Friday, April 29, 2011

Some Good news & Some Bad

Just thought I would report the outcome of my visit to get my blood checked again.As you may remember I had a question mark over my last blood results at clinic so after the long weekend I attended again and had a repeat test done to see if I had CMV virus
I have to admit that I was concerned that after the negative result from my impedance test I had got off lightly and had a feeling that this blood result was my pay back.
I got my blood test done and observations and was told to ring later in the day for results.When I did call late in the afternoon I was told the news I hoped for but didn't  expect,the blood result was NAD (Nothing abnormal discovered).I didn't have any nasty virus!
I was free for another few weeks from clinic but it brought it home to me how negative I had become after all the ups and downs since my transplant and I resolved to start to search out the positives in my life and doing more to enjoy the day to day.
Other things that have happened since the clinic have been good news for some people bad for others.
My friends Tracy (@DaisyAngel52) and her husband Dave who was having problems with reflux causing damage to his new lungs. Has been successfully operated on today and is presently recovering. I hope that this will help him back to full health again and I wish him a speedy recovery.
Other people have received bad news. I learnt that @Tor87 who writes the blog Past the Point of No Return on my blog list  has received her sixth call for possible transplant that didn't go ahead I really feel for her as I know the emotions it provokes in you afterwards (my call was number 8)
She is 23 years old very unwell and suffers from CF she said on Twitter
"Just home after call number 6. Feel numb inside and in pain everywhere else. Thinking of donor x"
I really hope that the call that will transform her life comes soon and I am sure that she would appreciate some support!
 You can follow her on twitter read her blog and if you have not already signed the organ donor register, please do so here Donor register
 The man who saved my life was not much younger than me at 45 years old. I would not be writing about it now if he hadn't registered his intention to donate his organs
If you are registered send a link to a friend who isn't.Please lets make a difference for Victoria.
So as you can see I have nothing to worry about compared to others! 

Friday, April 22, 2011

Results Neutral,Blood will have to flow

Transplantation is a series of ups and downs, I have heard it compared to a rollacoaster!
Today I got some good news regarding my test for gastric reflux I was told that the sensor that I had to carry for 24hours had resulted in a normal reading of PH in my oesophagus and therefore there was no need for any intervention.I breathed a sigh of relief, but maybe a bit too soon as you will see later.
The intervention that was indicated was to lose some weight and become more active! 
This was something that I had realised was a problem as I have seen my weight going up steadily since my transplant, my stays in hospital have compounded the problem. Steroids have also lead to me eating more than I would have done in the past.Losing weight was a better alternative than a possible operation that I thought I might be needing, so I counted myself lucky.

The day was good and despite the fact that I was stuck at Harefield I had a chance to meet up with some people during the day.
The first people I met were @DaisyAngel52 and her husband Dave.He has been having problems with reflux himself ,but hopefully will be getting his operation in the near future.They have been so supportive since my transplant and I wish them all the best and hope that their problems will be in the past very soon.
The second person was ClareLauwerys who I have been tweeting with for a while.We managed to meet up with during lunch time at the League of Friends cafe and I had a good chat with her

I hoped to leave quite early after I was given a month till my next appointment by the consultant and which was great. I had seen a surgeon about my scar before I left as a small area of it had become red and so he had prescribed some antibiotics which I had to collect from the pharmacy.
After we got the pills I got on the road quickly as there had been indications that many people might be travelling today for the Easter weekend ,as it was these reports were groundless and we got home really quick.

As we arrived in our village my phone rang and I received a voice-mail from the clinic to tell me that the consultant had requested my next appointment be made a week earlier. Only three weeks till next visit. I was disappointed but reasoned that this would not be too bad.
Then my luck changed, and not for the better. I got another phone call from the Nurse in clinic who told me that one of my blood results had shown problems they needed a repeat blood test to check for CMV just what I needed. It seems that I will be visiting much sooner than I thought in five days time!!

It seems that this rollacoaster after going up for while, has  gone in to a dip again. Hold on to your hats!

Let us see were this ride takes me now?   


Wednesday, April 20, 2011

Harefields for Test Results of Impedance Study

Tomorrow I am back at Harefields for the the results of a quite important test that I had done the last time I was at Clinic.This could result in me needing another operation if the results are not good,I am worried and have not been the best company the last couple of days as I have been preoccupied with the outcome.
Those of you who follow me on Twitter or Facebook  may have heard about the test I had done but for those who don't I will explain about what I had done and why.
During my last stay in hospital I had several tests done including biopsy,CT and bronchcoscopy there were no abnormality found regarding infection or results from biopsy.The CT scan had indicated there may be a problem with my oesophagus closing off completely, and  there was a positive result for a test called oil red stain. This I was told could indicate that I was having gastric reflux and  the way to find out was a impedance study.

This sounded interesting what did it involve?
 I was asked to attend the respiratory function and I was fitted with a nasal gastric tube containing several sensors along its length, this was then fed into my nose down my throat and into the oesophagus  stopping short of the stomach this was then attached to a monitor box which I wore over my shoulder for the next 24hours I was told that I had to push buttons to indicate when I ate and when I slept and other buttons if I experienced any pain or discomfort lucky for me I didn't.
The whole process was irritating to say the least and I was aware of the tube for the whole 24 hours and I  tried  a sandwich just after it had been fitted  and after had a soft diet for the rest of the evening.Liquids were okay but taking my medication proved to be easier than I thought it would be.
By the end of 24 hours I was wanting to pull the tube out myself and I do admit that when it was finally time to removed it was bliss!
The League of Friends did good business as I stocked up on bacon and sausage rolls and cheese and ham toasted sandwiches that day before I went home.
Why would I have this done?
 It seems that sometimes people can suffer from reflux from the stomach and this can get into the lungs and cause damage, encourage rejection and infection.This has happened to another lung transplantee I know this problem has caused him a great deal of heartache including a need for radiation therapy to eliminated his immune system to deal with rejection problems. So I was aware of the issues that could occur if it was left, and I was happy to find out earlier rather than later.
I am hoping for a positive outcome  but if it turns out I have a problem it can be treated using a operation to wrap the stomach around the top of the oesophagus this is done using keyhole surgery and stops the reflux getting into the lungs.
I must admitted that the whole process is wearing me down and I long for the day when I will be able to take full advantage of my new lungs and see my lung function improve and continue to improve.
I have improved, but in the back of my mind I worry that things might go downhill again, I need to get better than this and hope that a solution can be found as to why I have not.

Fingers crossed for tomorrow watch this space for the next instalment!

Friday, April 8, 2011

Six months Post Transplant Thank you

Six months ago I was in ITU recovering from my lung transplant and awaiting a move to the ward on Harefield Hospital where I spent time recovering.
Can it only be that long? It feels like a lifetime and it took a lifetime to get me here.
A lifetime that my donor gave me.
A man not much younger than myself, who's life ended.
He and his relatives were unselfish and had considered what may come after the end of his life.
They offered consent for  his organs to be used so someone like me could live a better life

I would like to say Thank You to this unknown man who saved my life

Your lungs expand inside me and I take joy in the experience of a deep breath.
I can walk and catch breath without panic.
I have left my oxygen behind, my wheelchair is gone.
I can walk in the sun.with my children
I can enjoy a bath or shower and wash my hair without breathlessness
Stairs are possible,lifts are optional.

Six month on I am starting to feel like my old self again but a self I had lost to illness a long time ago
I have had some problems along the way as anyone who has read this blog knows.I still have a long way to go and the journey is hard but thanks for the chance to try

I have met some great people who have been transplanted and helped me with the journey.
People who have been waiting and are still waiting who I hope I can support  as they wait.
Finally the great people who support all those people involved in the transplantation process the Nurses Doctors and relatives and the many selfless people who raise awareness for organ donation.
Thank you all

As I look forward to the next six months I would love to report that all the people I know have had a successful transplant and are doing well if you agree with this sentiment please sign the register for organ donation if you haven't already.If you have please talk with your friends about organ donation, show them this blog if you like, you could raise awareness on your facebook page or twitter.

Lets get the message out there
Organ donation
Give the Gift of life

Three people die each day waiting for a organ to be donated. 
Only 28% of people in UK are on the organ donor register

Tuesday, April 5, 2011

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."