Nine months on Transplant Week again

It doesn't seem so long ago that I was tweeting for 2010 Transplant Week but lots has happened since then.

I didn't know when I was tweeting in July last year that I would recieve a transplant before the next transplant week I was like  @tor87  it was the not knowing that was the worst.

Each day waiting, every time if the phone went jumping up, because it could be the hospital phoning with a offer of possible lungs.The stress on the family was intense, the restrictions it placed on my children always needing to have a phone on them and let us know where they were.It was unnatural to young teenagers who should be out having fun. We were waiting for a new life but not sure it would ever happen. 

That is what it is like when you are on the list

Sadly @tor87 is still waiting and she has produced a video about her wait for lungs for transplant week, you can watch it here Victoria Tremlett  she has had seven calls and is still waiting. 

You can read her blog on this site on my blog list "Past the point of no return" 

What could we do to help her? 

simple sign up as organ donors go to the NHSBT site and register online Here

Other people are still waiting 

@asideofonions  who is waiting for a liver transplant 

@alex_f_lambert a toddler who is waiting for a new kidney

 

Mrs Kirstie Tancock an ambassador for"live life and give life" charity 

She was featured on Russell Howard's Good News and has just got married after being on the transplant waiting list for new lungs due to damage caused by Cystic fibrosis. 

She writes the blog "2nd Chance @ Life"

Kirstie is presently in Harefield Hospital transplant unit waiting on her last chance to get new lungs she is slowly deteriorating and will not see her first wedding  anniversary without help.  

Let us all hope she is fortunate and receives her lungs soon

 

For information sake the following is a estimate of waiting times for  organs from NHSBT site

Waiting time to transplant

I got my lungs nine months ago today.

I was fortunate that a 45year old man I never met had the foresight and courage to sign the donor register and let his relatives know his wishes. When he left this world, he left a legacy of a new life for me and others.

I carry his gift inside me now and  no longer breath though the oxygen tubing I depended on.  

I went to my Transplant clinic appointment at Harefield hospital today and it was good news have been told that I can have two months off clinic and got a agreement that I could go on Holiday to the coast in August to visit my wife's relatives and get a break.

Let me hope that the people waiting will not wait for long and that next transplant week the rates of organ donation go up dramatically and enable more people to get the transplant they need.  

Extra pressure on Clinic day

Had a Clinic day on Monday most of the day was positive.
I got to Harefield hospital a bit late because the wet weather caused the traffic to build up more than normal. I got my blood taken then had a appointment for a ultrasound of my kidneys prior to meeting with a new doctor in the afternoon.
My last visit the doctor had reduced my tacrolimus due to the fact that my kidney function was being affected hence the need for kidney check.I hoped that the results would be better than my last tests taken by my GP's that indicated a few abnormal levels in my blood .The last level of the tacrolimus was lower after the reduction, at 9.1 but not by much.

After the ultrasound and X- Ray was done I went to get some food and some coffee from the league of friends   before my lung Function test as I found that a drink helps, I also needed to take my morning medication.My lung function was okay, not great but,similar to my last clinic visit .I am always worried that something will cause concern for the doctors and most recently this has been my lung function tests!
I was told to come back at 13.30 and spent the dinnertime with a toasted sandwich, a tuna roll, Daily mail and a copy of Micromart magazine. I thought I might have bumped in to someone I knew but on this occasion  it was just me, by the afternoon it was all I could do to stop my self nodding of while I waited for the transplant doctor.

When I got to the appointment with the doctor he was happy with my results and informed me that my kidney function had improved, but the tacrolimus level had been 10.2 and so he wanted to reduce my dose again by 1mg a day and asked me to get a check the following week at my GPs' I was happy with this and asked him if he had any thoughts about me going swimming this is a activity I love! He said that it would be okay but not to swim in rivers or lakes as the risk with lowered immunity would be high.

I then went to my appointment with the kidney doctor this was okay but he did have some concerns he agreed that my kidneys were functioning better but he was worried about my blood pressure, was something I had noticed had been higher lately.He told me that this would put a lot of strain on my kidneys combined with the essential anti rejection.
His solution , Blood pressure tablets! I was not keen, but he has put me an a small dose and will see me in three months to review. I was concerned that there would be side affects but at present apart from a sight headache when I started them they seem okay.I am now monitoring my blood pressure daily  and will have to get a blood test at my GP's in a couple of weeks time to check my blood chemistry is not adversely affected.

So now I rattle a bit more due to more pills but as I have been given month off clinic I should be grateful :)
I hope that when I go to my GP I can discuss my need to lose weight and find out if he will help me with a prescription for a gym as a friend of mine at the same doctors was offered this fingers crossed on that

 I am just glad thanks to my donor that I am able to be thinking about swimming again something I thought I would never be able to do again :)

 

Please remember if you have not registered as a Organ Donor please do so by clicking on the heart at the top of the left  hand column of this blog 

Go to the Website   NHSBT  to find out more about transplants 

If you are interested in helping raise awareness of organ donation you can find out more at Transplant week