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“Living with a chronic illness is hard. Some days, navigating the healthcare system is harder. I am a nurse, looking at healthcare from the other end of the stethoscope. Join me on my journey for answers and a cure – and definitely a few laughs, too!” As a young nurse in 2011, Sarah Beth Cowherd, RN began blogging about her experience in healthcare. She wanted to explore how a new generation of nurses were changing the face of healthcare through the use of technology and social media. Soon…
“Radiculopathy: refers to a set of conditions in which one or more nerves are affected and do not work properly (a neuropathy). The emphasis is on the nerve root (radix = “root”). This can result in pain (radicular pain), weakness, numbness, or difficulty controlling specific muscles.” (Wikipedia)
So I thought I would provide an update on my diagnosis/treatment journey.
About a month ago I came to the end of corticosteroid treatment that proved beneficial. I started to show signs of Cushing’s syndrome–moon face, weight gain, etc. (and no, I won’t post a picture). At this point, my cardiologist and I know that I need to begin weaning off the prednisone because the risks are now outweighing the benefits. Unfortunately, the doctor that is now in charge of my care, the researcher at EVMS, is not completely convinced that my autonomic dysfunction and multifocal radiculopathy are caused by an autoimmune process.
As his team is meeting and discussing what their plan for me is, I become sicker and sicker. About 3 weeks ago, I was at the point to where I could not get out of bed. Even making it to the bathroom was too much of a task. When I lifted my head, the room spun. I was short of breath and my heart rate was extremely unstable–reaching 160s-170s at rest. I knew I needed to be proactive and force the issue with the team.
I came asking for IVIG as my gut was telling me this is an autoimmune problem. The PA I saw was very attentive. He listened and I knew he heard the distress in my voice. I was at the end of my rope. I needed a treatment plan ASAP. Even though I tried to remain logical and clear, my emotions took over as I pleaded for the treatment. I tearfully asked him, “Matt, what would you do if you were me? What would you do if you had two physicians–your neurologist and cardiologist–who you trusted immensely, recommend this treatment of IVIG, and one physician who is the expert who wants to hold off?”
Matt took a deep breath as if he was really putting himself in my place. He hesitated as he answered, “Please don’t feel as if we are withholding treatment from you. That is the last thing we want to do. I will take your concerns to the head of the team and I will let them know your position. Call me on Friday (it was Monday) and I will let you know what they say.”
That week was agony. Not only did I feel terrible physically, but my mind was racing with what the team would come up with. Would they still not recommend the treatment? Would I have to return to the Mayo Clinic? Would I have to push the conversation and force the issue? All I want is to be a patient. I want to stop feeling like I need to drive the treatment process because all the doctors want to do the absolute least possible to get by and avoid liability. I just want to be the patient.
To my surprise, Matt called me himself on Friday morning. He informed me that they wanted to start a 6-8 week trial of Imuran–an immunosuppressant. This trial was to give us a better idea if the cause is immune related. If I begin to feel better, and objectively, my autonomic functions improve, we then will know if IVIG would be beneficial.
I couldn’t believe what I was hearing. He came up with a plan, provided a timeline, and even let me know that he had called my cardiologist and collaborated and agreed on a plan. Can you believe it?
I got a CBC drawn on Monday to make sure my WBCs were normal prior to the initiation of treatment. On Tuesday, I started the Imuran. I finally feel like I am comfortable with what is happening. I am in agreement with the plan and am hopeful this treatment will help guide us to a diagnosis. We will see if my gut was right and my disease is immune related. Fingers crossed I will have IVIG in 6-8 weeks.
And so we wait.
Do you want to know what makes me sick (no pun intended)?
The insurance company denied my Long Term Disability claim stating that there was not enough evidence to approve the claim. Therefore, I will effectively be terminated from my job this week–and lose my health insurance. The irony in the situation is that if I were to go apply for health insurance to cover me during my unemployment, they undoubtedly would deny me coverage based on the fact that there is evidence that I have a preexisting condition.
What in the world is wrong with this picture? The sick patient, who has already been thrown around the system–tossed from physician to physician, specialist to specialist, hospital to hospital–trying to get to the bottom of a complication health situation, has just been forced into the cracks– the cracks in the bottom of a broken system.
Basically, the marginalized patient is forced to:
We need to fix this problem.
I read an article recently that said the average length of time from onset of symptoms to diagnosis of autoimmune disease is 12 to 15 months.
That may not seem like a long time to you, but to me, it is a lifetime. Twelve months of vague, yet debilitating symptoms. 1 year of multiple specialist appointments a week. Countless blood draws, MRIs, EMGs, neurological exams. ER visits. Out of town specialists. 20 different medications. 40 different side effects to those medications.
In 8 days, I will reach that 12 month mark. Lets throw a party.
I do feel like I am close. I have an actual diagnosis of “autoimmune disease”–but they still don’t have the specific one. I want to name it: “Autoimmune disease that affects the autonomic nervous system and causes multifocal radiculopathies.” I guess that may be a bit long winded. Apparently I also have Schmidt’s syndrome- otherwise known as autoimmune polyendocrine syndrome type 2– and Hashimoto’s thyroiditis.
Autoimmune diseases are complex. Patients with these problems face pain, fatigue, changes in regulatory systems, and countless other issues. To doctors, patients who are seemingly healthy looking that complain of these symptoms often get misdiagnosed with things like depression, anxiety, stress, irritable bowel, and overuse injuries. At some point a blood test such as a positive ANA or an IgA deficiency will peak their interest and cause the physician to investigate further–or, in most cases, send the patient to a specialist who will investigate. What has really struck me a CRAZY is how sick I had to get before the physicians really took hold of my case. Now, I have 3 amazing doctors- a neurologist, a cardiologist, and a neuroendocrinologist–who are just around the corner from a larger diagnosis and treatment option. (Hopefully IVIG).
Take heart: As evasive as they may seem, autoimmune diseases can be managed. If you are going through this right now, all I can say is press on. Get to a doctor that will take the time to listen to you and really take in to account what your symptoms are. Don’t give up if the doctor tries to simply manage your symptoms. Do the best you can to eat right, drink fluids, and sleep well. Keep going. We will get there.
Recieving disability payments is more difficult than one might think. To catch you up, I recieved Short Term Disability payments through my employer over the summer. After an initial denial of my claim, I appealed the decision and eventually was approved based on a suspected diagnosis (and the pulling of strings of top executives in the company). With Long Term Disability, I have not been so lucky. My initial claim was denied because they did not see sufficient evidence in my medical record to prove that I am, in fact, disabled.
Let me tell you, this is a very disheartening event–to have an insurance company extract quotes from medical records that “prove” I am qualified physically to work. Infuriating and insulting is more like it. They included one quote from my cardiologists note that stated on July 30, 2012 this doctor states “she is alert and oriented”. OK, insurance company. Just because you can recall the date and know what type of building you are in does not mean that you can work 12 hour shifts as a nurse. They also decided to ignore the rest of the note which states that everytime I stand up, my heart rate skyrockets to 170 and I have episodes of near syncope.
They extracted another statement from my neurologist that said that the small fiber biopsies were normal and negative for demyelenation. BUT, what they failed to research is the fact that you don’t need small fiber biopsies to be positive to diagnose autonomic failure or dysfunction. They decided to ignore that fact as well.
I had my cardiologist fill out the physical capability form for the disability claim because he is closely following my case. He clearly stated that I cannot stand, lift, or walk. My physical capabilities are limited to activities of daily living ONLY. Surprisingly, there was no mention of this document at all in the denial letter.
All this being said, I am currently in the process of appealing the decision. This could take up to 6 months. The worst part about all these minor details is that I AM SICK. I have no energy to sit up and research the policies, obtain all my medical records, call lawyers, etc. It seems almost impossible. But, I press on.
I will lose my empolyment offically next month–which means I will lose my health insurance. There is always COBRA, but without disability payments, that will depleat my savings quickly. Even with disability payments, I won’t be able to cover my rent, expenses, COBRA payments, or medical bills. It is also possible that I will be recieving treatment in the near future–an infusion that costs $10,000 a bottle. Five infusions in a treatment session, repeated every 6 weeks to 2 months until you are better.
At this point I’m simply frustrated. Unable to do much because of my current symptoms, I am stuck here just thinking about the claims and the impending financial difficulties.
It seems to me that there is something wrong with this healthcare system. So far, I have slipped through the cracks, been denied short and long term payments, and been passed around from specialist to specialist. You would think that I, an educated nurse, would be able to navigate the system–think again.
Everyday I would go to work as a nurse and treat my patients with dignity and respect. I would defend and protect my patients until the end. I worked hard to uphold the standards that my employer drilled into us. All I ask is to be treated by my employer and their insurance providers with the same dignity and respect that I worked so hard to achieve for my patients.
Is that too much to ask?
I’m sorry for not keeping up the blog. The past month or so has been a mess. I’ve been experiencing a decline in my autonomic function. I’m having a lot of trouble with my bladder–mainly urinary retention–requiring a few ER visits, multiple doctors and tests, and most awfully, catheters. (TMI?)
So right now I am waiting. Last week I had some testing done at EVMS by a world reknown doctor who does a ton of research. He did testing on my autonomic system. This includes sensory testing on my peripheries, testing on the blood flow in my feet, and stimulation testing on my heart rate and blood pressure. My good friend, Bobby came with me for the testing. He was laughing when I was setting off the heart rate alarms when I stood up. At least my heart rate was elevated during the testing. I always feel like things normalize when I see doctors and they don’t understand what I’m talking about. Not this time.
All that being said, I’m waiting for a decision. This guy is supposed to get back with my cardiologist and decide what to do. Fingers crossed they will come up with a treatment to try. Otherwise I’m headed back to the Mayo Clinic. Unfortunately, Johns Hopkins refused my case. Apparently, they don’t have an autonomic specialist there. One must wonder what in the world is wrong with them that Johns Hopkins does not have an adequate specialist–and actually refers you to the Mayo Clinic.
Sorry this is a quick update. I will keep you all posted on what they decide! Thank you for all the support.