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Jana Huck from Plauen (Vogtland), who had a lung transplant at the DHZB on June 30, 2017 at the age of 43, has made this experience again and again. We are of course pleased that she felt well informed and cared for in our intensive care and nursing wards and through our TX ambulance. And about the fact that she can say today: “In summary, I'm just happy every day that I'm alive! I enjoy this miracle every day and I am grateful for this incredible gift from my new lungs. "
New interviews, videos and reports are available daily until June 28, the 30th anniversary of the first lung transplant at the German Heart Center Berlin.
What kind of underlying disease did the lung transplant require?
I was born in Leipzig in May 1974 and was diagnosed with cystic fibrosis when I was six months old. I am the classic "Muko", with lung and intestinal problems including the resulting diabetes melllitus from the age of 22.
Right from the start, my parents did not give up on giving me the best possible support in life despite cystic fibrosis. My parents integrated the vital daily therapies well into our everyday life, meticulously paid attention to their compliance and thereby taught me that it was part of my life. You have made so much possible for me: normal school education with a high school diploma, a degree and my very fulfilling job, first as a career advisor for high school and middle school and then for a long time in employer support. I am grateful that I had such a normal professional life with opportunities and possibilities despite my severe disability. Personally, I think it is very important that chronically ill people like me are always treated normally and that they are encouraged if they want to go their own way in life.
Since I was in my mid-30s, breathing problems increased and I noticed that I had less air and energy - I needed to rest more often. Of course, the lung function slowly deteriorated, the treatments even more intensive and hospital stays increased. Nevertheless, work, family (especially my husband), the garden, friends and also walks with our dog gave me a lot of strength.
In 2016 it was no longer possible without oxygen - that was very, very hard for me! This was followed by a dark year with long hospital stays, strenuous therapy and very devastating diagnoses. From January 2017 I was cared for for four and a half months at home, including ventilation, and then had to be flown to the hospital in Berlin.
When did you have a transplant?
On the afternoon of June 30th, 2017 the redeeming news came that they had a lung for me - I was not able to realize that properly.
I was transplanted in the night from 06/30/2017 to 07/01/2017. And from there my new 2nd life started! Now I always celebrate my lung birthday on July 1st, as that was the day I took my first breath with my beautiful new lungs.
How are you today?
In summary, I'm just happy every day that I'm alive! I enjoy this miracle every day and I am grateful for this incredible gift from my new lungs.
It is my life, but also a new one, because I can do so much myself again, which in the end I could no longer do properly or not at all or never before.
With my cystic fibrosis, I am used to following rules and implementing therapies - that helps me now. I have kept a regular daily routine with activity and rest times and the necessary therapies. That is why I organize and fill my day. I enjoy this new freedom that I don't have to inhale all the time and that I have more overall strength to live. I love walking our dog Theo every day and I enjoy being in the garden. I can finally go for a long walk again without breathlessness and laugh without coughing - that's great. I started playing golf again very slowly, I cook and try out new recipes, paint, do handicrafts and I'm just happy.
Due to the transplant and the bad time shortly before it, some things were strangely clarified and sorted for me, which was sometimes painful, but also very important and positive.
With social contacts, although I always liked to deal with people, after the LTX I approached the LTX with care, as I pay attention to the increased susceptibility to infections. I have slowly but steadily felt my way back to life here. I really hope that I will soon be able to implement a few plans that I have already made. Due to Corona, some things are currently on hold, but - as always in life - I remain optimistic.
What would you say makes your story particularly worth telling?
I was in the ECMO with pretty bad values in a more than depressing environment and in a very meager state, but with an unshakable will to live. I got the gift of my new lungs and went back the rocky road to life. Every day I think full of gratitude of the donor of my lungs and his family and hope that I can somehow reflect back the happiness in life that I feel every day.
After the LTX, it was initially a difficult way back. Exhausting therapies, adjustment to immunosuppressants, side effects ...
I had to learn a lot of new things from almost total lack of strength, after almost just lying down for 8 months. But it was worth fighting every day! Because every day I felt this increase in life in me. And then there was this joy of life, yes, a thirst for life. For me it was about 8 weeks after the LTX, when I started my new, almost autonomous life in the rehab clinic: Finally sleeping the first night without a thousand cables and lights and then (albeit a little bit very slowly and wobbly on thin legs) in start the day: wonderful!
What do you wish for
I think it is important that people waiting in the intensive care unit in this exceptional physical and emotional situation are given much more support through personal attention in order to take away their overwhelming and oppressive fear. I have always felt very well treated and looked after at the DHZB, but I have to say that this was not the case in every clinic. I would like other hospitals to orient themselves towards the way they treat patients at the DHZB, because dignity and human appreciation are at least as important as medical measures.
Patients need to know what is happening and why. This takes away fears and, in my opinion, increases acceptance and thus the chances of recovery. After the LTX, information on possible complications, rejection reactions, statistics and laboratory values also gave me confidence. And I only made it to LTX thanks to the good, trustworthy and competent care and treatment by my doctor in the cystic fibrosis outpatient clinic at KKH Greiz. She is still there for me in the context of cystic fibrosis.
What's the most beautiful?
I see life more relaxed than before and enjoy every day.
Of course I am afraid from time to time because of possible complications, but I am confident that I will be able to experience many more years with my beautiful new lungs. I very much hope that the donor and their family will feel that I am taking good care of this gift. Perhaps my joy is their consolation and gives them the certainty that they did the right thing in giving me my second life
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