Choices: When the Experts Do Not Agree

As unwell as I have been feeling over the Summer of this year, things came to a head when I went for a routine outpatient visit to The Royal Hallamshire. I honestly felt exhausted after a sleepless night and my symptoms of confirmed anaemia since early July this year. 

Blood results confirmed my anaemia was ongoing, microcytic but no worse since July. My shuttle walking test was probably the worst one I have ever had and I had to quit the test when I developed chest pain.

Yet despite these negatives, I had a productive and frank discussion regarding investigations, my concerns regarding my current CPAP and the results of this summer’s sleep study tests.

What struck me at this clinic visit was how I was the only person placed to describe the impact of my symptoms on my life. Only I could decide whether the rigmarole of CPAP was worth the effort of upkeep of the machine and when the consultants seemed to disagree over the management of nocturnal hypoxia I had to decide which opinion made the most sense to me.

I could understand why putting me on oxygen overnight is a big step and once oxygen therapy is initiated it is not likely to stop and may cause complications in future. It makes me dependent and disabled in a way I am not if it remains uninitiated.

However, if the hypoxia I experienced overnight remained above 90% oxygen saturation I wouldn’t be considering the effects as seriously. My oxygen saturation drops to 87% in two to three periods of thirty minutes overnight. It makes sense to me that anything below 90% saturation is not a minor drop of oxygen saturation and nor is it likely to improve, but more likely to worsen as time goes by.

Based on the results of my sleep study, the results of which have not been seen by any of the Pulmonary Hypertension consultants a the improvement on initiating CPAP in my two week trial, I am of the opinion that I should continue CPAP and discuss nightime oxgen again with the respiratory physician at sleep clinic. As adamant as one consultant was that i should stay away from oxygen, another was concerned about the long term effects of hypoxia on my pulmonary hypertension.

As a patient who tries to be as accommodating as possible I feel awful that by making a choice I will be going against the advice of one or another consultant whom I respect and have allowed to guide my choices in managing my PH thus far, but I also have a responsibility to take ownership of my chronic illnesses and make choices in my best interest in the long run. I feel an overwhelming amount of guilt about taking up time over an issue that is not directly life threatening or immediately critical, after all, these same consultants have to make decisions about patients in ITU and HDU, where as i am at home and relatively well.

However, I brought the issue of somnolence up because it is affecting my quality of life and I am more inclined to rely on the opinion of the consultants who are directly informed of test results in detail and are more likely to react to those results within my understanding of disease management, so once again I will darken the doorstep of sleep clinic but this time with informed acceptance of commencing oxygen therapy overnight.

There’s no going back from requiring oxygen therapy once started and currently I feel so unwell and low on energy that I am willing to do anything to have my old energy levels back. Never in three years has my reading and physical activity been at such an all time low.

I am hoping with the aid of oral iron and oxygen I will feel more enthusiastic and less drained of life in the coming months. I also have an endoscopy to look forward to, as with most things in medicine, the possible positive outcome comes with a prerequisite modicum of discomfort.