This may seem like a really odd title to a post, but it's actually pretty relevant at this point. When a person undergoes medical training, there are a few mantras one must learn.
1) If you hear hoofbeats, think horses not zebras.
This basically means that there is usually a relatively simple diagnosis or answer to the patient's question of what is wrong with them. After all, why would any patient have a rare disease? Especially one like Mito. Here's a newsflash that hasn't really sunk in with a lot of medical professionals: Mito isn't actually that rare. If it was rare, why in the world are there 200 people in my Mitofriends Facebook group?! This is solely devoted to teens and young adults, and does not take into account the entire Mito community. My point, however, is that Mitochondrial disorders aren't as rare as one may think. In fact, more evidence is showing that Fibromyalgia may be a Mitochondrial disorder. What's more is that the Mitochondria of your cells also play a part in other more commonly known disorders such as Diabetes, Alzheimer's, Multiple Sclerosis, Parkinson's disease, and ALS among many others. Honestly I can't say I understand why the medical community doesn't get with the program on this one. An explanation of the actual phrase- Obviously you are going to see a horse more commonly than you would a zebra. So the same can be said about rare diseases. When a doctor is attempting to diagnose a patient, they are much more likely to try and find "simple causes" such as a nutrition issue or high blood pressure. Here's the thing though- medical zebras exist. I'm without a doubt one of them.
2) Eat when you can, sleep when you can, and don't screw with the Pancreas.
OK honestly I'm both having a little too much fun with this post while quoting Grey's Anatomy and attempting to prove something of a point. Doctors go through rigorous training to get to where they are. There's the four years of college, then medical school and then a residency. All of that considered, it takes 6-8 years minimum to become a doctor. Plus, their time is spent not only doing a ton of reading, research, and studying but also time in clinical which can be very time consuming. A med student's schedule is very full and demanding. Perhaps you're wondering where I'm going with this. I'm trying to say that most doctors are not really bad people. They're just like every one else. Each has their own gifts, personalities, weaknesses, and specialties. But, something had to make them want to be a doctor, right? The phrase "don't screw with the pancreas" is both sarcastic and true. A person can live without a pancreas, but they will not regulate their own blood sugar without it. Losing a pancreas can really wreak havoc on a person's body. Alright, I'm done with the Grey's Anatomy mumbo jumbo.
Besides attempting to adjust my perspective and my life due to ever-changing circumstances, I am also in a position I have never wanted to be in. It's no secret that I have been having issues with Medicaid covering my healthcare costs in the past year or so. There is a reason for it, but to me it does not seem very valid. Last year I had a lot of seizures at work, and their policy was to send me to the hospital by ambulance each time. While I understand why the policy is in place and that their hands were tied, there really wasn't a reason to go to the Emergency Room more than a couple of times. Usually after a seizure, I need some time to recover and then I can get back up and work. At times I will get confused, but that's usually later in the day and it subsides in a relatively short amount of time also. Yes, I will be very tired, but I can still go back to work. Further, people with seizure disorders really do not need emergency care every time they have a seizure. They should go in if their seizures do not stop, if their breathing is compromised, or if they have injured themselves. One good thing that did come of this is that they finally were able to get around the issue of having me sent to ER each time I had a seizure and have specific guidelines in place. Without a doubt, the most frustrating aspect of this is that the reason I am on the Restricted Recipient Program in there first place was not really because of any decisions that I made myself. These were made for me at a time when I was not able to say what I wanted done, or if what I wanted could not be followed.
To put it mildly, I'm more than over being on restricted coverage. I think it was a very hasty decision on the part of Medicaid and that they are going way overboard with their restrictions. My status means that I can not see another doctor, or go to another hospital or clinic without a referral from my PCP and approval from my insurance. Only my PCP is allowed to order medications for me, which is extremely problematic when he decides to take vacation because then if I need to see him or need a medication refill, I'm pretty much sunk. For most "normal people" being on restricted insurance really wouldn't be that big of a deal. But when you have a chronic, multi-system, cellular and neuromuscular disorder, it's huge. The specialists I see are vital to my overall health and well-being. Insurance refused to cover my visit with Dr. Kendall in January, so I decided to pay out of pocket for the trip. While it was well worth the trip and I would do it again in a heartbeat, it was beyond frustrating to try to get everything into place just so this appointment could happen. Dr. Kendall gave me a clinical diagnosis of Peripheral Autonomic Neuropathy. Step 1 in our journey to diagnosing a definitive cause for my Mitochondrial disorder. Dr. Kendall strongly suggested that I see a neurologist with the University of Wisconsin who specializes in Autonomic disorders. In addition, she ordered several tests.
Fast forward to yesterday morning. I received a call from the University telling me that they were finally going to schedule my testing so that I could see the doctor! To give you and idea of how excited I was, let's just say that I've been waiting three months for this to happen. We scheduled the testing, and I asked to then schedule my appointment. Then comes the block. During my conversation with the scheduler, I was informed because I have out of state Medicaid, they would not even schedule the appointment. Even after I told them that I was willing to pay out of pocket or set up a payment plan, they continued to tell me that they would not schedule the appointment. I sat at the kitchen table in tears and filled with disbelief and despair. For 14 years I have fought tirelessly for answers, and just when I am starting to get somewhere, boom, something's in the way. While it's true that I could see another Autonomic specialist, Dr. C is someone who is both Mito literate and someone whom Dr. Kendall sends her patients to a lot. My autonomic issues and neuropathy have profoundly affected my life. Because many of the nerves in my body are dead or dying, (they need energy too!) I have pain and decreased sensation in my feet as well as issues with digesting food and emptying my bladder. This all makes perfect sense to me.
Again, though, I was sitting at the table and really couldn't believe what I'd just heard. Here I am, unable to work, not really enjoying life and having an extremely difficult time eating and swallowing. Yet they're telling me that they won't schedule an appointment with a doctor who has a real shot at giving me a more acceptable quality of life and better overall management of my illness. I just sat there, thinking over and over in my head what the next step was. One thing I really appreciate about Dr. Kendall is that she is really willing to help and she communicates to you in an efficient and timely fashion. I decided e-mailing her would probably be a good way for me to get an idea of where to go next. She gave me several options- the first being that I could look for another autonomic specialist in the area that would be more likely to be covered by my insurance. Second, I could talk to the lab about doing a benefit analysis to determine if the tests would be worthwhile. Third, I could talk with an insurance commissioner or ombudsman to assist me and to explain to them how my insurance company is hindering my healthcare. Finally, and perhaps most frightening, was I could wait for a crash and see if they would be more likely do something inpatient. However, I was not terribly optimistic about this option because I have been inpatient before and told that I did not have Mito. So, I decided to call the state ombudsman's office. A representative from their office contacted me, and told me that I could go through an appeal or grievance process by way of a fair hearing. What this means is that I basically have to gather a ton of information about myself, about Mito, and why I need the care I am requesting. None of this is going to be an easy process and there are no guarantees that things will change or improve. But at this point, I have nothing more to lose. I decided it's time to give it a try. Maybe they will figure out something I can't. There's a lot of anxiety around this issue, which makes it incredibly emotional also.
On to the next part of yesterday, I finally saw one of the specialists I needed to see, Dr. R in Urology. Because I had a previous kidney stone issue and had been diagnosed with Interstitial Cystitis, Urology is an especially important doctor to have on board. However, nothing could really have prepared me for what I was about to hear. First of all, I am retaining urine. Most people do not and should not. After I voided (or peed) there was still 330 mL's of urine in my bladder. Also, he told me something else that shocked me: He does not think I have Interstitial Cystitis. This is what I thought was a conclusive diagnosis for the past four to five years. Looking back though, I guess it didn't fit as well as we had originally thought. At this point it looks like the nerve damage is causing me to have issues with bladder emptying. Once I started to wrap my head around the idea, we talked about where to go from here. At first, Dr. R wanted to take me off of my Ditropan (a medication used for bladder spasms and overactive bladder) and start me on Flomax. I really wasn't a fan of the idea of stopping the Ditropan, as it is the only way I'm able to sleep even a little. Without it, I do not sleep. The thing that really impressed me with this doctor is that he listened to what I had to say and was willing to work with me. I told him I would be willing to decrease the Ditropan, but was not willing to stop it at this point. After discussing it, we decided that we should just keep the Ditropan and add Flomax. Flomax is considered an Alpha blocker, but is often used in older gentlemen with enlarged prostate. Some off label use for it includes better bladder emptying. Because of the urine retention, he was concerned that there was a high risk of infection as well as kidney damage. So, we agreed that we would start the Flomax and I would come back in four weeks. He also cautioned me to the fact that the Flomax would have potential to worsen my autonomic issues. Tonight was my second night of taking it, and I do notice some more dramatic drops in blood pressure with position change. We decided that we would give it a week before we talked about doing anything else if this side effect was not tolerable. Tonight was not nearly as bad as last night, so I'm hoping this issue will improve.
As far as PT goes, I don't feel like I'm making too much progress. My muscles are continuing to fatigue very easily and they are still quite weak. I'm supposed to be going to therapy tomorrow morning, in less than 6 hours. PT was what I decided would be important to help me get back to work. There are other issues I would like to discuss with PT but I am trying to take it just one step at a time.
Justin and I are working on combining households, which is difficult for two people who have lived alone for a significant period of time to do. It feels like we have literally double of everything! Moving is a really good excuse to clean house and declutter. I will take it when I can get it, and let me tell you it desperately needs to get done! Many of the things we do not need I am working on selling or donating. This will be quite a process, so honestly I'm glad we're doing it now instead of just before the wedding. Doing so would only add more stress to an already very stressful time.
The most exciting thing is that I am under a month from marrying the love of my life. I can not wait to start our life together and start a family. Though I do go through so much every day, I know how blessed I am that I have Justin in my life and that he is committed to sharing a life with me.
For now, please pray that we are able to get a good ruling from the judge when the time of fair hearing comes. This is a very difficult and emotional issue. I feel very strongly that I need to get this care so that I can have a better overall quality of life. I want to have a family, and now more than ever that goal is finally within my reach. This is one thing I just can't allow Mito to take. And why should I? It's taken almost everything else.
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