LAM Patient Stories

Life on my Own Terms - Beryl Gatzke, Canada
I have LAM and I'm lucky. It's given me a new appreciation for life and a better understanding of all those with a chronic disease. I'm lucky not to be in pain; not to have to continue with my job and cope with its ever increasing stresses; to be able to go at my own pace with few outside pressures; to be able to enjoy a new home; to be able to travel; to have my friends and family show concern for me. Yes, I wish I didn't have LAM, but I do. Now I can concentrate on enjoying life on my own terms. I keep busy every day and seldom think about what might happen, because guess what - it might not!

My LAM and Me - Gillian Turner, England
How many times have you heard it said that if you have good health than that is the most important thing in life? Before I was ill I often heard it, and although I didn't really agree I didn't argue. As well as LAM I have cardiac tumors, pulmonary hypertension, asthma, osteoporosis, steroid myopathy, polyarthritis, diabetes and hypogammaglobulinaemia. The latter means that my immune system doesn't work properly; I have to have it topped up every three weeks by having someone else's gammaglobulin pumped into me. (Thank you blood donors). I can walk only about three yards, even with a walking aid, and to go out I have to use an electric wheelchair and have someone with me - I have blackouts! I am on oxygen 24/7. According to the received wisdom I should be well nigh suicidal. I'm not. I'm not 'in denial' either.

I deal with the practical aspects of what is wrong with me and then get on with enjoying life. There are a great many things I cannot do, but what is the point of complaining? There is nothing I can do about it and I would far sooner spend my time and energy doing things that ARE possible.

From my wheelchair, and with the help of a friend I am able to garden in pots and baskets (first prize twice - excuse my boast). I can read, write, paint, listen to music and watch some television (I love watching sports). I have friends who pop in every day to see if I need anything or for a chat; usually both. These days, if I hear someone saying, "If you have your health...etc". I tell them they are wrong. Health, good or bad, is not really important. The most important thing in life is to have good caring friends.

As for living with LAM (and the rest) my prescription is this. Don't dwell on what you can't do, enjoy doing what you can do. Ask for and accept help if you need it; explain why if you don't. You will feel down at times however positive your attitude is; don't worry about it, everyone has spells like that, whatever their state of health. Whatever you do, don't let your illness take over your life. Deal with the practical side and then put it at the bottom of things to think about.

Dylan Thomas wrote "Rage, rage against the dying of the light." I think he was wrong too. Personally I intend to use any energy I have not in being angry, but rather in making the most of what light I have left.

Getting to Know Me - Eva Rosenblatt, Germany
What's the most important change in my life? I am getting to know myself better, and learning to accept myself the way I am. For years I chastised myself for being lazy. But it wasn't laziness that was sending me to the sofa after a 50 hour work week, it was LAMiness. I am more content, perhaps happier, than I used to be. My friends and colleagues have noticed that I laugh more often and more heartily than I did before my diagnosis. I have learned that quality of life is something you can choose to have despite the obstacles. I refuse to let anyone convince me that I've lost my quality of life because of 24/7 oxygen or because I let myself get pushed around in a wheelchair when the walk is too long. As long as I can drive, work, enjoy a good meal and can laugh (even if it makes my chest ache and my saturation drop), I've got quality of life.

From the Other Side of the Stethoscope - Brenda Nutt, Arkansas
"What you have is so rare I've never heard of it," the doctor said. "There is no cure, and there is no treatment." I had taken him a copy of the information from The LAM Foundation website with the definitions on the back page and he sat there and read it in front of me. (Then he sent me a bill!)

After going from doctor to doctor, I tried to think of how the doctors must have felt. What were they thinking looking back at me!? This is what I think: 'This woman is presenting this odd disease that no one knows how to treat, obviously no cure for, and she and her husband are sitting here looking at me all moon-eyed desperate for help with this dilemma they have been blind-sided with. What am I to do? Even the scientists that study this disease admit they know very little. If I act knowledgeable, I'm lying and giving false hope. If I pass her on to another doctor, she'll feel passed on once again. If I'm honest and tell her to go home and forget about it and live the best she can, she will give up in spirit as helpless. How can I be blunt and ask her outright what she thinks she needs - in hopes we can figure something out to relieve her symptom? While I can't help this patient, I certainly don't want to add to her problems by guessing. There simply are no set standards for this, I'm as helpless as she is, yet she has come to me asking for my help.'

Being the doctor or the patient is not easy with LAM, so I've learned to listen to my body and to communicate with others. I was desperate until I discovered the LAM listserv on the Foundation's web site. Thank you, Sue, for The Foundation and all its amenities. We lift each other up, share the aches and pains, solve health problems by comparisons, and share in our daily lives how to survive beginning O2, swelling AML's, transplant, and all the 'How to Get It & Where' information we can muster together. We're willing to learn and stretch beyond our comfort zone. Frustration is only what you have before you find help.

Unexpected Returns - Catherine Reuther, California
Being diagnosed with LAM definitely changed my life. Changing my career was hard because I loved the job I had for twenty years as a field engineer working on Xerox equipment. My job took me to different locations every day. I had time to come home for lunch and run errands during my workday. My company provided me with a cell phone and contacted me when my customers needed me, so I rarely had to drive to the office. I changed my career for two reasons: 1) I wondered if the exposure to toner dust might have something to do with LAM, and 2) I knew eventually my job would become too physically demanding. My new job is as Vice President of a small business that sells audiophile speakers.

During my two years here, the company has doubled in size and profits have tripled. I implemented a 401(k) profit sharing program for all the employees and feel well respected by my co-workers, as well as my boss. I commute one hour to work every day, but it is a beautiful drive along the ocean with no traffic and our office is in the country. I am now on oxygen most of the day and having a desk job and a supportive group of co-workers has eased that transition. They are all very concerned and understanding about LAM. My boss approved my working from home one day a week which is great. Due to bonuses for accomplishing growth goals at my new company, I am making more money than I was at the old job! Now that I am nearing the possibility of lung transplant, the extra money is important as well as the long-term disability insurance that I have at my present position. So, all in all - my career move turned out to be a positive!

Tish Davey, New York - Little Things Mean a Lot
The experience of having a double lung transplant is incredibly difficult to put into words. I feel that I have lived a miracle. I am tempted to pinch myself to make certain that I am not dreaming and that this is the new me. Not surprisingly, it has been the "little things" that have brought me the most joy since my transplant, like walking my son to school, going to my daughter's softball game, shopping at the mall with my teenage daughter, dancing with my husband - all the activities that I had not been able to do for years.

When I was first diagnosed, I made a conscious effort to live in the moment and not worry about the future and what it would bring. I tried to live a normal life for as long as possible and pushed myself to do things with my husband, family and friends even when I didn't feel in the mood. I made a pact with myself that I would find a way to live with LAM and not let it overtake my life. As my disease progressed, I had to limit my physical activities considerably. To offset my diminished physical activity, I tried to stay mentally challenged. I joined a book club, read classic novels and watched classic films, learned to play bridge, and learned about opera. These activities were especially helpful the closer I got to transplant.

Although I would never have chosen to have this disease, I can honestly say that surviving LAM and a lung transplant has made me a much stronger person. I feel that I can handle just about anything that comes my way. Perhaps Eleanor Roosevelt's quote says it best: "I gain strength, courage and confidence by every experience in which I must stop and look fear in the face... and say to myself, 'I've lived through this and can take the next thing that comes along,' for we must do the things we think we cannot do."

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