My Long & Winding Road To A Diagnosis Of PF

Early last year I was diagnosed with Severe Pulmonary Fibrosis and during all the many battery of tests Borrelia Burgdorferi (Lyme Disease) gave a 'positive' result which along with the PF and my other unhealthy problems rather rocked the original diagnosis I was given of M.E./CFS some 15years ago. Although it has to be said many autoimmune illnesses can and do mimic one another as far as symptoms go. But lung disease? I hadn't even considered this.

I had thought for a long time about the probability of my having other eligible diseases as I've been so ill over the past fifteen years having to take early retirement from my job. Especially since a tick bite during my travels in Cape Cod in 2001 (an area prevalent for deer ticks) and over the years repeatedly saying to any doctor who'd listen (or not) about my evolving breathlessness and how badly it affected me - but lung disease?? 

So - 15years has since elapsed with at least two bleeping red lights in the form of an X-ray (2002) and a CTscan (2007) of my chest the latter showing the obvious signs of 'lungs in trouble' - however I can't 'gnash my teeth' on the obvious glaring oversight of at least 2007's picture of my lungs which showed the damage already established but instead drew some comfort from the fact that I was put under the care of a Pulmonary Care Team at renowned  Papworth Heart/Lung Hospital in Cambridgeshire (UK) and felt hopeful that my battered lungs were now going to be 'cared for' at the very least instead of 'cast aside' 

In my case I have Familial Pulmonary Fibrosis, an aunt and her daughter (my cousin) on my mothers side had this condition and recently my elder brother by 4years (I'm 66) has been diagnosed with PF. Initially Papworth hospital trialled me on the newest medication for PF, Nintedanib however I had to come off it several weeks later due to the dreadful side effects of daily nausea and weekly vomiting. It was then suggested that I had a break, before restarting again on a lower dose alongside anti-sickness meds burp yet again the nausea and vomiting started. Incidentally the very day after ceasing taking Nintedanib all side effects stopped.  

I then had to think long and hard about my next step and decided with my family's support not to take any more medication which in itself is not proven that it would stagger my PF deciding instead to be 'managed' by an excellent team at the Pulmonary Clinic of my local hospital. For me personally I really can't be doing with medications that have dreadful side effects as I have experienced and with no definite conclusion that they help this insidious disease from weaving its wicked way further through my lungs. I would feel the very same way about a lung transplant - no thank you - please give those lungs to someone who wanted them in the same way that I don't.

To conclude I'm mostly housebound now, and need a wheelchair if on occasion I feel well enough to be able to venture out into the Greater Universe with either my husband or support worker. I'm on and off oxygen, reluctant to be completely reliant on it just yet, however I feel fortunate that I receive monthly visits at home from my lovely Pulmonary Nurse who without doubt helps in my wellbeing to manage the beast that is Pulmonary Fibrosis.

Positive Note: Recently I've signed up to: 'The 100,000 Genomes Project' for rare diseases  

April 2017

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