Jaimy Vanenburg (31) is not exactly a lucky person, although she sees it differently. In a year’s time, in addition to having a baby, she receives a double lung transplant, a cardiac arrest and discovers that she has lymphatic cancer, which is now also in her brain. Yet she remains as positive as ever. ‘I feel in every fiber of my body that this will work out.’
The good news is: I am rid of my lung disease. It’s just a bit of a shame that I ended up with cancer instead. That is of course not nice, to say the least, but I choose not to give up. I think I was born with that positive attitude, six weeks early, in Eindhoven. My premature birth led to bronchiectasis, a chronic lung disease in which the airways dilate and therefore become continuously inflamed. Annoying, but as a child I hardly had any problems with my half-functioning lungs.
From the age of seventeen the problem became more serious and my lung function deteriorated more rapidly. In five years I went from a lung function of 56 percent to a paltry thirty percent. That was a big decline, but it was so gradual that I could live with it. I didn’t feel sick and, as a student, I didn’t feel like feeling like a patient at all.
During that time I also met my friend Joep. Of course he knew that I had a lung disease, but because I had little trouble and always went to doctor’s appointments alone, I don’t think he realized at that time that my lungs could cause major problems. Me neither, by the way. I knew that living to the age of ninety with those same lungs would be a challenge, but I also never thought that it wouldn’t turn out well.’
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Mini pension
‘That changed in 2020, when I had a second opinion at the University Medical Center Groningen. I really wanted to get pregnant and know if my lungs could handle a pregnancy. A specialist doctor reassured us, just like my own doctor, but also confronted us with the facts. A pregnancy was not a problem, but that one percent decline per year was something to seriously take into account. In ten years I could theoretically already have twenty percent lung function; that is the percentage at which people usually receive extra oxygen. That got me thinking.
We wanted a child, but we also had other dreams. Traveling, for example, and climbing mountains before I might no longer be able to do so. It was still questionable whether I would even reach my pension, so I put my work as a sports and employment lawyer on hold and we instituted a mini-pension. We traveled through Europe for eight wonderful months in a camper and I did everything I ever dreamed of. We came back in great shape and very happy with a beautiful souvenir: I turned out to be pregnant.’
Pregnant
‘The pregnancy was not without its struggles from the start. Although the doctors had given us the green light, my condition appeared to deteriorate sharply almost immediately. I wasn’t worried yet: the baby was growing well and that was my priority. However, I had not yet gained an ounce of weight. I knew that wasn’t right, but was confident that everything would be fine once my baby was in my arms. After 29 weeks of pregnancy, my waters suddenly broke and I was admitted. Stupid coincidence, according to the doctors.
Ultimately, more than three weeks later, I gave birth to a son by emergency caesarean section: Len. Despite his early arrival, Len fortunately did very well, but I got a nasty case of pneumonia soon after birth. It was a difficult time for all of us. Joep was constantly in conflict: where am I going and who needs me most? I ended up in survival mode myself.
My motherly instinct wanted to do everything I could to give Len the best start possible, but in retrospect I may have over-effaced myself. For example, I wanted to breastfeed at all costs. That was pretty much hammered home: breastfeeding is very important, especially for a premature baby. Strangely enough, my production was fantastic and I thought: if my body thinks it can do this, then it must be good. It wasn’t until I weighed only 35 kilos that I knew I had gone too far.’
Lung transplantation
‘In the period after giving birth, I ended up in hospital four times, each time because of problems with my lungs. Things went from bad to worse and I noticed that my body was having more and more difficulty getting back on its feet. To gain weight, I was given a tube, something I had withheld for a long time, and eventually I also needed extra oxygen permanently. Still, the expectation was that I would recover, if only I had the chance to strengthen and build muscle.
With a lot of resistance, on the advice of my doctor, I had a conversation about a possible lung transplant. It wasn’t a matter of burying my head in the sand; I simply wasn’t ready for it yet. You can generally only undergo one lung transplant per lifetime and those lungs only last about ten years on average. As a new mother, that was not a time period I wanted to settle for.
I also felt that I had not yet given my body the opportunity to show what it was capable of. In fact, I was okay with staying so sick if it meant I got three extra years with Len. Time together became the most important thing.’
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Coma
‘And then things went wrong again. On May 5, 2022, I was admitted to intensive care as critically ill. “Say goodbye to each other, because there is a real chance that this will not work out anymore,” was the message from the doctors before they put me in a coma. At that moment I actually only had two options: either new lungs were found in time or I died. It was a tense time for my family and friends and everyone expected the worst.
Against all expectations, a small miracle occurred: two days later I woke up independently to my sister playing her new song at my bedside. A surreal experience for my family and the doctors; I was still there! To complete the celebration, the next day I heard that I could be put on the list for a lung transplant. Another week later I woke up with a set of new, well, second-hand lungs. They felt immediately mine, like it was meant to be. The doctor told us afterwards that they fit perfectly. Unique.’
Another blow
‘Last summer was all about recuperating and enjoying my time with Len and Joep, whom I missed terribly because of everything that happened. Every week I drove, together with Joep, from Eindhoven to Groningen for the check-up.
It was like being in a bad movie when the doctors saw something strange in my lungs on one of the scans. Due to an extremely unfortunate set of circumstances, dumb luck actually, a basically harmless virus that was in my new lungs turned out to have converted into lymphomas: cancerous tumors. Fortunately, it was a form of cancer that is easily treatable with immunotherapy. I felt everything: my body can do this, this too will be fine. But while we were still reeling from this news, another blow followed. A hard one.’
Cardiac arrest
‘I wasn’t feeling well, I had the flu and was in bed recovering from illness. Joep and Len had just eaten and came to play in the bedroom. The last thing I remember is Len bringing me a block, the next minute I woke up in the hospital. It turned out that I had suffered a cardiac arrest, and Joep had to resuscitate me, under the guidance of the 112 operator. I didn’t know what happened to me. My lungs, that’s where the problem was. Why did my heart suddenly fail me?
I was given a temporary pacemaker, which was replaced by a permanent one after three weeks. It was a miracle that I was still there, I realized that very well. If Joep and Len had come up ten minutes later, I wouldn’t have been there anymore. Even though I just wanted to feel joy, there was also fear. The rock-solid confidence in my body showed cracks for the first time.
No one knew exactly what caused my cardiac arrest and the pacemaker felt scary and uncontrollable. Until that moment it felt as if I could control my body with my head, but that pacemaker was an electronic thing that did not belong to me. What if the pacemaker technician forgot to put it on after an MRI? All this time I could have pretended I wasn’t a real patient, but now something was visibly wrong with me. A young girl with a body full of scars and a big lump from the pacemaker on her chest; I had to get used to that, to say the least.’
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Brain lymphoma
‘It turned out that the universe had another hit in store for us. During a check-up scan, the doctors saw a strange spot in my brain. After a number of extra checks, there was no longer any doubt about this: more cancer. Even I could no longer deny that the cancer light in my lungs, which fortunately seems to be gone, was now really cancer. Unreal. Immunotherapy is not enough for this lymphoma in my brain and so I am now receiving chemotherapy.
How I feel about this varies from day to day. The process makes me sad and I miss my child. There’s something in my brain and it’s a scary idea. And yet I feel in every fiber of my body that this will work out. Even now the doctors, who have shown their confidence time and time again in all previous situations, do not know very well. So I try to worry about that as little as possible. I refuse to be less confident. That doesn’t suit me. It’s a matter of waiting and waiting.’
Chronic positive
‘People often ask me how I manage to stay so positive. The honest answer is that I just don’t see the need to be grumpy. There are really only two scenarios: things will work out or they won’t. In both cases, giving up now is a waste of my time.
I’ve been very lucky so far and I don’t see why that should suddenly change now. Of course I understand that people sometimes think that I laugh away or put my sadness into perspective too much. I do not do that; We allow the sadness to be there at enough times, but I refuse to get stuck in a victim role. Moreover, I make it easier for my body to recover if I think positively. That doesn’t mean that I hide my sadness, but it does mean that I don’t want to get stuck in negative thoughts. I’m not the type for that.
I’m not afraid of dying, but I am afraid of losing time. My son is one and a half years old and although I know that Len has everything he needs, I have not yet been able to be the mother I want to be. Fortunately, Joep and my family keep me informed of every step, literally and figuratively. We are even closer than before and they are not only my but also Len’s rock.
In the near future I plan to continue with what I was doing in a positive way: living. Who knows, maybe people will find my positivity naive; I do not care. I’m still here, after everything that’s happened. Who knows, that positivity may have made the difference.
This story previously appeared in JAN 3 2024.
