Thank you for all your feedback on my previous post, I learn something new from everyone I speak to (or hear from) so appreciate others giving their opinions. Health-wise things are going really well, I got a new hair cut that nicely covers the patches of hair that were rubbed thin by lying flat on my back for so long…so finally said goodbye to hospital hair (yay!) – a real confidence booster. (Have just realised talking about hair is not really a health report but that shows how well things are going!)
Concerned about the continuing low readings of nutrients in my blood, and my inability to keep my feed down, the team contemplated more drastic measures such as TPN (where all your nutrients are given directly into the vein). They were reluctant to do this due to the very high infection risk, so started it then stopped it, and began discussing putting a camera into my stomach to investigate further. My tolerance threshold being rather low, I firmly mouthed “no” and subsequently was never sick again. My mother says that this strange exhibition of obstinacy has shown itself once or twice before, where doctors have either written me off, or predicted something I do not like the sound of, at which apparently a look appears on my face and I seem to go in the exact opposite direction; whoever said stubbornness was a bad thing!
On Monday 5th February, the team strode into my room and my doctor announced that I was doing so well on low ventilation support they were going to try me on the bi-pap (which aides breathing by pushing the air in for you but you trigger the breath so gives less support than a ventilator.) I was immediately terrified and asked to be given something to relax me before we tried it. My doctor refused point blank and told me that I would be fine, he would talk me through it. They switched the machines over and told me to just breathe nice deep relaxed breaths. I concentrated on breathing in time with the doctor, and quickly discovered I actually liked this sense of freedom the bi-pap was giving me. The ventilator gave much more controlled breaths and as I used it less and less (I alternated between the ventilator and the bi-pap for some time) I found it claustrophobic and restrictive.
Around this time I also stood for the first time without the tilt table; this was one of the hardest things I had to do. I still had the vac pump on which was constantly sucking and restricting my ribcage, and when I changed to an upright position which I was not accustomed to I thought I couldn’t breathe and would begin to panic. The struggle to push myself up onto my feet, despite having a nurse, a physio and a frame to help me, was tremendous. I cried with frustration at my inability to seemingly do anything and felt that I would never be my normal self again. Later on that week I had progressed to shuffling three very tentative steps, a confidence boost which helped me refocus. I loved the physiotherapy sessions, no matter how hard they got; it felt like I was doing something proactive about my own recovery (plus I could see the results and improvement on a daily basis) and would wait eagerly for the physio to come in and tell me what we were doing that day.
As the days went on, my recovery continued, but mentally I really began to struggle. I started to berate myself as I am used to remaining positive and having a good focus and now was unable to see the light at the end of the tunnel. Whenever I had had a CF related exacerbation, I had generally been able to remain positive as I had a target, a position health wise which I knew well and which I was aiming to return to. Suddenly, the other side of transplant I felt lost; I was in brand new territory now, this was all untried and untested with me so no one knew where I would end up, and I didn’t have confidence in my new lungs and the ability of my body to overcome this never before encountered hurdle.
Determined to try and snap out of this all-time low, I requested to see the psychologist. Luckily she was a fantastic lip reader and we managed to have a good long session discussing many of my fears and worries and talking through some processes to try and tackle them. One thing she told me to do was to start writing things down. This I found terribly cathartic as being unable to talk I had not really been able to share my thoughts in any real way.
Later that week it snowed. My nurse was describing it excitedly when she arrived for the morning shift, and helped manoeuvre me into a more upright position so I could see out of the window. The woodland which my window looked out onto appeared to be decorated with white lace; it looked like a strange fictional world, like a scenic Christmas card, not like hospital grounds. That day was also a dressing change (which happened every other day and which they were still putting me to sleep for) which delayed my mum being allowed in my room. When she was finally let in, she was angry and upset. I got upset too and was annoyed thinking she was overreacting somewhat. I didn’t know at the time she had just spent half an hour in the waiting room with a woman who was then called in to be told her daughter had died. Like all my cheering squad, she constantly pushed her own fears and worries back to make sure she could support me as much as possible during these turbulent weeks.