"Fighting and persevering is worth it"
Lara, lung transplant since 2019 at the age of 11, retransplanted in 2020
At the end of October 2019, my daughter Lara (11 years old at the time) had an appointment with a pediatric cardiologist in Hildesheim. This appointment came about because Lara had become increasingly "lazy" since the beginning of 2019. It sounds bad at first, but my otherwise fit daughter hardly wanted to go outside and could hardly walk any more. She was constantly throwing up. In mid-October, she went to a children's birthday party at the Oktoberfest in Hanover. After a few steps, she always needed a five-minute break. This prompted me not to try the family physician again, but to go straight to the cardiologist.
After a heart echo was done, we got the message that Lara had to go straight to the MHH.
"Within a few days, our lives were suddenly turned upside down..."
The ambulance came and took Lara to the MHH with me. Once there, we went straight to the cardiac echo again.
In the days that followed, everything happened very quickly and I sometimes don't remember anything. It turned out that Lara had pulmonary hypertension.
Unfortunately, the medication no longer worked and so Lara was listed for a lung transplant at the beginning of November 2019. Just a few hours later, "the" decisive call came. Within a few days, our lives were suddenly turned upside down and we didn't have time to realize anything.
On the day of the transplant, we went straight from the intensive care unit to the operating theater early in the morning.
For most outsiders, this procedure borders on a miracle. Lara herself and the rest of the family were just incredibly overwhelmed at this point and yet infinitely grateful.
"Since then, many of the staff and other patients have simply become part of the family for Lara and me."
While Lara was still in surgery, I realized that we wouldn't be able to take her home after her stay in hospital. We had been struggling with damp and mold in our apartment for some time.
So we started looking for a place to live on the day of Lara's transplant.
Lara's condition improved relatively quickly after the transplant, despite some minor setbacks. However, there was no new apartment in sight. As a result, Lara and I were discharged to Haus Schutzengel three weeks after the operation, where we were lovingly welcomed and continued to look for an apartment.
We got to know many lovely people at Haus Schutzengel and also during Lara's time in the Clinical Department. We always call it our "bonus family", which came free with our lifelong connection to the MHH. Since then, many staff and other patients have simply become part of the family for Lara and me.
Right now, Lara and I have spent 10 of the last 13 months at the MHH and Haus Schutzengel.
After she was discharged, finding a place to live continued to be difficult. Even two newspaper articles in the HAZ helped to generate a lot of interest, but unfortunately not an apartment. So I spent Christmas with Lara at Haus Schutzengel and the rest of the family came to visit. On New Year's Eve, Lara had a control bronchoscopy. The rest of the family moved into Haus Schutzengel for two days, because on January 2, 2020, the whole family went to family rehab.
This rehab was great family time, as we had hardly seen each other since being admitted to the Clinical Department. During rehab, we continued to look for an apartment, unfortunately without success.
So the family had to be separated again on January 30, 2020. Lara went back to Haus Schutzengel with me, while Dad went back home with his siblings.
"Lara started riding her bike again, and not just a little."
Corona slowly arrived in Germany, which made it more difficult to find a place to live. As dad went back to work and the siblings went to school and kindergarten, we continued to isolate ourselves in the Schutzengel house.
After a few nerve-wracking months in which we were still barely able to come to terms with what had happened, the time had finally come on May 1, 2020.
Lara and I were able to move from Haus Schutzengel into our new apartment, together with the rest of the family. An apartment in a new place with completely new facilities or Institutions (due to mold infestation) and suddenly as a whole family again. It was and still is strange. Personally, I always feel like I've been thrust into a strange new life. However, the most important thing is that Lara is doing well. Until she moved in, she always needed her wheelchair for trips outside the apartment, but it suddenly stopped working. She started cycling again, and not just a little. Despite corona and all the precautions we took, we always had the opportunity to spend a lot of time outside. Lara's first real big bike ride after the transplant was to the MHH.
You would think that everything went perfectly.
"From then on, I only have fragments of memory, because suddenly it was all déjà vu..."
In July, Lara started to look a bit listless. A rhinovirus was discovered, nothing unusual for Lara. But shortly afterwards, her lung function deteriorated. The check-ups became more frequent. No exact cause could be found. At the beginning of August 2020, the whole family went on a 10 km bike ride, which was still no problem for Lara. Since we have been at home, she has cycled 900 km in these 3 months.
After this tour, she suddenly developed a fever in the evening and her saturation levels plummeted. We had to go straight to the Clinical Department for a blood test. So in the middle of the night, an ambulance picked us up to take us to the Clinical Department.
By the time we arrived at the Clinical Department, the next day had already dawned. From then on, I only have fragments of memory, because suddenly it was all déjà vu. The X-ray was abnormal, Lara was supposed to go straight to the bronchoscopy in the morning and then to the ward. However, she ended up in the intensive care unit because she developed a pneumothorax immediately after the bronchoscopy. Over the next few days, she suffered a pneumothorax a total of four times. The treatments again did not work. Everything happened very quickly again. Lara urgently needed to be listed for a re-transplant. The déjà vu continued and Lara was listed again the following Friday. It was actually clear to everyone that there wouldn't be another miracle, that everything would happen so quickly. I also said that I didn't want to get the call straight away again. It came as it had to: the miracle happened. This time I was totally calm and absolutely grateful. The call came again at around the same time that a lung was available for Lara. Again, we spent the whole night at her bedside waiting to go into surgery. The re-transplantation itself went quite well, but this time there were some complications afterwards, which were also psychological. It wasn't clear for a long time whether we would even be able to spend Christmas at home and we planned to spend Christmas with the "hospital family".
"It's worth fighting and persevering, you're allowed to have your lows and yet you should always think optimistically."
The turnaround came in mid-November and even though Lara still had some construction sites, she was suddenly doing so well that we were discharged home at the end of November 2020 after 113 days in the Clinical Department. There were plenty of tears, as the Clinical Department had mainly been our home for the last year and suddenly we were back in this unfamiliar new home where everything was new to us. Now I've been back home with Lara for 3½ weeks and when you consider how often she looked death in the eye during her stay in hospital and even gave up at times, it's all the nicer to see her full of joy and fun again. It is worth fighting and persevering, you are allowed to have your lows and yet you should always think optimistically. Nobody thought they would see Lara in her current condition again. Yet she has only just begun to fight her way back into life.
Submitted by Nicole Z., mother of Lara