I feel I have been complaining for a while about generally not feeling well. Broken down into its functional parts, I suppose, I am extremely breathless doing day to day stuff like going to the loo, showering and getting dressed. I cannot actually go out in public and walk reasonable and necessary distances without stopping due to breathlessness. I’m breathless talking after arriving anywhere. I anticipate results of my nocturnal oximeter testing any day now and the ominous silence from the sleep clinic fills me with dread. Based on my symptoms, it was concluded on my last PH clinic visit, that my PH is worsening and dual therapy is not, and will not, remain adequate for me much longer. However, in order to qualify for third line oral therapy, I will have to initiate contact with the organ transplant team. That’s right, major surgery and a transplant potentially to get access to oral therapy not yet approved on the NHS. A lot to think about. In other news, my blood sugar and peak flow remain good, andmy endometrioma has been relatively painless, so I am managing those chronic illnesses well.
My OCD is better but I have bouts of anxiety and depression triggered by periods of loneliness when my husband gets busy and I’m left to my own (dysfunctional) devices. I feel happiness on a daily basis but the feeling may only be fleeting. On the topic of OCD, it was brought to the attention of my group that we are expected to stay in therapy for two years and then leave. Oddly in the two and a half years I’ve been going no one has functionally left; we had one member drop out in my first six months.
So in summary November 2016 kicks off with referral to my local organ transplant team, hoping for third line oral therapy for my PH and planning an exit from my psychodynamic group therapy. As shocking as the concept was in group to consider leaving, I feel unexpectedly accepting about it. I am motivated to do something else an afternoon a week out of my current comfort zone and am exploring the options. I find myself running out of excuses as to why I can’t register for a module on a study course which would be intellectually challenging and good for my mental well being. I live ten minutes from Birmingham University and online access is in my face, figuratively speaking.
The transplant issue is a tricky one for me. I don’t feel allocating me a new organ is the best use of resources but the assessment isn’t my call.I lost my mother when she was sixty-two and at forty-two, with my current health challenges, I cannot see myself out living her. I conclude this with a modicum of emotional detachment, it’s just statistics. Let’s just say if it was up to me I wouldn’t consider myself a viable candidate, but if I don’t positively comply with heroic measures to keep me going I’m letting down my husband and the clinical team who have been working with me since my PH diagnosis in 2012. It’s premature to think about living with a new organ, but this time last week, I was far from thinking about leaving group therapy, which is an inevitability that has silently crept up on all members of group I see weekly.
Inevitable changes begin with a move in venue for group and a practical requirement for me to be independently mobile to get to appointments solo. I currently have had a set of wheels at my disposal for a while now, removing yet another barrier to remain cocooned. Again unexpectedly and oddly I feel quietly enthused about being mobile and battling rush hour traffic on occasion. Where was this optimism a decade ago when I needed it to keep my job?