Anniversary

Special day today: six years ago I was admitted to the CCU slightly after midnight. My last night at home in California. Just gonna reflect on that. 

Spoon Theory: why do people with chronic illness get tired so easily ?

Another of the questions in the top three of what I get asked most often. There's two versions of the answer: one simple, one much more complex. Simply put, it's energy. I get tired very easily. 
Imagine, in a style much to my entertainment, a video game. When you create your character and are finished customizing the appearance, you begin the game with full health and an energy bar that has a maximum of 100%. Your energy bar slowly replenishes itself over time when your character isn't doing anything. Next, you play the game on hard difficulty and get a debuff that reduces your maximum energy to only 75%, and another that increases the energy cost of all activities. Imagine now that things like waking up cost 5% energy, eating costs 10%, bathing/showing cost 20%, exercise costs a whopping 40%. These little bits may seem manageable, but you chose the game in hard difficulty so you regenerate energy at a slower rate too. Not a good night sleep ? You restart the next day with -10%. Feeling sick? -25%. Overexerted yourself the previous day and spent all of your energy leaves you with -15% for the next 3 days. It suddenly becomes less of a game where you can do anything to improve your character and you're stuck in this limbo just to survive day by day and not feel bad. 

Anyway, I hope you never chose hard difficulty. For more information, look up what is referred to as "spoon theory" by professionals and people with chronic illness. See you Monday. 

Welcoming New Questions & a message

I'll keep today's blog post short and simple, and want to encourage anybody with other questions I can use as writing prompts to submit them via the form at the bottom of the page. 

My biggest interest is probably medical research. I think we live a country where most people have never needed to participate in a clinical trial and therefore have never read about what they entail, the methods for collecting and analyzing said data, or the years necessary to conduct studies that are created for the improvement of medical treatment. In college I took several classes on psychological research dtufies had to practice writing research proposals, and the acceptable standard of error between a psychological study and a medical clinical trial is .04. I'll try to wrap this up without going off on a tangent but it's incredibly important for the world and society to participate in medical research, because without it, there will be no progress. Many privately funded studies and NHS funded studies are listed and and cataloged at clinicaltrials.gov if you want to give that a glance. I highly recommend it. I'll have more for you readers on Thursday. 

Civil Service

     San Francisco used to have a highly competitive paid internship program for public policy and government relations. Every year they would accept, if I remember correctly, six total interns who will intern during the summer before their next semester would start. Participants had to be college students and one of the entry requirements was to write an essay on why you were interested in the position. At the time, it was early 2016 and I was still very much interested in politics, world affairs, civic duty, and wanting to make the world a better place. I still had the naiveté that one person could make a difference, one city at a time. 

    The crossroads of destiny were finally coming together once a friend told me about this internship. All of my struggles and achievements, the trauma and problems I had faced in my life, my desire to help people, my unnecessary knowledge of the overcomplexities of departmentalism and how to finesse its intricacies; I was the perfect person for this job. I submit my application with recommendations from some of the professors for whom I had been a TA for several semesters. I even got a recommendation from the department chair of Communication Studies at school, where I had spent two semesters working as a student assistant twice a week. What was most impressive of all though was my essay on why I was interested must've been good enough that it earned me progression to the interview round. 

    I was so excited about the opportunity to meet the people who would be teaching me the ins and outs of city government and how to excel at making things better and more efficient. A few weeks later I was spending the day at UCSF for a clinical trial I was in (for a new diabetes medicine) and spoke to the nurses and research coordinator about the entire experience. They were all impressed by my desire and dedication towards civil service and wanting to make the city a better place. So much so that they would actually remember me a year later. After being on the study medication for about 2 months, the decision to withdraw from the study was made because my cardiac problems were beginning to surface. (Disclosure: there was a decision to unmask the double-blinding for my participation and it turns out I was in the control group. I was not receiving any actual medication,) A few days after being withdrawn from the research study, I got a phone call from the SF Gov Internship Program informing me that my interview had been cancelled because the positions had been filled. Rather than let it get me down though, I'd decided to buff my resume further and I ended up working for the Department of Elections as a precinct supervisor for the 2016 Presidential Election. Several months had passed until I saw the research coordinator's name again. She had searched for the winners of the 2017 internships and when my name wasn't on there, she looked my name up on Google to see where I had gone to work; instead, she found my GoFundMe. She and the nurses from that floor at UCSF had sent the campaign a donation message expressing their condolences and how heartbroken they were that something so bad could happen to somebody so good. 

Goodbye, California.

Since it was the middle of the night, my county only had one ambulance in service. The hospital I needed to go to was in the middle of downtown San Francisco. After a quick call to their manager, the paramedics got approval to take me to the requested hospital after they explained why to their supervisor. In case of emergency, there were 2 other counties right near mine who could cover in case somebody else did need an ambulance though. 

I arrived at the emergency room, greeted by nurses who once they started to triage me quickly went to registration and verified I was the patient they were waiting for. The on-call cardiologist that put orders in for me was the head of the Advanced Heart Failure team, the head of the Cardiology Department, and the head of the Heart Transplant team. I was being admitted directly to the cardiology floor where my attending physician was probably in her 40s, young for an attending I though, who ordered an entire lab worth of bloodwork and panels for me. I'd had gotten very little sleep thay night.  

The next morning, a man name Dr. Pham came to meet me. This was the man who was able to get me admitted without question and ordered tests from behind the scenes. He explained to me the barrage of tests that I would be going through, the counseling I would receive, the therapist I would meet, and he explained why I would need a heart transplant. In the simplest terms he could explain them to me, the toughening of my microvascular vessels was going to worsen with time and the only treatments available would be to slow the heart down, which didn't solve the problem of the thickening microvessels, or to try years of medication focused on preserving the heart tissue and slowing the progress of the damage to these vessels. In summary, I could get a likely 10 good and healthy years with a new heart , and even retransplant if I was doing healthy, or I could try to spend years on medication and therapy for trying to manage my symptoms but none of them would address the actual issue. It wasn't until months later I learned that Dr. Michael X Pham was an internationally published and awarded heart transplant expert who was frequently a guest speaker at cardiology conferences about patient outcomes. His patients always had the highest satisfaction and even if they didn't live, they made the most of the chances he gave them. 

I opted for transplant because I wanted better years ahead of me. The problem wasn't until insurance denied the transportation to Philadelphia because I was "in a facility registered and equipped to perform such procedure". This is where the politics came in to play. UNOS, the organization in the US responsible for transplants requires a person to have direct and immediate family in a local vicinity for all transplant patients, as well as living with immediate relatives or an equivalent that will be responsible for administering medications at the same time everyday. A registered home healthcare nurse can satisfy this requirement if there is lodging provided and insurance will pay for the administration of medication as well as tending to the patient on a 24 hour basis. Needless to say, I did not have a spare bedroom and my closest family was in Indiana. By definition of UNOS, I was not eligible for heart transplant. When Dr. Pham argued this to insurance, they would not cover relocation because I was in a capable facility already. After several appeals and phone calls by his department, my dad came up with an idea and told Dr. Pham it. He and my vdother would fly out tomorrow, pack all of my stuff up from where I was living, and drive me back to New Jersey and take me to a hospital that was prepared for transplant. Since the brick wall that insurance had placed, Dr. Pham agreed with hesitation and cautioned us about the risk for clots with me lying down for so long and stressed the importance of taking my prescriptions to prevent this, as well as stopping every few hours so that I could stretch my legs. I was discharged that day, to go home and enjoy my last night in California. Ever. 

My Last Night at Home

During the few weeks of living at my new place, life was going well. I was seeing a new doctor at the PAMF Center for Advanced Heart Failure. We ordered the MRI and it confirmed the structural validity of the heart, meaning there was nothing visually wrong with it. There was preserved ejection fraction, no blockages, no leaking or deformed valves, and no masses that would be putting pressure on the heart. So why was it backing up with fluid ? Why was I constantly out of energy?  Why did my legs look like a 400lb woman's? 

The answers didn't come as easily as I has hoped. It turns out Advanced Heart Failure is called Advanced because it requires a specialty training in treating complex cases where hearts fail for unusual reasons. In my case, it was microscopic damage to the blood vessels in and around the heart. Keep in mind, this is theorized and was never tested because it is not "diagnostic" testing, in insurance terms, any answers from such a procedure would not alter any course of treatment and would only gain information that would not be pertinent in the treatment of my medical care. Even to this day I have never had a biopsy of heart muscle done to confirm this. However, I have had several other procedures that, in hindsight, have only exasperated my suffering and prolonged my suffering. 

With my MRI results available, my new Dr. wanted to try a different and stronger combination of diuretic medicine that would help offload the fluid imbalance in my system. It was this combination that was aggressive and helpful, but had the serious down part of making me incredibly weak. I had to eventually stop work altogether and stay at home. One of the few nights later I could hardly breathe, despite my 3 pillows holding me up and the wedge pillows making my entire bed sloped. I called the on-call cardiologist and they suggested I come to the hospital. After another call to 911, an ambulance came to get me for the last time. 

Question: "What do you do everyday?"

A very common question I get asked, in the top three of most frequent that I get asked in fact, is what my daily life is like. For the most part the answer is the exact same day-to-day. 

I'll wake up at a varying time. Somewhere between 4AM and 7PM, it ranges on how much energy I have that day and if I overexerted myself the day before, or if I'm feeling ill or if it is hot. Once I wake up, I'll usually try to eat breakfast or lunch, whatever time is more appropriate. In my mind though, any time you can enjoy the taste of a cup of coffee means that mealtime is breakfast. Logically, all meals should be breakfast then. After breakfast, I'll usually walk back upstairs and take my morning medicines. There's quite a lot of them, and they need to be taken with food otherwise I feel unreasonably nauseous. 

After breakfast and pills, typically  I'll sit on my bed and play PS5 for the remainder of the day until it's dinner time. Depending on my energy, I'll either a) go downstairs a few times just to look outside, walk around the pool, or see my parents and dogs, b) go back to sleep because I don't have the physical energy to endure the day, c) watch a movie or show if I don't have the intellectual energy to play a video game that requires thoughts and interaction, or d) talk to friends online and do any of the above activities . If I have the energy, I will help prepare some of the ingredients for dinner. I'll usually avoid the actual cooking step though because the heat takes an immeasurable toll on my body and drains all energy from me very quickly. If I end up cooking or prepping on a hot day, the next day I'll usually be asleep in my room all day. 

Once dinner is ready, eaten, and over, I'll take my evening medicine and repeat my afternoon routine for a shorter duration. After which, I usually like to wind down with a show, movie, or something interesting to read. When it is actually time for bed though, I won't be able to fall asleep naturally because of primary insomnia. That means for no other reason than my body does not enter delta-wave sleep easily, I'll take my ambien or a different class of sedative to help induce sleep. It's ironic that I cannot sleep or actually get "restful sleep" (research deep sleep or delta-sleep) naturally but my body will easily be drained of energy. After the sleep medicine kicks in, it's shut-eye in the dark with a faint green light from the pacemaker monitor in my room, and then goodnight. 

Long Drive

    After taking a few minutes to regain myself, I walked down the hill and then to the right to the house I lived in. The bright and beautiful day didn't matter to me anymore. I wanted to go in my room, get in bed, and lie down until I felt completely better. That took about an hour. Afterwards, I took a shower to get all of the grime and sweat off of me. I sent a message to my primary doctor about what happened, and his office replied almost at closing time that they have an opening tomorrow morning but recommend I also schedule an appointment with a cardiologist. When I submit an appointment request to cardiology that night, I got a call the next morning from an office in Burlingame that's in the same medical network with all of my providers. They said that one of the doctors had an appointment spot on Friday and could see me then. I immediately cancelled with my primary doctor, who in hindsight never noticed for two years my irregular heart rhythms and only blamed things on my weight and never knew that my weight gain was actually edema, and waited the extra day to see my very first cardiologist. 

    Friday came around and I drove down to Burlingame, about a 30 minute drive on the highway, just one turn to get on and one to exit, the most simple drive compared to this nonsense in New Jersey. Looking back, I actually loved my drives down to Burlingame because they gave me answers to questions I had about my health, they helped me stay calm by providing comfort about what to expect with what I was dealing with as a young adult living on their own, and I had a scenic 30 minute drive down a gentle slope the was just ever so slightly turning left down the way there. After the exit, its just down another hill until I see a white parking garage next the brick-orange rectangular hospital face. Its here I would visit weekly for the next few weeks before moving on to the next phase of how serious things would get.

    Inside I check in, get seen by a nurse, and then start waiting in the patient exam room for the doctor. In walks a doctor who, from first appearance, must be in his mid-50s, good physical health, wearing glasses and a white coat with the name Tak C. Poon, MD, FACC in red lettering across the chest. He greets me politely and asks how I've been doing and what is going on that brought me in. I explained to him about the drive home from work and how suddenly I got sick and something felt very wrong with my chest. The very first thing he explained was that my resting heart rate worried him, and he wanted to get a chest x-ray to check for any abnormalities, and if nothing was apparent then he wanted me to see a doctor to perform an angiogram to rule out risk of heart attack and any blockages in my heart. Now that I know what he was worried about, his sense of calmness was comforting and he did a great job at not alerting me at what may have been going on. 

    The next week I got my x-ray, and that quickly ruled out any visible abnormalities. While the results were good, they were mixed because it also meant that I needed to go forward with the angiogram and get an actual procedure to have a tiny catheter go into my heart. Dr. Poon reviewed the x-ray results with me and placed an order to have me wear a type of monitor that was basically a heavy band-aid that goes overtop of your heart on your chest and takes readings for 14 days. The angiogram was scheduled for the following week, and I started wearing the heart monitor patch the day the x-ray results were reviewed with me.

    During this entire period, I had been hospitalized 3 or 4 times because of chest pain, shortness of breath, or feeling faint. Each time was a different combination of reasons, but they must have happened at some inconvenient times for my housemates because my landlord the week before my angiogram happened told me that he was no longer renewing my lease and would start showing my room to other renters in April. I argued against how illegal it was that I was being evicted for medical reasons, but he insisted my lease was month-to-month with no guarantee on renewal and that me disturbing the other housemates had nothing to do with his decision, though when he text me informing me of his decision he did mention that they had been complaining and he hopes I get better. Having been homeless in San Francisco once before, I was in awe that this was happening at a time when my doctor had ordered me to work no more than 5 hour days and no more than 4 days a week, with plenty of rest and to start taking medicine that would make me urinate dozens of times daily. On the bright side, my landlord was reasonable and accommodated the day that I had my procedure and did not show my room during that day so that I could recover from anesthesia and rest in peace. The procedure itself was uncomfortable because it was in a cold room where they told me I'd be asleep, but as I told them I was still aware of what was going on they said that I would eventually fall asleep. Though for the better part of the procedure I must've actually been asleep, I still remember the serious pain in my wrist when they brought the catheter out and I shouted in pain. The nurse to my right said, "You felt that?" to which I obviously replied "Yes, I told you I am awake!". After the doctor said that I would forget about it, they applied a painful amount of pressure to my wrist for several minutes before wheeling me to the PACU where the nurse offered me orange juice since I was already fully awake. She discussed my discharge info with me and that they had scheduled an appointment with Dr. Poon to follow-up with my next steps. 

    A few more days later and I get a message on Facebook from an old housemate that moved out of where I was currently being evicted. She told me that she recently purchased a house and had a room available. It was the only thing that took weight off my shoulders at this time, and I could never thank her enough. Mary, if you read this, know that you helped me during one of my hardest times when I was living all alone and I really appreciate it. The day after Mary messaged me and I saw the room, I booked movers to do all of the moving and lifting for me since I was on orders to not over exert myself now. Before my last day living in that house, I had an appointment with Dr. Poon to go over the angiogram results. Sadly, there was nothing wrong. My heart vessels were clear, unclogged, with no leakage or blockages. It sounds like it would be good news, but it isn't. Its the exact opposite of what you'd want to hear next. He had me come off from sitting on the exam table so that I could sit on the chair next to him. He explained to me that the the angiogram shows the large blood vessels on the heart, and that there are smaller ones that can be seen on an MRI and that is the most detailed imaging they'd be able to get, but he suspected there was problems on an even smaller scale. After reviewing my medical record more extensively, and I mean way back since I arrived in San Francisco five years ago, he looked at how my A1c was (my blood sugar average) and told me the most likely cause is that the microscopic vessels that fill with blood that surround the heart are toughening and becoming stiff, and that is why my heart is overcompensating by pumping so fast since it needs to pump the correct volume of blood. The percentage of blood being pumped with every heartbeat was normal, the problem is that the heart was beating so fast to compensate that fluid would start to build up in the lungs and the rest of the body. This is what caused the shortness of breath, the weight gain, and the swollen legs. It was called edema, and its caused by excess fluid held by the kidneys. The medicine I was on would help my body process extra fluid by forcing me to pee it out. Between the x-ray, reviewing my history, my physical exams, my stress echocardiogram that I did in between the x-ray and my angiogram, and lastly the constant state of fast heart rhythm from the heart monitor; after all of those tests, he wanted to order a cardiac MRI and then told me that he would refer me to a different cardiologist that specializes in advanced heart failure. That was the last day I had seen Dr. Poon, and a week later I moved into my friends house, into a comfortable new room where I felt relieved and at home. I was welcomed again. On the days I came home from work and she was there, she would offer me food she was cooking or ask how I was doing. She always cared. I would only live there for less than 3 months.