Wednesday, March 31, 2010

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.

Tuesday, March 30, 2010

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!

Sunday, March 28, 2010

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.

Friday, March 26, 2010

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.

Thursday, March 25, 2010

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!

Wednesday, March 24, 2010

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 - The Gift of eLife! I would like to sleep but I am a bit hyped at the moment.

Thursday, March 11, 2010

This is Wearing Me Out

On our fifth journey to Harefields The night was cold .My wife was at work for her second night shift of the week my son had just gone to bed, my daughter being tired had gone to bed some time earlier
The mobile rang....Unknown number confirmed my suspicions. It was 1.15am and the voice on the other end said Hello Mark it is a transplant coordinator  from Harefields we have a possible offer of organs. He asked if I was feeling better now after being turned down on the last visit due to my blood results. I told him that I had, that afternoon, had the results of a full blood count done by my GP surgery that showed a normal range of values and a reduction in the abnormal white cell count that had been a problem a eight days earlier.

 No matter how many times you get the call it has the power every time of reducing you to a jelly. I shakily rang Liz and called out to the kids that the call was from Harefields. My son was quite good having just gone to his room but my daughter who had been woken in a shocked state was sobbing wrapped  in a blanket.

Here we were eight days later on the road again.I packed up the hospital  bag and got my medication together and when Liz got back everything was ready for us to go ,I was so glad that I had got some more Oxygen delivered earlier in the week and got the new bottle ready to take with us

The journey to Harefields was quiet and seemed to go frighteningly quickly soon we were pulling into the entrance of the hospital.
This was the worse time, while you wait, that is the time you start to think. Time ticked by slowly but tension continued to build there is no way to immunize yourself  to the feelings that well up in you. You are happy when people come to do things like examinations and anything to take your mind of thinking about what is to happen even if that means that you are nearer the end of the process.

 The  anaesthetist turned up and talked with me and then the surgeon, they were happy not to x-ray me and the consent form had been signed the last visit so we waited some more...the nurse came to tell me that the coordinator had rang and asked that I shower and get shaved so things seemed to be moving towards a positive conclusion
When I got back to the room I thought this might be happening now and the fear welled up again.
I took some breaths and made a effort to relax now that the final procedures were concluding and wondered what it would be like to say goodbye to the family as they took me to the opreating theatre?

The surgeon and the transplant coordinator came back to the room.
I looked at their faces and knew that the news was not good. They said that the organs were not good enough for transplant and my heart sank, my hopes for a new life dashed.

After I heard the news I quickly changed out of the hospital gown  as I needed the comfort of my own clothes to feel centered after the disorientating experience I had been though I looked at Liz and she looked so tired I cuddled her and told her I loved her and we left after a cup of coffee into the throngs of traffic fighting to get to work in the morning rush hour we got back home at about 10am with the promise of no more calls till I called Harefields the following week as we wanted the weekend of Mothers day for the family. When I got home only then did I notice the name labels still around my wrist I cut them off before falling into a deep sleep.

Thursday, March 4, 2010

Many White Blood Cells

The home phone rang at 20.30  The voice on the phone was not the one I expected it was a voice that I knew and Could place immediately, hello Mark how are you? This is  one of the transplant coordinators at Harefields Hospital we have the offer of a possible set of lungs.
The words hung in my mind for a second or two ”I have to call my wife as she has gone to work” I said it will take a while for her to get home. She told me she would call me back in fifteen minutes.
I rang my wife on the phone no answer then rang again,” What!!” she said. We have had a call to go to Harefields.she told the ward night staff and started to drive home from the hospial she was at fifeteen miles away.

No matter how many times you go though this is still is a shock when it happens and I found myself shaking and having problems focusing my thoughts Then Liz got back and the kids ran to meet her for emotional support. The coordinator rang back to say that they were happy for me to come so we all sorted ourselves out with what we needed and got in the car for the now familiar journey to Harefields Hospital.soon we were pulling into the hospital ground to the sound of  Wish you were here by Pink Floyd.

The Nurse turned up and took my Temperature, Pulse, Blood pressure, and Oxygen saturation. The temperature was up to 37.6  slightly up from normal.
Unfortunately a question  had been raised by my temperature spike and this was to return with a vengeance upon the reporting of my white cell reading.
The surgeon who had been talking with us returned with a face that indicated he was not bearing good news sure enough the results were not good. I had a elevated white blood cell count that combined with the raise in temperature and upset stomach indicated there may be a problem developing and the decision had been reached that I was not fit enough to transplant that night.
Gradually I could feel myself sinking down to earth from the ceiling where I had been drifting while the process had been going on .

I put my head in my hand I asked him to confirm there would be no transplant as it wouldn't sink in I had taken the dangerous step of thinking that things were going to proceed which I shouldn't have and I was finding the way back to the land of the maybes hard.
By the next day my temperature and stomach were better