Life Update: The Short and Exhausting Road

In the past I’ve spoken about my Pa and his lung disease (Idiopathic Pulmonary Fibrosis) and the dull outlook we currently have. Before I go on I must absolutely stress that in relation to this time last year, things are much better. Last Winter consisted of Pa spending most of his time in hospital with pneumonia alongside a rapid deterioration of the lung disease which left him frail, barely able to lift himself out of bed let alone walk to the toilet a short distance away and ultimately a broken down and beaten man. It bugs me somewhat when friends and relatives boast of their sick loved one being brave as if those who aren’t are cowards. The circumstances and symptoms of his illness terrified me beyond belief, for him to have go through such a distinct and excruciating downhill episode as he did must have stripped him of every fibre of his being. Whilst the rest of the world in 2016 has bemoaned the details of what has made it such a horrible year, for my family it was all about recovery and learning to cope with a new lifestyle.

Lung diseases don’t have a fantastic prognosis, as you would very expect when this function is vital to our very existence . Once scar tissue forms it is irreversible and unpredictable and there are no answers, just statistics and a shrug of the shoulder from the medical professionals. The only “fix” would have been a full double lung transplant. By removing his damaged lungs and replacing them with “new” ones from a donor there would be opportunity to start again. But it isn’t as simple as taking one out and popping a new one in. Before you even get anywhere near these sorts of departments to talk to someone there are lengthy procedures and hospital visits to build a profile of the patient at hand. How sick are they? Is the cardiac system working good? Are they rapidly deteriorating? Etc.

Unfortunately back in May we found out from our first port of call that the Manchester Transplant team were declining my Pa. Due to his age (61 this past October, 65 tends to be the cut off age for transplantation) and due to his medical history of a aortic valve replacement it would be far too risky and far too complicated. Reading this short and to the point letter was a punch in the gut and a huge fall back for my Pa and his peace of mind. A new set of lungs was his hope and that was torn from him in one A4 sheet of paper. Thankfully our Consultant is hugely supportive and backed our request for a second opinion which was referred to Papworth in Cambridge, the somewhat specialists of heart and lung transplantation. And with that came another five months of waiting.

Sadly, today we received another letter that politely declined any progress for Pa and his option for transplantation. In a roundabout way they agreed that the operation would be far too risky considering his previous medical history and that of his age.

As I mentioned our Consultant is hugely supportive but also very honest. Even if we reached past the initial stage there would be another year of tests and examinations before he could be considered for the waiting list, the list of which is in no particular order than severity and the risk factor attached to the patient. I tried to find statistics to cement this point but failed, however there are thousands who die every year even on a waiting list because there isn’t enough donor lungs suitable for transplantation. In other words, nothing is certain and even after a transplant there are huge risk factors involved in recovery and whether the lungs won’t be rejected by the body.

I don’t want this post to be doom and gloom. Whilst we are rightly disappointed, the steps Pa has made in the past year is huge (literally). He is on full time oxygen therapy which now increases his ability to be active and though some days are harder than others, he is able to get around and remain to a certain degree, a sense of normalcy than being confined to a chair. To put it blunt I have no choice but to remain positive. I couldn’t survive if I let this swallow me and I imagine my family members would be the same. We have to push forward to simply survive.

As it stands in the UK you opt in to organ donation whereas in Wales they reversed the rules in that you opt out. Many people when questioned with being a donor are happy to do so and sometimes it is the relative who blocks transplant opportunities because they weren’t aware of their loved ones wishes.

Whilst we are exhausted and didn’t get to see the full scope of organ donation, we understand the frustration and disappointment attached. Imagine those thousands of people going through the same thing, to feel like they’ve won the lottery when making the list only to ultimately be let down because not enough people are sharing the gift of life. Please, please sign the donor register, tell your loved ones and pray you never end up where so many are; relying on that list to give you back your life.

 

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