thinking

The last week, has given me a lot of time to sit and think.
It also gave me a few like minded people to bounce thoughts off and left a few things clicking into place.
Whilst I am still hopeful that this surgery will work, I went into it with a really good gut instnict that this was going to be the one. But as time goes by, that instinct fades and I cant help but think what now.

These reconstructive steps, where always going to be the answer, the fix, but when they have failed me, there has always been the back up, that one day, a trachea transplant maybe an option, with less of the complications that the reconstructive surgery has. But with time also comes knowledge and I know so much more now, than I did at the start.

Transplant, is a new procedure, with no firm records of success. However, there have been more surgeries than are currently mentioned. The successful ones get the attention, but in the back waters of journal articles and research papers, there are mentions of unsucessful ones, or ones that worked, but other complications still resulted in death. In all, there is reason why it is not a current viable UK surgical option, it is its high mortality rate, which sits at about 50% for the average person with no other medical complications. However, the biggest complication is infection, which was the result for many of the deaths. Give my health status, my immunity to antibiotics and ability to infect anything quickly, my success rate would be below the 50%.

Take out all the aspect of law right now, if I were to be offered the surgery tomorrow, given the above factors, would I take it? I guess that would be the million dollar question. To say yes, I would have to go into it, knowing there was a very high chance I would not come out. Would I be ready to die? I craved it for so long. But in the last year I have built a life I love, relationships, hobbies, achievements and goals. Could I just drop all of it. right now, I dont think I could. I would have to say no to surgery, if it became available.

I am rapidly running out of long term solutions. The reconstructions are not working and as I have discovered,  monthly surgery, is not a real option I could live with. This would leave me with two other options that I know of. A permant stent would be one. Right now, I have a stent in. It has lasted a week until my breathing has detoriated rapidly, I will be pushing to make it to 2 weeks.

The last option, leads back to the trach. I do stand by what I said in the past, I think if I had stayed with the trach, the chances of me still being here would have been slim. Again, the rate of infection and hospital addmissions would be silly.

At this point, I dont know where I stand. I think, I really need to talk to my surgeon and see what the next step holds.

Im not ready to give up, nor ready to say goodbye. But there must be more options. There has to be. I need hope to be restored. I need a goal.