Friday, September 18, 2015

Quality of Life vs. Longevity

I had a pacemaker follow-up the other day. As I predicted, my ventricular pacing, a measure of how much time I spend in heart block or pausing has doubled again from 13% to 30%. There are days that I pace in the ventricle 50%. Ventricular pacing over 40% can increase the chances of developing pacemaker-induced heart failure or reduced heart function. I will need to repeat an echo soon. If it shows signs of damage, the treatment would be to add a 3rd lead and a new device; a biventricular pacemaker.

I'm quite angry about this situation because I have always said from the first day of my illness that it was Lyme. There is no doubt in my mind. I had a known tick bite, a rash, a fever of 105 and a positive test. The progressing % of heart block is 100% due to Lyme. Despite all of this clear evidence, I have never even had access to a month of IV Rocephin. I meet criteria that should qualify me even by an infectious disease doctors' standards and still have not had it; even as I'm now developing a risk of heart failure in my 20's. None of this would have ever happened if doctors had listened to me 4 years ago and given me the month of Rocephin when I clearly wasn't improving after a month of low dose doxy. At this point it's not even worth fighting for because I've tried so many other strong treatments for Lyme that I don't think one month of Rocephin would do one bit of good. The infection is far too advanced and infiltrated into my body in my opinion.

The news about the potential of needing another pacemaker has created a dilemma for me. It's making me question whether prolonging my life and heart function would be the right decision. I question if increasing longevity would be the right choice if my quality of life will never improve and will likely continue to decline. My quality of life is not good right now. I have no way to control my BP on my own now that I'm losing my ability to exercise. Running was the one way I could get a temporary spike in BP. Oral medications are not working. I've exhausted all options that I can obtain. When my BP is low or drops suddenly, I'm completely miserable and have to lie down. I lose my vision, hearing, get slurred speech, dizziness, severe exhaustion, limb numbness, whirling in my throat, nausea, vomiting, etc. It incapacitates me 10-30x per day.

The new pacemaker would not improve anything with my current symptoms. It would only safeguard my heart from failure by synchronizing the pumping action of both ventricles. Every few months something new seems to happen with my heart so I'm not even sure how much of a safety net the pacemaker would realistically provide. With my luck, a few months later I'll probably develop VTACH or VFIB and require another surgery for an ICD.

Autonomic dysfunction is a lifelong chronic condition. So is Lyme in my case. I'm not new to treating either condition, and unfortunately very few things have ever given me substantial temporary improvement. Nothing has given me any permanent improvement. These conditions are drastically hindering my ability to function like a normal person and perform everyday tasks. The way things have been progressing this summer, I know I'm going to lose my ability to exercise and maintain conditioning very soon. Once that happens, I will very quickly lose a lot of functioning capability.

The weird awareness that I have of what my heart is doing at all times is what saved me last year. At first it was relatively benign short-lived pausing, but now it has morphed into long episodes of no heartbeat. At this point, if I had no pacemaker I probably wouldn't survive. A person obviously cannot have an absence of ventricular beats for 8 hours per day and remain alive. So this is a very serious decision I have to make if I decide to decline a pacemaker. Most people don't get this type of choice in their lives and it's easy for people to exclaim that they would do everything possible to live. It doesn't seem to be as easy for them to understand that the definition of "living" is dramatically different between someone who will regain their health as a result of a medical intervention and someone with a chronic illness who will not improve as a result of a procedure. I don't just have bradycardia or pausing. A pacemaker doesn't cure me. I don't need to hear about how so-and-so has a pacemaker and it changed their life. That person doesn't have autonomic failure. Their pacemaker experience is irrelevant to my case. For me living with this combination of illnesses is more like struggling and suffering just to get by because sadly, yet realistically I will NOT get better. There is no cure for this extent of autonomic nerve damage. It's not going to matter how many antibiotics I take.

I took medical intervention last year and kept myself alive, but was that what was supposed to happen? Am I supposed to be alive or did I just luck out? Did I make the right decision in pursuing heart treatment or did I just end up condemning myself to a life of progressing disability and suffering? My dad ignored his symptoms and that choice was a contributing factor in his death. However, I don't know what his life would be like if he were still alive today; if he had survived the heart attack but been left with severe permanent damage. Would he have wanted that? What would he have chosen?







Saturday, September 5, 2015

Bilirubin

From the time I first got sick 4 years ago, I have nearly always had mild elevations of bilirubin. Bilirubin is a product of the breakdown of red blood cells. When it's elevated, you can develop jaundice. In my case, the elevations are usually very mild 1.1-1.3 with a range of 0.2-1.0. The last few weeks I've been trending upwards and I'm now at 2.3. Nearly double of my "normal." This change happened shortly after I stopped taking actigall (a medication which may have been preventing or treating gallstone formation) and started Octreotide (a medication known to CAUSE gallbladder problems in >60% of patients). I have been having fantastic results with Octreotide so I would like to do everything I possibly can to not have that medication pulled. It has been allowing me to eat without a severe drop in BP for the first time in years. It's one of the only medications out of countless trials that has given me a reliable way to help MYSELF out of a severe symptom set.

In the past, mainstream doctors have blamed Gilbert's Syndrome on my mild elevation of bilirubin. Gilbert's syndrome is a harmless genetic mutation and it affects the way that the liver processes bilirubin. There is no need for treatment, and the liver enzymes can be expected to remain slightly high and fluctuate in and out of mild jaundice levels from time to time. This sounds logical..........except, in my case neither parent nor my siblings have ever had increased bilirubin. I seem to be the only one.

Factors that increase the chances of your bilirubin going up are as follows:
  • Dehydration
  • Lack of sleep
  • Low calorie diet or fasting
  • Menstruation
  • Stress
  • Illness
  • Strenuous exercise
Increased liver enzymes are often associated with Erlichia as well. I do not test positive for Erlichia (but do for Babesia Duncani and Lyme). 
I've also been fluctuating in and out of normal range for BUN and my potassium is starting to drop as well.  It's very difficult for me to maintain fluid/electrolyte balance with all the medications I need to take, my salt intake for low blood pressure, the running I force to keep my BP up temporarily and the hot weather we've been having. I think that if I had gone to the ER or had access to an infusion center to get rehydrated when I clearly was dehydrated multiple times, I would have none of these abnormalities.