Just A Few Things!!

As I have said the last few days have been a bit hard and as per usual a lot of the things going around in my mind are sort of connected with loss of some sort. Things such as loss of independence etc etc. so I’ve used up today’s blog to list all the various medical conditions that have been bestowed on me in the process of keeping me alive for the last 2 ½ years since diagnosis.

Here goes then. Are you sitting comfortably?

Lungs

My left lung is working at around 10% capacity and my right lung is working at around 75%. This is mainly down to a rather nasty virus called Pseudomonas I picked up when I was in hospital and going through my first lot of Chemo. This virus has colonised my lungs due to not being treated effectively from the start and out of all the many frequent trips into Heath Towers for a rest this is by far the main cause and probably around the region of 85%. There is also a possibility that the Chemo has had some effect as in making it worse as there is also evidence that this is a side effect. The chest consultant has never really been able to give me an accurate diagnosis and in fact I think I must be on about the 10^th diagnosis to date ranging from a Budgie borne disease to Asthma. The condition of my lungs will never be any better than they are now and in fact will probably determinate further in the future and the best to be expected is to learn to use what capacity I do have to the fullest.

Skin

Well where do I start. In this skin part I also include the loss of hair etc too. As a consequence of Chemo you obviously loose all your hair, well most people do. The problem I have is that due to the GVHD that I have had off and on since transplant has damaged a lot of my hair follicles, so much so that I will probably never be able to grow hair on around 80% of my body. Then there is the skin tightness that I am suffering from at the moment badly, again caused by GVHD which if you have reading my musings you would have all the gory details so I won’t put you all through it again I’m not that cruel. I guess in this section I could include the nail problems too. I have found that all through the treatments etc my finger and toe nails have become really brittle and also prone to splitting and always annoyingly right down the middle. In fact just having a quick look now I currently have 6 split finger nails and 5 toe nails too. I do apologise to all of you eating your dinner reading this and thinking about my manky toe nails but you should know me by now and not be anywhere near food whilst reading this its really bad for your health.

Hearing

I have also suffered permanent hearing loss which has been put down to both the Chemo and also the long term use of Prednisalone (steroids), so much so that I now have to wear 2 Hearing Aids. My left ear is the worst with around a 70% loss of High Pitch and 30% loss of Low Pitch Hearing. My right ear is not that much better mind you with a loss of 60% High Pitch and 25% Low Pitch hearing.

Heart

The problem with my heart is that the Left Ventricle is only currently working at around 20% although the right hand Ventricle is around normal. This has again been put down to the Chemotherapy treatments I have had. This again is a permanent loss and I am on medication for life to try and make the right hand side work more efficiently to make up for the lazy left hand side as well as stopping it actually growing in size which will make it less efficient. This does cause me some major problems with my breathing as it doesn’t take much to make my heart start to race even things like walking from the sofa out to the kitchen etc and when it starts to race I find it hard to breathe properly.

Teeth

Just prior to transplant you have to go through this sort of total body check up and as part of this you have to visit the Dentist. The main reason is to see whether there is any risk of infections from decaying teeth which might cause problems during transplant. Now I have always had this dreaded fear of the dentist and as a result my teeth were in a bad way really. I was gob smacked however when the result was that they decided to take out all of them except 4 on the lower jaw and 2 on the top Argggggg! They took them out in 2 sessions and it was not a very pleasant experience let me tell you as due to the poor state I was in they would not do it under general anaesthetic but only local. I suffered for months afterwards with a constant socket infection which stubbornly refused to go resulting in loads and loads of return visits and various bone extractions and gum stitching. They have kindly now given me a complete set of my own plastic teeth which took ages to arrive and then get used to.

I think that’s about it although I know me I have most probably forgotten a few things along the way so I might end up adding bits and pieces at times.

I know when they start you on whatever treatment regime or Protocol as they like to call them, they tell you all about the possible side effects that you may or may not experience but I didn’t expect to get every bloody one of them. In saying that though the choice of maybe living for maybe just another 2 weeks or taking the Treatment on offer I guess there was no choice really. The Chemotherapy has by far caused the majority of my conditions whether it has been directly or indirectly but without it I wouldn’t be hear writing this now so I suppose I should be grateful really although that’s quite hard especially at the low times when I am just looking at someone to blame I suppose. I guess I tend to think at these low times too that I haven’t lost these various things but they have been robbed from me against my will which is quite a different thought all together.

Jeeeeez I didn’t realise it would go on this far you poor sods having to keep scrolling down, I do apologise and I promise that tomorrows will be a nice short one to make up for it. NOT!!!

See Ya!!