Natalie has done a great job of highlighting the importance of organ donation. Below are links to some videos she has featured in.
Hello my name is Natalie Kerr and this is my patient story,
In 2008 I was diagnosed with a rare progressive lung disease called pulmonary hypertension at the age of 26 whilst in labour with my daughter Isabelle.
Pulmonary hypertension is where the pressure in the pulmonary artery rises and the blood vessels in the lung become progressively narrow and ultimately the end result is heart failure due to the increased pressure on the heart.
There is no present cure for pulmonary hypertension, only treatments to ease the symptoms of breathlessness. I was given maximum therapy as my condition was so severe at the time of diagnosis; this included a continuous infusion via a Hickman line, oral vasodilators, combined with oxygen.
Only a little exertion left me gasping for breath and blackouts became a regular occurrence. My life changed from that of a busy surgical nurse to being confined to a wheelchair, sleeping a lot of the time and using a stair lift to get upstairs at home.
In August 2011 I was seen at Wythenshawe hospital for transplant assessment, I was greeted by a really friendly and warm team during my stay. I met all members of the team including the doctors, nurses, transplant co coordinators, physiotherapists, dietician, and social worker whilst I also underwent tests to determine whether I was suitable for transplant. The whole experience gave me hope and made me positive and excited at the possibility of my new life free of pulmonary hypertension and what I would be able to do with my new pair of lungs.
In October 2011 I was told I was now active on the transplant list, I remember the feeling of excitement but also nerves as I knew the call could come at any time. They tell you to carry on with life as normal but you can’t, my whole life depended on this phone call, my children’s life depended on it (Isabelle was now 4, I also have a son called Brandon who was 9 at this time). From then on every time the phone rang I got butterflies, even my son would shout is it lungs mum when the phone rang? If ever I went out anywhere I was checking my phone had signal. The wait felt like forever, and at the same time I was deteriorating, I remember that Christmas being so poorly I just wanted to stay in bed but I put a smile on for the children and plodded along.
As we came into the New Year I knew my time was running out and I think my family and friends could slowly see me giving up, I was just so tired.
Then on 16th February at 9.30pm I got the call that they had a new pair of lungs for me, I remember it like it was yesterday. I was so excited……….
An ambulance was called and I came straight here to Wythenshawe to the Jim Quick ward, I underwent some tests to make sure I was well enough to transplant and then I just had to wait……
I was told the surgeons were going out to look at the donor lungs at 2am so we had a while to wait to see if my operation would go ahead. It also weighed heavy in my mind that someone had lost their life and that this person could potentially be about to save mine!! The word grateful or thank you simply does not come close!
At 5.30am the transplant co- ordinator came to tell me it was going ahead, I didn’t really have time to think as everything happened so fast from here, suddenly I was told you’re going to theatre in a few minutes, everyone was lovely to me, and I felt safe as I was wheeled to theatre. My mum and dad were with me too. As luck would have it my surgeon was Mr Venkat, who I am forever grateful to for doing such a good job and saving my life!
The next thing I knew I woke up in intensive care, I was extremely uncomfortable with my wound, drains, lines etc but the nurses were lovely. I did have a difficult time with hallucinations and I felt really embarrassed but I was reassured that this happens a lot. Things moved pretty fast from here, to be honest I felt like I was in the army but I see now it was all for my benefit, everyday something happened, a drain was removed etc, I was gotten out of bed on day 2 and walked a few steps this felt great and you feel so proud when all the nurses turn to see you take your first steps with your new lungs. Every day I was visited by the doctors twice a day, as they adjusted medication and arranged tests, I really felt looked after. I only stayed for 5 days on intensive care then I was back to Jim Quick where they were happy to see me back and doing well. I was put in the side room near the Nurses station so they could keep their eye on me so I felt safe.
After 3 weeks in total from my transplant I was allowed home, it felt so good to walk out of the hospital, everything seemed new, outside was different, the car was different, the motorway, my house it was like this new world, like I had woken up and was alive!!
I am followed up closely now here at Wythenshawe visiting the clinic every 2-3 months to check that my lungs are functioning well, and they all really feel like family now as well as some of the patients I have met along the way.
So what is life like after transplant? I would say it is one big journey I have my ups and downs but mainly ups, I don’t take a single moment for granted! It certainly makes you appreciate life! I keep myself busying enjoying life with my children and family and I smile all the time. I listen to my transplant team and follow everything they tell me to do in order to stay well. I think of my donor every day and I owe it to her to make the most of my time now and I hope she would be proud that she gave her lungs to me.
I have not gone back to nursing yet as I am enjoying being a full time mum for now but I am not ruling this out as a future possibility, I am very passionate about organ donation and in my free time spread the word everywhere I go!