A letter to patient relations

Laptop on a desk

This isn’t a funny post. This is an upsetting post. In fact, writing this letter made me so upset it took me three months to finish it.

I am not sharing this letter with you to make you upset nor for sympathy. I’m sharing it because I know my negative hospital experience isn’t unique, especially for mast cell disease patients. I’m sharing it to raise awareness of the incredible amount of advocacy required to receive adequate medical care for chronic illness. I’m sharing it in hopes that if this happens to you, this letter will encourage you to write one too. Even if it takes three months.


To patient relations,

I am writing regarding my 11/9/2018 emergency room visit and hospitalization, as well as my emergency room visits on: 8/2/18, 8/13/18, and 11/6/18.

I have Mast Cell Activation Syndrome (MCAS) and Ehlers Danlos Syndrome (EDS). MCAS is an immunologic condition in which mast cells are easily triggered to activate throughout the body, which can cause a wide range of symptoms and complications, including anaphylaxis. EDS is a connective tissue disorder characterized by joint hypermobility, skin hyperextensibility, and tissue fragility.

On 7/18/18, I had a chiropractic adjustment to address joint subluxations due to EDS. The following day, I had a headache and inflammation of my right eustachian tube. Two days later, on 7/20/18, my right inner ear was full of fluid; however, my primary care doctor did not see any infection in my ear. The only change in my routine had been the chiropractic adjustment, and considering my connective tissue disorder and the fluid in just one ear, I was concerned I could be suffering from a spontaneous cerebrospinal fluid (CSF) leak.  CSF leaks are a complication of connective tissue disorders such as EDS, and include symptoms such as fluid in one ear and headaches. Furthermore, lying down alleviated my head pain, a classic sign of a CSF leak.

On 8/2/18, my head pain became unbearable and I went to the Fairview Southdale emergency room. My MRI was normal; however, I had persistent vomiting, pain, nausea, and dizziness when I sat up. The doctor did not contact a neurologist despite my request. I explained MRIs do not always show CSF leaks. He said, “It’s not possible to have a CSF leak without a trauma, like a car accident.”

On 8/13/18, I returned the emergency room due to neck pain and a MCAS reaction. Pain is a mast cell trigger and, in this case, my mast cell reaction was causing a mild fever, a sore throat, and vomiting. The doctor tested for strep (negative), but did not investigate my concern about a CSF leak, despite explanations of my symptoms and the link between EDS and CSF leaks. He also did not consult neurology, despite my request. I was discharged without any treatment plan.  Feeling defeated, I ended up treating my MCAS reaction at home with Benadryl.

For two weeks, I laid totally flat in bed hoping the leak would heal on its own. I experienced some improvement until October. On 10/31/18, I began experiencing increased head pain and fluid in my right ear once again. The pain was triggering vomiting and high blood pressure, and I was missing work.

On 11/6/2018, I returned to the emergency room because I was once again having a severe MCAS reaction from uncontrolled head pain. My lips were swelling and my right arm was going numb. I repeatedly asked the doctor to consult neurology. He finally consulted neurology by phone; she recommended IV caffeine. After receiving the IV caffeine, I could sit up for the first time without pain. I explained to the ER doctor how MRIs do not catch all CSF leaks and asked if we could do other imaging. In his notes, he wrote, “I spoke with Dr. S from neurology who relays there is a small chance of a CSF leak secondary to minor trauma.” Although my medical record states Dr. S examined me that night, she did not examine me either in person or on the phone. She only spoke to the ER doctor on the phone.

Also, in his notes, the ER doctor wrote, “I do believe there is an anxiety component.” Ativan is a mast cell stabilizer. When mast cells are not stabilized, histamine is released and histamine can cause anxiety. The ER doctor would not prescribe Ativan tablets to help me manage my MCAS reactions until I could see my PCP. Meanwhile, my head pain was increasing, and yet again, there was no plan provided to me for pain management or treatment of the suspected CSF leak – that is anxiety provoking in itself. Although CSF leaks themselves are not life-threatening, they can cause severe complications for individuals with MCAS. I was discharged and the pain returned almost as soon as I got home.

On 11/9/2018, three days later, I returned to the emergency room. My head pain was unbearable and continued to aggravate my mast cell disease (vomiting, high blood pressure, hives, swelling). A front desk nurse, not the one checking me in, said in an arrogant tone, “I remember you. You would be in a lot more pain if you had a CSF leak. Have you contacted neurology?”

I said yes and neurology told me to go to the emergency room. I had finally gotten an appointment with a CSF leak specialist, but the appointment was still a few days away.

The nurse scoffed and said, “Well they always say that.” She dismissed my pain before I had even finished checking myself into the ER.

Once admitted to ER, I agreed to do another MRI, even though I know MRIs are not the best tool for catching CSF leaks. Because of MCAS, I need to be premedicated for radiology procedure with and without dye. The ER doctor ordered the proper medication and doses as recommended by The Mastocytosis Society: IV prednisone, Benadryl, and Ativan. It was a two-hour MRI, so I made certain to go the bathroom next the radiology room right before the procedure. I explained to the tech that I have mast cell disease and can react to radiology procedures, although that has not happened to me with past MRIs and I had fully premedicated. I also gave her my Epi Pens in case of emergency. About ¾ of the way through the imaging, my bladder began to feel full and spasm. I am used to powering through medical procedures, but I began to feel like I was going to lose control of my bladder. Often times, when I have mast cell reactions, I have activation in my kidney and bladder, causing spasms and swelling. I realized I was reacting to the MRI and I needed to use the bathroom.

I squeezed the call button and said, “I’m really sorry. But I really need to use the bathroom.”

The tech replied, “We are almost done.”

I said, “No, I’m sorry. I can’t wait.” I waited for to be pulled out of the machine. Nothing. Just silence. I squeezed the call button again and I said, “I really need to go the bathroom now. I am having a reaction.”

The tech replied, “We haven’t done the contrast yet.”

I said, “I know, but I am still having a reaction.”

The tech replied, “We are almost done. If I stop now, we’ll have to start all over. The images will have to be redone. We really can’t stop now.”

I felt completely panicked, trapped, and unsafe. I said, “I really need to go now or I am going to pee all over the table.”

She finally let me out and as I ran to the bathroom, she bombarded me with inappropriate comments and questions saying “I don’t understand. You went to the bathroom before. Is there something you’re not telling me? Some condition you’re not telling me? Now we have to do it all over again. I don’t understand. There are other patients waiting.”

I kept repeating “I’m sorry” while trying not to cry.  She made me feel guilty for having to start all over again.

My MRI was normal. I begged the ER doctor not to discharge me, at least not without seeing a neurologist. He agreed to admit me for observation.

The hospitalist, Dr. N, came to my ER room to discuss my admission. I had a friend with me at that time. I explained I have MCAS and need to follow the emergency The Mastocytosis Society’s (TMS) protocol until the CSF leak is addressed, otherwise my mast cell reactions can become more severe and painful. Sensing Dr. N’s reluctance, I showed her the protocol printed from The Mastocytosis Society’s website (written by Dr. Mariana Castells).

Dr. N said she could not follow the TMS protocol because it was not signed. This is not consistent with past practices. Since I was diagnosed with MCAS at the University of Minnesota in 2015,  I have been treated many times and once admitted at Fairview Southdale; following the TMS protocol has never been an issue. I have attached the protocol I showed Dr. N, although I’m sure it is in my file. I told her how it was imperative that I receive mast cell medications and this protocol was the standard emergency protocol provided by the The Mastocyctosis Society. I also told her to look at my chart. She left and I was moved to the observation floor. Around 10 PM, I received IV Benadryl, Ativan, and Diluadid. My friend left shortly after, assuming I was receiving adequate care and medication.

I woke up about 6:30 am on 11/10/18 in pain and alone. I noticed on the whiteboard that I was due for both IV Benadryl and IV Diluadid.  The whiteboard listed “medications”, “last given” and “available at”. I called the nurse and asked for the Benadryl. The nurse gave me 25mg of Benadryl, but it did not resolve my pain, so I asked for the Diluadid. She said I no longer could have Diluadid or more Benadryl (50mg is standard protocol mast cell disease). I asked for an explanation or to talk to the doctor. I asked why the doctor stopped my medications without talking to me.

The nurse came back and told me the doctor ordered morphine and Tylenol. I told her I am allergic to morphine and Tylenol. I told her to look at my chart and to look at the protocol paper I brought that specifically indicates my reactions to morphine and Tylenol. I asked why I can’t have Diluadid when the whiteboard indicated I was due for my next dose. She said, “We don’t have those medications on this floor anymore.” I demanded to talk to a neurologist since I was there for a spontaneous CSF leak and was still waiting to talk to a neurologist since the previous afternoon.

At 9:48 am, I called patient relations. Shortly after, the neurologist, Dr. S, came to my room. This was the first time I was examined by a neurologist. Dr. S admitted me to the neurology floor and recommended me for a blind blood patch for a suspected cerebrospinal fluid leak. I told her, near tears, about Dr. N stopping my medication and she promised she would make sure I received IV Benadryl and IV Diluadid.

I am extremely concerned that Dr. N ordered medications that can give me life-threatening allergic reactions. Not only are my allergies listed in my chart, but I showed her a protocol indicating I react to both. She made this change after my support system left the hospital and without consulting with me.

Furthermore, I endured unnecessary pain, inflammation, and anxiety because Dr. N would not continue the medications given to me in the ER. She ordered one dose of each medication the night before around 10 pm, and then arbitrarily stopped the medication in the morning without any warning. Stopping pain medication arbitrarily while awaiting treatment for a CSF leak is cruel and inhumane. Refusing to treat mast cell disease is cruel, inhumane, and can become life-threatening.. Dr. N never came to talk to me about the changes she made to my medications, despite my repeated requests for her to do so.

Thanks to Dr. S, I continued to receive the correct medications until my blood patch procedure on 11/12/18. Before the procedure, I was premedicated with IV Benadryl and prednisone per TMS protocol. The radiology team that performed the blood patch was fantastic. They told me they treated a CSF leak in an EDS patient the previous week. The procedure went well. My epidural blood patch was less painful and stressful than my MRI. My head pain disappeared almost immediately. I have not felt the head pain I had been experiencing since the blood patch procedure.

About ten minutes after I was returned to my room on the neurology floor, I urgently needed to go to the bathroom. I peed about 5 times in 20 minutes into a bed pan and then I began having kidney, ureter, and bladder spasms. I realized I was having a severe MCAS reaction and my right ureter was swelling shut, as the pain stabbed me. I have a history of right kidney hydronephrosis with mast cell reactions, and was even hospitalized on 8/22/17 on the same hospital floor. I went from peaceful bedrest to level 10 pain in seconds. I would rather pass two more 5mm kidney stones than experience this pain again.

I yelled for the doctor and when Dr. B entered I cried for an epi drip explaining I was having a mast cell reaction to the procedure and my right kidney was going into hydronephrosis. Dr. B said he didn’t have epinephrine on that floor and suggested a CT and that perhaps the pain was due to kidney stones. I yelled no. Blood patches do not cause kidney stones. I thought he was crazy to think I could endure a CT with this pain, let alone waiting to get a CT. I begged him to look at my chart, the notes from my hospitalization on the same hospital floor for the same reaction, and the notes from my urologist. I begged him to hurry, because every minute damages my kidney without proper treatment. I cried, “My kidney is going to shrink” because it already has as a result of my MCAS reactions. My friend pushed the TMS protocol into his hands, as he ran out of the room visibly flustered.

The nurse stood by my bedside tried to console me, as I endured the pain. After having spent time with me, she understood I was in a reaction. I threatened to grab my own Epi Pen and leave the hospital. One should not sit up after a blood patch, but I would have rather had the head pain than another minute of hydronephrosis. My friend held my hand and restrained me as I sobbed. I hoped I would black out. About this time Patient Relations entered the room to discuss Dr. N. I’m not unsure if Patient Relations’ presence changed the doctors’ mind, but shortly after the nurse pushed IV Benadryl, Ativan, and Diluadid and within minutes I was comfortable again. Patient Relations attempted to discuss Dr. N with me, but I was too exhausted and medicated to hold a conversation.

I endured unnecessary pain and suffering because Dr.B chose not to believe me. It is further infuriating that my medical records do not contain an accurate description of this event. My medical record says, “RLQ pain occurred after the blood patch procedure… She declined further imaging and the patient’s symptoms spontaneously resolved.” That is a lie. I was given IV Benadryl, Ativan, and Diluadid, and only then did the pain resolve. There is no mention of my hydronephrosis or my history of hydronephrosis being treating with MCAS medications.

Additionally, I am extremely concerned about Dr. B stating that there was no epinephrine on the floor of the hospital. If that is true, that is terrifying. Epinephrine should always be easily accessible in the case of a mast cell patient, no matter the floor. Patients with mast cell disorders can experience anaphylaxis to a huge variety of triggers – including pain, physical trauma, scents, and medications – and having epinephrine available is a matter of life and death.

I was so upset from my hospitalization that I did not seek medical care when I began experiencing benzodiazepine withdrawal the night of my discharge. In the hospital, I had received IV Ativan every four hours for 4 days, and Dr. B discharged me without any Ativan tablets or warning about withdrawal.

For the past three years, I have gone to Fairview Southdale for emergency care for mast cell reactions since my diagnosis by the U of M in 2015. The ER doctors have always followed The Mastocytosis Society Protocol. As I previously mentioned, I was admitted for observation at Fairview Southdale for a severe mast cell reaction including hydronephrosis on 8/22/2017 and the doctors followed the The Mastocytosis Society emergency protocol. My chart clearly indicates my diagnosis, my medication allergies, and how to treat my reactions. Dr. N and Dr. B disregarded this information. During my visit, I had to beg to see a neurologist, to receive MCAS medications, and even to go the bathroom.

The blood patch resolved my head pain, indicating I was indeed suffering from CSF leak. Dr. S, the neurologist, wrote in her notes, “In up to 20-25% of patients MRI brain imaging may be normal.” I incurred additional medical bills because I was repeatedly not believed. If I had been admitted for observation just three days before, on my third emergency room visit, I could have seen a neurologist sooner, avoided another emergency room bill, avoided missed days of work, and avoided the cost of hospitalization over the weekend, since blind blood patches are scheduled on weekdays.

I would like the hospital to take the following actions:

  • Revise my medical record reflect my mast cell reaction to my blood patch procedure and responsiveness to IV MCAS medications
  • Address the actions of these four medical professionals: Dr. N, Dr. B, the check in nurse, and the radiology tech
  • Dismiss my hospital bill and medical records bill

Finally, you must ensure this will not happen again. Inevitably, I will go the ER again for another severe MCAS reaction, possibly hydronephrosis. I want assurance The Mastocytosis Society Protocol (now signed by my primary care doctor) will be followed. I want assurance that if I experience hydronephrosis from a MCAS reaction again, I will receive swift treatment and pain medication. I want assuranceepinephrine will always be readily available for mast cell patients. Finally, I want assurance your doctors will not dismiss mast cell disease, simply because they do not understand it.

The Christmas cards are stacked against me

I’m not feeling the holiday spirit this year. Maybe it’s because the hospital almost killed me last month and still gifted me a $2k bill. Maybe it’s because my head is a ticking CSF leak time bomb and my neurologist says I will probably need brain surgery. Maybe it’s because my right kidney is still angry from last month’s contrast dye and throws a tantrum every time I drink water.

Or maybe it’s because Shutterfly sent me envelopes that smell like butt.

For the past decade, I’ve sent at least 50 Christmas cards each year. In the hospital, I swore I was taking this year off. However, a week later, I was invited to participate in a holiday card exchange for people with mast cell disease. I’m a sucker for fellow MCAS warriors, so I loaded up on steroids, put sweaters on my dogs, and trekked outside in the snow. The photos were adorable, so I ended up ordering 50 cards per usual.

As soon as my cards arrived in the mail, I set up my workshop: pens, stickers, and stamps. I was admiring my new cards, when it hit me. Not a chemical smell, nor a poop smell, but a foul butt smell. I put an envelope to my nose, and one whiff confirmed these envelopes had been stored in a sweaty butt warehouse for the past year. Unfortunately, by the time I moved them outside, my lungs were burning.

The only thing worse than getting sick from your own Christmas cards is getting all your chronically ill friends sick from your Christmas cards. I want to be known in the MCAS community as a great blogger, not the Christmas card killer. Again, I have ordered cards for over a decade, and I’ve never had this problem. Why this year?

Not even the Minnesota winter air could refresh the butt envelopes sitting on my patio. I waited two weeks for Shutterfly to send replacement envelopes. In past years, I would have been more patient. However, as a chronically ill person, I cannot crank out cards like I used to. Everything takes longer.

I considered sending the butt envelopes to my friends and family without mast cell disease anyway. I could just add “This is what my 2018 smelled like. Merry Christmas!” However, I usually I can smell things normal people can’t. So, my message would probably add further confusion and evidence that I am the most awkward person in their life.

As the Christmas deadline grew near, the pressure to finish my cards and my crabbiness increased. I began publicly proclaiming everyone would be receiving scent free deodorant for Christmas, because I am sick of trying and suffocating.

I was at the precipice of a Grinch-like meltdown, when I began receiving cards in my mailbox. Half of the cards came from cities I’ve never heard of, homes of other mast cell warriors. One of the cards contained a sticker that read, “Thank you for being.”

My shrunken kidney, two centimeters too small, did not grow when I read that, but I did feel a moment of comfort. The holidays have become painful reminders that everything is difficult or impossible for me: shopping, decorating, eating; socializing. The sticker gently reminded me I still matter, even if I can’t send Christmas cards on time anymore.

I considered putting an end to my shopping stress by just giving everyone on my list one of these stickers for Christmas. Then they would probably wish I had given them scent free deodorant. Holiday expectations are ridiculous.

Texts from the hospital

I’m recovering from a five-day hospital stay for a CSF leak. After two weeks of agony, adrenaline, and vomiting, a neurologist ordered a blind blood patch, and luckily it worked. Luckily, it’s still working. However, the leak, the MRIs, and the dye really pissed off my mast cells. And two doctors refused to give me mast cell medications.

I feel like I’ve been to hell and back, and I need to rest before I process the trauma.

I checked into the emergency room alone, per usual. I am my own best advocate and I hate asking for help. However, I underestimated the sedating power of Diluadid, Ativan, and Benadryl. I remember trying to text a single word to a friend for several minutes before giving up. Another friend suggested I dictate my texts and I thought that was a brilliant idea. Then I promptly forgot that idea.

My Facebook posts quickly devolved from official updates into a stream of consciousness.

“I hope Sancho visits me.”

Sancho is my toy poodle service dog. Instead of asking for someone to get him for me, I simply hoped aloud Sancho would make that choice himself – as if Sancho drives himself to the hospital. Luckily, my friends brought him to the hospital soon after my post. He woke me up at 3 am, when I pulled my IV out in my sleep. So. Much. Blood.

“At least I have corner room now. I’ve been watching humans park add snow all day”

I think this was the point in which my friends realized I probably shouldn’t be alone. On the 7th floor, I could see a nearby ski hill making snow. I watched it for hours, my own personal snow globe. Nobody else seemed to think it was as wonderful as I did.

My friends made sure I had everything I needed, making several trips to my condo. They even let me think I was still being helpful and orchestrating the details via text message.

“Ok but my mekhjnkr will have just to let you in”

Amidst all the cognitive impairment, I managed to purchase an Audible subscription and download several audiobooks. However, I listen for one minute before realizing I could not concentrate on a whole sentence.

On the fourth day, I became really pissed.

“Kidney swelled shit and cutie wouldn’t believe me… almost left crying”

 I have a couple names for the doctor that refused to administer mast cell medications when my kidney went into hydronephrosis. Cutie is not one of them. And by “almost left crying,” I really meant threatened to rip out my IV and flee the hospital screaming.

Without a doubt, I would not have survived this hospital stay without my friends. Perhaps the cognitive impairment was the blessing I needed to accept help. My friends reminded me that we all deserve help and we all struggle with autocorrect.

“She’s been through a lot this afternoon. But they finally have things almost under control. Her murder is fantastic.”

I have a lot to process: a leaking brain sack, a shrinking kidney, and a health care system that failed me. But my murder is fantastic. I don’t know what that means, but somehow I am comforted.