Tuesday, November 23, 2010

Clinic Day (Break for a Week)

Went of to my third clinic day yesterday and it was decided that the breakdown of the wound that has been causing some concern would benefit from some antibiotics so I have been put on flucloxacillan for a week the positive is that they feel that I do not need to attend till next Monday which means we get a weeks rest.
This will help us both and allow Liz a break from the constant driving back a forth.It was a bit hurried  and we were rushing about at the end of clinic collecting medication to last the week. I hope this will allow us to recharge our batteries and get sorted at home the whole process has been a great drain on all of us.

I am starting to feel that my body is getting back to a sort of normality and walking on the level is feeling okay now. Stairs still feel hard to do, and I am aware that I will have to do a good amount of exercise before things feel back to how they were before but I have turned a corner now,and hoping for a gradual improvement from now on.

Got a call from my GP this morning saying hello and congratulating me on my recovery he was letting me    know that he was available for any problems that I may need help with and it was reassuring to hear.

Slowly life is starting to get back to a rate of change I can cope with. Now is the time for contemplation, I had thought about the donor several times during the process, but I have made up my mind that I will ask about the donor at my next clinic appointment, I want to  know more about them,this person who is keeping me alive!!

Other thing I have started to do is think about what I will be able to do now.
How will I use my new mobility what do I really want to do?

It is a shame that the weather is not the best at this time of the year therefore I haven't been able to get out as often as I could have in the summer but I am looking forward to short walks building up to longer walks in the near future I will try to get to some shopping centres where it is dry and warmer to practice.
On the whole though I am just so happy to be breathing and well!

But let us not forget those who are still waiting so if you haven't registered as donor click the link on the left hand side of the blog on the flashing heart.
If you have, please ask your friends to look at this blog and tell them the benefits that transplantation can give. 

Thursday, November 18, 2010

Getting On With It!

While I have been away things have carried on in the world at large and now I am home again, I don't know how and where I will fit in now?
I have potential for a new life I am still recovering and the doctors say that could take up to 6 months to finish all the healing my body needs to do.
My body is still fixing itself.

This was brought home to me today as during the night my wound sprang a small leak that required dressing in the Transplant Clinic today at Harefieds.This is my second visit back to clinic since I left and I shall be making many more visits to ensure that the lungs I have been given are looked after and monitored for any signs of trouble that could indicate a bout of infection or rejection.
People often think that when you get a transplant you are cured of the problems that you had truth is you swap one condition for a new condition.

You get a Blue book and you write all your drugs in it each day then you tick the book when you start to rattle after take all your medication.
You also weigh yourself daily a 1 kg increase may spell trouble.
Take a temperature each day If this rises over 37c it could indicate infection,
you write those readings in the blue book
You are given a  Spirometry machine and each day you blow into this to find out if you lung capacity is good this produces two readings, from this the doctors can assess you respiratory function.If these readings go down by 10% it could indicate rejection

For the rest of your life you wage war on your immune system with drugs that allows your body to tolerate the bit that isn't you! With time it becomes easier for the body to deal with this  but in the early stages it is hard on you and your body.I shake and suffer side effects and at times despair if things will get better.

But things already have.
I have new lungs I have seen them on the latest X-ray.
They fit snugly in my chest now healthy lung tissue extends from one side of the lung to the other.
There are no large holes or damage to the areas though which I exchange my breath with the world.
I am so grateful for the gift but I am impatient patient  

We met up with @russwillis  and Dora at Harefields today they were at clinic to and looked a bit fed up with being there but it wasn't long till we were all on our way blue books in hand. With the hope of a relaxing weekend to come.
It will be back to clinic for us on Monday and Thursday next week again, we were given a bag of dressings to sort out the wound care out and bid farewell to Harefields till next time.

Please remember if you haven't signed up on the donor register please do! or tell you friends why they should

Saturday, November 13, 2010

Discarged! First day home

After a lot of sorting out on Friday and a last minute rush for medication I was able to go home with my wife I had a shower before I left which tired me out and packing up all the stuff took a while but eventually we were on the road back along the journey I had done so often before my transplant.
I was surprised that riding in the car was quite so bumpy and by the end of the journey I was suffering with a few aches and pains requiring pain killers.we left some chocolate fancy biscuits and a card for the staff who were really helpful and kind.
Liz was able to park the car near the ward and despite the fact that my feet were still quite swollen I was able to get in and we left with my mum in the back helping us with the bags.the weather was wet and cold and by the time we got home I was quite worn out.
It had been five weeks and five days when I woke up in my bed today. I had some apprehension about being at home and after so long and after coming in last night had stayed upstairs but it was great to be at home. I woke up a bit late and did all the relevant medication and had some breakfast and spent the day getting used to this new way of life.
I spent some time on twitter and managed to talk to another patients husband @russwillis that I had met while I was in hospital. He had seen my picture in ITU and realised it had been taken in Harefields he contacted me and congratulated me about the transplant His wife had been a patient on the ward for heart transplant.Then about a week later he tweeted to say that his wife Dora had been admitted for a short admission and we were able to get together and share info about the transplant community and he gave me his blog address TruefallNess and a couple of other sites such as  Twitter times as luck would have his wife was discharged the same day as I was, which was nice as she was ready to go too and also hoping to get home.

I was also able to meet someone else who I had talked to on another site that i am a member Transplant Cafe her husband had his lung transplant at Harefields and early on on my time waiting she had been very supportive about  my missed calls now it was time for me to be supportive as her husband had been having some problems I offered my support and will continue to offer a ear to her worries in the future and hope that things improve for her and her husband in the near future.It was so kind of her to pop in and offer congratulation.
I will be back at Harefields on Monday for the transplant clinic and will be spending a lot of time going though checks for the near future  gradually I am understanding what a change this will be in my life but also what a precious gift I have been given and would like to say to anyone who has yet to register as a donor please click on the flashing heart link on the left column to go to the form and offer a gift of life. Remember that if you do sign up please let your relatives know your wishes as they will still have to give consent and that will help them if they know your views.

Tuesday, November 9, 2010

Testing Times Today

Today several things changed. The doctors seem happy with the amount of fluid that has been removed using the iv diuretics I have been having and have changed my medications to all tablets.Allowing the last tube in my arm to be removed.
I as so had a day of investigations designed to check the underlying function of my lungs firstly I had another respiratory function test that found my lung capacity is now  FVC 2.00litre  I found it hard to do the test and couldn't get my breathing to do what I wanted it to. But after instruction I was able to manage it.
Then I was called to go for a CT scan  which I managed reasonably well but again took a while getting used to lying flat this was solved with a small amount of Oxygen.
Finally I was told that they would be doing another sleep study to see how my body was coping with the retention of Carbon Dioxide overnight and this would be off the Bi pad machine  that I had been using.I took my instruction from the man who delivered the machine so that I would be able to get good results from this study for the doctors to make a decision about the future.
The future is still being decided but I get the feeling that given positive results, and the praise I have received for my progress, that home may be a strong possibility in the near future.

The other thing I thought I mighty do would be allow those people who wish to to view the final scar as left by a bi-latereral sequential lung transplant I have provided a link to the photos as I don't think everyone will be interested  Please click HERE if you want to see my final scar and a second HERE

Sunday, November 7, 2010

I started a new Life! Spot the difference

I decided that today was the time for another picture of me for people who follow this blog.The purpose of which is a spot the difference to other pictures that I have posted.
I wonder how long it will take people to notice the difference please post your suggestions as comments on this post and lets see who is the first to get the right answer? You may need to post anonymously as certain people have been having problems with comments on the blog just add your name at the end of the comment.Good luck!! 
As you can also see I am really happy and I hope it will not be to much longer before the doctors agree that is time for me to have a bit of time back home.
The process is far from over now as the monitoring process starts now to make sure that the organs are kept in good condition and initially I will be travelling to hospital as often as twice a week for checks on medication levels and other checks which will continue for the rest of my life.

At present Harefields Hospital has 1200 people who are receiving follow-up care after transplant the longest being about 20 years post transplant the club here is called the hamster club hence the hamster on the bottom of the blog if you haven't seen it, scroll down to the bottom of this screen and give it some of its food.
 I am so happy to be joining them as one of the next generation!

Please don't forget if you have any questions I also have a formspring form at the bottom of the blog where you can ask any transplant related questions you have. if I don't know I will try to find out.

You can ask me something about how I feel about the transplant if you like although I might not know at this stage as the whole thing is new to me!

Thursday, November 4, 2010

The Golden tweets Award please vote and get your friends to!!!

As you have have been following this blog you will be aware of the progress of my lung transplant recovery what you may not be aware of is that while I was waiting I had entered a awards scheme called the Golden Tweets.
this is a user led award that allows people to be voted for by their followers in several categories.
I had put myself forward In a couple of categories that I felt were appropriate one was Writing for the blog and the other was Private individual I had forgotten about the award because of the transplant becoming available and then realised it was coming to the end of voting so I got on twitter and asked some of my followers to vote before the end of voting.

When the voting finished it seems I had been successful in coming in the top 3 out of 183 people so now I am a finalist :)

Not only that but another person that is also waiting for a double lung transplant has also got into the finalist category for writing this is my fellow blogger who writes "Past the point of no return"  Victoria Tremlett  She suffers from Cystic fibrosis and has been waiting a long time for her transplant.

What can you do now????

Vote and vote again - Help us both get a voice for people  waiting for transplants:

Cystitis Fibrosis people

COPD people

Heart transplant People

Kidney disease People

Liver transplant People

People sitting at home waiting for the phone to ring willing it to ring because it may mean a new life for them
scared that it may not ring and they will die waiting -Three people die each day Waiting for a organ that never comes!!  

This link Golden Tweets tell you what happens now

You have till the 25th November to vote again and make sure that the voice of those waiting for organs is heard and give me the chance to raise awareness for donors and registration

UKCybernaught -Private Individual 

Tor87 -Writing 

There are other people in the voting and I will leave it to your judgement as to whether their reasons are as valid as organ donation awareness allowing others the gift of life I have been given and Victoria so desperately needs.

Please help and I will try my hardest to get fit in time for the award in November so I can add my voice.

I am presently in Harefields Hospital  recovering. On Ward E  

 I ask this not for me but for all others waiting now somewhere in the UK tonight waiting for a phone to ring!!! 

You can also sign the register HERE

Monday, November 1, 2010

The fried breakfast principle

Seems that fried breakfast is the most appropriate gauge of my recovery on the first week I found out that full cooked breakfast was serviced on Sunday so the first week when I was in ITU I had my first taste and although I managed a bit I couldn't mange all the meal the next week it was a bit easier and I ate nearly all the meal but it was cold before I finished it.Last week I managed the whole meal and most was hot this Sunday I ate all the meal hot and even started on some toast to follow.I seemed to be on the way to a full recovery shame they don't serve any black pudding.
In the real word I have had a few ups and downs leading to a few investigations to find out why my Oxygen saturations were low

I had a bronchoscopy  Ultrasound of my heart and Diaphragm. capacity test and forced volume test and CT scan and then it was decided that I had a need for a chest drain in the pleura of my right lung that seemed to do the job and the sats are now improving

The other thing I have been considering How do I Express my extreme gratefulness to the unknown people out in the world that gave me this new chance that I have been offered in the world?  how can I tell the relatives of the donor how much I appreciate what they have done for me and my family?

It must have been such a hard time for them losing a loved one and still able to see the benefit  that the organs available would make in someone else's life I will do my best to look after the donation they have made to me and keep that piece of them alive inside me I have no words at the moment but I hope in the future I will be able to explain though a note if that is possible to let them know how much I respect their decision. 

Finally I had a shave today and so I thought that I would post a another picture on line so you could judge If you thought that I have improved as all the nurses say I have, and you can see my ugly mug again!