Transplant week Final thoughts

Before you go too far in this post you might want to stop now if you are just reading this for interest I will tell you how it is and pull no punches in the hope that you are moved to sign up to the donor register and remember I am better off than some who tonight are fighting for breath hoping for a new life.

Tonight I shall post some of the negative feelings that this week has brought up. Paint a picture of how waiting is for me, the restrictions and pressure that waiting has caused.


What is it like?
It is like drowning a few times every day.
Fighting your way to the surface,
hoping you will reach it.

Every day you have to consider what you can do,and what you are unable to do because of your breathing.

In the past the summer was my favourite time of the year a time to swim, walk in the countryside, a pint in the pub.The good weather signalled barbecues and fun with the family.

Now a barbecues and fires make breathing impossible, swimming would quickly turn into drowning, walks in the fields would lead to back problems for my wife pushing my wheelchair as any distance walking is impossible,A pint in the pub is no fun any more as the alcohol depresses my breathing and drunk and breathless is not a good combination.

Fun with the family is becoming harder and harder and as the kids grow they are forced to leave me and do things alone as getting parking near a lot of things is impossible.If I am with them I can watch them have fun.

The practicalities are numerous;

• where will you park, will there be a space?(not occupied by people who are too lazy to park anywhere but a disabled spot.)when I go out I need to stay near to my car
• Have I got enough oxygen with me?(a portable bottle lasts only 2 hours use)
• Have I got the wheelchair?( someone to push it?) 
• Have I got inhalers 
• Will there be toilets? (I am on diuretic tablets and need frequent visits)
• Have I got mobile phone my ever-present friend for when I get the call to transplant (can I get a signal)
• Have I had my tablets 
• Have I had my Nebuliser (I take this three times, sometimes more)or will I be out to late for it
• Will the day out last later than about 10pm when my breathing requires Oxygen constantly supplied by mains powered machine
• As you can see days out are a pain when I come along. So I often find I have to stay at home and not slow everyone down and any place requiring walking are a no go.

When at home:

• I have great problems with stairs and the walk upstairs at the end of the day take a great deal of drowning noises inter spaced by curses and individual steps are taken with a rest inbetween.

• Then there is my oxygen tubing this trails around the house following me like a tail and everyone has must be careful not to trip on it.
• When I am using my oxygen in the evenings and overnight is the worst I feel trapped and even moving around the bedroom cause me to become uncontrollably  breathless.
• I can't cook due to the heat and cooking fumes and I love to cook.
• I can't help with housework as I get to breathless.
• I can wash myself but it takes ages and washing and hair washing produces bouts of breathlessness that are hard to bear at times even with oxygen on.When I am breathing badly a shower on a seat across the bath with assistance is required.

I am so luck that I am as well as this.
Some people I have talked with this week are worse than this.
When I had an infection last summer I was also.But the worse part about this situation I am in is the effect that it has on my family.

My wife is a nurse and has looked after people all her life but the stain of having a husband who is unwell is wearing her down not though the practical issued but the mental effects and stress I see the look in her eyes and am powerless to help

The effects on the kids are numerous.They are unable to go out without a phone as I may need to contact them should the call to hospital come.I cant do the things with them that they would like to and the stress is ever present.they are lovely kids and I wish that I could do something to help but I cant.particularly when they are out with me they worry, having seen me have a Pneumothorax  where my lung deflated.

My children  think I may get unwell again and I cant be sure.
I push that out of my mind for most of the time.
But at other times I cry with despair and fear for the future 
I deal with things like a recovering alcoholic one day at a time

Anyway If you have made it this far in this post respect to you not many people like to read about illness as it forces us to confront your mortality. Now I will ask you to do just that, If you die would you really want to let your organs go the waste in the ground or polluting the atmosphere as more greenhouse gas? 

Please consider signing the organ donor register and save another life when you have gone. After all we don't know what will happen in the future.This is the most selfless gift you could give to another human being be a hero and give the gift of life finally If you do sign the register please add a comment to this blog to let me know  even if you don't it is nice to know someone is listening.

  UK Donor Register

Family make a Weekend

I had a great time this weekend I managed to see my eldest daughter who visited on Saturday she had been abroad skiing in France doing a season, and is going away at the end of June to a job in the Alps.It was so good to see her but never enough time to catch up on all that she had been doing. We have kept in touch via Facebook and email and I am glad that I am able to.

Life on the list for a transplant brings home to you what is important in life.
Family,the people you care about and your friends.They are the people who visit you, send greeting cards, phone and text you in the real world, who you talk to face to face.
Human contact is so important sometimes we forget that. When we say friends we may mean people who follow us on social networks on twitter or other on-line forums. This is true of young people, even my kids, who say I have x number of friends on Facebook.
That is not to say that those people cannot become friends.In fact some my friendships have developed online and given the restrictions of my illness it has been a way to connect.The people at Transplant cafe have been a great help with support when I have been turned down for transplants due to unsuitable organs,they know what I am going through.People at My Shutterspace where I have posted photos and have sent positive comment about them are great .Also the people who meet at the chat room of COPD international and supported me when I was in a wheelchair and had a tube hanging out of my chest wall despite the time difference to America.I would recommend all these sites,but I would recommend email more for relationships

One thing about the social media is the loss of person to person direct contact. The most enduring  relationship I have had has been though email it might be out of favour but try it again it works,whatever site you are on and is private, two people talking. I have been in contact with a very dear friend since 2007 via email (Sue you know who you are!) and we have shared the ups and downs of our lives and I am so glad.
Try this, ask your friends for there email or mobile number and talk with them direct, not to the public internet, stronger relationship develop that way and you don't have to watch adverts while you do it.
 
I see people on line craving fame, with a look at me attitude. Hoping to make money and get things easily or with little effort with the belief that when they have all these "things" and money they will be happy.It brings to mind a saying I heard when I was growing up in the punk era

"When the power of Love overrides the Love of Power and Money then we will be free"

A lottery win would do me no good to me now as it couldn't buy my health back.Nothing comes for free in this world,friendship is one thing that is,try developing  friendships that last face to face.
I watched a program on TV about a Irish man who received a Lung transplant and he said that getting a lung would be his lottery win.
I am still waiting for my lottery win and it nothing to do with money, thanks to family and friends who are keeping me going and the grace of God I will get there.

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