Patient Profile - "Helen"
Last month I featured my first patient profile on this blog and I have received a lot of wonderful feedback about it. People really do inspire others with their own personal journey and this next patient is no different. I first met Helen about 6 years ago and we hit it off on day one. Her wonderful smile and her sweet giggle as she talked about her love for her family, gardening and nature instantly made me want to get to know her better. Through the years, we have literally laughed together and cried together. My hope is that each of you can take something positive away from reading about her story that you can use in your own life. Some things that I want to mention about Helen that she only briefly touched on in her interview (or didn't mention at all) is that Helen is a "go getter." She volunteers countless hours with a local animal rescue league. She absolutely loves to garden and maintains her beautiful garden all organically without the use of any pesticides or chemical fertilizers. She has been vigilant about exercise. She takes frequent walks with her beloved dog, attends pulmonary rehab, and also rock climbs (Yes, I said rock climbs) while wearing oxygen at her local climbing gym. She is a devoted wife, mother, and friend frequently traveling with her wonderful husband to visit friends and family from California to England. Helen has researched and obtained some of the best physicians in our country to treat her LAM diagnosis occasionally making trips to the National Institute of Health for testing and evaluation. Trust me when I tell you... I'm inspired.
So with our further ado... I introduce "Helen"
1. Tell us about yourself. (Age? Family? Career?)
I was born in the UK, met my husband whilst at University, married and had 2 beautiful boys who are now young men. I worked as an elementary school teacher before coming to the US in 2000.
2. What is your lung diagnosis and how did you first learn you had a lung condition?
I was diagnosed in England in 1997 with Lymphangioleiomyomatosis (LAM for short) after experiencing several pneumothoraces (collapse of the lung) on both sides. I underwent several surgeries to remove parts of my lungs and to attach my lungs to my chest wall and diaphragm through a procedure called pleurodesis which has helped to stabilise my lungs against further collapses. LAM is a rare disease which affects women, a genetic mutation leads to the proliferation of LAM cells in the lungs, progressively destroying healthy lung tissue and causing the decline of lung function. It also causes tumours called angiomyolipomas to form in the kidneys. As yet there is no cure, although great strides in research have been made over the last 20 years into the cause of the disease made possible by the tireless fundraising efforts of The Lam Foundation, a non profit organization that was founded by a patients’ parents. Clinical trials with LAM patient volunteers have produced a drug regimen which slows the disease in some patients, but a cure still remains elusive.
3. What types of activities do you enjoy? Have you had to make any accommodations due to your lung condition?
My first collapse happened whilst horseback riding, my favourite activity from childhood, and although I carried on for a few years after diagnosis, I haven’t ridden since we came to the US. My other hobbies are gardening, bird watching and walking my dog Hamish. I also love reading, baking, listening to music and travelling, I play board games and online RPG adventures, volunteer at a no kill animal shelter and am a member of an indoor climbing gym. LAM is a progressive disease, and so my activities have definitely shifted in emphasis from more of the active ones to more of the passive ones, although having supplemental oxygen for the last 4 years has helped me to continue to enjoy my more strenuous interests. I haven't worked full time since 1993, when I had my first child. I was lucky to be able to work part time until we left the UK in 2000, and I have only worked a couple of part time jobs here in the US, and not at all for the last 4 years. My disease causes fatigue, and I'm never sure how I'm going to feel each day, so working would be extremely difficult. I am full of admiration for patients who continue to work with a lung condition, I don't know how they do it!
4. What activities do you struggle to do on a daily basis?
To be honest, pretty much everything is a struggle! I've always been an active person who enjoys being outside, so the progression of my disease is mentally tough as well as physically debilitating. Simple activities that I used to take for granted, like showering, getting dressed, fetching the mail, doing laundry, vacuuming now make me breathless and feeling tired. Bending, reaching, lifting and carrying things are also difficult so I have to plan activities carefully and pace myself. I've learned to plan out my days so that I do only one major strenuous activity per day, and I usually spend most of the weekend resting. Evening activities are difficult as I'm usually exhausted by dinner time, so if I have a planned evening out, I try to have a quiet day, and don't schedule anything the next day.
5. Do you participate in an exercise program or pulmonary rehab? What do you do to keep fit? How have you benefited from this exercise?
Yes, yes yes! It would be so easy to just sit at home, but exercise is absolutely essential to well being when you have a lung disease. I've been attending pulmonary rehab for 5 or 6 years. It's fantastic! You get to exercise in a clean, controlled environment with the support of the fabulous respiratory therapists. They tailor your exercise program specifically for you, monitor your progress and adjust your program accordingly. They also advise on how to best manage your particular disease and the environmental issues that can affect you. Being able to exercise with other respiratory patients is amazingly supportive, as going to a regular gym can be intimidating and frustrating - very often respiratory patients look fine to an outsider, and struggling with activity in public can be really embarrassing. I make sure that I do some form of exercise every day, even if it's just walking my dog. Exercise opens your lungs, gets your circulation going, sharpens your mind and lifts your spirits. It's extremely important to stay as active as you possibly can, and to keep your muscles working.
6. Do you have any tips or advice that you have figured out over time that help you to manage your lung condition?
Careful planning of activities and daily exercise are essential. Letting friends and family know about your limitations and accepting help is key. Learn as much as you can about your condition and be your own advocate for health professionals. Take your medications. Listen to your body but push yourself to stay active. Adjust your lifestyle to fit your abilities. Eat healthily and avoid smoke. Breathe and live fit!
7. Best advice given to you since your diagnosis.
The doctor who diagnosed me years ago told me that I had to stay fit and active in order to stay healthy. I honestly believe that if I hadn't taken this advice, I would definitely be a lot worse. He also told me to learn as much as I could about my disease, to educate others and to join a support group. I'm sure that doing these things has helped me enormously.
8. Worst advice given to you since or diagnosis.
I can't think of any! I've been extremely lucky with the help and support I've received from health professionals, friends and family. However, I always research everything that I'm advised to do or medications I'm told to take. I have a fabulous, carefully chosen health care team that I trust.
9. Anything else you would like to share with our readers?
I think it's important to be your own advocate. Living with a pulmonary diagnosis is tough, physically, mentally and emotionally. I found a good pulmonologist whom I trust. I make daily adjustments to maximise my energy, for example parking close to the store so I have more energy to actually walk around it, organising my house so that things I use most are in easy reach, we actually moved house three years ago into a one level home so I don't have to tackle stairs. I love to garden, so my husband built me some raised beds which are easier for me to manage, I do a lot of shopping online, I prioritise activities to get the most out of my favourite things. I try to always be kind - having a “hidden” illness has taught me not to judge others, everyone is dealing with something and we can all use a little extra love!
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