Helen - Interview 23
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Helen was diagnosed with Cystic Fibrosis (CF) when she was just ten weeks old. An early diagnosis meant she received treatment and was able to control it throughout her childhood. She described how she maintained her health to a point that people would not realise she had the condition. After university, she started work as a teacher but, at the age of 23, her health started to deteriorate.
Helen began feeling tired and getting chest infections for the first time in her life. Throughout the next few years, her chest infections became more frequent and her health deteriorated quite rapidly. Helen was assessed for potential organ transplantation, but did not believe it would ever come to that.
CF began to impact Helen’s life more and more. She loved being a teacher and was becoming very successful in her career. However, she began to find work increasingly difficult. Colleagues and pupils were concerned because she appeared so unwell.
At the age of 30, Helen was promoted to a new role but, shortly afterwards, became very ill with another chest infection and had to take a lot of time off work. She felt so guilty about not doing her job as well as she’d have liked that she decided to resign.
When the decision was made to go on the transplant waiting list, Helen said it was very difficult to find a hospital that would accept her. She needed more than one organ (heart, lungs and liver), which meant there was a higher risk that the transplant would fail.
Eventually, Helen was accepted on a waiting list. After fifteen months of waiting, doctors reassessed her to see if she needed a heart transplant. It was decided she did not and that she could now go on the waiting list for just lung and liver. Within eight weeks, Helen received the call to say a potential donor was available and the operation could go ahead.
After the operation, Helen began her recovery in the High Dependency Unit (HDU). Later, she was transferred to a general ward and recalled how the quality of care between the two wards differed vastly. Helen described the nurses in HDU as ‘angels’ but felt ‘neglected’ on the general ward and was keen to go home.
Within a month of the operation, Helen was discharged from hospital and her Mum moved in to care for her for the first two months. It took about six months before Helen felt back on her feet again. She now has follow-up appointments every three months.
Around 24, Helen started feeling increasingly tired and getting chest infections. She had...
I was about 23, 24, my health was starting to deteriorate. I started feeling tired, hadn’t really had chest infections up until that point, but I started getting them. And the guys at [name] Hospital in [place name] decided that I needed to have intravenous antibiotics, which was a big shock to the system because it was needles and I didn’t really like needles. But I started having those. And they were kind of seen as an MOT. They would tide me over and I’d be fine, and I’d just get on with work and doing whatever else again.
I was very interested in amateur dramatics and I started working with a group. And I guess it was when I was about 30 that, just kept on getting more and more chest infections. The antibiotics weren’t really doing their job.
Transplantation had been hinted at when I’d gone to my clinical visits, but it was in the back of my mind. And they said, “Look,” but I think they gave me a DVD to watch or a VHS at the time. And just said, “Have a look, see what you think.” Of course I was like, “Oh no, I don’t need that.” Because really I hadn’t been effected in ways that other people had so I thought no, that won’t be me.
And then just generally it went, my health went downhill very, very rapidly. I was having the IVs, I was going to school [place of work]. I was working with them [IVs] because I’d do them from home myself. They taught me how to administer them myself. I’d mix up the mixtures and the concoctions and put them through my arm and that was fine. But as soon as that course had finished, I’d have about two weeks and I’d be fine, and then it would all start again.
I lost so much weight. I actually had to put weight on before they would do the op. Because they said in this condition, you wouldn’t survive. So I did overnight feeds. I had a tube put in through my stomach and I used to have this horrible thick milk shaky drink which is about 1000 calories per bottle, go through every night. And that’s the only, because it’s kind of like force feeding really, but that was the only way I could put the weight on.
Helen was surprised when her call came in the afternoon, eight weeks after going on the lung and...
I was just on the lung and liver [list] and I had the phone call about 8 weeks later, which was in the September, 2006.
A call in the morning which is quite odd because normally you’re given the call in the evening, or during the night. So when I answered, I mean I used to go to bed every night petrified that I was going to get this call. When I had the call in the day, I thought it was just the transplant co-ordinator [specialist nurse] seeing how I was. But no, she was saying, “We’ve got the organs.” She’s very down to earth, [nurse’s name] is, a lovely lady. “Come on, we’ve got the organs. Do you want them or not? Get down here.” That was how she put it. And I was like, “Okay.”
So went down at 1 o’clock, everything was fine. But even at that point you don’t know whether you’re going to go through with the op or not because if there’s a problem with the organs, they will cancel it all. But I was very lucky.
She came in her theatre gear and said, “Right, come on, we’re off.” And that was it. And I’m not going to say I was frightened because I wasn’t because my health was so poor and my quality of life was so, it was awful, that I kind of thought, “Well, if I do this and die, I die. If I don’t do it, I’m going to die anyway.”
Gradually, the drips and tubes were removed and Helen was encouraged to start walking. She needed...
Eventually they start to remove drips and wires and tubing, that’s all removed. It’s difficult because they want you to start walking around as soon as possible because that’s what gets the lungs working. But it’s difficult because you’re connected to machines, and you have chest drains which have got very large kind of buckets on the end of them full of horrible fluid.
So at first walking around, you need help from a lot of the staff. But I have to say at the [hospital name], I don’t know about other centres, but at the [hospital name], the High Dependency Unit that I went on initially, they were angels. That’s the only way I can describe them. They were fantastic. It’s one nurse to two patients and it was wonderful. And anything I needed or wanted was there.
When I went down to the general ward, which is actually, it’s a heart ward, because they haven’t got a separate lung one at the [hospital name]. That was a different ball game. That was like, we described it as boot camp. It was a ward with a lot of elderly people who’d had triple bypass surgery, open heart surgery. Nurses very few, too many patients. You rang the bell, you waited hours before anybody came and that got very frustrating because I actually ended up helping one of the old ladies on my side of the room because nobody came to help her.
And then I was angry then actually because I’d come from this fantastic place upstairs where everything was done for me, and okay, I was more independent but I’d still only just had a big operation. And I kind of felt quite neglected in there. And I just couldn’t wait to get home then really.
Helen felt upset that she couldnt have children because of the medications she was on. They...
I have been quite upset. I’m alright, but I have been quite upset about the fact that I can’t have children. Not physically, physically I could have them but it’s the drugs I’m on, which are not tested on pregnant ladies. So CF’s [cystic fibrosis] kind of out of the way a bit, healthy lungs, you know. I mean I would have never have considered it before when I had CF because I didn’t know what was happening to me. That was completely out of the question.
But I did think now, oh maybe I’ll be alright. But when I spoke to my consultant about it, he did say, “Well yeah, physically you could. But we wouldn’t risk it because there could be severe damage to the baby. There could be minimal, or we couldn’t tell you, so we’d rather you didn’t take the risk.
And that was quite hard. I think a lot of that’s to do with the fact that I’m, you know, I’m late thirties now so that’s my time run out really. And that was quite difficult.
Helen was given no information about her donor. She would love to know if the donor was male or...
I was a little bit upset that I couldn’t get any information about the donor. This annoyed me because in different centres around the country, different people are given different information. Now I didn’t want their life story, but I wrote a letter to the family after the op, and it was really difficult to write it because I didn’t know whether that person was a man, woman, age, nothing. So it was very difficult to write that letter.
It seemed very impersonal just saying your family member or whatever. I couldn’t make it any more distinctive than that. And that was upsetting. But that is down to the [hospital name]. That’s their policy on it. But I kind of think, if I was donating, I’d like the person to know a little bit about me. I know it can cause lots of problems because you can get families who are following the recipient and making sure they don’t do anything to harm the organs. I know that.
But it would have been just helpful to have known a little bit of information about that person so I could have built up an idea of him or her in my head. I have no idea about the person at all, and that upsets me sometimes because I’ve got to live with their organs inside me for the rest of my life. And I know nothing about them. So that’s a bit of a sore point with me. I would have liked to have known a bit of information.
I think to the day I die I’ll be thinking, “Who was she? Who was he? Was he or she married, have they got children?” You know, just little questions like that. And I don’t see the harm in giving a little information. Because at the end of the day, as I said, they have consented to do this after their death. And also the recipient has put themselves through a huge operation in order to get those organs, so it’s a very big deal on both parts.
Helen encourages people to find out more about organ donation. Meeting transplant patients would...
At the end of the day, it’s down to the individual. As I said, the only thing I could say is go to a transplant clinic, see the people sitting there who are healthy, well. I don’t really think there’s anybody who would say, “God, I wish I hadn’t had that done.” You might at times think, “Oh this is difficult,” if you’re having a bad time with it.
But, on the whole, it’s such a positive thing to do, and I’m sure even donors’ families, although it’s the most heartbreaking decision to make, I’m sure deep down they are delighted that their relative did that. And I mean especially if you think about children who’ve received you know, like a donor of some sort, it’s just amazing that you can make such a difference to their lives, or to anybody’s life.
But I don’t think there’s anybody who, again that’s difficult if it was a child that’s going to donate, but I just think it’s the best gift you can give. And if, yes, if you’ve got reservations then obviously go and talk to a professional who will hopefully ease those worries you’ve got. And give you the right information, because there’s so many bizarre things going around about transplants and you need the facts, you don’t need the fiction that’s made up from it. But if you go to any transplant centre, they have in their clinics loads of leaflets, but no, get the right information