Please help our dear friend stay alive!

Please help our dear friend stay alive!

We have come together to ask people to help our dear friend and classmate, Michael, in his fight to stay alive. After countless surgeries and decades of constant sickness, Michael was recently diagnosed by Stanford research physicians as having a disease that was not previously described by medicine. He is being treated with an experimental combination of medications and bed rest, and he still has some serious surgeries ahead, but he now also has real hope that he might recover for the first time in his life.

Michael has been unable to work for many years thanks to his medical issues, and is completely dependent on close friends for financial support. Unfortunately, he lost the bulk of that support several months ago, and since then has been using credit cards and cash advances to pay for his living and medical expenses. He’s now out of credit, which means he’s out of time. We do not have the resources to support him on our own, and we need help from other kind and generous people to support him in his battle for better health and a longer life. He truly cannot stay alive without help.

We asked him to provide better details of his diagnosis and experience, and have included that in the rather lengthy FAQ you’ll find below, but trust us when we tell you that we’ve never known anyone to be so fragile and so indestructible at the same time. His experience has been horrifying to witness, and we really cannot imagine living with the sort of trials he’s had to face. But he finds a way to laugh about most of it, he remains optimistic about the future, and he’s handled tremendous adversity with exceptional grace.

Despite his challenges, Michael has managed to remain an incredible friend. He is often our loudest cheerleader, our best listener, our biggest fan. He makes us laugh, he makes us feel special, and he makes us forget just how sick he is, just how much pain he’s in, just how hard it must be to live in his body. We love him dearly. And as long as he’s willing to fight, we really don’t want to live in a world without him in it.

Please, please help us. You’re not only saving Michael’s life, but you’re also improving the lives of more people than you could possibly realize. Our current goal of $95,000 provides Michael with critical funding through the end of 2021, but we hope to provide him with help far beyond that. We encourage you to make an ongoing donation if possible, but any amount is helpful. If you want to read more about his experience, he has described it in his own words in the FAQ below.

Sincerely,
Krista, Tracy, Tim, Sharmila, Amy,  and Marcela


FAQ:

So what’s wrong with you, exactly?

Even someone who’s known me for ages might not know that I didn’t go through puberty as a teenager; for reasons never identified, my body produces almost no testosterone. Unfortunately, I was nearly 23 when I was finally diagnosed and began hormone therapy, and this late start meant that only parts of my body were able to develop as intended. Only half of me is the right size; my muscles grew, my beard came in, my nerves expanded, but my bones, and my joint spaces, and my ligaments, and my tendons, and my cartilage all remained woefully inadequate or undersized.

The imbalance is permanent, which means, in part, that my tendons and ligaments snap and tear easily, much of my cartilage is eroding or calcified, and many of my joint spaces – particularly along my spine – are pediatric in size, which has led to chronic pain from compressed nerves throughout my body. To date, I’ve had more than two dozen surgeries to address these problems, including five spinal surgeries with three fusions among them, one of which required cutting through my lower back and my lower abdomen at the same time. I’ve also had a complete rebuild of my right ankle that required microfracturing all of the joint surfaces to compensate for missing cartilage, and I’ve experienced the reattachment of my right biceps tendon, which inconveniently snapped at the distal end while I was visiting friends on the East coast. This tissue imbalance has also led to unusually complicated or atypical cases of neurogenic thoracic outlet syndrome, early onset arthritis, cervical spinal stenosis, carpal tunnel syndrome, ulnar and medial nerve compressions, intractable migraines, pudendal nerve entrapment, severe sleep apnea, and a host of other issues that are byzantine and difficult to treat, particularly when they all occur in the same body.

Many more surgeries await, depending on when my immune system can tolerate them (more on that in a bit). Along with two additional fusions in my cervical spine to restore and retain nerve function in my dominant arm and hand, I’m slated for a barbaric-sounding series of three surgeries that involve splitting my femur open longitudinally (from the knee) and attaching a plate to one side to realign a rapidly worsening valgus deformation of my left leg that is starting to impact nearly all aspects of my life. This trio of operations is meant to straighten my leg, level my pelvis, and hopefully slow down the rate of deterioration taking place throughout my spine. There are other smaller nerve and soft-tissue procedures on the horizon, but stabilizing and preserving the health and function of my spine while delaying additional fusions is critical to improving and preserving my long-term quality of life.

My physical issues have been incredibly difficult and remain daunting, but my other silo of medical concerns have been even more worrisome and challenging. As my immune and autoimmune problems have accelerated in recent years, it has become more and more difficult for me to function in the world. I had roughly 15 surgeries between late 2011 and the beginning of 2014, and though the rate of repair has slowed in the period since, 2014 also brought with it random episodes of fainting, inexplicable and alarming changes in how my body was making blood and processing iron, debilitating fatigue, severe restless limb syndrome, and a weird sort of full-body, pain-med-resistant electrical/nerve pain that was completely new to me. Giving me iron immediately led to the creation of a dangerous number of red blood cells, but eased the pain. Removing blood normalized my red blood cell count, but it also caused my iron stores to crash and my pain levels to escalate. By Fall of 2014 I was deeply fatigued, at very high risk of having a stroke, and was either giving blood or getting iron nearly every week. There was no way to win. I had most of the symptoms but none of the genetic markers for a particular form of blood cancer, and I also started having a number of autoimmune issues. For not the first time, everyone agreed that something was really, really wrong with my body, but no one could agree on what it might be. One Stanford expert on uniquely difficult cases said to me, “There is no doubt that you are sick and experiencing some serious disease process, but I’m equally sure that it is something that has never been well described or defined by modern medicine.”

I spent the next 3 years dealing with ever-worsening fatigue, with increasing and near-constant full-body pain, and with a dwindling immunity to viruses and infections. I had a near-death experience with a bacterial infection that entered my bloodstream after a lumbar fusion in 2016, I had mono for all of 2017 as well as another near-death episode with an upper-respiratory infection on Thanksgiving of the same year. I ended up at the Stanford Chronic Fatigue Clinic as a last resort; I had so many other fatigue factors – a history of sleep apnea, depression, anemia, low testosterone, autoimmune disease, etc. – that CFS had seemed almost too simple at the time. But it was beginning to seem ludicrous that one patient could have so many problems, one after the next after the next, and yet not have some sort of underlying cause or overarching umbrella diagnosis to explain all of it. Thankfully, the Stanford CFS clinic had just published fresh research on cytokine levels as biomarkers for fatigue the month before my first appointment, and it was in October of 2017 that I was officially diagnosed as having a disease that is new to medicine.

The cause is not completely understood – but stress and trauma play a significant role in the severity of the illness. My life history includes toxic amounts of both, and the CFS doctors were able to determine that my body is damaged on a cellular level; the mitochondria in my cells – the battery that provides the energy for healthy function – was broken and could no longer recharge nor store energy properly, which meant that it’s very hard for me to build up a reserve of available energy, but very easy for me to deplete it. I also had multiple markers for chronic inflammatory disease, including chronically elevated levels of ferritin and hemoglobin, as well an excess of a protein called C4a that was many times above the generally accepted “healthy” upper limit. On top of that, the part of my immune system that fights viruses and tumors was depleted to a point that had been previously unseen in the clinic. Known as NK or “natural killer” cells, the NK cells I had left were few in number and even worse in quality. After comparing my situation to being among the first patients to be diagnosed with GRID – now known as HIV – my CFS doctor informed me that my viral resistance was so low that I could easily die from even a mild case of influenza, and that my body no longer had immunity to any common cold or cold-like viruses I might have had previously.

It’s important to note that my disease is not similar to HIV in that it is not viral and is neither communicable nor contagious, but being around other people while I attempt to improve/recover can be incredibly dangerous… for me. I had been chronically sick for years because I could now contract a virus from even the most healthy of people. In fact, I no longer needed to contract a virus from someone else to get sick; by just getting too physically tired and crashing – which happens quite easily with broken mitochondria – I could reactivate dormant copies of viruses in my own body. Not only did this explain how I seemed to get mono four times in one year (I have collected all of the viruses that cause it) but in the last twelve months alone – along with my usual spate of less serious viruses – I had Hepatitis A despite having been vaccinated for it, as well as viral meningitis; in both cases the most likely cause was casual contact from someone making a food delivery.

In addition to all of this, the onset of my current financial challenges precipitated an explosion in the number and severity of autoimmune issues I’m facing; just one year after a clear colonoscopy, I suddenly have a profusion of pre-cancerous growths in my colon that require surgical removal. I have also suddenly developed a worrisome testicular lump, patches of folliculitis in weird places, a proliferation of cysts in a very intimate place that have no documented medical precedent and will require multiple sessions of surgical excision, and an embarrassing and painful skin condition called hidradenitis suppuritiva, which has autoimmune roots. This list is far from exhaustive; in fact, I now have new autoimmune-related issues nearly every week. I’m clearly ill in a number of ways, but it is truly the stress that threatens to kill me.

How long have you been sick?

I’ve actually been sick for decades. I had a pair of bilateral hip surgeries for a congenital issue when I was 11 and 12, and spent junior high in and out of a wheelchair. I had what I now know to be autoimmune issues in high school, began having problems with my immune response as early as my freshman year of college, and started having odd neurological symptoms a year later. And things have snowballed rather steadily since. I was already “sick all the time” by the age of 30, and there’s no doubt that my health problems were compounded by the two separate 5-year periods that I lived without health insurance as an adult thanks to my pre-existing conditions. There is sound reason to believe that all of my medical issues have the same root cause. I would note that my childhood was actually extremely stressful, and knowing internally that I was gay in my particular circumstance and environment meant that I lived in a state of near-constant fear. The doctors currently treating me have shared that nearly all of their patients had childhoods marked by unusual or atypical levels of trauma and/or stress, so it’s fair to say that my current disease actually began to develop when I was a child.

Why do you need money now?

Even though the past couple of decades have been incredibly tough, I’ve had the good fortune to have close friends who were able to provide me with necessary financial support when I needed it. Unfortunately, the most generous of those friends had a drastic and unexpected change in personal circumstance and had to withdraw support quite abruptly at the end of 2018. I’ve spent the last eight months trying to piece together the resources that would allow me to stay alive, but have not been wholly successful. A few friends have been able to contribute in ways that were meaningful but not sustainable, and I’ve used credit cards to pay most of my living expenses since the beginning of the year. I’m now out of available credit, which essentially means I’m out of time.

Can’t your family help you?

I grew up as an adopted child in a time and place where no one had a gay son; they just had sons described as “incredibly sweet boys” who had committed suicide. And I grew up in a family that didn’t know how to deal with its own issues, much less mine. I have no spouse or significant other. I have no siblings, I have no relationships with any extended family, and my well-intentioned working class parents have literally bankrupted themselves by taking care of their younger siblings who struggle with addiction and mental illness. Right now, my parents rent a very small house nearly 200 miles from the closest research hospital, and their income is so limited that my father is only taking half doses of insulin. There’s no room for me there, and there’s no real support available, financial or otherwise. My presence would only bring guilt, complication, and worry.

What about cashing in your 401k or other retirement assets?
Maybe your life insurance policy?

I don’t have any of those things. I have worked sporadically in the past two decades as my health has allowed, but it’s always been in part-time or contract capacities. I’ve rarely had enough money to support myself in the present, much less plan for a distant future.

Are you on Disability?

I’m not because I don’t qualify. Ironically, I don’t have enough work experience and haven’t paid into the system long enough to receive benefits.

Is your healthcare covered by Medi-Cal?

It’s not. Though I’m eligible for Medi-Cal, my medical situation is extremely complex. Medi-Cal would not allow me access to any of my current physicians. It would not cover a number of treatments and modalities that are essential for daily pain management and function. And it would not pay for nearly half of the roughly 30 medications I take regularly. I’ve thoroughly discussed this with all of the doctors involved in my care, and there’s complete agreement that, for me, Medi-Cal is just another path to suicide. Additionally, Stanford Hospital currently pays for all of my Stanford-related co-insurance and co-payments as long as I maintain private health insurance, so my out-of-pocket medical expenses are already significantly discounted.

I’ve worked incredibly hard to assemble my current team of doctors. It has taken many years to develop the level of trust, belief, communication, experience, and shared knowledge that we have earned together. Losing all of that in a new system would be life-threatening and impossible to rebuild. It’s not a risk I can afford to take, especially now.

Are you eligible for food stamps?

I am not. Everyone assumes I should be eligible for food stamps. I assumed I’d be eligible for food stamps. But I’m not. If you want to recalibrate your views on the quality of the American social safety net, take a look at the food stamp requirements in your area, and then imagine how hard it might be to meet them as a single 43-year-old male with no dependents; it very quickly starts to explain the existence of check-cashing services, money orders, furniture rentals, and a host of other enterprises that come at a very high price for people with very little money. It gets depressing quickly.

Have you talked to a social worker?

I have. Many times. I’ve spoken with more than half a dozen social workers at three different hospitals and four different clinics. They all acknowledge that my situation sounds impossible. They then tell me to be proud of how smart and resourceful I am, that I should consider myself very lucky for having such good friends, and that they cannot think of a single resource I have not already tried to mine. They also suggest that I try to get a boyfriend or a dog. They were all perfectly lovely people, but they have not been a good resource for finding solutions to my financial needs.

Can you live somewhere cheaper?

Not really. I’ve lived in the same place for 13 years and my apartment is still significantly under market for the area. I am also roughly one mile from Stanford Hospital, and even closer to my psychiatrist and primary care doctor, both of whom I see frequently. The rest of my specialists are within a five-mile radius, and my fatigue issues make it impossible to drive more than 15-20 mins at a time. At present, I have somewhere between 2-6 medical appointments each week, spend roughly 30 days a year as a patient at Stanford Hospital, have in-clinic procedures 2-3 times a month, imaging and routine bloodwork 12-15 times a year, and have roughly 6-10 surgeries/procedures at outpatient surgical centers annually. My location is important, and I couldn’t find a cheaper place to live that still gave me access to my current medical team. It helps that my rent is heavily subsidized by a close friend.

How much money do you need?

I live modestly, but I live in Menlo Park. I don’t travel. I don’t drink. I don’t date. I don’t use recreational drugs. I’m not supporting anyone else. I don’t have a pet. And I have received a few pledges of reliable ongoing support, but at this point I am still short by at least a few thousand dollars each month. I have an acute need for sizable blocks of cash to extend my immediate event horizon and give me time to secure additional ongoing support (I need at least $20k to survive the rest of 2019, but my real need extends well beyond that). In a longer term sense, I also need $1000/month from at least a few people, or $500/month from several people, or a lot of four- or five-figure chunks that create a long-lasting reserve I can draw upon to meet my monthly shortfall. There are several different paths to a much-needed sense of financial security and safety for me, but they all involve real financial help from people who are not already contributing to my care and survival.

How long will it take you to recover?

I don’t have a clear answer to this question. It has taken me a long time to get this sick, my disease is still in nascent stages of description and treatment, and I need to eliminate much of the stress currently wreaking havoc with my body if I’m going to make any progress. I also need to have some traumatic surgeries that will slow down my recovery. My doctors are currently working with several dozen medications that they are trying in different combinations with different patients, so I would guess it will take at least three years to have a defined, stable treatment plan, and probably more like five years to understand how much improvement I might make once the disease is properly managed and my spine is (hopefully) stable. I’m frankly excited by the prospect of seeing my health improve over time, particular given how far and how long I’ve had to watch it deteriorate. Being able to buy that time is essential, and I can’t do it without your help.

Why should I help you?

I can’t answer that for you. I certainly don’t look like a good investment. I need years to mount some degree of recovery. And it’s all but certain that I’ll never pay you back. But I’ve already survived an unbelievable amount of hardship, mostly on my own, mostly in private. So I have faith in my ability to stay the course and to keep hoping for some sort of break in the clouds. I am certain that there is more in store for me. And I refuse to give up so long as I believe that my possible futures contain at least one very well-deserved happy ending

If science and Western medicine are important to you, then I should be, too. Medicine only advances because of patients like me. And the breadth and depth of those advances is often dictated by how long those of us with rare conditions continue to show up, and continue to be the question that doesn’t yet have an answer. Medical knowledge as a whole grows as knowledge about my illness, my skeleton, my nervous system, my autoimmune issues continues to grow. I can barely move, I’m fatigued beyond measure, and I am covered in scars, but my brain is still working, still powerful, still thinking and questioning and challenging. I may have moments when I feel worthless, but in a teaching hospital with a steady stream of new medical students and fellows and residents who are all stunned by some aspect of my very existence, my one-of-a-kind body is priceless. I’ve now reached a point where every encounter with a new doctor involves comments like “But… but… this just doesn’t happen to 43-year-old-bodies.” Except when it does.

Maybe you should help me because you’re healthy now, but one day you might benefit, in some small way, from what I’ve already summited and survived. Maybe some little piece of my experience replicates itself in you. Or in your spouse. Or in your child. Maybe I’m currently training the surgeon, or the neurologist, or the dermatologist, or the pain doctor that you’re going to need one day. Or maybe you also end up with an issue that is totally new to medicine, and you’re treated by a physician who hears you a bit better and believes you more quickly because they’ve already had a patient like me. They’ve already had to readjust their definition of “impossible.”

Or, maybe you help me because you’ve loved me at one point. Or you liked me at least a little bit for a little while. Maybe you can imagine what it might be like to be in my position, to literally beg for your life and hope that someone hears you. I wish I could give you an answer that makes it easy for you to decide to help me out. I’d like to think I know what I would do if you and I were to suddenly swap shoes. But that’s easy to say once you’ve already been on my side of things.

What will happen if you don't get funding?

To be honest, I don't know. I do know that I can't survive without real help from other people, and I know I've tried every other way I can think of to get that help. There is only one path forward for me, and that means finding a way to maintain some rough version of my status quo. Because I refuse to become homeless. I refuse to live with pain that I’ve grown accustomed to having managed. I refuse to live without a certain amount of dignity that I’m fairly convinced I’ve earned. And I can’t survive without the small bit of hope I have now, especially given how f**king hard it’s been for me to find it.

I’m sure my life sounds bleak, but I’m not actually depressed. And I don’t feel like a lost cause. I’m definitely lonely for a type of connection that is impossible for me to pursue at this time. There are moments of deep despair. There’s certainly a lot of frustration. And frankly, there is a tremendous amount of stress and fear about my immediate future, but I don’t want to focus on what happens if people choose not to help me. Regardless of how hard it may look from the outside, I’m not ready for my life to be over. After years of feeling hopeless, there is now a path forward. There is now the possibility of something that might look like good health. And I would hate to have to give up before I get that far.