What My 'Cranky Panky' Taught Me About Emergent Care

I seriously wish I were one of those folks who have a talent for writing short, concise little snippets as they blog, but honestly my life is full of all kinds of word-worthy events that I have trouble condensing. Please bear with me...I pray that at the end of this entry, you will end up with a healthier outlook on what is going on in your life, that you can glean some sort of benefit from my experience, and most of all--that you will see the hand of God working in all of our lives as we walk this journey called life together. Okay, so here we go...

In ER with Acute Pancreatitis

August 24, 2019

About a week ago, I found myself doubled over in pain, asking my husband to take me to the emergency room at one of our nearby hospitals. Knowing that it is something I'd never do unless someone was holding a gun to my head or--as in this situation--something I promised my doctor I would do in order to have proper documentation of a suspected Chronic Pancreatitis diagnosis, Gary grabbed his shoes and his keys, and off we went! Sure enough, the diagnosis--Acute Pancreatitis, with Lipase levels well over 5 times the normal limit.

May I step back in time a moment to explain my promise to a doctor to go to the emergency room upon my next bout of severe abdominal pain? You see, this pain is not new to me. I have been having bouts of gripping, incapacitating, unbelievable pain every few weeks for about 4 years now. I have mentioned this to multiple doctors (including 3 different gastroenterologists) and every single one has asked if I have gone to the ER during the attack. My response has always been--"well, no--I am incapacitated. As in dripping sweat, unable to speak, doubled over in pain incapacitated. For better or worse, I have always prayed, stayed mentally calm, telling myself, 'it will get better in a minute', and eventually--it always has! So no; no ER". And then each and every doctor told me they didn't know what it was, but I shouldn't worry too much because it has always (they thought) historically resolved on its own.

Several months ago, for whatever reason, I was tested for a special antibody called Anti-GAD65 antibody, a test which can diagnose Autoimmune Diabetes, Stiff Person Syndrome, and positive results have sometimes linked neuromuscular disease such as Myasthenia Gravis, with an underlying cancer. When I discovered that my test was positive, I was overwhelmed, my mind reeling. On the other hand, God was making His loving presence evident, reminding me with every breath I took that my life...my times...are in HIS hands. A couple of months later, the doctor decided to repeat the test and it was confirmed--I had a positive Anti-GAD65 antibody test with a very high titre.

As I sought help to find the source of the antibodies, I realized that no one really knew what to do. In the meantime, I started Plasmapheresis treatments, which helped me arise from the downward spiral of deteriorating health. I am pretty sure I have  written about this miraculous treatment in earlier posts, so I will refrain from going into detail now. Anyway, I had a follow up visit with my neurologist in May, who insisted that I absolutely MUST have an MRI done on my pancreas due to a connection she'd observed in a couple of patients in her clinic between highly positive Anti-GAD65 antibodies and pancreatic cancer. Because I trust my neurologist implicitly, I complied and had the MRI done in late June. I received the results, which were abnormal, from the head of the pancreas to the tail. In short, the entire pancreas was involved with atrophy, damage, lesions, cysts and a dilated main duct. I took the results to my gastroenterologist in early July, who downplayed them, while at the same time mentioning a possible future referral to a pancreatic clinic he knew of. When I asked if he would go ahead and refer, he said he didn't feel I need such intensive scrutiny and care just yet. Something about that just didn't sit well with me, and sort of nagged at my brain for a couple of weeks. I decided to advocate on my own behalf and made a self-referred appointment at that clinic.

When I arrived, I saw an extremely intelligent, professional and knowledgeable PA, who instilled immediate confidence in me. She made no statements about anything; rather, she asked me to share my story with her. As I voiced the history I just shared with you, also adding that I had felt dismissed by most doctors, I saw multiple "aha!" expressions cross her face as she listened intently and took extensive notes. Like all the other doctors I'd seen she asked if I had ever been to the ER and I said what I have always said..."No"...and gave the reasons why. Her immediate response was, "'Don't do that anymore!' The next time this happens, you MUST go to the ER!" And then she thanked me for my openness and honesty, indicating that my story shed light on what my MRI images were saying. The entire team of doctors in this pancreatic clinic was baffled by what they saw because there was no documentation whatsoever of me ever having had pancreatitis. But she compassionately told me she knew I wasn't making anything up, she believed everything I told her, she knew I was in pain, and that it was NOT in my head. She then went over the most concerning aspects of my MRI study (which my regular GI doctor had glossed over). As I noted above, the report isn't good. Our visit ended with her promise to me that I would never be dismissed about this again, if she had anything to do with it! I left feeling blessed to have followed my God-given instinct and validated that what I was experiencing was, in fact, not "all in my head".

Okay, so fast forward to last Saturday. The attack, so similar to all the others I had over the past few years (though not quite as severe), gave me the much needed documentation that I indeed have pancreatitis. The hospital in question, however, gave us the choice to go home, in spite of my off-the-chart levels, and my husband and I, not knowing what to do, chose to come home. After all, who wants to go to the hospital and stay? So we came home. But I couldn't eat without being sick, I had difficulty controlling the pain, and still we tried the best self-care we knew to do. Gut rest, a clear liquid diet and hydration as much as possible became our arsenal as together we fought to get through this illness. However, I didn't get better, I got worse. By Tuesday I had a pretty hefty fever, so I called the pancreatic clinic to update them. The nurse said, "'Oh my--with levels that high, we never send our patients home!' Please go to the ER at the hospital with which we are affiliated." So I did.

Admitted but trapped in ER

August 27, 2019

When I showed them documentation from the previous ER visit, there was a sudden flurry of activity all around me--port access, blood draws and administration of a strong pain killer followed by extremely powerful antibiotic. As a matter of fact, I ended up receiving 5 IV rounds of those antibiotics with no clear understanding of what was wrong that I needed so much of it. It was only on the day before my release that I accidentally discovered the reason by logging into my patient portal. To my surprise, I discovered that I had SIRS (Systemic Inflammatory Response Syndrome), an early stage of sepsis with various causative factors, one of which is pancreatitis.

I spent 2 full days and one night in the ER in incredible pain, plagued by nausea, vomiting and diarrhea, with no privacy. To make matters worse, the only bathroom was a community restroom that both patients and visitors were using, and it was down the hall! My care was provided by tight-lipped doctors who acted like they didn't believe I had pancreatitis (despite the records I brought with me), and refused to contact the pancreatic clinic affiliated with their own hospital system. By the end of the second day, I was so miserable, I told the nurse to tell my doctor that I wanted to be released. I could not stay in that environment with no answers, no clear reason to be there, and no plan. I could do what they were doing at home, my meds would be taken on time without argument from anyone, and I would prefer to throw up in my own, very clean bathroom--thank you very much. Within minutes, the medical team on call...one doctor and one medical student...came to see me. We pled our case, she wouldn't budge. She said they could not, in good conscience or wise medical intellect, release me to go home. She was the first doctor in two days to acknowledge that she had studied all the notes that were in the system from the pancreatic clinic, that they had ALL actually done so, that I indeed have chronic pancreatitis, and that they were treating me aggressively for complications from my most recent attack (complications I now know to be SIRS). Reluctantly, we agreed, and what do you know? Before 10 minutes had passed, I suddenly had a room of my own! It was a lovely room, and immediately my level of care improved. I was still under the care of the same doctors who refused to call the clinic; nevertheless, for the most part, I had excellent nursing care. The hospitalist assigned to me prescribed relief for my pain, and I slept well for the first time in two days.

The next day, one of the residents stepped in to tell me not to worry--I probably had a mild virus. "But you ran all those tests, and every one for the flu or virus was negative", I said, to which she replied, "Well, you probably had a cold."! I started to argue, then decided it wasn't worth it. I would like to interject here that all the doctors weren't incompetent--only some of them. The lead doctor told me every day during rounds that I had pancreatitis with residual complications. That being said, not one of them contacted the pancreatic clinic; they simply read the notes in my chart.

While we're talking about major problems, one of the nurses, thinking my port was clogged, forced 2 doses of Cathflo (a clot buster/blood thinning agent) into my port line, thinking it was actually going into the port. I was very leery of this treatment and voiced my concern, but she assured me that she knew what she was doing. However, in reality, this strong agent was infiltrating into the tissue around the port. Within minutes of the second forced dose, the tissue all around my port was swollen, red, and tender to touch. You see, my port wasn't clogged at all...it was merely dislodged, which is what my "gut" was telling me all along. All she had to do was de-access it and re-access; problem solved. I am still suffering today from that mistake!

Because I'd had enough, I called the pancreatic clinic myself and "tattled" on the doctors on my case. That evening, (hmmm....not sure why the test was expedited so quickly), I found myself in the MRI Department undergoing an MRCP, which is a special MRI to look specifically at the pancreas and surrounding organs. Yesterday the clinic called me, said the pancreatic team had reviewed my results, and I am scheduled to have an endoscopic ultrasound and biopsy on September 24th.

So--long story not so short, I am finally resting at home now, taking pancreatic enzymes before I eat anything at all (which is bland to say the least), and as I journal these things so I don't forget, I have come to realize a couple of important things: a) this is not a short story, but a lengthy history of my personal experience in what I perceive to be the decline of quality in our health care today. I hope you continue to bear with me as we walk together through this roller coaster ride aka journey through chronic illness, and b) I have learned many things I hope will help you should you ever find yourself or a loved one in my position.

Things my "Cranky Panky" taught me about emergent care and chronic illness:

1. Listen to your body, then ACT! Pain is your body telling you that something is wrong. Do something to help yourself!
2. If a doctor won't treat you as a whole, unique, and individual person, find one who will. I realize medicine has become extremely compartmentalized, but there ARE doctors who look at how intricately everything works together. Find a doctor like that and stick to them like glue!
3. Follow your instinctive intuition. If something doesn't seem right--speak up! You have a right to say NO!
4. Know your body and your conditions; know what medication you are supposed to take and when. If I tell a nurse certain drugs are "brand name medically necessary", I will never again waste time arguing with that nurse. When she brings me the generic form, insisting it is brand name, I will immediately call for the charge nurse...no more arguing and giving up in exhaustion and frustration!
5. If you must go to the ER, bring an advocate to speak for you during times you cannot do it yourself. And most of all, be it friend or family, be sure to take someone STRONG and unafraid to take up your cause!
6. Do not sign ANYTHING you do not understand! If the person holding the pen and paper to be signed cannot explain it, refrain from signing until they get someone in front of you who can.
7. Educate yourself about every condition you have. Be able to speak intelligently to your medical team. Be respectful, but don't allow them to be dismissive, withhold information, refuse to contact a doctor you need them to consult with, or act in any way condescendingly. They work for YOU!

I hope you have made it to the end of this entry, and I pray that it helps someone who needed it! God bless you...I love you!

Kathie Lea