This Jenny, heart recipient May 2014. Her story is touching and amazing, read it below.
On the Waiting List
My name’s Jenny, I’m 41 years old and waiting for a new heart. I live with my husband Johan and our two children Gustaf, 12 and Saga, 10. I enjoy cooking and having friends around. My husband and I met at a dance 16 years ago. Last year we attended a West Coast Swing course together, and it was great fun. We usually travel around with our caravan in the summer. I also enjoy skiing and every year we spend time at a ski resort with our family. I studied for five years up in Luleå and am now a chemical engineer. My first job was working on control technology at the Preem Refinery in Lysekil. Nowadays I work at a chemical industry only 5 minutes from home. It produces solvents and plasticisers.
My heart history started in the summer of 2010. I went to the doctor in March that year complaining about shortage of breath when I was out walking. The doctor thought I’d got asthma from overexertion. I was given large doses of asthma medicines and my own PEF meter. However, the doctor didn’t do a spirometry test, he listened to my heart but didn’t take my blood pressure at all either. I went on holiday to Greece and then travelled to Shanghai for my work. When I was at the airport in China I thought that the air there was very bad, so I had to stop several times to take my asthma spray. At the end of June, my boss thought that I should contact a new doctor, so I went to the clinic the same day. The doctor at the clinic didn’t believe it could be anything other than asthma. I asked if it could be anything else – lung cancer? He said: ”It could be something to do with your lungs, if it doesn’t get any better, we can x-ray your lungs later.” The doctor gave me a blood test and it didn’t show any infection. My blood pressure was however not checked.
On Saturday the 10th of July 2010 we celebrated that our neighbour had succeeded in completing a half-triathlon, and then my husband went out to the pub with a workmate. I had started coughing a lot and when I lay down I coughed even more. I was up all night since I couldn’t lie down. I drank lots of honey and lemon to cure my tickly cough. Johan came home at about 4 a.m. and we sat and chatted for a while in the kitchen, then he went up to bed. I thought that I’d have to go to A&E in the morning, and that I’d wake the neighbour at 7 a.m. so we could drive there. I wasn’t worried, but the cough just would not stop. I was waiting for the neighbour to knock at our door when suddenly I found I was coughing up water!!!
We got into the car and drove off, with me coughing and suddenly feeling extremely panicky, that this was something very serious … I started coughing up pink froth into a plastic bag. I begged Malin to ring for an ambulance! I told her what to say: that it was my breathing ... the SOS nurse wanted her to stop the car. Malin asked where the ambulance was coming from. It turned out to be from Kungälv, about 15 minutes away on the motorway.
”OK”, said Malin, ”then we’ll meet you halfway to Kungälv.”
”No”, said the nurse. ”Stop the car!!”
”No”, said Malin. ”See you halfway.”
When we arrived at the Kode exit, the ambulance had not yet arrived. It came two minutes later, the longest two minutes of my life. I felt unable to keep upright, I hung on the door still coughing up pink froth.
Then the ambulance was there, and I managed to say my personal registration number and they gave me a CPAP mask. Unfortunately, the ambulance man didn’t explain that he knew what I was suffering from, just that the CPAP mask helps to treat water on the lungs ...
I believed it was just oxygen …
I heard the sirens start to wail and then I lost consciousness.
I have been told that when I arrived in A&E at Kungälv Hospital I suffered a circulatory stop, and that several nurses and doctors struggled with CPR to save my life.
The doctors tried all Sunday to find out what was wrong with me, so I probably wasn’t their idea of what a heart patient looked like. When they x-rayed my lungs they started to suspect that I had an enlarged heart. They did an ultrasound and were able to see that I had severe heart failure. Kungälv contacted Thorax at the Sahlgrenska University Hospital in Gothenburg, but the helicopter was busy elsewhere so I was rushed by ambulance in a respirator to Sahlgrenska. I remember that I woke up at one point in Thorax and thought it was so odd that mum and my younger sister, Johanna, were standing at my bedside. Then I understood how seriously ill I was.
The day after I was taken off the respirator and moved to the Cardiac Intensive Care Unit (ward 93). Dr Thomas Giljam told me that I had heart failure (idiopathic dilated cardiomyopathy) which meant that I would always have to take heart medicines and that I might have to undergo a heart transplant in the future, or else that my heart might recover. Three days later I once again had lung oedema. It happened very suddenly and I had to move into an intensive care room again in the Cardiac Intensive Care Unit. I was given treatment involving a CPAP mask and Furix, as well as masses of Valium, since I was so anxious. I asked Stefan the nurse:
”Am I going to die?” He wrote on the piece of paper: ”No”.
Today I am so grateful to Stefan for daring to write ”No”!
If I had died that night, it wouldn’t have mattered that he had been wrong. But it is essential to keep hopeful to have the power to keep fighting for one’s life!
Dr ”Dino” wanted to see how my heart would react to stress. He ordered an Echo Stress Test which means cycling while having an ultrasound performed. The doctor then saw how my mitral valve started to leak a lot when I made an effort. I felt pressure at the base of my throat, which I’d tried to describe to my own doctor during the spring, and I now think it was the regurgitation to my lungs I was feeling!
I was given intravenous medication and my heart recovered very well.
After only three months, I started to job-train for 25% of fulltime. After one year I was back at 100% as factory manager again. My job was very stressful and my doctor thought that I should consider changing jobs and I knew that the stress wasn’t good for me. In all other ways, I was very careful, going to a physiotherapist and training several times a week at a level that I felt I could cope with. I’d started dancing Swedish Bugg (Lindy Hopp) again, and swimming once a week. In the autumn of 2012 the pressure on my chest returned. I explained to my doctor that the regurgitation in the mitral valve had started again. My doctor in Kungälv took up my case at a Thorax conference, and an operation of my mitral valve was planned.
I got worse during the spring and summer of 2013. The summer heat didn’t help and my lung oedema returned. I had to go by ambulance to Kungälv A&E and later on to Sahlgrenska. I underwent a semi-emergency mitral valve operation. The Thorax surgeons later told me that when they opened up my chest they were able to see just how damaged my heart was. They fixed the valve with a ring and that went well, but my heart didn’t want to recover. My kidneys collapsed and I had to have dialysis. A balloon pump helped my heart to keep pumping. My body was swollen and filled with water. They were unable to stitch my chest together again. Instead I had to lie open for a week after the operation. I slept for four weeks. They spent one and a half weeks trying to wake me up, but I wouldn’t …
After five weeks my intravenous medication was completed and I was moved to the cardiac ward. I came home again at the end of August after one and a half months in hospital. During the autumn, I struggled to keep up with physiotherapy, though I felt it was very uphill, however it was hard to know whether it was my heart or my muscles!
Two months later, I began to realise that I wasn’t getting any stronger. Physiotherapy continued to be hard work and I had to stop and rest several times on my way upstairs in our house. I got tired just eating. I was admitted to Sahlgrenska again and that was when they started a heart transplant investigation. I actively joined the transplantation list on 1 November 2013. I was given another round of Simdax intravenously and I got much better. I was able to go home again, though unfortunately not for long. On 22 November I had to be admitted again. Now they started planning a pump operation and on 3 December a BiVAD pump (Berlin Heart) was operated into my chest. I then spent two and a half months in hospital after which I was allowed to go home to my family on 20 February.
Since I have to have someone with me twenty-four hours a day, my husband, children and I have moved to stay with my parents temporarily, and it’s a good solution. On 7 March, I again actively joined the transplantation list. I’m getting stronger by the day with the BiVAD pump and I’m trying to train and build up my body again for the big operation. Now I’m just waiting for the phone call with that message … that they’ve found a heart that is suitable for me.
Blood group 0 and just the right size!
Jenny Karsberg, Kode in Western Sweden, 25 April 2014
After My Transplantation
The phone call I was waiting for came one afternoon in May. The transplantation coordinator told me that they had found a heart that would suit me, there was no special hurry, but they wanted me to be at the hospital in about two and a half hours.
I had to give a lot of blood samples and shower a couple of times, as well as I could considering the external parts of the pump. Then the nurse said: ”Now you can rest for a while”, and she told me that the operation would take place at about 4 a.m., and the time was now 11.30 p.m. WHAT? Sleep now? Can I take a sleeping pill? No. How am I supposed to sleep in that case? I was allowed to take a mild sedative. I tried to rest and think good thoughts, but to fall asleep was hard.
In the middle of the night on the way to Thorax, I hugged my husband and said:
”Kiss and hug, see you later.”
Luckily, there were many well-known faces waiting for me in Thorax. I didn’t feel at all anxious, knowing I was in good hands.
The surgeon told me afterwards that it took about two hours to remove all the tubes that had been stitched into my heart, because they had really grown into the tissues, as of course they were supposed to do. I was rolled back to the Thorax intensive care ward at 3 p.m. which meant that the transplantation had taken about eleven hours. Then I spent one week in Thorax where the course of events was quite normal, with the help of a drainage catheter, heart medication intravenously and medicines to get my kidneys started again. The first period was rather confused, when one is in a kind of borderland between dreaming and being awake.
”I saw bedbugs all over the place”, ”I said such odd things”, ”I thought I was being kidnapped by space creatures”.
After one week in Thorax intensive care I was allowed to move to the transplantation ward. Now my digestive system started well and truly working again and I had to run to the toilet many times because the new medicines gave me diarrhoeia. I had a new roommate who had got new lungs, and it was good to be able to talk about one’s experiences with somebody who had been through more or less the same process.
My husband was allowed to take me home on midsummer day, and what a wonderful feeling it was to come back home, without the pump, and I was able to go for a walk without getting out of breath. I even coped with the summer heat without feeling tired out and getting oedema.
One and a half years have passed since then, and things have been up and down but mostly up! Adjusting my immune system has been difficult, and once it was so low that I had to be admitted to hospital and carefully monitored. After about nine months I got a CMV infection, which means my heart showed CMV positive, but I was one of the 30% who had not had CMV as a child. I started working 25% of fulltime again after nine months. Now, after one and a half years, I’ve just started working 75% of fulltime. I’ve also started to train spinning and next weekend we’re going to the mountains to do some slalom skiing!
Next summer I intend to take part in the European Heart Lung Transplant Championship 2016 in Finland, twenty kilometres on an ordinary bicycle!
I am so thankful for the incredibly fine healthcare I was given at Sahlgrenska.
And I’m so grateful that I was able to survive Christmas 2013, thanks to my excellent Berlin Heart Pump!
Jenny Karsberg, Ödsmål in Sweden, 7 December 2015
Last summer I attended a big sports event where all the participants had gone through heart and/or lung transplantations. We competed in athletics, jogging, swimming and ball sports. I competed in the 20 km cycle race on country roads. I managed it! What a fantastic feeling. I rode my new bike and it took me one hour and seven minutes. I came first in my class, women aged 35-44. Next time, when the sports event is going to be held in Italy, I aim to cycle the same race in under 57 minutes.
Jenny Karsberg, Sweden, 6 October 2016
Photo by Jessica Nilsson
Translated by Margaret Myers for RECYCLE ME