I was told when I was diagnosed with Pulmonary Hypertension that I may feel very tired, as tiredness is a symptom of the illness, but I didn’t feel I had any issues other than shortness of breath and chest pain.
However, four years on, I have to admit I do feel tired and worn out by the slightest activity. My exercise tolerance is the worst it has ever been and I am still waiting for night time oxygen therapy now that three out of four Respiratory Consultants feel it is necessary.
What frightens me are the twinges of chest pain I get at night whilst resting. Am I imagining it? I have no intention of pursuing any avenue of investigation related to this chest pain at rest and if there is an issue I’m sure the cardiac MRI I am booked to have within the next month will pick it up.
What makes this illness hard to deal with at this time for me, is the constant doubts I have about my own symptoms and a fair dose of paranoia I feel as a (retired hurt) medic. For example, I am convinced a few of my fingers appear to be clubbing. This is not as fun as it sounds. Clubbing is a sign seen in chronic respiratory disease and I swear I see a hint of cyanosis in my nail beds from time to time.
I have to say to myself, so I do have clubbing or cyanosis, so what? The idea is to keep being able to do the things you want to and leave the worrying about symptoms and signs to the medics. But, you see I cannot do that. If I left it to the medics I would not be getting CPAP or oxygen. My day time somnolence seems to be a significant symptom to me of low oxygen saturations of around 87%, but without seeing the results of the sleep study, not all the respiratory consultants I see accept this. The rules and margins of error in judgements is very different when you’re the patient.
If there is the slightest risk that periodic nocturnal hypoxia may worsen my pulmonary hypertension then I want to minimise that risk. If the studies in sleep disorders and diabetes show a more positive outcome for patients on CPAP I want to be in that group.
I’m pretty sure I don’t want to live forever and I am not so concerned about my length of life as I am concerned about my quality of life, which is probably the worst it has been since my pulmonary hypertension diagnosis.
I find myself falling asleep whilst reading, which is not good news for a book blogger. I find myself randomly dizzy and always severely short of breath on the move. I have a short fuse because everything seems like such a tremendous effort and my energy reserves flag at the best of times.
Despite my many complaints and whinges, I don’t feel too down about stuff and I am willing to go with the flow most of the time, but I can’t help but feel this is a significant irreversible worsening of a chronic illness that I know will be more physically limiting in future, in which case I must get on and get stuff done before the opportunity slips away.