The world is a decidedly less funny now. Yesterday, an incredibly wise, insightful, humorous, and courageous man succumbed to his lifelong struggle with cystic fibrosis. If you’ve read Life Disrupted, then you remember how sage Brian’s thoughts on life, love, and chronic illness were.
It was a privilege to know Brian and to share a part of his story. The past couple of years were particularly tough for him in terms of disease progression, and he made the decision to join the lung transplant list recently in light of that. In fact, he was called in for a possible lung match when things took a turn with an overwhelming infection. I cannot imagine the emotional roller coaster and devastation of that scenario, especially for the many, many people who loved Brian and supported him every step of the way and were hopeful for new lungs.
Today is a gorgeous sunny day, with low humidity and plenty of blue sky. It is the perfect day for all of us, especially those of us with respiratory problems, to take a deep breath. To inhale and exhale, and appreciate the simple gift that motion is.
It should never be as hard as it is for some.
I can’t think of a better time or a better reason to remind you about the life-saving gift that is organ donation, not just for people with cystic fibrosis or PCD, but for patients of all ages and diagnoses who are waiting—waiting for a cure, or waiting for a chance to extend their lives…simply waiting.
So sorry to hear this news – many thoughts both to you as you wrap your mind around his loss and to his loved ones.
I may not have “good” organs to donate, but have also considered the idea of donating body to science to see all the ins and outs of my various chronic conditions.
Thanks, Rachel.
It is always tough to see people progress to the point where they need transplants, but amazing that the option is there.
I am an organ donor and while I know not all my organs are good, who knows. I think about the people I love who may very well need transplants and I want to shout from the roof tops how important it is, and how important all contributions to science, like the one you describe, are.
A friend of mine recently passed away due to an infection in her blood stream. She was in the hospital being treated for malnutrition brought on by her cystic fibrosis. Her older sister, who has CF as well, recently received a lung transplant just after graduating from high school. It was extremely difficult to watch someone who was younger than me, and who had a full life ahead of her, pass away. I am currently in college working to receive my nursing degree, and she will remain in my heart as my motivation for the rest of my life.
We sympathize with Brian and understand the difficulties that come along with a chronic disease. I work with Good Days from Chronic Disease Fund, and it is our goal to assist chronic disease sufferers in gaining the treatment they need. By supporting our organization, you could help these patients too. http://www.gooddaysfromcdf.org/ We wish you the best, and let us know if we can help.
I’m so sorry for your loss Laurie. I’m a donor too, for whatever can be salvaged after half a lifetime of illness. Take comfort in knowing that Brian’s (and your) courage in dealing with his (and your) disease has inspired and strengthened many people.
Hi Laurie,
Thank you so much for sharing your story and Brian’s. I want to express my deepest sympathies and condolences on your loss. It’s amazing how quickly we realize how precious something as simple as breath is once someone has taken their last. I truly appreciate you taking this opportunity to remind others how wonderful, and important, the gift of donation can be.
As Rachel mentioned, donating to science is another wonderful option. I work for a nationwide whole body donation organization and we are so thankful to our donors and their families for choosing to give back to future generations. We always encourage individuals who want to give back to register as organ donors as well as whole body donors for research and education.
Science Care provides training for thousands of physicians each year on the latest in medical advancements, benefiting the community in many different areas, including diabetes, spinal injuries, osteoporosis, colon and liver transplants, cancer research, and more.
I’m very sorry to hear. Reading your blog, I’ve learned about a world I didn’t know much about, and the effect it’s had on me is that I will start giving blood and sign up as an organ donor. Thank you for the eye opener!
Thanks,everyone, for your input and good wishes. It is wonderful to hear people are donors, and it is great to know Brian’s story has such an impact-he certainly impacted everyone who knew him powerfully.
About 10 years ago, I was recovering from a virus (which may or may not be applicable) and just couldn’t seem to start feeling better. I had started to feel achy *after* the virus and it culminated in a day of pain that I can only describe as having been in a car wreck – that’s the type of muscle pain I was having. After that initial bout which lasted several weeks, the pain settled into my shoulders, neck, lower back and hips. I finally went to the doctor because the pain in my hips became so severe I was convinced I had bone cancer. During the exam, the doctor pressed on the areas I’ve later learned are the pressure points. There was only 1 pair of pressure points in which I didn’t feel distress when he pressed on them. After ruling out RA, I was diagnosed with fibromyalgia.
My fibromyalgia started many years ago and I didn’t know it. I always complained “my skin hurts”. The only way I could describe it was it felt like I was sunburned and the slightest touch would hurt. At the same time, I had terrible problems staying asleep. I woke up every hour. I even wrote down the times I woke up one night to give to my doctor. They put me on Trazodone and it works pretty good most nights. Then about 5 years I had an adverse side affect to Simvastatin where it caused severe muscle pain. I truly believe that’s what started my fibromyalgia. First it was in my neck, right shoulder and armpit area. I put heat on it until I was burned and ice on it until I was frostbitten but nothing worked. My doctor did about every test imaginable including EMG, and MRI. Finally I was referred to a rheumatologist and was “officially” diagnosed. I took Nurontin (3600mg daily) and Effexor XR for about a year and all that did was make me gain 60lbs. Now I’m on Lyrica, vicodin and still on Effexor. At first the Lyrica seemed like it worked but now it just takes the edge off. I just asked my doctor about Topamax which a relative takes for chronic pain and she’s looking into it. In the meantime, I just sit on the porch in the middle of the night when nobody’s around and cry because I’m so tired of the pain.
I cant imagine the pain that everyone is in when illness gets to this level. My Aunt recently passed at a very young age due to a sudden brain hemmorage. She was an amazing woman and was able to donate her heart, corneas, skin, and liver… It is a true blessing Im sure to recieve an organ but it also gives hope to the family that just had a loss helps to feel like a part of them went to live on. thanks for the incredible blog… best of luck..
What a pity for a person who is suffering from breathing problem. But they must struggle and fight this kind of disease. A will and spirit to survive are needed for them.
Brian, just keep your spirit. Love to you