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
Epilogue;
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
