Hey, who ever gets what they expect? In my life, the unexpected is most usually the rule. Right now, the unexpected is beyond comprehension. 3 years ago, my husband, Randy, was “diagnosed” with Sarcoidosis. He was told it would probably resolve on its own, no treatment necessary. Even though he continued to get worse, no treatment was recommended, and no further testing (to make sure there wasn’t something else going on) was done. What is sarcoidosis? “Sarcoidosis of the lung is primarily an interstitial lung disease in which the inflammatory process involves the alveoli, small bronchi, and small blood vessels.” It is not caused by smoking. It’s cause is basically unknown. Only 10% of those diagnosed with the disease develop a serious presentation. Randy’s is very serious.
Unhappy with the care received by the first pulmonologist, I researched “the best”. Places like the Cleveland Clinic, Mayo Clinic, Duke U, UT Southwestern, National Jewish Health….the earliest appointment was available in Denver at Natl Jewish Health, so we went there. Dr Hamzeh, a Sarcoidosis researcher, felt that Randy’s presentation of Sarcoid was odd….not at all typical, and he felt that another disease process might be going on. He suggested a lung biopsy to be performed at UT Southwestern in Dallas. It took a while to get in, of course, and when we did, most tests were re-run. Randy was on 40 mg of prednisone, so he had to slowly lower the amount as a biopsy is not able to be performed unless the prednisone is 10mg or under.
During June, my mother was going downhill quickly due to emphysema, the disease I lost my father to in 1985. She passed on June 22. Now, my husband has a serious lung disease. He was one week away from the biopsy when his oxygen saturation plummeted to 78-83 and his pulse was a racing 120-130. The ambulance came and took him to Medical City, but when he stabilized he was transferred to UT Southwestern. He is critical but stable, and has been in the ICU at UT Southwestern University Hospital (St Paul) for over a week. He has received tremendous amounts of steroids to calm the inflammation, but so far, his breathing stats have not improved greatly. A few days ago, the critical care pulmonologist recommended getting the transplant team involved. Uhhhh, okay.
My husband has been wonderful. He looks fine, speaks well, appears in great health…except he just cannot breath without A LOT of oxygen. This will not be a short road, or an easy one. His inflammation could still resolve, but even if it does, the recovery will be very difficult…I think the hardest part of all of this is being in limbo. We really don’t know what is going to happen or what we should do. Whatever we do, we will do it together. Click to Tweet.
Today is Sunday, so tomorrow and Tuesday should bring more information to digest. In the meantime, I am realizing I need to start taking care of myself. REALLY take care of myself. So, back to yoga, pilates, and another effort to meditate. Meditation is the hardest thing of all….my mind is always “on”, and trying to get it to turn off even for a few seconds is painful.
I would really like to hear from anyone out there who has had, or knows someone who has had, sarcoidosis, IPF, or especially a lung transplant. If you have a story to share, I ask you to do so. We are ruling nothing 0ut, and considering all options. I hope to hear your stories and experiences.