They say that self praise is no praise at all and while I largely agree with that sentiment I'm going to indulge a bit in it just now because of something that's aired over the last few weeks on Channel 5. It was a show called The Gift of Life and was 3 hour long episodes set in and around the transplantation unit at the Freeman Hospital, Newcastle that I mentioned in my last post. I was filmed for it but my part wasn't used as they had other stories that they felt were more pertinent to to the tone of the overall show, which was fair enough.
You should still be able to find the shows on the Demand 5 website (here). I will warn you that they are full on tears and snotters affairs even for the medical staff involved. It really is a cruel speciality with which to be involved. It's also a pretty full on show with regards showing you the brutality of the operations themselves so I wouldn't recommend it to everyone.
You may ask where my pride comes in and it stems from this. It is as simple as my ability to not let the period of waiting for the transplant break me. In the show they talk gravely about having to wait in periods of months as being a massive deal, yet here I am well over three years into the waiting list and six years post immediate lung failure. Of course I have my moments, and we are all to bend a little if we are not to break, but I genuinely think I've done a wondrous job of keeping myself from going stark raving bonkers in this time. I know this mostly because people tell me so, often when they have just expressed their surprise at how long it has been. I've explained before about how time passes differently for real people compared to me. All my days are the same so a lot of time can pass without there being a marker to go down yet for people living a normal life there are all sorts of markers to suggest the passage of time so for them it feels somehow longer. Months mostly pass in a flurry for me. Thinking back on the notion of markers dictating just how fast life passes by I have found that the ageing of my nieces and nephews has been a good guide for me, especially the youngest one, who is only just shy of a year old. The differences in her from day to day give me a greater perception of time.
That said I have been trying to get out a lot more and was out last Monday night to tick off a box I've wanted dealt with for a long time. Those who know me at all know that my favourite song ever is called Yes by McAlmont & Butler. I have the poster for the single on my wall and it has been put on every mix tape and CD that I have ever made anybody. It's twenty years old now and still sounds as fresh as the day it was written. Even after thousands of listens it still fills me with unbridled joy to hear it. If you've never heard it here it is
They only sporadically get together as a duo but I love them and the last time they played in Glasgow I had the misfortune to be hospitalised just out of earshot of the gig venue. Anyway I finally went to see them on Monday night and it was every bit as good as I could have hoped. I even got a bit teary eyed as they finished with my favourite song.
The reason I can get out to these sort of things now is because in some ways I am actually relatively strong at the moment. I am the heaviest I've been without being on steroids and this, allied to the immunoglobulins I get once a month, seem to be doing a good job of staving off infections. That's not to say I'm not absolutely exhausted after these affairs (I can be pretty much broken for two days after) but that doesn't mean I shouldn't do them. For too long in these past few years I've erred too much on the side of caution and avoided things. I'm trying not to be so scared.
I justify that to myself because for the three years previous to that I really was very poorly indeed and often had to cancel things at little or no prior warning as I was just too weak at times. I was less than 50kg in weight and getting fed through a tube direct into my stomach for goodness sakes - it's no little wonder I wasn't all that comfortable going out and about. On that topic my transplant threshold is 54kg and I am currently 68 and I feel I have gone a bit too far. I am aiming for about 60-62 so I have enough that, should an infection hit me over the winter (almost inevitable), then I will still have plenty in reserve. I also can't go any higher without the need for a new wardrobe full of clothes.
This is one area where I'm not entirely content with the way things are. I can't control my weight it seems. I am going up and down dependent on whether or not I take a medication to help me gain it. Without it the weight seems to fall off too easily and with it it goes on a bit too easily too. Even messing around with the dose isn't helping - I'm on the lowest dose now and still gaining weight. I've always been very thin but proportionate to my frame and I'm not now and am very self conscious about it. I know I shouldn't be and it's not a big deal but I'm looking at someone else's face in the mirror and I'm fairly sure I don't like it. Only a month or so ago I had a visitor in saying I was looking the best I had in years (I would have been about 60kg then) but I just can't get the balance right. This is, of course, a vanity on my part but I can't help myself with it. The other thing bothering me is I appear to have what they call Roseacea on my face which manifests in angry, red patches. I've been using a cream to try and treat it but it's not changing anything yet. I've mentioned it to the bone marrow docs in case they thought it might be a manifestation of Graft vs Host Disease again but we're all comfortable that it's not that thankfully. I just look like a borderline alcoholic with prominent veins on my cheeks. Overall for someone with my ego it's infuriating. I'm genuinely much prettier than this.
On the subject of rejection, and getting us back to the Gift of Life shows, I know I'll be in immunosuppression for the rest of my life post transplant, yet somehow I never came to the conclusion that this is because my body will never accept the new lungs as mine. After all my new bone marrow finally accepted that my organs, internal and external, were my own after a few years battling. I came off immunosuppressants then after about 5 years. I guess I just never gave it too much thought but thinking about it now I know that things will never go back to normal for me. I'll never be able to teach at a school again - the risk of infection will just be too much. This doesn't rule out further education teaching but does limit my choices markedly. I think I always favoured further education anyway but it's the not having the choice that is infuriating.
So, all in all, things are positive but I'm thinking of calling my transplant co-ordinator to try and make sure I stay that way. I'm not beyond admitting I might need help and while I've done great to this point a little bit of help from people who know this stuff inside out might not be the worst idea ever.
