my IVs had stopped and I was able to use the VPAP I had been using on the ward at home I was ok to go, I ok'ed this with my consultant who was happy. I called the co-ordinators to let them know I was home and asked for an update. My consultant had spoken with the surgeons, their happy for things to go ahead, pleased with the blood results, don't see the need for a total lung capacity and they're now waiting on my consultants’ referral. Once that is written I'll go and see the surgical director and hopefully be offered a place on the list. For the moment I'm on strict rest due to a couple of lung bleeds, will update again soon.