18 Months Of New Life With New Lungs

I have now been transplanted 18 months and time has rushed by!!

It doesn't seem that long ago that I was kissing my wife and children goodbye at the operating theatre doors not knowing if I would be saying goodbye for the last time.... and then waking up to a new life.

This last week I have been spending time with my children as they are on half term If it wasn't for my donor I would never have made it to this point. I have been able to see them through to the finish of their education at school and I am able to watch them move on to further education,  my daughter is now half way through her A levels and looking forward to university. While my son is has a offer to start a course in furniture making at the local further education college in September and is really looking forward to it.

I have also had the pleasure this week  of celebrating 25 years since my wife and I first met.

She was a general nurse student on her placement in my hospital, I was a third year student looking towards my final exams. It was her last night at the hospital before returning to Eastbourne where she was training when fate brought us together. We spent that evening  in the hospital social club getting to know each other, it was love at first sight.

 We have been seeing each other ever since and  I love her more with each day we are together

We married while I was waiting for my lung transplant and will celebrate our third anniversary in October, just after my second lung transplant anniversary       

I cant say that it has all been a easy ride I had some problems early on and then got shingles last year and it has taken a while for me to feel myself again and get my confidence back after a long period of chronic illness. I had a long list of things I would do,some of which I have done some are yet to come. 

 The most important have been the little things like; 

• Walking up stairs without worrying about breathlessness.

• Not needing inhalers for my asthma that I suffered from for most of my life.

• Being able to go to events and activities with my children,without them being embarrassed about my oxygen tanks and breathlessness,

• Cooking food on a barbecue or even being around a barbecue without choking and coughing.

• Having confidence in my abilities to look after myself again 

• Being able to have a bath without help

•  last but not least, being alive and not scared that I will die 

All these things are the result of a courageous man who thought about others and his love ones who consented to his wishes..A 45 year old man who I will always be eternally grateful to, signed the donor register and decided that that someone should  live after his death.

I am one of those people!!

Other good things that have happened this last week is that I entered the annual portfolio competition with the following pictures 

Fun at the Fair

It was judged the best digital entry and won first place!!! 

I was so happy this is the second time in four seasons that I have won first place in the digital portfolio:) 

First time I won was my first year in the camera club I have included the pictures that won "my village" in 16.4 2009 before my transplant 

The girl in yellow dancing around the maypole on the right of the picture is my daughter when she was much younger at a school fete at her primary school

I would also urge you to check out the "Transplant People Daily" available by scrolling to bottom of these blog posts now, where you will find an embedded widget.

If you like it please feel free to subscribe:)

Finally I would like you to consider Organ donation if you have not already.help someone like myself or one of the great people I follow on this blog to live a happier and more productive life

You can click the heart here and register now in the UK

Life Gets Better and Better

Life is getting better for me after my hiccup over Christmas with the missing bloods!! My body seems to have settled down again and the swelling in my legs has almost gone away. 

It was cold, there was snow on the ground and it was very early when I went to clinic!!
I attended Harefield Hospital again on Monday and visited the kidney consultant.
He was very happy with my kidney function and told me that things had improved since the dip in January he told me that I didn't need any increase in my blood pressure tablet at present and was happy to leave it 6 months for my next appointment which will be in early August.

This was great to hear and a real boost for me as I had been worried my kidneys were feeling the strain of the anti rejection meds.

 While I was there I also had a Heart Echo done (a type of ultrasound of the heart) This was something that my transplant consultant had suggested to discount any heart problems that would lead to my legs swelling.
It is a very disconcerting experience seeing your heart beating on the screen in front of you while measurements and reading of blood flow are taken by the operator.
The result of the echo -  it seems is that my heart was in good condition and no cause for concern which was also reassuring , so I have a good healthy heart, good kidneys no blockages in my leg veins and the levels in my blood are all within normal range for me!!!
 
I had not had a echo done since my transplant assessment back in January 2009 and it bought back memories about how I felt then and of some of the great people I met then . I wondered if they had been lucky and received their transplants or had they become statistics, one of the three people who die waiting on the list every day.I live in hope that I will bump into them one day in clinic.

One of the good things about the visit was that I was able to meet up with some great people who were up for their clinic appointments that day
 The first was Justine Laymond who was up for a check prior to her latest refresher session for the Clipper round the world Yacht Race that she will be joining soon.She will be sailing the last Leg 8, she will cross the Atlantic and log over 3,750 miles. to Southampton from New York, finishing in July.
She admitted to being excited and at the same time a bit terrified of the prospect of the race, and being the first double lung transplant recipient to take part in the history of the race i am not surprised!!
She is joined by Holly Cocker who underwent a kidney transplant in 2008 three years on she will take on the challenge of a lifetime. Signed up for Leg 7 she will log over 5,000 miles during the races from California to Panama and then on to New York, just before Justine's leg.
I so respect them both for doing it and wish them all the best :-)  you can learn more at the website
Clipper Round The World Yacht Race

The next was Richard Burbedge with whom I attended the speakers project run by LLTGL I talked about him in a previous post he was up for a routine check and looking forward to his upcoming run carrying the Olympic torch!! he is now 18months on from his lung transplant and doing well.
I also met up with another lung transplant patient I had met before at Harefield, Dawn Bostock who is active in campaigning against the NHS reforms being put forward by the government at present. 
She was also happy healthy and doing well. 

Finally I was able to meet  Kerry Maletroit who was up for a clinic appointment after her very recent (11 weeks yesterday) life saving transplant.She  has been attending weekly while she recovers. Kerry was looking great! healthy and happy and recovering very well considering how ill she was, I was so happy:-)

I had a chat with another very new  lung transplant patient who had just received his new lungs 4 weeks previous to his clinic visit and was able to support him with some reassurance about the future and what to expect with meds, side effects and other issues.
I also made a new transplant friend when I met Andy Healy, one of justine's friends he is 10 year on from his lung transplant for CF and it was nice that we were of similar age.
I didn't feel so bad being surrounded by young athletic transplantees like Justine and Richard.It was one of the best clinics I have been to in a while :-)

I will not be back at Harefield till march now, I hope then my frequency of visits will then decrease

This Thursday I have another competition at the camera club the" letter X".
The  previous one was an open subject competition and I put in the following pictures. I have include the scores for the first two but you will have to wait and see what score I am awarded for the two in this weeks competition  for the letter X?
Watch this space.......

Up an away - scored 17/20

Cholsey sunset -scored 16/20

X  is where we cross

X-wing fighter (star wars

 


 

One year ago my life started again

One year ago today I was wheeled into a operating theatre in Harefield Hospital breathing oxygen to stay alive, and because of a selfless 45 year old man my life was saved, I woke up breathing though new lungs.
I was so ill I would not have been here to write this post, my lung function had dropped to 13% I had suffered four collapsed lungs and nearly died from swine flu.
Then I got a call and my whole life changed.
I cannot begin to explain how bad my life was back then how hard it was for my children and my wife watching my life ebb away.You can read the posts from my blog before 4th October 2010.

But if you want to hear from people still waiting please read the blog posts from

Past the Point of No Return  &  Come walk in My Shoes 

Both these women are living life waiting for a transplant. Because of the fact that only 30% of people in UK are signed up to the Donor register they will wait longer than they need to :-(

But there is hope, you can sign the register

         NHSBT Organ Donation Register      

I have been  recovering well from my case of shingles and the pain has all but gone.I am on a course of anti viral tablets for a couple more weeks but on the whole I am well and happy.
It is almost like I find it  hard to remember my life back a year ago before my transplant, as it feels like a new life I am living now.
Yesterday I attended Harefields transplant clinic for a check up it was all good news,my lung function is stable my blood results were not a cause for concern,my weight is stable (but more than it should be) and my kidney function is no worse than it was.
I was given a green light to go swimming and I asked about going fishing again and was told that with good hand hygiene and care it would not present any problems for me. With a year behind me now my risks of rejection are less now,and so given my results the transplant Doctors were happy to leave me to visit clinic in three months time and the kidney specialist suggested six months till my next visit to see him. finally I attended the GP surgery to get the final issue sorted in preparation for the cold weather that we are told is on its way.I joined the line of the over 6os and ill for my Flu jab.I am all set now and hope that my next visit to hospital will be next year:)

A sign I wont see till 2012 (I Hope)

         

Clinic day Party

I attended Harefield transplant Clinic today hoping that the improvement that I had seen since my last attendance had been maintained I got there early and had my bloods taken and the usual:
Temperature           -Normal,
Blood pressure      - Okay,
Oxygen saturation - Good
Lung function        -  Moderately better than my last visit
X ray                   -   Appeared good
Weight                 -   Not good, I had asked the nurse to convert my weight into Stones from Kg wish I hadn't     I have put on about 20kg that is nearly three Stones more than I should be.
What a fat git I have become!
I must record my weight in stones in future as it has more emotional impact on me.
Oh and eat less as well!

During the morning I met up with Russell Willis (@russwillis) and Dora, who I had met on the ward after my transplant. They had popped in for some blood tests,and  we had a chance to catch up.
Also I had met up with a fellow transplantee Richard Burbedge (@AwoogaBurbs)
who was there to have a gastric acid monitor fitted, a procedure that I have also had. I told him that although it was a pain to have done the benefits out weigh the discomfort.later that day I met up with him in the league of friends pavilion and was impressed by the way he was able to eat some food, a feat that I had trouble with until the evening.
Then I got a text from another double lung transplant lady who was also at Harefield for appointment
Justine Laymond (@LamLungArtist) who was accompanied by a friend of hers called Dawn Bostock and another man Steven Steel who had just received a lung transplant earlier this year and was on the ward waiting to go home  after a short admission.
We took over a large table and  sat around comparing notes on our transplant experiences and I felt for the first time that I was doing better than I had thought with my recovery.
I felt very privileged to be  part of a group of people who owed there lives to the skill of the surgeons in Harefields Hospital and the selflessness of those brave people who donated their organs so we could live!
Later that day when I went back to see the Doctor he conformed that he was happy with the improvement I had made  and suggested that if I could loss some weight it would help me with my progress,he also reduced by a small amount my anti rejection medication in the evening which was another positive move.
I left in a very positive frame of mind with another appointment for three weeks time to get my kidneys checked on the day of my next visit.
All in all I had a good day :-)  

Oxford Outpatients and Risky Business

Spent a day today at  my local hospital where I attended a outpatients appointment to check the state of my blood gasses and recovery after my recent respiratory collapse. I had tried to attend when I left Harefields last weekend but due to the large dose of steroids that I was on I had really upset digestion and had to cancel.
I had a blood gas test done and this showed normal levels of CO2 and normal sats.
When I saw the consultant she told me that she was very surprised that my levels had returned to such a good levels so soon, this was a very positive outcome.She said that she felt my problems were a direct result of the build up of CO2 and not as a result of infection as has been suspected.
This combined with the fact that my bronch has not shown any abnormality was very reassuring. She also said that my lung function was okay and that she was very pleased with my progress.We discussed how well I was coping with using the Bi Pad mask I said I was happy at present, but long term I would like to stop using it.
An agreement was reached for a 6 week follow up appointment to see how things progress and then a discussion could be had about trying to come off the mask if things continue to improve.

This last couple of  weeks I have been finding it quite hard. With the weekend in Harefields for biopsy and the worry about rejection, then relief to find that there was no abnormality found. Then having to cope with the high level of steroids and reducing those.I have not been good company for my family.
One thing I had not realised  is how stressed and irritated I have become, and my tolerance is at a low ebb!
This is something that requires a ability to let things go, a skill that I am lacking at present. I find that my irritability builds up too quickly till I find myself moaning and losing it about stupid crap.I hope that when my Prednisolone level return to normal so will my moods,I hope so.
Somehow I feel that my life is no longer my own since my transplant. The constant checking of  levels, temperature, lung function and weight can be a pain, but I am so glad for the ability to use and support these new lungs and keep them working well.
I need to find a point where I work with the new feelings that living with these new lungs causes me, but also incorporates my individuality  into back into my life. I feel that I have been too worried about the risks involved in the transplant process and now that it has happened I need to take more risks with the new life that I have been given.
To quote one of my all time favourite movies
   

Risky Business (1983)

Miles:(Curtis Armstrong) gives Joel Goodsen (Tom Cruise) some advice 
" you wanna know something? Every now and then say, "What the fuck." "What the fuck" gives you freedom. Freedom brings opportunity. Opportunity makes your future.
"Say "what the fuck."... If you can't say it, you can't do it." 

So in the future I will try to remember another quote from Joel Goodsen (Tom Cruise)
"Sometimes you just gotta say, "What the fuck, make your move." 

Recovery confirmed

I continue to recover from my brush with CO2 poisoning recently,and attended a check up at the Churchill Hospital where I was fitted with my Bi pap machine after my discharge at the end of  January.I have been wearing the mask every night since then .I was hoping it was removing the CO2 in my system overnight,but I had not had confirmation of that fact and was feeling a bit worried.
I was seen by one of the sleep nurses who offered to answer any questions that I might have about the equipment. I mentioned that I had broken part of the mask after a week of  using it and she kindly bought me a new mask and suggested methods of cleaning the water tank that humidifies the mask .

She then stuck a needle in my ear to check my capillary blood carbon dioxide level,which sounds bad but on the whole it is painless compared with arterial blood sample from the wrist which is one of my pet hates.
It look very little time to check that the Bi Pap was doing its job well and my CO2 level had been reduced to normal levels.This was great news and I felt relieved that I was not in danger of a collapse again.I have another appointment with the doctor at end of March so I hope to find out more about the long term plan then.But on the whole I was relieved and went home happy!
 
With this recovery confirmed  I decided to start doing more exercise. Sunday the weather was good I took opportunity to walk to the local shops for a paper and some bread, it was much further than I had tried to walk before and as I set out I felt quite a lot of apprehension. Would I be able to make it? I started to get worn out at the half way point, but I resisted the urge to stop and continued on.When the shop came into view I was over the moon and was able to catch my breath while in the shop I searched for a paper for my wife and a loaf of bread.

I bought a sandwich and sat on a bench near the shop and ate it before I attempted the return journey.I didn't have any food before I left and I have found that if I don't eat after my anti rejection medication in the morning it upsets my digestion. I started back home but about half way the road was inclined slightly up and the bag of bread and the Sunday paper was quite noticeable on the return journey and I felt myself slowing down.when I did get to my house I was breathing heavily and it took a while for my breathing to return to normal,but I had done it,I felt great.

I had thought that I should be able to do the walk easier than I had, but then I was reminded that in the last five years the prospect of a walk to a shop down our road was beyond me, so I felt happier and I resolved to do much more walking as the weather gets better and as my strength increases, and  look into other ways of building myself up again as I gain fitness such as swimming and maybe some weight training.  

Walking to the shop for the Sunday papers is not a big deal.

But I am reminded by this walk to give thanks to my donor who has given me the chance to walk again!
If you haven't signed the organ donor register please consider doing so.

Give someone else the chance to walk again please
You can follow the link at the top of the blog on the left hand side, the flashing heart !
It is sad to remember that still only less than 30% of the population have signed the register