Wednesday, April 4, 2018

Things that make patients want to give up

I haven’t posted here in nearly a year, but I’m hitting a bad patch and I need to vent. Yesterday was a really bad day. I’ve recently lost my main specialist for autonomic dysfunction. He was an excellent and intelligent electrophysiologist with 30+ years of experience. We argued quite often. Nearly every appointment for 4+ years. However, we had mutual respect and he didn’t treat me like an idiot. When I failed autonomic tests and/or other doctors said my case was too complex he at least tried to help me. He was replaced by a new grad with no experience and no lapse/orientation period. He was gone, I went months without a cardiologist, and ended up in the ER again for the first time in years because my feet lost circulation and the rest of the office didn’t care to help or listen to me whatsoever when I called to explain.

I then met with the new replacement. He doesn’t seem to care whatsoever. My last appointment in particular was very very disappointing. I had told him several months earlier that I was losing control of my blood glucose. My blood sugar ranges between 29 to nearly 300. He referred me right away to endocrinology. I went and I confirmed my problem on their two week implanted glucose monitor. I had 34 episodes in two weeks down to or under 40. Many provoked episodes up to 300 every time I ate carbs or sugar. It was clear from the second I set foot in the endocrinology office that he didn’t want anything to do with me. He told me it wasn’t possible to have both hypo and hyperglycemia, I was too young for all these problems, and then insulted my past profession. When I pressed him for treatment he told me my brain function isn’t affected until under 40, take some prednisone (I’m not doing that) and refused to acknowledge or address the high blood sugar after many attempts to ask him.

I told the new cardiologist and he also blew me off. He said he’ll try and call him but that if the endocrinologist doesn’t think it’s a problem then maybe it isn’t and that IS an answer. A 29 or 300 isn’t a problem for me but it is for every other human being on earth? Why is that? Why am I again heldto a different standard? I then tried to call around to get another opinion and was denied appointments at 3 endocrinology offices again due to the complexity of the case.

After several months a Dexcom CGM was approved. Nobody watches it but me. So I see my glucose dropping into the 40’s or rising to 300 and can’t do anything about it.

Getting my bimonthly pacemaker reset has been another problem. They are stretching it out for 3+ months and sending in a rep who has never met me and thinks she’s going to come in and dictate to me changes she’s making or tell me that wiping the data off the programmer is the same as a hard reset on the device (it’s not). She talks over me so much that even the nurse points it out and tells her to ask the patient. Then the new EP decided to cancel yearly echocardiograms because people don’t need that just because they have a pacemaker. I explained that I was getting them due to excessive pacing and excessive tachycardia to monitor for tachymyopathy. No response. My beta blocker hasn’t been working. My feet are so swollen and blue that none of my shoes fit. Every time I run my heart soars and the pacemaker drops my rate out. I’m losing my ability to run. I needed to switch it. He wanted to double it and have me prove that I get sicker first. I did. But I’m coming to the realization that no matter what I prove it’s never enough. I’ve been lying in bed the last several nights awake with the following rhythm. I’m pacing to my max rate in the ventricle at rest and it’s likely due to the increased medication causing hypotension and increased heart block. However, nobody respects my opinion or cares what I say so no matter how much proof I have it makes no difference.

Then I get a call from a case manager from insurance questioning and interrogating me about every med and doctor I see. As if I don’t already feel like a burden and guilty for even being alive because all I do is cost everyone money for an illness that has no cure. It was great to reiterate that through an insurance employee who has never met me and has no idea of how complex this case is or how difficult it is for me to function.

I was running this winter but it was abnormally physically difficult for me. I have kept that for years. It has kept me alive and out of the hospital. I’m losing my running now. My stamina since February is very very poor. I don’t even have the energy to attempt it nor do I desire to. That’s very abnormal for me. Nobody cares as usual. When you’re chronically ill you are also seen as a Chronic complainer so when you get worse nobody investigates or helps. If my healthy relative runners noticed a sudden decline in ability they’d have a thorough investigation into the cause. With me nothing is ever done. Just deal with it yourself.

So last night I became very very frustrated. I disconnected my medication pump, stopped all my meds except the one that I cannot stop suddenly without stroke risk, biked for a while and started a fast because I want the meds out of my body and I want a clean slate for my glucose. I’m tired. Completely tired of fighting with every doctor and random insurance employees over blatant facts, and tired of having an unusual case that won’t get better, nobody can treat and apparently isn’t even deserving of management to preserve any quality of life whatsoever. Would a cancer patient be interrogated over their use of cathflow for a port? Would a carcinoid case be asked about their use of a med for their condition? Would a diabetic be interrogated about why they have a Dexcom for a 29 blood sugar?

I have no specialist that is capable of helping me advocate for the heart and blood pressure medications I need to function so now that they are clearly being threatened I am weaning off them myself. I don’t think people realize the tremendous guilt patients have. I didn’t choose this. I didn’t want my life to be ruined by a condition nobody has ever heard of, seen or believes in. Of COURSE I feel like my life has become useless and I’m only costing everyone money for an impossible to cure situation. Why wouldn’t I feel like that? Especially after getting calls that nearly flat out tell me so?

Tuesday, October 24, 2017

Running with Heart Block

Some of you know that I’m a competitive runner despite my chronic illness (Lyme and autonomic neuropathy). I often have major issues with sudden hypotension mid-run and several issues with heart rate.

I’m paced by a Biotronik pacemaker nearly 100% of the time. EXCEPT when I push myself in a race or running uphill. At that point, my intrinsic rate shoots up to about 190, my ventricle chooses not to follow (exercise induced heart block) and the pacemaker halves my ventricular rate because I’ve exceded my “tracking rate.”

At this point my legs feel like lead, I can’t breathe, I get severe chest pain and I sometimes collapse mid-race if I push through and don’t heed my warning to stop.

One of the most frustrating things I’ve dealt with as a young adult athlete who has heart trouble is the expectation that I should settle because the pacing industry is not used to younger patients and athletes. I’ve already done a LOT of settling. I’ve lost my career, my health, financial stability, self-worth, my ability to have children, and nearly all sources of happiness in my life. My life was ruined 6 years ago by a tiny tick bite. I’ve gone through so many surgeries, injuries and constant stress. Running makes me feel better physically and mentally. It raises my blood pressure and decreases my anxiety and depression. It’s one of the only activities I can do and do well with normal healthy people. I like to compete. I like to succeed at ONE thing in my life. I don’t want to give that up. So yes, I get angry when other people expect me to settle and don’t want to put in the effort to help me resolve clear pacing problems when I am putting in tremendous effort to literally just get up every day.

When I go to the starting line of a race, I’m filled with terror. I’m worried that I won’t finish outside of an ambulance because I’ll collapse on the course. I wonder if my pacemaker will behave appropriately or drop my rate in half as soon as I hit a hill. I wonder if my heart will decide to go into vtach. I’m terrified. However, I also am very proud that I can compete with completely healthy people who don’t have pacemakers. I like that nobody even knows I’m sick at a race. They don’t see my port and pacemaker scars. They see one of the top female runners in the area, and as a target to beat (in a friendly rivalry way). I like that I don’t let severe symptoms and arrhythmias scare me out of exercise. I’m proud of that. It’s one of the last things I have.

This past weekend I had pacemaker mediated block issues at my races. Despite being very well prepared and very well trained, both days, both races, I succumbed to the symptoms of severe rate drop on hills and lost overall placements as a result.

Who cares?
That’s trivial.
You should be grateful you can run at all.
I wish I could run like that.
It’s easier for you.
What are you complaining about?

These are the types of insensitive comments I often get when I express frustration with physical limitations due to my illness.

I care. When you can’t even eat a sandwich, go to sleep or stand in line at a store without injecting yourself with a blood pressure raising med, you start to grasp at any hint of success in anything. Running is that success for me. Failing in running is significant to me. It’s the one thing I have to look forward to. I’d like to have one ounce of happiness where my illness doesn’t interfere. That’s too much to ask?

This whole condition and 6 year journey has been very overwhelming and isolating. Doctors don’t  know what to do to help me, normal healthy people can’t relate to me, and I don’t really relate well to most people in the chronic illness communities. I have said so many times that I wish I had something common and easily treated. I don’t want to be an “unusual case” that constantly struggles to get treatment. I want to be normal. I’d give anything to be normal. I cry nearly every night wishing I would wake up better/cured and knowing I won’t. It’s hard. I hope the next time someone is tempted to tell me how lucky I am just because I “can run”, they stop to think about the definition of lucky. My life is certainly not it. For some people exercise is a treatment and a coping method, not a measure of the severity of an illness or a luxury.

Thursday, October 12, 2017

Update: The Stress of Being a Young Adult Zebra

So once again I’ve been MIA on this blog for a long time. Sadly it’s not because I’m better or healed. I returned to write out my anxiety because I’m overwhelmed once more.

Many people and doctors don’t realize that immense struggles that come along with chronic illness as a young adult. I got sick in my 20’s, and I have constant enormous stress about not being able to have a career, a family, financial debts/college loans, health insurance, in addition to daily health struggles.

This summer was incredibly tough on me physically. I sporadically broke my femur again while running and then injured my back about a month after that healed. I also became very suddenly inexplicably anemic and lost access to one of my IV treatments for an extended amount of time. I couldn’t run due to my injuries to control my hypotension and situational depression and anxiety. I was a mess and several times became severely depressed. This week I’m struggling with depression and anxiety again and I think it’s due to a reinstitution of Flagyl for the first time in many years. Several medicines do this to me. I get extremely sad, feel like a burden to everyone, a failure in multiple avenues and guilty for seeking medical treatment despite needing it. I cancelled an appointment for my injury and have been running through pain instead. I’ve been trying to reduce and eliminate several of my hypotension medications as well. When I’m like this mentally I push myself physically. Often too far. Several times my heart has gone into an irregular rhythm mid-run this week and I’m not eating well/enough either. I’m certain that Flagyl is a big part of the issue, but I also don’t want to contact my Lyme doctor and say I can’t handle treatment when I am the one that wanted to strengthen it (due to my increasing dependency on my pacemaker).

Another issue at play is that my main specialist, my only allopathic MD, will be retiring. He manages all of my autonomic insufficiency treatment. Several of the treatments I receive from him are what keep me functional independently and symptomatically. He is the only specialist in autonomic related heart issues in the area, and his replacement will be a new graduate with no experience with my condition, my pacemaker or me. I’m terrified. I didn’t always agree with this doctor, but I respected his opinions, experience and intelligence. Over time he became one of the only doctors I’ve met (out of about 50) that would listen to me and help. His unconcerned/confident attitude regarding very unpredictable and sometimes unexplainable heart changes has kept me unafraid of exercise. Elite level conditioning and aggressive hypotension treatment are the only things keeping me functional at all. What am I going to do if I lose that?

I have so many fears about this transition and nobody really understands via firsthand experience. I tried asking the AHA and the local heart center for help via support groups and not only do they not have support groups for people with my condition or young adults, but they don’t have support groups in my area for anyone with any heart condition of any age!

When you have an unusual condition and your specialist retires, it’s not so easy to just find a new doctor. There are very few in network and most of them have no experience with autonomic disorders. My main concern is losing the few helpful treatments I have at the hands of a doctor inexperienced with my disorder who thinks I can just eat salt, or ignore it. I don’t have the patience or energy to prove everything I say again and constantly argue and advocate. I’m tired. Physically and mentally tired. It’s bad enough feeling sick all the time, but trying to deal with physicians who don’t understand your case or argue with you about objective facts constantly is highly frustrating. I live with it every day and have done extensive research over many years. I may not have MD after my name, but that doesn’t mean I’m of inferior intelligence and can’t read or comprehend research. It’s very aggravating for me to have to argue about the impacts of this condition with another human being who has little to no knowledge of it (MD or not).

Another thing that has persistently bothered me over the years is that there are no true advocates for chronic illness patients. The “advocates” employed by hospitals are there to avoid lawsuits and protect their employer NOT the patients. I’m perfectly capable of speaking up for myself and very knowledgeable about my condition and pacemaker, but what my cardiologist doesn’t realize is that doctors don’t listen to me or speak to me with the same level of respect as they do to him. I can say word for word the same thing as he does to an ER doctor and their response is completely different. To me they throw papers, scream at me, ask me how much cocaine I’m on, ask me how many years of med school I’ve done, and refuse to help or threaten me with an AMA discharge after THEY  refuse to treat in an appropriate logical manner. To him, they don’t ask questions at all. They just listen and do what he says; which is usually the exact same thing I asked them to do: a bag of IV saline, fixing my port in a STERILE medically accepted way (not by infusing a bag of TPA into my body which is NOT protocol), or investigation into a pacemaker or arrhythmia issue. So needless to say, I’m under immense stress about finding another doctor that can respect a knowledgeable patient and who won’t take away my current treatment, change my pacemaker settings, sedate me without consent for future surgeries (another somewhat odd request) or defer to a random doctor unfamiliar with my case and expect me to trust their judgement when they are 100% objectively incorrect. I. AM. TERRIFIED.

So as of right now I’m not sure what I’m going to do to calm my fears and mind. Normally I blank out my mind and go running, but with the heart issues popping up and my reduced caloric intake due to stress I know intellectually that’s not a good idea. I guess it’s time to hit the anti anxiety herbs, detox, and if that doesn’t help start cutting out meds that could be causing a herx.