From mild to severe heart valve stenosis
Nicky has known all her life that she was born with a bicuspid aortic valve, but it wasn’t until recently, during her third pregnancy, that her heart began complicating her life.
“I guess I’ve just been really lucky,” Nicky reflects. Despite having aortic stenosis, a heart valve that can’t open widely because two parts of the valve are fused together, her heart condition hasn’t affected her until recently.
“I had no symptoms, no restrictions. At school, I could play sports if I wanted to, I didn’t feel any different,” Nicky explains. “I’d had mild stenosis my whole life, since I was a baby all the way through school.”
It wasn’t until Nicky’s first pregnancy at the age of 16 that her cardiologist started monitoring her heart condition more closely. “They explained to me that the pregnancy was putting more pressure on my heart, but to be honest it wasn’t really something I was thinking about. I was just getting through pregnancy and being a teenage mother.”
“I’m 36 now, and my third pregnancy was a little more high risk. The stenosis had become moderate, but at the time I didn’t really know what that meant, so I just carried on. I felt fine.”
Looking back, Nicky can see she probably did have some signs that her heart valve problem was getting worse. “I think pregnancy and heart-related symptoms are quite similar, breathlessness and fatigue. After my youngest was born, I feel like I never really recovered.”
Pushing for heart surgery
Twelve months later, Nicky and her partner were considering trying for a fourth child when heart tests came back showing that it probably wasn’t safe for her to have another baby.
The severe stenosis in her bicuspid aortic valve had caused an aneurysm in Nicky’s aorta, something she wants fixed – along with her heart valve – before she gets pregnant again.
“The problem was, they weren’t really keen on pushing me through for surgery. The criteria for having an aneurysm fixed is when it reaches 5cm or higher and at that stage I was 4.5cm, so I could have gotten through a pregnancy but I might not have as well. I didn’t want to take that risk.”
While waiting for the aneurysm to increase in size so she could get onto the list for surgery, Nicky’s health started interfering with her work.
“I’m dizzy all the time, so that’s just become a normal everyday thing for me, I just kind of get on with it. It feels like you’ve had a couple of wines, you always feel that little bit off, your vision is a bit slower but you get used to that, it just feels like a normal thing. But the breathlessness and fatigue, that’s terrible.
“I’m a hairdresser, so I’m on my feet a lot. My feet swell up now, and the swelling has gone from my ankles up my legs to my knees, and my hands and wrists.”
Getting onto the waiting list
“In the past, I’ve had no symptoms but now that I do, it’s limiting everything in my life. We’ve got small children, we’re busy, and we want to open a business next year. All those things can’t be done with the way I’m feeling..."
“In the last couple of months, when my little one has a nap, I can be out in a couple of minutes. I just have to lie down and I’m gone. So I obviously need the rest and that’s just really not like me.
“My last MRI results showed the aneurysm was at 4.7cm, and I think they saw I was struggling a bit with symptoms. So I’ve had all of my pre-op testing now, I’m officially on the waiting list. So now we just wait until we get that date in the mail.”
The wait for heart surgery
Nicky has been preparing herself to make sure she has the best chance of recovery after her surgery.
“I’ve done a lot of research. I’m lucky that I’m 36, I’m keeping active, and I’m in pretty good health so on paper I look like a perfect candidate. But you know, my worrying mind makes me think of all the things that could happen.
“The last operation I had was when I was seven, to have my tonsils out. So I don’t remember having anaesthetic. I’ve not had any drug higher than ibuprofen. So it’s going to be really different for me.”
Nicky has found it valuable to read stories from people who have had similar surgeries. “I belong to a really helpful group on Facebook, a heart surgery Facebook page. That’s been an amazing help to me. I honestly can’t think of anything better. You’ve got people at your fingertips ready to tell you their stories. Just seeing people, real people going through the same things and coming out of it – it’s invaluable.
“All the stories are quite different, but a common thread seems to be the more positive that you are, then the better outcome you are going to have.
“I’m positive, you know. I’ve got so much to live for.”
A confident attitude
One particular conversation with her cardiologist has given Nicky more confidence about the upcoming surgery. “She asked me, ‘What’s your thing, what do you do all the time?’ and I told her I’m a hairdresser, so I cut probably. And she asked me if I could do that with my eyes closed. And I was like, ‘Oh, yeah.’
“And she asked, ‘Do you sometimes make a mistake?’ and I was like, ‘Yeah’. And she went on, ‘Can they be fixed?’ and I was like, ‘Yeah, totally.’ And she said, ‘OK, so that’s what the valve replacement is like for us surgeons. It’s something that we do every single day. This is something we do over and over and yes sometimes there’s a mistake, but they can be fixed. So try and look at it like that.’
“That was probably the best thing that someone had said to me, especially coming from a surgeon. Just saying it that way, I thought, OK, that makes sense to me. You know, it makes me feel a little bit more at ease.”
Nicky has been keeping a blog of her heart journey and has made a list of things to do with her family and friends while waiting for her surgery date, things she’s found has really helped to take her mind off the wait.
Shared October 2017
Update November 2018
The call for Nicky’s surgery date came suddenly and was scheduled for three weeks later.
“They called me one day and just gave me a date, which was really soon so I had to get myself ready for that. It was a pretty hard wait actually and I didn’t deal with it very well at all.” Nicky remembers. “I had lots of anxiety, which I don’t normally have so I just kept myself really busy.”
However, on the day Nicky was to be admitted, her surgery was cancelled and she was given a further three weeks to wait.
“The good thing about it was by the time it actually came along, I just wanted it done and over. So it kind of gave me a little bit more courage.”
A different experience
When the day finally came, Nicky’s experience was not what she expected.
“We came in on the day of the operation and saw the surgeon, the anaesthetist, all sorts of people, and I just remember crying the whole way through it. I was listening, I was just so scared, but they put my mind at ease.”
Nicky’s research before her surgery meant she had an idea of what was going to happen, but she was worried about certain things, none of which turned out be as bad as she expected.
“Going into theatre wasn’t quite as bad as I thought. I was still crying, upset and nervous but it wasn’t quite as scary as I imagined. That part is the worst for your family and not for you. Once you’re in there that’s it.”
The surgery to replace Nicky’s valve with a new tissue valve and repair her aorta with a Dacron graft took longer than expected, but was a success. Nicky woke up feeling dizzy and with bad back pain in the ICU a few hours later.
“I can’t say that the pain was more than I expected. It was easier to deal with than expected. It was bad, but it was, you know, doable, and by the time I came home I was just on paracetamol.”
Nicky’s research told her that the first few days after surgery were when things were most likely to go wrong.
“It’s hard just hoping that you get through them and nothing big and dramatic happens.”
Fortunately Nicky had no complications, and she remembers the worst part of it for her was having the pacing wires removed.
“I wouldn’t say it was painful but I could feel them detaching from my heart. But that’s not much really is it? It’s not the worst thing that could happen. There’s so many worse things.”
Nicky also noted how amazing the nurses were during her time at the hospital.
“It was one of those situations where we actually realised how much work nurses do. They do everything! The surgeons do the surgery, and they save your life that way, but those nurses literally nurse you back to health so that you can leave. So that’s pretty amazing. I really respected that.”
After seven days, Nicky was allowed to go home and she left feeling “really positive about the whole experience”.
Adjusting to life after heart surgery
Nicky spent six weeks recovering before she returned to work. She remembers feeling very fatigued and uncomfortable, rather than in a lot of pain. She also noticed her breathing was laboured and it took several weeks to return to normal.
“That was probably the longest lasting symptom. You forget that your lungs are collapsed during surgery, so they are learning to inflate again. Also, while you are in pain, you’re only taking small, shallow breaths, so you have to learn how to do these big deep breaths again and it’s really up to you, you have to do it.”
Nicky also has been experiencing vertigo since her surgery, but hopes that it will get better with time.
A noticeable change
Nicky returned to work still feeling fatigued, but as she works from home she was able to pace herself.
“Anything tired me out, up until about 10-12 weeks post-op. If I could, I just listened to my body and rested. But it was also really apparent really quickly, probably from about eight weeks onwards, how much better I felt.”
As time went on, Nicky’s saw her energy levels improve dramatically and was able to do much more than she could before her surgery. Now, 10 months on from surgery, apart from the vertigo, Nicky is doing well. “It’s pretty amazing. I’ll take the vertigo, that’s better than anything else.”
‘A second chance’
Armed with a new heart valve, Nicky is keen to get on with her life as normal, but for now has decided against another baby.
“I think because we went through that, it’s definitely put my husband off because he feels like he doesn’t want to put my body or me under any kind of pressure, even though the doctors said it would be fine. But also we’re really enjoying this time now. You do sort of feel like you’ve got a second chance.”
Reflecting on her experience, Nicky feels fortunate not to have had depression or anxiety – a common occurrence for those who’ve had heart surgery. She believes people need to know what to do if they start to feel that way.
“It catches people by surprise. It really hits people when they realise they came that close to death. I just think if they have an idea that depression or anxiety will affect them, then maybe they’ll get help a bit sooner.”