- Summary of key points here
- Transcript of Florence Perrin-Szabo’s talk at this link
- Transcript of Prof. Laurent Savale’s presentation here
- Transcript of Prof. Konrad Hoetzenecker’s presentation here
The summary and transcripts can be translated in the language of your choice via the translation plug-in (orange button, bottom centre). 40 languages are currently available.
Proud that this webinar was endorsed by the European Society for Organ Transplant, ESOT, the European Reference Center for Rare Lung Diseases, ERN-Lung, and by the European Lung Foundation, ELF
Prof. Laurent Savale slides
Prof. Konrad Hoetzeneker slides
Transcript of Florence Perrin-Szabo
NB. This transcript can be translated into your preferred language – use orange button at the bottom centre of this page to select it.
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BEFORE
Hello my name is Florence Perrin-Szabo. I was nearly 40, married, mother of 3, and I used to work as a financing pre-sales manager in a big computer company, in Paris.
That was before.
Breathlessness was the main symptom; it appeared 1 month after the birth of my third kid in August 2005.
2 months later, the cardiologist of the maternity hospital, Dr Du Quang Lim, made the diagnosis in only 2 days for a probable pulmonary arterial hypertension which was confirmed by Professeur Simonneau at the Hopital Béclère, in France.
After 5 years with the triple therapy (sildenafil, tracleer/bosentan and eventually prostacyclin), results from my work-up deteriorated, I was put on the transplantation list in September 2010, passed the pre-tests – which already revealed that I had a very high amount of antibodies…
In January 2011, I went for a usual check up in Béclère. I had caught a cold a few days ago, I was in pretty bad shape (red face due to high level of prostacyclin, swollen belly, and feverish), and Prof. Simonneau and Prof. Dartevelle decided to put me in the Super Urgency list.
Sixteen plasmapheresis were tried on me during this month in order to remove, or even just decrease, those antibodies that would prevent any further transplantation obviously. None worked, not even a bit.
During that month of January, as I had many calls from family and friends, I was repeating my health report several times per day, on the phone or to my visitors.
So I decided to write what I called my « Chronicles of Béclère » where I portrayed my patient day at the hospital, but also profiled some typical members of the medical or care team.
After a few days, I was texting my Chronicles to 50 recipients and when they called back, our discussions were much more interesting!! That helped me pass the time…
And the doctors were starting to despair; I was told that if they dit not find a solution soon, I would have to get back home!!!!
One professor though told me not to lose hope – he believed in me: I had not « traveled » that far to just stop here. His name was Marc Humbert.
Eventually, February had just started when the transplantation team came back from an international congress where they received from Canadian pulmonologists the information that sometimes plasmapheresis was useless and transplantation should be operated with plasmapheresis during the operation, with ECMO, and other incredible things like that – that’s all i could tell about it actually.
Now what I clearly remember is that they explained this unexpected overseas solution at 11 o’clock in the morning on February 8, that they would send me back in Super Urgency list for a fortnight while we would wait for some rescue lungs…
At 5 o’clock in the afternoon, they came back in my room and said they had a graft for me!!!
DURING
And so was I transplanted during the night of February 8 to 9, 2011, by Pr Elie Fadel, in Hopital Marie Lannelongue.
Some 10 days afterwards, I woke up. Had the fear of my life thinking that the operation failed because I had so many tubes over my nose and mouth : I thought I would not breathe alone anymore !
But that was just the beginning of my personal fight to get my life back.
My body was my challenge :
It did not hurt at all, no pain ; the scar was really well done, a neat line across the chest, just below the breasts.
- But first I had to eat by myself and put weight on so that they would remove the feeding tubes and infusions (I went down to 45 kg and i’m 1.68 m tall);
- I had to recover the use of my left arm (I was strapped tight on the table during the whole operation cause I was told that when I was unconscious i had tried to remove all the tubes on my face with my hands, and then with my leg!!);
- I had to walk again by myself (my first steps were helped with a walker, like an old lady – I had lost a lot of muscle mass);
- I absolutely wanted to understand all the drugs, the dosages, that I was given in order to recover some sense of control (and I had so many pills each day, at breakfast, lunch, dinner! I had the feeling that my meals were pills!)
- I had to have the best respiratory functional scan results so that I would avoid the lungs cleaning process with the fibroscopy which was so dreadful;
- And i also had to feel good for my worried but lovely family, husband, kids, sisters and caring friends all around me !
After a 3-week recovery period I thought I was ready. So they let me have a week-end at home. But I was very fragile outside the hospital – couldn’t manage anything as I used to do before, felt useless, weak. When I returned to Marie Lannelongue, I explained the situation, and they sent me on a rehabilitation clinic for 3 weeks. Then I was strong enough to get back home and start on my own.
Every 2 weeks, then every month, and progressively every 3 months, I had to do a medical check-up of my transplant. I was rapidly recovering actually – I felt so lucky. My family was very caring and loving – I thought I should not have them disappointed !
Some incidents in my rather good health course ?
- a small transplant rejection exactly 6 months after stopping the cortisone – since then, I take 2mg per day without discussing!
- I caught an Aspergillus after some renovation work in my bathroom
- I had 3 fibroscopies – which are a total nightmare to me (I still do not understand why global anesthesia is not proposed to us patients, or why doctors who know how to proceed without pain don’t train the others…)
AFTER
It’s been 13 years now that I’ve benefited from this marvelous lungs transplant, and my life today is not the one I expected when I was nearly 40.
Still married, still mother of 3 (but a bit older!!), but not working anymore.
But I decided to take this granted second life as a bonus – life is too short to look back in the mirror, I have to enjoy every bit of it, to make to most of it.
I’m an active participant in my medical monitoring: I try to understand and follow the delicate balance of all the drugs that I take, the side effects also, how to cope with them
- My prescription only contains 2 anti-rejection meds, 2 mg of cortisone, 1 antibiotic every 2 days, and some magnesium.
- Every 4 or 5 months I have a medical check-up with my pulmonologist in Marie Lannelongue hospital (blood test and RFE – respiratory functional exploration + a scan per year);
- And every year, I scrupulously consult a nephrologist, a dermatologist, a gynecologist…
But most of my time, I’m NOT thinking about my transplant
- I practice sports like yoga, nordic walking and biking. Wednesday I’ll go skiing for 4 days with a group of friends;
- I do gardening;
- I’m having courses at the Sorbonne, in Paris;
- I give school support classes;
- I’m invested in the management of my co-ownership residence and also in our pulmonary hypertension national association;
- And I have plenty of time for my family and friends!
This morning I had my quarterly check-up: my blood is good, my breath is very good. My pulmonologist wished me a good ski week-end 😉
Now I never forget my donor of course, for this incredible timing and the extraordinary lungs granted. I also know how lucky I am in this extreme health situation to live in France with some of the best medical specialists in the world.
Their names are announced above, and etched in my memory. Thanks to them.
Thank you.