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Awareness Spotlight - DAD (Diffuse Alveolar Damage)
It started about 2 months ago when Dad started feeling a little sick, like he had a cold. When the coughing and trouble breathing became more bothersome, he went to see his doctor who diagnosed him with mild pneumonia. Although he wasn't feeling great, his physician encouraged him to take the trip to St.Maarten that he and my mom had been planning all year with their family and friends.
In St. Maarten, dad was feeling worse and worse and by the time he arrived home he was using a wheelchair to get from the plane to the car. After a doctor's visit upon return he was sent to Norwalk hospital on March 8th and was put on oxygen because his breathing was so labored. No one had any idea what was wrong with him.
Within days he was transferred to Yale-New Haven hospital and on the second day they transferred him to the ICU where he was requiring 100% oxygen just to breathe. At this point he was awake and mentally fine, but moving was impossible and breathing was only possible with the oxygen assistance. No one at Yale knew what was causing this sudden illness, so they decided to do a lung biopsy.
Because our dad was unable to breathe on his own, the only way to perform such an invasive surgery, was to put him on a ventilator. We were forewarned that coming off a ventilator is not an easy thing to do and told that it may take a couple of days to wean him off, and during that time her would stay in a sedated state. As they wheeled him into the OR, with my mother right beside him, he whispered, "We had more love in one day than most people have in a lifetime".
When he came out of surgery we were anxious for results and even more anxious for him to wake up. The results trickle in slowly and he has yet to wake up. The doctors are keeping him in a sedated state until it seems he can breathe on his own. So far his numbers have not shown that he can do that.
We were told by the doctors that he has Diffuse Alveolar Damage (Hamman-Rich syndrome) and the start of Pulmonary Hypertension. Hamman-Rich is a rare lung disease that effects otherwise healthy individuals who do not have a history of smoking. The symptoms, like his, are pneumonia-like and sudden. The syndrome results in a hardening of the lungs and there is no known-treatment.
But we don't take no for an answer, nor we do sit back and assume that things will "just happen", so we have been pro-actively searching for answers, for treatments, for miracles. Quite honestly, I diagnosed my father's condition days before the doctors at Yale did, and we are determined to find some options for treatment as well. And if we find there are none, we will channel our collective strength and pass it on to him when we touch him and speak to him as he sleeps.
We have suggested steroids and lung transplants, but as of now, we wait. Dad is currently being treated for a common infection that many people develop after surgery and it will not be cleared up for 8-10 days. Once it clears up, we will once again be looking at options, even when the doctors say there are none.
I promise to try to keep you as updated as I can. We really, really appreciate all of you who have been checking in with us, visiting the hospital and reaching out. Hopefully this site will give us a place to gather and share information.
We know our father is strong. He is one of the best men anyone could ever want to know. If anyone can fight this, it is him, and we are determined to help him every step of the way.
For additional information, please email us at sisters@lula-belle.com.
Spotlight Testimonial
This spotlight is very close to our hearts as it is our own father who is suffering from the disease. It is in times like these when we learn of rare conditions that we hope to create awareness around them and hope that people can help if they know more.
from Lula belle sisters
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