LAM Treatment Alliance Fast Tracking Treatment Research

Hi, I am Viera!

The path of my life has been colorful and manifold. Full of good and bad experiences. I studied and worked very much with enthusiasm and I also always tried to use my spare time in ways that were interesting for me.

When I was 42 I had the courage to leave my homeland - Then in 1992, still Czechoslovakia, and go to Austria for a few months to gain new experiences. However, instead of a few months, the years passed and today I have enjoyed living in Austria. Besides, Bratislava is only 100 kilometers away from where I live in Alland, Lower Austria.

I tried to live healthy, to eat a healthy diet, to cherish old friendships and cultivate new ones. I was active in sports; basketball, tennis, skiing, biking and hiking. I traveled and was interested in cultural and political affairs. I was in good physical condition, but slowly I began to experience various health problems.

Well, you grow older . . . But why do I always and again have difficulties with digestion, catch colds frequently and am not as stress resistant as before? Why so short of breath when I am physically active; and this not only happens with nordic skiing, but also when I climb some stairs? In the times before, I never used the elevator up the 6th floor. I attributed the physical exhaustion and tiredness to my very active lifestyle, but why this shortness of breath? I don’t have any illness of the lungs or heart! And suddenly I experience colic-like pains in my right pelvis. There followed months of medical examinations, and finally an operation.

After the operation, Angiomyolipoma, histological judgment and final diagnosis the professor says to me, “You can be relieved now; it is not cancerous, it is Lymphangioleiomyomatosis, LAM.” I ask, “What? Lymphannn . . . How do you call this?” The answer is, “Sorry, we too do not know exactly. It is a very rare disease; but check the internet!”

Well, I checked the internet and my first thought was now can I really feel relieved and calm down? Now it is clear to me where all of the maladies came from, which I have been experiencing for the past 15 years. LAM was already there!

And then began the time AFTER, as you say. Sort of like the time after 9/11. Interestingly enough my second operation happened in September 2001.

I lived through the typical phases of coming to terms with the illness, until I finally was ready to accept my new situation in life. I have learned to take more time for myself, to accept help from others, and I have learned to say NO. One of the most difficult things for me has been the restriction of my activities; work, social and physical activity. Otherwise it has opened my eyes to what is really important in life.

I enjoy the simple things of life. I am happy about all the things that I can still accomplish. I see what I can still do, not what I cannot do! It is great to get to know new people; interesting and able personalities, through contacts abroad with self-help groups and LAM organizations. (Greetings to you Susanne and Elke, Michelle and Corine, Lucy, Amy and Havi, Bronwyn and Heather, Gina, Florence and Maureen . . . . !)

It is good to experience cooperation in the self-help group – LAM Austria. And it is nice when friends share some of their time with me.

As you know, humor is considered the best medicine, so I try not to lose my good spirits. Maybe you have seen the Italian Movie, “Life is Beautiful”? People say that a relaxed view of life helps the body and psyche not to react with tension to create disharmony, like stress or interpersonal conflicts.

Yes, I agree, but for a perfectionist like me this is not easy. So for a year I drew on the support of a good psychologist and I fully enjoy lifelong support from my cat, Kubko. But above all, my sister has been very supportive for me.

You change certain aspects of your attitude to life, restructure your daily routine and allow yourself the pleasure of personal moments of delight which brighten your life, for example:

  • Looking through a window at the green meadow in the morning and the interesting gleams of light at dawn and sunset.
  • The changing of the seasons:
  • It is so wonderful in spring to experience the awakening of nature AGAIN
  • It is fun to enjoy the warmth of summer AGAIN and to listen to the twittering of the birds
  • It is beautiful to witness AGAIN, how fall (autumn), the painter, changes the colors of nature
  • It is great AGAIN in winter to go for a walk on a deeply snowed-in path
  • To see enthusiastic faces
  • To enjoy a cup of green tea or a glass of red wine
  • To visit a good play or a concert
  • To enjoy a trip to France in my own car, accompanied with beautiful music from the CD player
  • And above all to meet friends . . . . .

LAM Treatment Alliance

E-mail: info@lamtreatmentalliance.org

Address: 64 Church Street, 2nd floor; Cambridge, MA 02138; USA

Phone: +1 (617) 460-7339

Fax: +1 (617) 864-0614


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