Patient Profile - “GG”

I am so excited to present to you all another patient profile to read. I learn so much from the patients that I meet every day. Their experiences, outlook on life, and the motivation that drives them, teaches me that everyone has their own unique journey in this life, and we can all stand to learn a “little something” from each other. I met “GG” a little over 9 years ago. Her warmth and positivity are the lights that she brings to everyone that meets her. GG was diagnosed with interstitial pulmonary fibrosis and her condition deteriorated fast that her only option to live was a lung transplant. In the past I have set up my patient profiles as a “question/answer” format but I leave it up to each of them individually to take the dialogue where they what it to go and I think after reading GG’s own words you will discover the authentic way in which she experienced her own journey with having this lung diagnosis and the transplant that followed. Knowing GG is to love GG. I am so glad that I can share with you all a little piece of my dear friend’s journey and hopefully you can take something that she has lived through and use it to live your best life.

And so, I present to you…. GG

In the “Circle of Life”, we never know… mine was not knowing my lungs would be my nemesis. Change is hard, but defines each day of our lives. My challenge appeared in the spring of 2008, drainage and coughing. This had been occurring for a while and I was seeing an Ear, Nose, and Throat doctor and was treated with sprays hoping both would stop! Alas, both continued and in the spring 2009, I had a chest x-ray that revealed Emphysema or Pulmonary Fibrosis. I consulted a team of great case managers and saw my primary doctor who verified my eminent need to see a pulmonologist and have breathing tests done.

I knew as I looked back in the past year at least, I had been compensating for my slow decrease in breath by parking closer and closer to where my office was. I saw a pulmonologist at VCU Health and indeed the diagnosis was Pulmonary Fibrosis. Pulmonary fibrosis is often a fatal lung disease. It occurs when lung tissue becomes damaged or scared. The thickened stiff tissue makes it more difficult for the lungs to work properly. As Pulmonary Fibrosis worsens you become more short of breath. Diseases and conditions that may cause pulmonary fibrosis as a secondary effect include: (FromWikipedia, the free encyclopedia)

· Inhalation of environmental and occupational pollutants, such as metals[7] in asbestosis, silicosis and exposure to certain gases. Coal miners, ship workers and sand blasters among others are at higher risk.[4]

· Hypersensitivity pneumonitis, most often resulting from inhaling dust contaminated with bacterial, fungal, or animal products.

· Cigarette smoking can increase the risk or make the illness worse.[4]

· Some typical connective tissue diseases[4] such as rheumatoid arthritis, SLE and scleroderma

· Other diseases that involve connective tissue, such as sarcoidosis and granulomatosis with polyangiitis.

· Infections

· Certain medications, e.g. amiodarone, bleomycin (pingyangmycin), busulfan, methotrexate,[4] apomorphine,[8] and nitrofurantoin[9]

· Radiation therapy to the chest

Whew! The Pulmonary doctor stated my diagnosis was Idiopathic Pulmonary Fibrosis which means unknown cause.

Never thought the breath of my soul would eventually become less breaths!

I am a nurse…thus, I became very proactive. The shortness of breath for me was very disabling as I progressively needed more oxygen and eventually mobilizing myself in a wheelchair with some assistance at times. I could barely walk without coughing considerably without stopping. How challenging as I COULD NOT BREATHE!

My next challenge was to make a decision about options: medications or a lung transplant. Transplant to me at the time was trading one condition for another except my chances of dying were greater if I did not have the transplant. I often prayed to “detect God’s presence and discern His direction.” With great conversation with my husband and my family, we decided to be listed for a transplant in April 2010. I had what they call a “dry run” in May and that lung was not for me. June 4, 2010, I received a miracle, the gift of life!

I had many conflicting thoughts as the donor family had a loss and I received the joy of the loss… Her name at first was “Lily” as one of my sisters and I felt she stood for purity, new life… then later I found out her name was Analiz. She was twenty years old, so young. She became MY beloved angel. She originally was from Paraguay. “Breathe” was my mantra. I braced for grieving as things changed and progressed. I was determined to have a positive mindset, that is “a powerful thing.” After the transplant I no longer needed oxygen and I can breathe…. I had a short time with diabetes caused by the rejection drugs. No longer, but I do take quite a few medications.

I am 67 years old and nine years out from transplant! I am blessed with a steadfast, supportive loving husband, three beloveds: supportive, loving adult children and two great wonders-my grandchildren, 4 and 6. I have many friends and staff whose presence and help has been unmatchable. I am a nurse and I am the Program Director for a program for children with special needs. I came back to work four months after my transplant and have been working since, one-step at a time each day.

I loved gardening. This was nixed, as there is fungus, spores, etc. in the soil that would affect an immune suppressed person like me that might affect my lungs. I do have a few plants in my kitchen window that I watch grow JMy husband helps with the changing of soil. I love swimming, music, dancing, crafts, reading and most of all playing and being with my grandchildren. I have difficulty going from a sitting position on a flat surface to standing position. This is the hardest position for me! I have to compensate by using props (a table, chair, etc.) or a person to assist me in getting up. Walking is very hard some days. I struggle to regain muscle strength. Pulmonary Rehabilitation has been a constant that encourages me to move forward in living and being fit as I can be. Exercise is extremely important to maintain your body and muscle strength. Listen to your body as it talks to you. Go when it says go. Rest when your body says rest. Be kind to yourself. None of these are easy.

Use your purse lip breathing, gather things together in one place when doing things so you are not going back and forth using energy, and after taking a shower or bath, it may be helpful to use a cotton shower robe and this will help you dry off without using extra energy. Spicy foods make me choke thus I avoid spicy food.

Listen ~ Follow directions ~ Take medications as prescribed ~ Be careful about exposure to germs ~ Make good choices ~ Meditate ~ Laugh ~ Pray ~ Ask for help ~ Share your struggles ~ Believe bonds connect us all ~ Every story is unique ~

Embracing you with peace, breath of light and Love.

Thanks for reading!

Remember: We are in this TOGETHER!

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:) Christina

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