I was feeling short of breath for a couple of weeks and really didn't think all that much of things. I made a non urgent appointment with my primary care MD who thought I had a blood clot in my lungs (PE), he sent me directly for a CT Scan which did not show a PE but did show diffuse disease in both of my lungs. From there he sent me directly to stony brook ER. In his words, these are not lungs that are seen in people walking around, usually they are hospitalized and very sick and even possibly on a ventilator.
So off to the ER I went on July 3. I was admitted and a battery of lab tests were done, and I was worked up for pretty much everything from pneumonia to auto immune diseases. Everything in my lab work so far has come back normal.
They did a bronchoscopy and washed out my lungs, and took a biopsy. The results of the biopsy would take 5-7 days so they sent me home on oxygen to wait for the results.
The main thought for a diagnosis was something called hypersensitivity pneumonitis. This is a severe allergy that effects the lungs and usually treatable with steroids and removal of the effecting agent.
Just to follow up with my primary MD, I went in to see him on Monday after I was discharged and he felt that I was unsafe to be home even with the oxygen and recommended that I go to New York Presbyterian for further evaluation. So Tuesday morning, off to NYP I went. I was seen and evaluated and they also felt I should be home an wait for biopsy results.
That Friday I had an appt with SB to review my biopsy results and they came back inconclusive and were sent to Mayo Clinic for further evaluation. They also did a repeat chest X-ray and I was looking worse not better. The concern was that there is something in my home that I was allergic to and the doc suggested I either go on vacation or be readmitted to remove myself from the environment to see if I improve at all.
At that point NYP called and decided that it was not safe for me to be home and requested that I come back to be admitted. Which I did.
I have been here at NYP since July 15 and every day I am getting a little worse.
On 7/19 I went for a surgical lung biopsy where they went in and removed a piece of my lung to get a bigger sample to evaluate.
7/20 was a difficult day of recovery for me. 7/21 the pulmonologist came back with some preliminary information and confirmed that it is NOT cancer, and it is NOT hypersensitivity pneumonitis. They are looking at another possible diagnosis that hasn't been looked at before called Lymphangioleiomyomatosis (LAM).
Another doctor came in on Friday and explained to me that what we are looking at most likely will have an outcome of either I will need a lung transplant or this could possibly be terminal and she advised me to contact the Chaplin.
So what we know at this point:
It is not cancer
It is not hypersensitivity pneumonitis
I am oxygen dependent and can not perform any activity without using the oxygen.
The plan at this point is to remain here at NYP for the next week and hopefully get a diagnosis start a treatment and see how I respond.
This is going to be a looong journey for us. We appreciate all of the incredible amount of support that we have received so far and I am sure will continue into the future.
I have 3 small kids ages 5,3 and almost 2. My husband, John, is home but he too is a bit debilitated at the moment. He recently had foot surgery from an injury at work (FDNY) and is currently in recovery and has been out of work since March on medical leave. This is the beginning of a long journey ahead and I will be needing a little help for me and my family. Any help with this page
is GREATLY appreciated! Thank you in advance
- John Sarris
- Kathleen Sangen
- Nancy White
- Amanda D
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