1. The day I was diagnosed with a rare lung disease

I was unofficially diagnosed with a very rare lung disease, LAM, in mid May a few years ago at a pulmonologist’s office in Atlanta.  It all started with a pesky cough that just wouldn’t go away and so I visited my primary care doctor to have it looked at.   He wasn’t available that day, but his RN on staff was and she felt that something just wasn’t right when she heard my lungs so she suggested getting a CT of my chest in order get a closer look.  Ordinarily, a persistent cough would not lead to a CT right away, but since I’d had a history of unexplained lung collapses, the RN felt it would be prudent to investigate further.

The CT results were of concern so I was asked to follow up with my pulmonologist who suspected right away that I had LAM but confessed that he had little knowledge of this rare disease.  So the backstory is this: My right lung collapsed back in 2003 and 2006 for which I had to undergo surgery.  My doctors at the time, could not explain why this was happening.  During the 2006 procedure, I had a lung biopsy done to test for this very same disease and the results came back negative, showing no LAM cells.

You can imagine my complete and utter shock when this doctor told me that the CT showed I had LAM and that the disease had progressed.  Back in 2003 I had 3 cysts on my lungs, in 2006 I had a handful, and in 2012, there were too many to count.  “F***” I said out loud to him and he smiled awkwardly, offering no words of comfort, not that I would have paid attention.  Is there an etiquette to how you respond to a life-altering diagnosis? If there is, then I clearly missed that lesson on conventional norms because during that visit, all my filters came undone and  I couldn’t get a thought out without inserting expletives.

So naturally the first thing that came to mind after this doctor announced that he suspected I had LAM was “how did this get missed?” and other accusatory questions as I unleashed my wrath on him.  After reigning in my misdirected anger, I inquired about my outlook.  He prefaced his response by admitting his limited experience with LAM because it’s so rare.   It was his understanding that life expectancy was an average of about 5 to 10 years post diagnosis but there were some promising studies out there.

He continued on about the clinical trials, research and yada, yada, yada, but really, who could pay attention after his announcement of life expectancy? Besides, I was too busy working out the numbers in my head.  Was it 5 years post diagnosis from the 2006 biopsy or 10 years from the 2003 lung collapse? What? This word problem made NO sense and my computation skills failed me.

He did mention two things that stayed with me.  First, he said “don’t believe everything you read on the Internet about this disease, in fact, stay away from googling it because there’s a lot of misinformation out there.”  Next he said “don’t think about having any more children because pregnancy is known to cause progression with LAM.” If you’re anything like me, when someone tells you NOT to do something, that “thing” is amplified and it’s all you think about doing, which is precisely what happened.   I got on the Internet as soon as I got in the car, all the while thinking about having a third child, which was not really even on my radar screen.  It’s like being on a diet and being told not to think of ice cream.  Put it this way, for a period of two weeks, until I flew out to see a specialist at the Cleveland Clinic, I binged on ice cream. All. Day. Long.

Did I mention my husband was not at this initial visit? I  told my husband to skip this one.   Between week-long hospital stays for surgeries, doctors appointments, follow-ups and more doctor visits, we really didn’t expect to learn anything new about my lungs that we didn’t already know.

After the doctor visit, I called him and we decided to meet at our neighborhood Panera for lunch, because where else do you share this kind of news?

We stood in the Panera parking lot while dissecting the hows and whys, and sprinting through the stages of grief, not in any particular order.  He was in shock and couldn’t believe this was happening; I was angry and blamed all the doctors for not figuring it out sooner; Maybe we should have sought a second opinion after the lung biopsy that came back negative, or continued on with investigating lung collapses, and so on.  The more we talked, the more we started to become aware of the gravity of this diagnosis, until eventually the back and forth slowly died down, making way for some much needed tears for both of us.

My husband and I flew up to the Cleveland Clinic two weeks later where I received the official diagnosis.  By that time I had binged enough on Internet research to know I definitely had LAM.  The game changer for me was in the numbers.  It turns out that life expectancy with LAM is actually an average of 20+ years post diagnosis instead of 5 to 10.  I like those odds way better.

3 thoughts on “1. The day I was diagnosed with a rare lung disease

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  1. Hi Nisha I am from Israel and I love the way you described your cause. Years ago we had a book done by the LAM organization and the cathered few personal stories. I remember being diagnosed at age 49 after my 2nd lungs collapse, just the year my mother died.. After a biopsy was done and 9 years after my first lung collapse at that time nobody suspected nothing…And that was after the first dictor who saw me, decided that a biopsy can give several options and he sent me to Chief of Chest surgery that saw my xrays and he offered to cut parts of my lungs…. and than glue them so I wont have another collapse… At that time I felt ok and did not know what the are talking about… So I went to another surgeon and he tolm me your lungs are filled with cysts so which parts he wanted to cut?… After the biopsy was done my lung doctor told me: I knew it was LAM and the biopsy confirmed it. There is nothing to do… Try to avoid gluing them when I have another collapse so at the age of 60 I can have a lung transplant…. To tell you the truth I looked at him and not fully understanding what he is talking about…. But years approved how clever he was. I hate at that time two adopped kids that I adopped at age 28 and 33. It seem my body, in not succeding being pregnant after almost 10 years of treatnent just kept me alive…. I read material after being diagnosed and there was written that you can live five years in general… I took the notes and put them in hidden place and decided to keep with my life. I sank for years in a choire but felt with the years the difficulty. I did not heard myself talking different… At 2008 at age 58 had another collapse and it took more days to close from itself. At that time I realized its going to be worth… Kept working as usuall since I worked at an office of myown…. I understood I will have to have transplant sometime… I did everything but more sowly, until the day to buy and Try new paints was a pronect I u derstood its close. It was time that I had this thought that I prefer to breath hard and keep that way and not have a transplant and have to be depended all my life on certain pills…. When I had to start usig oxygen… I told my doctor I am ready….I established the Israel LAM organization at 2007. We know of 30 patients 3 have had a transplant 2 died one waiting to have one and one just after the transplant…. I had my double lung transplant at 2013 at age 64..a week later had a sudden problem in my testine had a surgery and infection and they thought I am not going to make it…. But God decided he wants me alive. Had a Stoma for three months and than a surgery to close it…. Since than I turned to be normal person. Some time forget I had LAM but my ribs from the surgery that are se sensitive from being held up for 8 hours during surgery remind me that…. I am so lucky to be healthy and normal again and to see my first granson now 3 months now….. And I am so glad to take care of my son (34) who has to have second kidney transplant soon from a philantropic donor….life can be picnic….. Ha ha

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    1. Thank you Lesley for sharing your incredible story. Despite the hurdles and obstacles, you seem to see the beauty of life in it all – and that seems to be a common trait among so many Lammies. I wish you and your son well as he undergoes a transplant. With gratitude, N

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  2. Hello Nisha,

    My name is Sarina and I am a team member of a project called Stories of Medicine. This is an initiative that aims to highlight the importance of patient experiences in healthcare.

    Stories of Medicine is a not-for-profit and educational compilation of patient experiences that will be shared with fellow students and professionals in the healthcare field. You can find it at http://www.storiesofmedicine.com.

    We believe that this post is exceptional, and that it belongs in our compilation of patient experiences, which is why we have included a link to it on our website. We would appreciate your permission to share the photo in the article as part of a featured preview of the article, linked to the image, on our website.

    Let us know if that is okay- if not, we will gladly take the photo down and simply share the link to your article. Moreover, if you are uncomfortable with us sharing the article, we can take down the link as well.

    Thank you for your time and for your work!

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