Please be advised that the following message is quite lengthy, and I apologize for that. However, I urge all readers to take the time to review the information carefully and consider any necessary actions relevant to your individual journey with multiple myeloma.
Unlike the typical patient, I bring a unique perspective to living with multiple myeloma, AL amyloidosis, and now CLL. My extensive knowledge, gained through personal experience and in-depth education as a HealthTree coach, Cure Hub certified coach (and Pacific Region Cure Hub co-lead), and member of the HealthTree financial coaching group, allows me to understand these conditions on a deeper level. Having absorbed nearly all of HealthTree's myeloma and AL amyloidosis resources, my nurse practitioner even suggested my clinic hire me to educate other patients – a role I'd gladly take on for the price of sushi!
My hope is that the healthcare community will recognize the value of lived experience alongside medical expertise. In my own journey, a more collaborative approach, acknowledging my in-depth understanding, could have saved critical time in my treatment. That delay, unfortunately, carried significant risk
On Wednesday evening, roughly an hour after dinner, a sudden and alarming decline in my health occurred. Severe illness struck rapidly, accompanied by relentless vomiting. As my responsiveness to my wife’s questions waned, she wisely called the paramedics from the fire station, conveniently located just four houses away. Their arrival was prompt; they assessed my vital signs and swiftly transported me by ambulance to the local hospital.
From the outset, we diligently informed the paramedics and subsequent hospital staff of my complex and precarious medical history. This includes multiple myeloma and AL amyloidosis, conditions that severely compromise my immune system and have a documented history of leading to serious infections such as sepsis and cellulitis, among other complications. To my dismay, one of the senior firefighters made a dismissive and frankly ignorant remark, stating that “oh, sepsis isn’t all that serious.” I found this comment incredibly ill-informed and deeply concerning, especially given my medical background.
Despite my clearly stated history, including three prior hospital admissions specifically for sepsis, I endured an unconscionable wait of approximately six hours in the emergency room before finally being seen by a physician and, crucially, having blood drawn. In hindsight, it is glaringly obvious that immunocompromised patients like myself should be immediately flagged within the system, triggering an expedited protocol for essential diagnostic tests.
While I understand the necessity of initial assessments like vital signs, and perhaps even a preliminary echo in some cases, the egregious delay in obtaining a blood sample was unacceptable and potentially dangerous. This crucial diagnostic step should have been prioritized and initiated within the first 15 minutes of my arrival, coinciding with the collection of vitals. This valuable time was lost, time that could have provided critical information about the rapidly escalating infection within my body. Ideally, a blood draw should even be considered en route to the hospital for high-risk patients like myself. Earlier analysis could have revealed the alarmingly high white blood cell count that was already actively causing damage to my system.
I arrived at the hospital around 9:00 PM on Wednesday. I was finally seen by the attending ER physician at approximately 3:00 AM and subsequently admitted around 5:30 AM. It is now Saturday morning, and I am thankfully feeling significantly improved. However, this recent hospitalization sadly mirrors a concerning pattern of delayed care. My initial extended hospitalization, lasting five weeks, was triggered by a severe and rare reaction to my first dose of Ninlaro in February 2016, a relatively new medication at the time. I vividly recall waking up in restraints, my wife somberly explaining that I had endured a harrowing three-day period of severe delirium. That single dose precipitated sepsis, and while hospitalized, I further contracted pneumonia, likely from a 2016 strain of coronavirus circulating among the hospital staff.
Fast forward to the present: while my red and white blood cell counts have thankfully returned to a more normal range, the initial delay in diagnosis allowed my white cell count to surge to a dangerously high level, raising serious concerns about the potential need to remove my port – a vital lifeline for my ongoing Daratumumab infusions. As of this Saturday morning, my diagnoses stemming from this admission include sepsis (my fourth documented episode directly related to multiple myeloma), cellulitis (a regrettably frequent occurrence given my underlying conditions), strep infection, staph infection, and the frustrating continuation of a chronic urinary tract infection that we have been battling for the past four to five months. I sincerely hope the current aggressive regimen of intravenous antibiotics will finally eradicate this persistent infection.
It's a peculiar observation that many significant events in my life seem to occur in sets of four. Multiple myeloma marks my fourth cancer diagnosis, following previous battles with prostate, colon, and thyroid cancer. The subsequent addition of AL amyloidosis to this list only serves to further complicate my already intricate medical landscape.
Reflecting on this most recent experience, I am resolute in my belief that a six to seven-hour delay in the emergency room before essential bloodwork is performed is utterly unacceptable for patients grappling with myeloma or other incurable blood cancers. For individuals with rapidly progressing and potentially fatal conditions like sepsis, particularly when compounded by a compromised immune system, time is unequivocally of the essence. In my case, the prolonged wait allowed my white blood cell count to reach a critical point, actively causing damage, although thankfully it was brought under control relatively quickly with the administration of vancomycin. I am currently also receiving Unasyn intravenously. It is absolutely invaluable to have a proactive advocate, such as a spouse or friend, in these critical situations to push for timely and appropriate care. As I have repeatedly emphasized, time is a non-renewable resource when dealing with sepsis, and even seemingly less severe infections like cellulitis can rapidly escalate into serious and life-threatening situations. Furthermore, sepsis can inflict additional damage on vital organs, a particularly grave concern for individuals with conditions like AL amyloidosis.
It cannot be overstated how critically time-sensitive conditions like sepsis are, especially for those of us with compromised immune systems. When sepsis takes hold, the body initiates a drastic survival mechanism, shunting blood flow away from the extremities and concentrating it in the core to protect vital organs as it fights the overwhelming infection. This physiological response, while intended to be protective, carries severe consequences, most notably a significantly increased risk of blood clot formation in the extremities due to reduced circulation. Without timely and aggressive intervention, this can rapidly progress to dangerous complications, potentially even leading to irreversible tissue damage and the development of gangrene. For someone already battling complex conditions like multiple myeloma and AL amyloidosis, this inherent physiological response to sepsis adds another perilous layer to the situation, making rapid diagnosis and treatment absolutely paramount to prevent irreversible damage and ensure survival. The agonizing delay in obtaining a simple blood draw directly undermines the possibility of this rapid intervention.
On a more encouraging note, a recent echocardiogram revealed a positive development: an improvement in my Left Ventricular Ejection Fraction (LVEF) from 55% to 69%. This is certainly welcome news for someone managing congestive heart failure alongside multiple myeloma and AL amyloidosis.
My fervent advice to anyone who is immunocompromised and experiences a sudden onset of severe illness accompanied by vomiting is to proceed to the emergency room without delay and to unequivocally communicate your compromised immune status and heightened susceptibility to infections such as sepsis, cellulitis, strep, and staph. Be assertive and insistent in requesting an immediate blood draw. Time is not a luxury in these situations; it is a critical factor, and your life could very well depend on prompt and decisive action. You cannot afford a delay in diagnosis and treatment due to prolonged waiting times in a busy emergency room to negatively impact your health or, tragically, shorten your life.
Fingers are crossed for a discharge on Monday or Tuesday! And in a rather ironic twist, my birthday was yesterday – certainly a memorable present! While this wasn't quite the celebratory event I had envisioned, the most precious gift is undoubtedly being alive and on the path to recovery. This latest hospital adventure certainly brings back vivid memories of my initial, much more protracted five-week stay back in 2016 following that unexpected and severe reaction to Ninlaro. In total, I spent an arduous 15 weeks in the hospital throughout that challenging year.
With hindsight, I should’ve been a little more pushy, but like I posted I was getting rather unresponsive. I was extremely weak and basically sitting in a wheelchair. They had to push me around when I needed to use the restroom. I don’t think I have the strength to get up and walk 40 feet to make it on my own.
Over the weekend, I had a significant conversation with the patient advocate at the hospital. During our discussion, I emphasized my strong hope for the near-future integration of Artificial Intelligence (AI) throughout all hospital systems, particularly within Epic, the electronic health record system utilized by Sacred Heart.
I specifically highlighted the critical need for improved protocols concerning immunocompromised patients with high-risk factors, such as those of us living with Multiple Myeloma. I stressed that despite my repeated statements about having experienced sepsis on three previous occasions, there appeared to be a lack of appropriate urgency and attention to this crucial piece of my medical history upon my recent arrival.
My vision for an improved system, ideally leveraging the capabilities of AI, includes a streamlined intake process where essential diagnostic tests are prioritized for high-risk individuals. I believe that within the first 15 minutes of arrival, alongside the routine collection of vital signs, a blood draw and urine sample should be standard protocol for patients with a documented history of severe infections or compromised immunity.
The information gleaned from typical initial bloodwork, such as a Complete Blood Count (CBC) and a Comprehensive Metabolic Panel (CMP), coupled with a quick Urinalysis (UA), would likely have promptly revealed the critically elevated levels of my white blood cell count during my recent emergency. An intelligent AI system, capable of quickly analyzing this preliminary data in conjunction with my extensive medical history, could have readily identified the severity of my situation. This would have ideally triggered an immediate prioritization in triage, ensuring that I was seen by a medical professional within a far more reasonable timeframe – perhaps within an hour of arriving – rather than enduring the unacceptable delays I have experienced. On previous occasions at the same Emergency Room, I have waited six, seven, and even eight hours for necessary medical attention, regardless of the actual acuity of my condition at the time. While the urgency varies with each visit, the potential for critical deterioration in immunocompromised individuals necessitates a more proactive and timely approach to initial assessment.
Asking whether or not, I had a medical ID bracelet. Interestingly, I don't wear a traditional physical medical ID bracelet. Instead, my critical health information is comprehensively detailed within the built-in "Health" app on my iPhone. Most modern smartphones offer a similar health section, and the beauty of it is that even when your phone is locked, emergency medical professionals have a backdoor access to view this vital data. This is a significant advantage that smartphones offer to ER staff.
During my recent emergency, I was admittedly quite unwell and didn't immediately think to direct them to this readily available resource. In hindsight, I should have explicitly informed them about the extensive information stored within my Health app and offered them my phone to access it. It truly contains everything – my complete list of daily medications, a detailed medical history encompassing both my myeloma-related issues and other conditions, and even emergency contact information.
I firmly believe that everyone with a smartphone should take advantage of this feature. I've been a vocal advocate for this, even sharing this recommendation multiple times on Facebook. In fact, I keep a readily accessible copy-paste version of my key medical information within the "Notes" app on my phone. This allows me to easily share relevant details, including my medical narrative, on social media.
Often, these posts on Facebook contain valuable insights about myeloma and AL amyloidosis. For instance, I've shared explanations about why some individuals with these conditions don't experience renal failure or vomiting, and why the light chain ratio, while often discussed, shouldn't be the sole focus. Within this digital repository, I even have links to short, informative videos featuring HealthTree experts explaining the complexities of light chains and their ratios, making this crucial information easily accessible to others.
In addition, I think everybody should get their oncologist to create a card like this. For me, I wanna have something that says I am extremely susceptible to blood infection. With my hematologist signature on it. This one might be good too for all of us to have which I am, including as this picture someone on Facebook said that they got this from their clinic and it is standard procedure for every MM patient. I thought it’s a great idea.
I took advantage with my HealthTree duties as the co-lead for the Pacific region cure hub team. I had a captive audience with the oncology nurses. I told them I had something much better than MyChart and demoed cure hub to them to several of them. They thought it was great let the patient know about the free tool with HealthTree. They asked more about it, and I gave them a dozen of my HealthTree business cards which HealthTree printed for me. I told him they can contact me anytime and I will do a demo to any patient or medical professional as a one on one or as in groups.
This information comes directly from my recent hospital admission.I hope you find some of it useful and can apply it to your own life or the life of a loved one you care for.
