Holidays Start Slowly

Despite my intentions to get up and go out to a local Easter fair with the hope of some Photos I didn't get up and spent the day at home.The weather was poor and so I wasn't to worried, with some encouragement from Liz the kids got on with some of the Homework that they have to do.In the evening, to save work for Liz, we all had a Indian Take away which was great.
Since last year when I had a persistent bug called pseudomonas aeruginosa in my lungs that took several months to treat, I have been unable to do much to help with the cooking. I now get so breathless when cooking that Liz has asked me not to.
I found this hard to deal with as I was doing a lot of the cooking when I was better,I felt that that was my contribution to the household.This is one area of the illness process that is most hard.Continuing to adjust to what is possible as you get more unwell.When I went for my assessment for 4 days at Harefields Hospital in January 2009 before I went on the list in September 7th 2009 I was a bit concerned that maybe it was to soon to be considering transplant as other people at the clinic were on Oxygen continuously and I could get by in the day without most days. But now I find myself using Oxygen every time I go out, and my concentrator runs 24/7 at home so it seems it was just the right time to be listed.

say 99?

I thought at this point it would be good to mention where the title of the blog came from
In the past I have spent a while in hospital and had the dubious pleasure of being an unusual case. On these occasions when able, I have been subjected to several groups of medical students who have been sent to find out what is wrong with me as part of their training.
On these occasions one thing that I have been asked frequently is to "take a breath in and out" then please could you say "99", this enabled the more accurate students listening to my lungs to determine that on my right side the lung is not fully inflated.I had several pneumothoraces resulting in me having 4 chest drains inserted in my upper chest and having a one way valve on a pipe as a fashion item when I left hospital.
I was lucky that the hole in my lung repaired itself and they were able to remove the pipe.But the phrase has remained in my memory.
I have researched this subject and found out that this phrase that is integrated in to a chest examination is used to elicit tactile fremitus and enable doctors to identify areas of consolidation or pneumothroax in the lungs, came about as a result of a mistake of language.The error has been repeated ever since from Doctor to medical student.

"Students are taught to say the number 99 in order to elicit these vibrations. In truth, this results from a misunderstanding of some postgraduate doctors in Germany being told to say the original German "neun und neunzig." This uses a dipthong not found in "ninety nine," but similar to "toy boat." Research has shown this dipthong is essential to the characteristic of the sound useful for diagnostics."

Dock W. Examination of the chest: advantages of conducting and reporting it in English. Bull NY Acad Med 1973;49: 575-582


So they should have been saying say Toy Boat all along.But I don't think that would have been such a good title for this blog

Lazy day

A relaxing day listening to the kids fighting with one another, moaning about homework they had left till the last minute and getting impatient about their Easter holiday starting.I decided to get take away tonight as my wife is working again,on the way home with my son we saw a deer in one of the fields near our home. I was annoyed that I didn't have my camera with me.I hope with the good weather coming I will be able to get out more and get some good pictures. I hope to go to a local Easter Fair nearby, where they will have a birds of prey display this Saturday and get some photos then, but as it is in the morning I might find it a bit hard with my breathing.

Churchill Hospital Day Out?

Spent a lovely day at the Chest Clinic outpatients today after rushing and avoiding a police speed trap in the driving rain to get to the hospital on time.
We found that there were no parking spaces in the car park nearest to the entrance then learnt that Oxford NHS trust have started to charge Blue badge holders £1.00 an hour to park there! It is not like I have a choice about walking or taking the bus, wake up,the clinic is for sick people who can't breath!!
Got a daily paper as we went in, and spent the next few hours getting X-rayed and weighed and then waiting and waiting and waiting.When we did get in, Doctor was happy that I had a better X-Ray as more of the lung was re inflated. I was happy that I hadn't put on any weight.Health trust were happy that they fleeced us for the car parking fee, and we saw several men with suits and clipboards happily doing nothing useful on the Hospital payroll(paid for with the parking fee no doubt).I was happy to see the Professor who had helped me with my lung collapse and saved my life. He help me with a couple of tests that needed doing and gave me appointment in six months,wishing us good luck for the transplant as we left.
My wife went to work later and I wondered if I would be getting a call tonight having been called on two previous night shift when she was working but put that thought out of my head and got on with the night distracting myself with the computer and magazines that I had bought.

Another Day another Trojan

Did a virus scan before going out and found that my virus software decided that I might have a Trojan program on my computer.After a while looking around on the internet and reinstalling the software I decided to treat it as a false positive as a second scan later didn't find anything.I was glad that it was the computer that had a infection not me.
I hate computers when they go wrong I don't know how many hours I have wasted on sorting out things on the various computers i have owned since my first ZX Spectrum in the 80s but I still find them a worthy opponent to exercise my brain against.After a while and a couple of games of backgammon one to me one to the computer I gave up and went to bed.
I have a appointment at the hospital for a review at the Chest Clinic at 10.40am. which will be a bind as I am using Oxygen till 12noon most days. I will have to use a wheelchair and be pushed by my wife which is hard for me to accept,harder for her to do! But that how it is because of my lungs now.
I hope that it can be of some use,but having been to Harefields three times last month for possible transplants and had all the test done, there will be little to say.Never mind it will be a day out together without the kids.The things we will do for a quite afternoon!

British Summer Time

A lazy day today having lost a hour of my life to British summer time, I awoke late and decided that I would stay put at home today. My wife is cooking a leg of lamb for Sunday roast and the kids are arguing about who will go on the computer, my daughter winning out with the argument that she needs to write up her coursework.It seems to do this she need to be logged on to Facebook to manage it!
Managed to get out yesterday with my son and sort out some new trainers for him. Half a ton lighter in my wallet when we left we decided to go large at Burger King then home. By the time I got back I really needed my nebuliser,the Oxygen in the car is running out quicker now that I am using it most days.I will have to order some more soon as the Oxygen company are not that reliable with deliveries at times,I don't what to get left with none should Harefields call.

Shopping Day

Shopping day today dragged myself round supermarket with my wife got some magazines and some fillet steak, a few years ago it would have been cans of beer and some rum and coke maybe, how things change. I find that getting drunk when you are breathless is not fun, the booze makes the breathlessness worse so I don't bother. Had a chat with the lady in her 60s on the tills who told me that her first husband had lung disease and lasted fifteen years I told her that I hoped I would last that long but didn't think I would . She wished me well then, as we left the store, overtook me walking quickly on her way to the staffroom for a break .I waved her to past me like the driver of a slow lorry.By the time I got home I felt worn out the steak helped and I felt better after a nebuliser and a sit down.

Another wet day

Got up today and needed a bath so I set aside hour and a half of my life to the process.When I was well I loved baths and looked forward to them as a time to relax and enjoy but since I have become unwell with C.O.P.D. bathtime is a dread. I now have to take Oxygen into the bathroom and use it if the breathlessness becomes too much and as today was wet, thunderstorms and lightning, I had a particularly bad time of things, washing my hair is always the worst, as the movement of hands above your head is something that makes me really breathless.
Just after I had washed my self and was recovering the phone goes, I tried to work out what phone it was Mine or my wife's but couldn't tell, I started to worry and a sense of dread overcame me,was it Harefields. I felt my breathing increase and I started to tense up anticipating my wife calling out to me to say it was a transplant coordinator on the phone but no call came and I realised it was probably one of our children ringing on the way back from school.I relaxed again till I caught my breath and was able to get on with the day.I wondered when they would phone again but resolved to get on with things and try not to think too much about it.Easier said than done!

Back on the list

Went back on the Active Transplant list, after a week off recovering from Three calls in the previous month. we had calls on 20th  February, 2nd March and the 10th March i have detailed them on the black bar at the top of the blog.
This has been the most stressful time of my life since we have been on the list and it is taking its toll on the family.All of us were worn out and needed a rest from it all.
Now I am sitting here wondering when the phone will ring and trying not to jump when it does.

Spending my time posting pictures to my Photo Network site Photo Community - MyShutterspace and keeping updated on Facebook and TransplantCafe.com - The Gift of eLife! I would like to sleep but I am a bit hyped at the moment.

On the List Two Calls in Two weeks

I received my first two calls after going live on the transplant list on 17th September. I have decided to write this blog to detail my journey while waiting for new lungs.
I have been reading several other blogs and have found them very helpful and following others progress to transplant has helped me feel that I am not alone.
I have been waiting to go on the list for a while but it has been a shock that within a month of being on the active list at Harefield  Hospital I have added detailed posts about the calls in the pages on the black bar at the top of the blog.
It has been a totally overwhelming experience and has left me a total wreck there are still so many thing outstanding that we have not sorted out. The issues with the tenancy and what would happen to my pension if I died.My girlfriend and I have separate bank accounts and access to our shared money would become a problem.I have tried to leave my girlfriend instructions for all the passwords to computers and my online accounts but some of these things will take a while to sort out and we hope to resolve these problems.

There seemed to be only one solution to issues outstanding,we had been together for 22 years it was well overdue. I had in the past been down on blended knee and ask Liz to be my wife and she had said yes, so we felt it was time to get on with it. I booked the Oxford registry office and had a word with some friends to see if they were free to be witnesses and the marriage is set for 23rd October 2009