Four year Anniversary

This time four years ago I was recovering from the biggest change to my life since my birth

Thanks to my donor I was able to breath again after five years deteriorating to the state of a respiratory cripple on oxygen constantly to breath.      

It seems like a lifetime ago and in a sense it is!

It has been a year since my last entry in this blog why is this I here you ask? truth is I have been getting on with daily life. There have been ups and downs in my health but mostly I have been trying to live a normal life and not let my medical conditions rule my life. 

It took a long while to get over the process of transplantation and the changes it brings with it,

I was told by my doctor that transplantation is not a cure it is swapping one serious condition for a new one.At the time I didn't fully accept what that might mean, I think now I understand!  

How have you been?
 a question many people ask when they met you after a long time. For people with a long term medical condition this becomes a very awkward one to answer! This year I have tried to answer in the expected way
"I am fine how about you"

 On the whole people don't want all the details, if you tell them they get scared for you and worry what to say to you. Truth is the only people who know what you are talking about are fellow transplantees.But for the purposes of the blog I shall briefly fill in some details.

I have had to deal with a few health issues this year not least the issue of chronic rejection! It has not cause me any overt problems as such but the thought of it being present has been hard to deal with. 

It is strange that when I was really unwell I dealt with many more problems and was somehow able to ignore them and get on with life better than the unseen issue of a worsening of the rejection!

Another issue that has taken some getting used to has been my Diabetes I have struggled with the effect that it has had on my life and the restrictions, but it seems that a the moment it is not causing any of the health issues that come long term my eyesight is okay and peripheral nerves seem good checks through my GP seem to be in the range that is expected.

I did have a issue with some sore skin areas on my right leg that was worrying me. But after a skin biopsy in the summer it turned out to be Porokeratosis. This a skin condition that can occur due to the medication I take for the transplant. I was happy to find out that it wasn't skin cancer, a risk factor for all transplants, but there doesn't seem to be much that can be done for it, and it does need to be monitored as it can develop into skin cancer in a small amount of cases therefore I will be attending Dermatology dept from now on.

RSV     

The most major issue this year was being admitted to hospital with RSV!

It started as a cold just before Liz went to Manchester with our daughter to look at accommodation for University then it got rapidly worse over that day to the point were I became breathless a call to Harefield confirmed that a hospital admission would be on the cards and when my son got back from college that night a ambulance was taking me to the local hospital.

That night I was back on 4 litres of oxygen and quite worried two days later I was back in Harefield on IV antibiotics after a bronchoscopy and a diagnosis of RSV a common respiratory illness in children for a immunosuppressed person it can lead to pneumonia and death so i was glad that I got treatment when I did even though  I had to spend the whole of the stay isolated as I was a risk to the all the other transplant patients.

  

Finally a couple of months ago just after my holiday I managed to brake my ankle walking down a hill after spending the night waiting for the demolition of the cooling towers of a local landmark didcot power station and spent some time on crutches :(

It has not all been bad although I hoped to get away a few times this year I was able to go on holiday with the family to Sussex for what would be the last time although we had done most things before we did manage to ride on the new Brighton Big wheel

 

and saw some of the sights before having a nice meal 

Brighton Street art

 
 I also managed to get to Hasting on Mayday to see the largest amount of motorbikes in one place I have ever seen. 41000 attended and filled the town with bikes I was there on my bike with my son Mine is the bike with red luggage on the right of the photo

Another interesting event happening on the same day was the local may day celebration "The Jack of the green" where you can find many unusual characters!

 "I am fine it is all the others" 

This is another stock response to the how are you question. 

In this last year this has been particularly  poignant as some of the people I follow on this blog are no longer with us now or are having a bad time of it 

Firstly Kerry who wrote Come walk in my shoes... did not make it to receive new lungs and passed away peacefully on the 21st March 2014 for those who want to support the new charity set up in her name please see The Kerry Alex Thorpe Trust  you can read more about Kerry on her 

FB transplant page 

Another person no longer with us is Hazel who wrote  Hazel's Blog - The road to transplant she was called to transplant and received new lungs but unfortunately died from blood loss on 25th September as you can imagine it has shocked me and all the people who were following her progress:(

The final person I have found out is having a very bad time is Jodie who writes Jodiecf Blog she is suffering with very bad chronic rejection of her heart and lungs and is waiting to be put on the transplant list again please if you could offer some support to her and comment on her blog I am sure she would appreciate it.
On a positive note the people I mentioned in my last blog entry last year are dong well Kirstie  is doing well since her second transplant Kimberly is getting better after her problems last year. Kath has recovered really well and is living life to the full since receiving her new heart and lungs
Katie is doing well since her transplant and is now involved with LLTGL as a advocate
If you want to help this very worthwhile charity please think about buying one of the new

 Transplant Troopers Calender 

It contains several people that I follow on this Blog and will help with educating people about transplant and organ donation

Other things that have happened in our household this year is my son Alex is now a man having reached 18 this summer. I was able to join him and buy him his first pint of beer in the local pub, something I thought I would never be able to do when I was ill.

My daughter Ellie has left home to go to Manchester Metropolitan University and my wife Liz and I will be celebrating our 5th wedding anniversary on 23 October after 27 years together.

Our family 12th September 2014

All these things would not have happened if it wasn't for my donor leaving me his lungs for that I will be eternally grateful to him and his loved ones who allowed the donation to go ahead 

Please if you haven't signed the donor register please consider doing it now 

and if you do or even if you don't 

please let your loved ones know so they can honor your wishes

Sign The Donor Register 

   Click Here        

Waiting One Year On

7th September is the Birthday of Google search engine. It also is significant date for me that marks one year since I was placed on the transplant list. 
How has it been? A roller-coaster ride with several stops along the way!

I had been dreading this day and now it is here I feel quite calm.
I was told that 18months to two years was a expected time to wait. So it is not unusual that I would still be waiting. Despite the great problems with infection that delayed my listing in the first place I am still here.I have survived Bird flu and the awful winter last year and all in all I am feeling quite good physically for a respiratory cripple.

The problem with the wait is the mental effects. I have felt a bit down now that my holiday is over, and with my birthday coming just afterwards it was a reminder of the passage of time.I am aware that I am much less confident now,and the family is finding things hard. We argue a lot and I am aware that the strain of my illness is wearing us all out,I sigh a lot and cry a bit when it gets too much. But the day to day can be a real effort. The things that annoy the most are the little things.Carrying things up and down the stairs so that when I am unable to deal with the stairs in the evening, I have things in the bedroom that I need. Bath day knowing that this will add two hours to the day.The evening tied to an oxygen mask are the worst. 

It is now autumn and just today I have noticed that the trees are starting to show the effects.
This is a good thing for my photography, a bad thing for my health. For those who know about lung disease the worse sort of weather for breathing problems is cold and damp.This is something that we are about to have a lot more of now.

In years gone by I as a fisherman.I would be dusting off my pike gear this time of the year and looking forward to sessions on a cold misty riverbank, watching a large red float hoping to see it disappear below the water.Or casting a plug into the slow flowing waters hoping for a pull on the line that would indicate a fish.This is something I will have to put on hold for the present.   
I would also have spent time walking in the country side collecting conkers for my son or collecting blackberries and apples for a pie maybe sweet chestnuts to roast.These are things that I would have problems with now.
I was talking with someone on twitter the other day who told me to focus on the future and what I would do when I get my new lungs.So for the next few sentences I will do just  that.
What do I want to do when I get new lungs:

A walk in the Countryside

• Walk in the countryside-I love walking and this is one thing I really miss I would love to walk out into the countryside and up and down hills without problems.I would love to take my camera into the fields and take pictures of animals and landscapes I can only glimpse from my car al the moment.  

• Go swimming - I loved to swim before I was unwell and did it all the time. I really miss that,I have been told that swimming in a pool is okay. Swimming in a lake or river on the other hand would not be advisable as that would present a risk of infection.  

Go Fishing

• Go fishing-I would love to take my fishing tackle to a quiet lake sit and fish and watch the world pass by or maybe go to the coast and go out on a boat and fish for my dinner then cook the fish fresh on the shore when I get back

•  Glastonbury tor- I did quite a lot of festivals in years past and went to Stonehenge free festival a few times and Glastonbury on several occasions I saw the tor but never walked up and had a proper look. 

Ride a bike

• Ride a Motorbike- when I was young.I was a biker, I had many bikes including a Triumph Tiger cub 350 and a Yamaha 650 and I regularly see many bikes pulled up by a local cafe nearby I had to sell my last bike when I got unwell and really regretted it I swore that I would ride another bike one day. 

Hopefully I will do all of these things but if I don't it was nice to think about them. I still have a bit more stamina left in me yet.
So Year two, here we go. Bring it on!

Good Luck Justine

Just a quick update to say good luck to one of our athletes competing today in the transplant games she is Justine and you can find her Blog at

Life after Lam and Double Lungs 

Her website is  Justine Laymond 

Where you can see a very good video about her story 

 Lets wish her lots of luck and hope she brings back some more medals for United Kingdom She supports the following charity for her condition so please take a look

LAM Action

Another great lady is Holly Cocker who has put together a photo exhibition for 

 National Transplant Week from July 4-11 

Give and Let Live, will be on display at the second floor of the West London Renal and Transplant Centre if you can't make it to the exhibition you can see the work at Holly's site at
Holly Cocker Photography 
Please check out some of her other work as well while you are there and you can follow her blog if you like where she has her latest work including videos she has made. Her most recent about Pete A Cystic Fibrosis sufferer who is deaf and the difficult decisions he will have to face in his life.

Shocked in the Supermarket

I spent the day in bed yesterday. Although my test results had come back clear from my chest clinic I had eaten something that disagreed with me a bad stomach resulted.
I felt able to get out today and do some shopping with my son,my breathing was better and I was grateful so we went to the bank to get some money and then went to the supermarket to get some things for dinner.I was happily collecting food I had been craving I had just rung home to ask what was needed and was looking at some deserts when the mobile rang...the display indicated a call from number withheld phone.
I felt my heart start to beat faster and a voice inside me said "here we go" I answered the phone tentatively expecting a unknown voice from Harefields. What I did hear was my daughters voice asking me to get her some crisps that she wanted.
She had rung on our home phone which was number withheld, a left over from the days when I worked as a Forensic Nurse, instead of her mobile.
I let out a audible sigh of relief and felt my body relax after the tension moments earlier."what's up" she asked and I told her that I had thought it was Harefields ringing.
That is the way it goes when you are on the list, you get on with life trying not to think about it but then bang something slams it back into reality.I took a moment to calm myself down and then got the rest of the shopping before going home to as the equilibrium returned to my life for a while longer.

What a difference a day makes

Have had a bad day with my breathing today which is annoying because the weather was quite good and normally it is wet days that are a problem.But today proved to be the exception to the rule and a trip to the local shop proved to much and my heaving for breath in the shop drew stares from fellow shoppers.
That is the thing with this illness there is no predicting the good days so you cant plan for the future very well.for most of the day I have had to stay close to Oxygen so I wasn't able to do much.The kids are bored already and the holidays have just started.But today my daughter felt ill with a headache and didn't what to do anything anyway.My son spent some time cleaning up his room and my wife spent time recovering from lack of sleep due to stress related insomnia.
Life is on hold at the moment I will hope for better function as the week continues and hope everyone will feel better soon.

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