Update, June 22, 2014
Since writing this, it was revealed that veterans waiting for their appointments, have died while waiting for care. My story, is one of a veteran who has had access to veteran’s care and private insurance for nearly 20 years. When service members started returning from Afghanistan and Iraq, The VA Hospital I went for my appoitments in Loma Linda, became increasingly overcrowded. It is sad that people had to die before the American public, and journalists decided to pay attention.
I have expressed my frustration with health care not available to many Americans who are dying because of it. It is my opinion, and strong feeling that the Veteran’s Healthcare system is one example of delivering care to those who need medical care. It is not a perfect system, but it does work. In order for it to work, patients must learn to advocate for themselves. But this is not just about Veteran’s Healthcare, this is about healthcare for all. And now, please read about my journey, and how I developed this opinion.
My experience has shown me that patients can motivate the doctors and nurse practitioners to challenge an off -formulary treatment with reason and facts. I have received these therapies with success, but not without a fight; veteran or civilian.
I have scleroderma and sarcoidosis. Doctors have initially not known what to do with me since 1994. Over the years, my ongoing treatment has evolved into treatment and intervention based on case studies, and advances in research, without giving up until an answer is found. Not every doctor runs into my diagnoses, and active attitude, so they are forced to work with me to find the best answer. I joke about my adventures and mistakes. I share them because I want to share how I have made a difference in my own care by being an active, educated voice in my treatment.
There is a way to push through closed doors, but you can’t show up empty handed.
I was diagnosed with scleroderma in 1994. Shortness of breath was becoming progressively worse. Frequent visits to the ER with shortness of breath, was just considered part of the disease process of scleroderma. Local doctors and the doctors at the VA were of the opinion, there was nothing more to be done.
I had the Resources.
In 2007, my family had what was referred to as, “Golden Insurance”. My ex-husband and I owned our own business and I was in charge of the health insurance plan. At that time, golden insurance opened doors – even to the way some drugs are administered. I’m going back to 2004 to give an example.
When I was in the hospital, pregnant and awaiting for the anticipated premature birth of my son, my body’s organs were failing. I shared a room with a woman who had the same exact condition. Throughout our day, we were given painful steroid shots to help boost the lung development in our babies, who were about to be born 8 weeks premature. We were both connected to IV’s. I asked my nurse to please put the shot in my IV, she complied. When my roommate asked the same, the nurse was unable to do so. Why? Because her insurance only covered steroid medication to be delivered by shot. Yes, you read that correctly. My roommate was in serious pain over these shots, which created more stress to her body and her baby. The nurse could not relieve unnecessary pain with a simple shot given in her IV. Why was I spared? I did not have golden insurance at the time, I had a Magic Letter. This letter was issued by the Veteran’s Administration. Because the VA hospitals do not do pregnancy and pre-natal care, 100% service connected female veterans are issued a letter that basically states- and I’m paraphrasing: Pay for everything this veteran asks for, regarding the care of her pregnant body.
My motivation for sharing my experiences is that I have found that outstanding health and preventive care is possible. There are easier and less painful ways to do thing,s and it should not only be available to those with gold or magic letters.
Back to 2007
In 2005, I became a patient of Dr. Furst at UCLA, recommended to me by the chief of rheumatolgy, at my local VA. Dr. Furst got me to start seeing a pulmonologist at UCLA, Dr. Ross. By 2007, I had developed a healthy patient relationship with them. They did not rush to put me on the standard treatments for scleroderma because I did not quite fit the mold. They did a lot of “wait and see”. I was active with some work, like diet exercise and rest, but I was not critical. No prednisone, nothing but methotrexate.
I had been instructed by doctors thought the years that if I were at anytime short of breath, and it did not resolve with rest, I was to go straight to the ER. After many x-rays and CT scans of my lungs resulting with no answers, I collected my local doctor’s notes, films and drove 120 miles to see my rheumatologist of nearly 2 years at the time, at UCLA. It was a clinic day. I called ahead and could not get an appointment. So, I just showed up to the Pulmonology Clinic as one would crash a class. While I was waiting. I combed through my stack of radiology reports. I found in more than one radiology report this word: Lymphoma. I didn’t know much about lymphoma. I just knew it was cancer and it killed people.
I waited out the clinic hoping to be seen at the end, but my doctor did not have time to see me. I told the nurse about the mention of lymphoma in my CT scans. She shared it with Dr. Ross and he instructed me to go the emergency room, so away I went.
The UCLA ER is a very busy place. When waiting to see my doctor, I was in a room full of other beds separated by curtains. The room had a “parking lot” feel to it. There is very little wait time in the ER for a patient that complains reports the symptoms of shortness of breath. I was rushed right away for a CT scan. The findings came back the same, only this time my doctors did not assume this was scleroderma. Often, people assume that whatever is happening, is a result of a chronic illness they were diagnosed. I make this assumption often- it’s something I do need to keep in check, but that’s a whole other post. Dr. Ross and Dr. Furst were in agreement that a biopsy must be done immediately to rule out lymphoma. Just because I have scleroderma, it didn’t mean I couldn’t get cancer.
I was sent home from the ER to follow up with Dr. Ross. A PET scan was ordered, done, and my lymph nodes lit up like a christmas tree. The next day, I was contacted by my pulmonologist’s office with a referral to a thoracic surgeon. My ex-husband and I met with him the same week and surgery followed less than a week from my appointment with him. Golden insurance opened the door to get me into the ER and give the doctors the ability to run the tests needed. Getting there to get that alternative opinion, was my doing with the help of my mom and ex-husband. My son was taken care of and my ex-husband was very supportive, and all of us were very frightened.
After the biopsy, I woke up in the recovery room. I think my aunt watched my son the day of the surgery, so that my mom could be there too. I don’t remember a lot of that day. It was an outpatient procedure called a medial stenoscopy. They biopsied samples of my lymph nodes and lungs.
When I was more alert, my pulmonolgist, Dr. Ross and the thoracic surgeon whose name I wish I could remember, came to my bedside to tell me the result of the biopsy. My relationship with doctors is one that has the ability to speak candidly. If a doctor does not show any emotion or engage in productive conversation with me and barks orders at me -unless I need it- I find another doctor. Ruling out lymphoma is a very scary endeavor. To relive my fear, I take on these “fact finding missions” like a science project. I am amazed how the human body and how it works together to result in a sentient being and I feel like my doctors recognize my curiosity and humor I like to add to keep everyone- okay, mostly me, calm. My humor keeps me calm and then radiates to those who share my space, then I am energized by their calmness. It’s a two-way street- again, whole other post.
Back to the results.
Both doctors were at my bedside, along with my ex-husband. As I said, I don’t remember much, but I do remember a sense of giddiness around me. Good news was coming- sort of. The good news was, I did not have lymphoma. It wasn’t cancer. What they did find, were granulomas. They explained, the granulomas were what was causing my shortness of breath. The granulomas would enlarge due to a flare up of the condition or stress. They explained and I can’t quote verbatim, but here is what I understood. There is very little known about these granulomas. People live their whole lives with the presence of granulomas with minimal symptoms, live a long healthy life, and the granulomas are usually found after death. But there are many cases where these granulomas effect the patient relative to where these granulomas are. They can be in the lungs, lymph nodes, brain and other places. This condition is known as a disease called sarcoidosis. The two doctors told me they were stunned because they know of no case of scleroderma AND sarcoidosis being present in the same patient.
The follow up and treatment was to be determined by the team, and I was to follow up with Dr. Furst in rheumatology to determine the course of treatment.
Dr. Furst prescribed Remicade infusions. At the time, veteran’s health care was available to me but I had golden insurance. Because of formulary, I knew the fight would be easier by using my insurance at my nearest infusion clinic in Murrieta. Dr. Furst did the order, and treatment followed shortly after.
My symptoms of shortness of breath did stop after treatment began. It even appeared to help my scleroderma symptoms, and my condition remains stable, 7 years later and counting.
I was followed by the Veteran’s Hospital, but notes and treatment decisions are determined by UCLA. Dr. Furst makes the recommendations, and the chief of rheumatology at the VA, made it so.
During a routine check up my rheumatologist at the VA told me I was smart to use my nearest public hospital and golden insurance. It allowed me the ability to receive the right drug the first time. He explained to me (at the time) two other drugs would have had to fail before being given Remicade. Two other drugs failing would mean side effects and complications- entirely unnecessary, for the sake of saving money.
Like all healthcare systems, VA hospitals have formularies and they are different for every VA hospital. (again, a whole other post)
Because I asked for my records, jumped through hoops, signed releases, and limbo-ed my way to a hospital 120 miles away where the chief of research for the Southern California Scleroderma Foundation, Dr. Furst, I got my foot in the door. That lead me to treatment that has extended my life. Honestly, I suspect the only reason there are no other patients with scleroderma and sarcoidosis at the same time, is because patients didn’t live long enough to get an additional diagnosis. Now, we are living longer. Of course we need a cure, but as a patient I work with what I have. The most important traits I have are determination, patience (that totally came with practice), and the ability to find a way to get to yes. By yes I mean, identifying the problem and coming up with a way to keep it under control with treatment.
Being proactive requires work offline.
Look, I know a lot of patients go online to communities. That is great. Just don’t waste your time commiserating online when you can do something in your realm. I spent time in online communities. There are some I support and some I don’t. It does;t matter the reasons. I mention this because last week, I shared something I thought was funny about waiting for contrast to work during an MRI. In the comments, someone replied, “I can commiserate with you.” She later explain, she was just trying to say she understood. Which was well intended and thoughtful, but it did get me thinking. I write this blog not to complain or share misery and belong to a cohesive grip of victims I’ve never met in person. I want to share what works for me. The stops on my journey are filled with obstacles, but I try not to share without a solution or treatment path. The reason: I don’t want sympathy, prayers, followers or to lead anyone. I just want to see others get the same live-saving treatment I have found. I open closed doors, and even sometimes kick them down and I share that with readers here for two reasons: Because I want to help others and I believe no one should be made uncomfortable or be in unnecessary pain because they have no gold or magic. Demand better care. If you are getting care you do not think is effective, fight for it.