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.

Sunday, November 20, 2016

Fainting Isn't Always POTS!

So this will likely be a controversial post since I know a huge number of people in both Lyme and dysautonomia communities have been diagnosed with POTS.........

POTS stands for postural orthostatic tachycardia syndrome. By definition, it is a rise in heart rate of 30 bpm or a sustained heart rate of 120+ upon standing. It can cause a multitude of symptoms, including fainting; however, it's a benign condition. The need for treatment is to improve symptoms, not as a lifesaving measure. There is a TON of advocacy, fundraising and research going on specifically for POTS. It has definitely claimed the spotlight in the dysautonomia realm. One of the main advocacy associations for dysautonomia focuses almost exclusively on POTS. With limited advocacy efforts for other causes of fainting, including other disorders that fall under the dysautonomia umbrella term, many patients are unaware that there could be other more sinister causes behind their fainting episodes.

A few years ago I was diagnosed with POTS. I met criteria. Unfortunately, having that benign explanation/diagnosis on my chart led to a delay in diagnosing and treating another serious condition with similar symptoms that required a pacemaker: heart block. The physical symptoms are very similar to POTS, but since I had already demonstrated on ECG that I had tachycardia, it was difficult to get doctors to believe that I was sporadically changing to the opposite problem; severe bradycardia. Eventually they listened...............after I went into cardiac arrest. 

You may very well have POTS, and yes it is benign, but having POTS does not make you immune to developing other conditions and arrhythmia's. It's of vital importance to not settle on a diagnosis too easily when fainting is involved. Make sure before you attribute fainting to POTS (or Lyme), that you have caught your episodes on an ECG. You may need to request a 30 day heart monitor or an implanted loop recorder to do so. Also, do not assume that just treating Lyme is going to resolve everything when it comes to heart symptoms. I know we as Lyme patients are treated horribly by mainstream doctors, but when it comes to heart symptoms, a LLMD is not a specialist and should not be advising or attempting to treat those types of symptoms. Any responsible LLMD will immediately refer a patient with heart symptoms to a cardiologist or electrophysiologist. The latter is a better choice for people whom do not have structural heart disorders (most Lyme and dysautonomia patients fall into that category). Also, remember, you are not going to a cardiologist to treat Lyme or to discuss Lyme. Let your LLMD do that, and let your EP take care of their specialty.........your heart.

I routinely see posts of people who have fainted with warning signs of other disorders saying things like "my POTS is flaring today" (and their heart rate is in the 30's) or "I had that and it will go away with Lyme treatment." These types of statements always scare me. Fainting is nothing to mess around with. Depending on the underlying cause, it can be benign or life threatening, infrequent or constant. If you haven't caught a fainting episode on an ECG, don't assume it's JUST POTS or JUST LYME. There are many other things that could be going on. You could be having vtach, vfib, severe bradycardia, heart block, hypotension, etc.

Some warning signs that your fainting is not just POTS or Lyme are the following:

No warning symptoms in advance (more likely to be heart rhythm related).
Fainting while lying down
Low heart rate
Skipped or irregular feeling heartbeat
Severely low BP mid-episode
Confusion upon awakening

Please educate yourself about some of the other causes of fainting and POTS-like symptoms. It may just save your life!!

Heart Block
Sudden Cardiac Arrest
Neurocardiogenic Syncope
Orthostatic Hypotension 
Ventricular Tachycardia 

What is getting a mediport like?

So I got my first Mediport about 6 months ago. I don't have it for Lyme. I have it due to severe autonomic dysfunction to use for IV saline to support my BP. I have no intrinsic control of hypotension anymore.

A port is a device about the size of a dime (but much thicker) that is implanted under the skin of your chest or sometimes your arm. The outside border of the port is metal and in the center is a silicone circle that can be stuck with a needle and re-seal thousands of times. From the top of the port extends a plastic catheter that enters your jugular vein and extends down into the larger veins near your heart (superior vena cava). Ports allow medications to be delivered intravenously easily. It can also be used for blood draws via a home nurse or at an infusion center. Regular labs will not draw blood off a port. 

The specialists involved in implanting ports are either interventional radiologists or general surgeons. The doctor that thinks you need a port sends an order for placement to one of the two. They call you and schedule you for the surgery. Most people get sedation. I do not. Local lidocaine is my preference. Occasionally people also get general anesthesia but that's not routine. 

Before you get a port, it's important to arrange how you will care for it. It will need to be locked/flushed with heparin between uses and at least once per month when not in use. The choices at first are an infusion center or home health. Later you can learn to do things yourself. That is my strong preference since the two times someone other than myself touched the port they did not use sterile technique. An infection in a port is a big deal. It can kill you. Your doctor will need to arrange an order to an infusion center or for a home nurse. The doctor will also need to arrange supplies at an infusion pharmacy separately. You will need special needles called huber needles, dressing change kits, end caps, tubing for gravity bags, a pole or a pump, saline flush syringes and heparin flush syringes in addition to whatever meds you will be infusing. 

When you arrive for surgery, you'll change into a gown and before doing so, if you are female, they may outline your bra strap in marker to try to avoid placing the port in an irritating spot. Standard questions will be asked and heart, BP, and oxygen monitors will be attached and you. You may get an IV line and pre-operative antibiotics. Then you will be rolled into the procedure room, transferred to a table and draped and sanitized for surgery. You may not meet the doctor doing the surgery in advance. I did not and that created tremendous problems due to my heart condition. When the doctor comes in, he will numb the area with lidocaine shots and make a tiny cut in your upper neck in which to thread the catheter. He'll also make a larger cut down lower and create a pocket for the port to fit into. None of this is severely painful, but it's not pleasant either. It's totally manageable without sedation, but if you are prone to anxiety you might prefer it. 

After the catheter is attached to the port and the port is in the pocket they might stitch the port itself onto muscle. This is of benefit because it will be easier to access and less likely to move and flip. They then close the port incision up, access it, inject dye do a quick x-Ray to make sure it's working and then you are all set. Some people have them leave the port accessed. You must have supplies and care organized at home or at an infusion center in advance if you do this. Sometimes they will not let you leave with it accessed. In my case they wouldn't. 

I learned quickly that it was going to be safest and most convenient for me to learn how to access the port myself. It's not that difficult. The most important thing is to make sure that you maintain sterile technique. The needle and sterile dressing can stay in for 7 days. During this time you cannot get that area wet. When the needle is not in, you can shower and swim as you wish. 

After 5 months, my first port stopped getting blood return. This is a common problem. In my case it had a fibrin sheath confirmed via X-ray. The hospital tried to de-clot it with TPA and it didn't work so I had to get a replacement.

My second port surgery did not go smoothly. I was very unhappy with the specific department I dealt with. They changed providers (new residents) at least 10x over two appointments and every time the plan changed too. There was no communication between them. One of the nurses was not using sterile technique and left me with an unprimed line of air on a pump. The supervising NP refused to communicate with me in advance regarding my pacemaker and she would not allow me to use my magnet or my medication when I needed to for a sustained rate of 160 ventricular paced. She also didn't call my EP or the pacemaker company as she should have. Then she tried to order a med I was allergic to in my IV line. I was in the room with a resident and two RN's only. There was no radiologist supervising, yet several stated that they were "present" when they were not in my notes. So it was billed as if I was with a specialist for hours under their name for a doctor that never once met me. These are the kinds of things most people wouldn't know about since they are usually sedated by that point. I did not have a problem with the resident that did my surgery, but I did have a problem with the overall disorganization and lack of communication in the department. It put me at risk unnecessarily several times. I complained to the "patient relations" office and absolutely nothing was done. I mention this because you, as a reader, deserve reality. Your experience may be great, but it doesn't always go that way. Be prepared for crappy treatment so that you are ready to advocate for yourself. If it goes well, you'll be happily surprised instead of shocked, disappointed and worried about infection like I was.

For information/instructions on how to access a mediport with sterile technique, click here.