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The Cost of Being Sick

I am fortunate to have comprehensive health insurance. The table below is what it would cost me to stay alive and functioning without insurance.

This is the cash price of my medical expenses for a year. A good year. Figures are rounded but based upon explanation of benefits (EoBs) for past procedures, medications, etc.

I have excluded the costs of living in a safe apartment, full of safe furniture, with utilities turned on, to be able to care for myself. I have also excluded the costs of skilled nursing that I do for myself (which saves about $250 a DAY).

I have chosen to ignore the fact that the stress of not having insurance would significantly trigger my disease, resulting in higher expenses. I have chosen to ignore this because it would also likely kill me so my expenses would drop off pretty quickly.

If I lost my insurance, used every bit of money, and sold everything I own, I could pay for less than a month of care.

I’m sure I’m forgetting some stuff. I’ll add them in when I think of them.

Item Cost Frequency Total per year
Standard meds (cetirizine, ranitidine, cromolyn, ketorolac, ketotifen, levothyroxine, magnesium, calcium, vitamin D, turmeric, prednisone, trimethobenzamide, ondansetron, metoclopramide, montelukast, gabapentin, fluticasone, glycerin, lidocaine jelly, and pain meds) $1,527 Monthly $18,324
IV meds (IV Benadryl, IV Pepcid, IV Solu-Medrol, 5% Dextrose in Lactated Ringer’s ) $1,600 Monthly $19,200
Specialty injectable meds (Enbrel, Xolair) $6,709 Monthly $80,508
Compounded medications $110 Monthly $1,320
As needed meds $85 Monthly $1,020
Epipens $650 (2 pack) Three times a year $1,950
Office appointments (routine) $980 (4/month) Monthly $11,760
Office appointments (specialty, procedure) $1,260 (2/month) Monthly $15,120
Surgical procedures (scopes, etc) $3,000 Twice a year $6,000
Lab work $1,000 (4/month) Monthly $12,000
Skilled nursing care $1,000 (4/month) Monthly $12,000
Central line supplies $800 (4/month) Monthly $9,600
Other medical supplies $150 Monthly $1,800
Imaging studies $1,800 Four times a year $7,200
ER Visits $4,400 Twice a year $8,800
Hospitalization $6,850 (per night) 7 nights a year $47,950
Major surgery $29,000 Once every other year $14,500
Ambulance $650 Twice a year $1,300
Dentist $325 Twice a year $650
Safe foods $450 Monthly $5,400
Transportation (Uber, taxis, gas) $300 Monthly $3,600
Phone (to schedule appointments, receive results, communicate about medical issues) $80 Monthly $960
Total     $280,962

 

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Disease, Part 22

I answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.

  1. Does mast cell disease cause cognitive issues?
  • Yes.
  • The most common cognitive issue reported by mastocytosis patients is “brain fog”, a sort of difficulty in thinking and reacting normally.
  • Inability to focus, pay attention, find words, and keep things in short term memory are frequently reported by mast cell patients. Attentive deficit disorders are sometimes seen.
  • Aside from the effects of mast cell disease on your body, they also affect the lives of patients dramatically. 42% of mastocytosis patients in one study reported a high stress level. I would be willing to bet that across the entire population of mast cell patients, the number of people that feel a lot of stress is a lot higher than 42%. Many patients feel hopeless, guilty, or like a burden. While this is distinct from depression, a neurologic disorder, these feelings can make it hard for patients to focus or pay attention.
  • Mast cell disease can lower serotonin. Even where this is not the case, mast cells can greatly impact the way serotonin works in the body. Serotonin in a chemical that nerves and other cells use to talk to each other. It is also important in cognition. While this isn’t totally understood yet, it appears that increasing serotonin levels can improve memory and decrease impairment. It can also improve ability to learn things. Not enough serotonin was associated with memory and learning difficulties.
  • When mast cells are activated, your body thinks there is an emergency or an infection. It can activate a stress response. One of the things your body does during this response is release cortisol. Cortisol can further activate mast cells. It is also released by mast cells. Over time, more cortisol than normal can really fatigue the body. Long term stress response is associated with a lot of cognitive issues, including brain fog.
  • Mast cell disease is very disruptive to your sleep cycle. Personally, this is one of the hardest parts of the disease for me. Your body naturally starts releasing more histamine around 10pm, every night, for everyone. Mast cell patients often have worsened symptoms starting around then and continuing overnight.
  • Another mast cell mediator, prostaglandin D2 (PGD2), is the strongest known inducer of sleep in the body. Mast cell patients may have this in excess, making them even more tired.
  • Despite the common idea that histamine makes you drowsy, it actually keeps you awake. Many mast cell patients have insomnia because of the histamine release overnight. This translates to being exhausted during the day when histamine levels drop. Lack of sleep is a well documented cause of cognitive dysfunction.
  • Many mast cell patients have POTS or another form of dysautonomia. These conditions can prevent getting enough blood and oxygen to the brain.

For more information, please visit these posts:

Neuropsychiatric features of mast cell disease: Part 1 of 2

Neuropsychiatric features of mast cell disease: Part 2 of 2

MCAS: Neurologic and psychiatric symptoms

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 21

I answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.

30. Why does my skin get red and itchy?
• Flushing is one of the hallmark signs of mast cell disease. It is sometimes the symptom that drives providers to look at mast cell disease as a potential diagnosis.
• Mast cells make and release many chemicals. These chemicals are commonly called mediators because they mediate many reactions in the body that affect the body in many different ways.
• Some mast cell mediators make blood vessels relax. The vessels get a little wider. When the vessels get bigger, the ones under the skin get closer to the skin. Because those vessels show red from the blood in them, the blood is closer to the skin so the skin looks red.
• Flushing is often asymmetrical. There isn’t a hard and fast reason for why this happens but is likely caused by local mast cell mediator release. Essentially, if the mast cells on the right side of your face get irritated, the right side is more likely to flush than the left side.
• Flushing is mostly mediated by prostaglandin D2. Aspirin is often prescribed for mast cell patients that tolerate it because aspirin blocks cells from making prostaglandins. This is because aspirin interferes with the molecule that manufactures them. Many other substances can also interfere with this, including other NSAIDs. Another class of drug, 5-lipoxygenase inhibitors, can also stop production of prostaglandins in a different way.
• To a lesser extent, histamine contributes flushing and antihistamines sometimes help.
• What exactly causes itching is still not entirely clear. There are special little places in your body called itch receptors. When they notice something itchy, it’s their job to raise the alarm. We think that mast cells carry the message from those places to the nervous system that then spread the itch signal. It’s like carrying the flame of one candle from the itch receptor to the nervous system, which sets the forest on fire.
• Hydroxyzine and other antihistamines are often used for itching. Corticosteroids like prednisone, either oral or topical, may help. Also, medications that interfere with prostaglandin production, like an NSAID or a 5-lipoxygenase inhibitor, sometimes help.

For more detailed reading, please visit these posts:
The Provider Primer Series: Management of mast cell mediator symptoms and release
Prostaglandins and leukotrienes
Mast cell mediators: Prostaglandin D2 (PGD2)

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 20

I answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.

29. Why do I swell up when I have a reaction? Where does the fluid come from and where does it go?
• Your body feeds its cells by keeping blood circulating. The blood passes by cells. The cells pull nutrients, oxygen, and other things they want out of the blood. In return, the cells release their wastes into the bloodstream to carry them away to a place where they can be broken down.
• Mast cells make and release many chemicals. These chemicals are commonly called mediators because they mediate many reactions in the body that affect the body in many different ways.
• Mast cell mediators do many things. They can make blood vessels get looser or tighter to help control heart rate and blood pressure. Their ability to make blood vessels relax is the important point when considering swelling. When mast cells release certain mediators, the vessels relax and get a little wider.
• Vessels are made of a complicated network of cells and fibers. It’s like an afghan blanket: some parts of mostly solid and in other places, there are holes you can put your fingers through. When the vessels relax, those holes get larger so it’s easier for things to fall through the holes. In this case, what falls through the hole is fluid from the blood.
• Keep in mind that blood is a mixture of many things. For right now, let’s divide it into cells and everything else. Everything else is a liquid with some stuff dissolved in it.
• When the blood vessels relax, that liquid from the blood trickles out of the blood vessel and goes into the tissue. In some cases, if the blood vessels relax enough, cells actually fall out of the bloodstream and end up in tissue, too.
• The problem is that once you fall out of the bloodstream, you can’t just turn around and go right back in. That’s why swelling takes longer to subside than other symptoms, even with appropriate treatment.
• Everyone is familiar with the bloodstream. Less familiar is the lymphatic circulatory system. Lymphatic circulation is how your body moves things that fall out of the blood back to the bloodstream. This process is slower than processes that can release other symptoms and can sometimes take days.
• When you swell up, fluid falls out of your bloodstream and gets stuck in your tissues. The cells nearby will absorb some of the fluid and take up molecules they can use. However, if there is a lot of extra fluid there, the cells nearby cannot take up all of the fluid. Gradually, your lymphatic system sucks up that fluid and brings it back toward the heart so it can get back into the bloodstream.
• When you get hives (urticaria), it happens because fluid falls out of the bloodstream in a layer of tissue in the skin called the upper dermis.
• When you get angioedema, it happens because fluid falls out of the bloodstream in lower portions of tissue in the skin called the dermis, subcutaneous tissue, mucosa, and submucosa.
• The fact that the process for hives and angioedema is so similar and really distinguished only by which tissue layer they affect is the reason urticaria and angioedema so commonly occur together and are discussed together.

For more detailed reading, please visit the following posts:
Chronic urticaria and angioedema: Part 1
Chronic urticaria and angioedema: Part 2
Chronic urticaria and angioedema: Part 3
Chronic urticaria and angioedema: Part 4
Chronic urticaria and angioedema: Part 5
The Provider Primer Series: Management of mast cell mediator symptoms and release

The last kindness

My best friend’s father was recently diagnosed with a rare form of cancer that starts in the bile duct. It is the kind of cancer that moves quickly and is everywhere by the time you notice anything is wrong. The kind of cancer that still inflicts the truest meaning of that word: that it is to be feared because there is nothing to be done and it will be over quickly.

It has been my good fortune in life to have a good understanding of the human body, many of the diseases that affect it, and many of the treatments that help. For this reason, I am often contacted by friends or family when there is a nascent medical situation. Being able to explain things to people so that they understand what is happening is the very best thing I am able to do for others. I am grateful everyday that I can help with this when needed.

Priscilla and I were talking today about palliative care. We talked about managing anxiety and pain. I told her that at the end, they would make sure he is comfortable. “It is the very last kindness of medicine,” I told her. This is the best kind of medicine, the kind that is all about people and helping them and those who love them when their bodies fail. Medicine can do a lot. But it can’t do everything.

The fact that I can live alone and work and travel is a huge testament to the fact that medicine can do a lot. I would be dead or housebound without it. Even still, the toll taken on your body and your life by chronic illness is enormous. The toll it takes on the lives of others can also be significant.

I live close to my parents. They both help care for me every day. They feed Astoria and let her run around in their yard if I’m too sick. They make sure I’m awake to take my meds and make it to work. They take me to appointments and procedures. They sit with me for days after surgery. They drive me places. They pick up my meds. They still talk to me when I’m an asshole. You know. Parent things, for those of us who are lucky enough to have good parents.

But I am 33 years old. I should be independent in every way. And I’m not and I will never be. Every day, I am reminded of the fact that I require an extensive network of generous and caring people to effect my life, none sacrificing more than my parents.

After years of my failing health, my mom recently had to take FMLA leave to help take care of me and get me to my many procedures and appointments. The amount of time and energy she has to expend taking care of me is staggering. It is both humbling and sad. My parents are getting older. I should be taking care of them at this point in our lives. And I just can’t and I’m probably never going to be able to and some days, that is really, really hard. I worry a lot that the stress of caring for me will harm them.

Medicine has gifted me with many kindnesses. I just wish it could gift those kindnesses to those who love us and care for us, too.

Please send good energy/pray/send Reiki/cross your fingers for my dear Priscilla, the Balderas and Martinez families, and of course, her father.

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 19

I answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.

28. Why are so many mast cell patients anemic?
• Anemia occurs when a person has too few red blood cells or not enough hemoglobin. Red blood cells are essentially envelopes that serve specifically to hold hemoglobin. Hemoglobin is a molecule made with iron that picks up oxygen. When you have either too few red blood cells or they don’t have enough hemoglobin, not enough oxygen gets to all the parts of the body that need it.
• Patients with chronic illness of many kinds often have anemia. This is called anemia of chronic inflammation or anemia of inflammatory response.
• This type of anemia occurs because of the overactivity of a hormone called hepcidin. This hormone tells cells in the GI tract to hold onto any iron they find. This means they do not pass the iron along to the blood so it can make hemoglobin. Since the body isn’t making enough hemoglobin, the body doesn’t get enough oxygen.
• Mast cell patients often have anemia of chronic inflammation so they may be anemic regardless of how much iron they have in their diet. However, increased supplementation sometimes helps.
• There are several forms of iron that can be taken by mouth. IV iron is also an option. Some people have luck cooking in cast iron pans or using the “Lucky Iron Fish” to get even more iron into their diet in hopes that they can take up a little bit more.
• Having enough iron available also decreases mast cell activation. Mast cells make smaller amounts of inflammatory molecules when the body has sufficient iron.
• Mast cell patients may also selectively malabsorb iron in their GI tracts. This means that even if they are absorbing enough of other nutrients, they may not absorb enough iron properly due to inflammation. This sometimes improves with antihistamines.
• Mast cell patients usually take histamine H2 blockers. This decreases the strength of stomach acid which can affect absorption of nutrients like iron. Taking PPIs can do the same thing.
• Malabsorption of other nutrients, like copper, can contribute to anemia.
• Insufficient amounts of B12 or folate can cause also contribute to anemia.

For more detailed reading, please visit these posts:
Anemia of chronic inflammation
MCAS: Anemia and deficiencies
Effect of anemia on mast cells

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 18

I answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.

27. Can mast cell patients travel? Can they fly?
• This is very individual and dependent upon your personal health situation, your ability to manage bad reactions on your own, where you live and where you want to travel. I have been fortunate enough to be able to travel widely through exhaustive preparation.
• You should always talk to your care team when you are thinking about travel. You must have a detailed understanding about how to recognize when you are headed for trouble, what you should do if you get into trouble, and when you should pursue emergency care.
• Always carry rescue medications, your emergency protocol on provider letterhead, and a sheet listing your diagnoses, daily meds, rescue meds, and any special precautions. List over the counter medications as well.
• Make sure that all of your medications are legal in the country you are traveling to. Importantly, diphenhydramine (Benadryl) is illegal in some countries.
• Get a fit to fly letter detailing what medications you need to bring onboard with you on letterhead from your doctor.
• Call the airline directly to describe your needs. If you need to use medical equipment during the flight, tell them when you call and have the model number/ serial number ready.
• Also notify the airline if you need them to refrigerate medication for you.
• If standing is a trigger, or you have difficulty lifting luggage or carrying your bags with you, ask for a wheelchair to meet you at check-in and take you through the gate. It is my experience that when bringing a lot of medications through experience, it is easier to do this when you are in a wheelchair being escorted by airport personnel.
• Identify safe foods at your destination. Many countries do not allow you to bring food in from another country. However, you can often bring solid food through the security to have on the plane.
• I premedicate heavily and many other mast cell patients who regularly fly also find that helpful. Speak with your providers about what protocol works best for you.
• Flying is unbelievably dehydrating. Hydrate well in the days before flying, the day of the flight, and while flying.
• Keep in mind that if the flight crew is uncomfortable with you flying, they can refuse to let you onboard. Emphasize that it is safe for you to to fly and that you have a fit to fly letter. If you are not able to manage a bad reaction alone, please do not fly alone.

For more detailed reading, please visit these posts:

How to travel with mast cell disease

The MastAttack 107: The Layperson’s Guide to Mast Cell Diseases, Part 17

I answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.

25. How do I know what I will react to?
• There is no way to definitively know what things will make you react. It is difficult to predict. There are some general guidelines many of us use to figure out what may be a problem but the only way to really know is to try something.
• Please note that because mast cell reactions are not known to be triggered by the same mechanisms as traditional allergies, you cannot exclude an entire class of drugs because you react to one in the way that you do for traditional allergies. This is particularly worth noting for opiates: reaction to morphine, for example, does not exclude fentanyl or hydromorphone.
• Mast cell reactions are not inherently triggered by IgE the way that “true” allergies are. This means that blood tests for IgE allergies will not identify triggers accurately for most mast cell patients. (Although some mast cell patients do have some IgE allergies.)
• Additionally, skin testing is wildly inaccurate in mast cell patients because of how reactive our skin is.
• Stopping antihistamines is dangerous for mast cell patients.
• Allergy testing is not accurate for mast cell patients.
• There are several ways that various things can cause mast cell reactions. Generally, they do it in one of the following ways: they cause mast cells to empty the chemicals in their pockets into the body (degranulation); they cause mast cells to release chemicals in another way; they already contain significant amounts of histamine; or the interfere with the mechanisms for controlling mast cell activation.
• There are a number of medications that can cause mast cell degranulation or histamine release. Please note that not all of these medications are problematic for every patient. Only a provider managing your case can determine if these are safe for you or not. The major medications that may cause degranulation or histamine are listed below. This list is not exhaustive.

-Alcohol: Widely used to sterilize body area, surfaces, or tools; also used when preparing many medications that are not soluble in water
-Amphoterecin: Antifungal
-Aspirin: NSAID, for pain, inflammation, to block prostaglandins, to prevent clot formation
-Atracurium, mivacurium, rocuronium: Muscle relaxant
-Caine anesthetics (esters): Anesthetics, to numb
-Codeine, morphine, meperidine: Opiates, for pain or cough
-Colistin: Antibiotic
-Dextran: Volume expander, used in surgical or emergency situations to improve blood pressure
-Dextromethorphan: Cough suppressant
-Miconazole: Antifungal
-Nefopam: For pain
-NSAIDs (non steroidal anti-inflammatory drugs): For pain, inflammation, blocking production of prostaglandin
-Polymyxin B: Antibiotic
-Radioopaque contrast: To visualize structures in medical scanning procedures
-Reserpine: High blood pressure medication and antipsychotic
-Succinylcholine: Paralytic used for surgical procedures
-Thiopental: Anesthesia induction for surgical procedures
-Vancomycin (especially IV): Antibiotic

• There are a number of medications that are known to interfere with the mechanisms for controlling mast cell activation. Adrenaline is naturally made by the body to help control mast cell activation and other activities. When you interfere with the ability of adrenaline to act, it can potentially trigger mast cell activation. Drug classes that do this include beta blockers and alpha adrenergic blockers. This is particularly an issue if there is a history of anaphylaxis because these medications can interfere with Epipens.
• Many foods either contain histamine or can trigger mast cell release of histamine. As with medication, you cannot exclude an entire family of foods because you react to one in the way that you do for traditional allergies.
• There are many lists of foods to avoid. They often conflict with each other. There is not yet a definitive list available. Despite this, there are some general rules of thumb that are agreed upon on what to avoid.
• Products that are fermented, contain alcohol, are overly ripe or leftover from previous days (especially meats), or contain dyes or preservatives are generally excluded.
• Beyond this, recommendations vary a lot more. Many diets recommend excluding yeast, citrus fruits, and nightshade vegetables.
• Many activities inherently activate mast cells. Being too hot, standing or sitting in direct sunlight, exercise, sexual activities, menstruation, infection, and any type of physical trauma, even minor, can trigger mast cell activation as part of normal mast cell function.
• Premedication is recommended for any medical procedure, even minor, as they can trigger mast cell activation.
• Patients may find that premedication prior to other activating activities is helpful for suppressing reactions.
• Ultimately, the only way to know what is activating is through trial and error. Patients should consult their care team about what to trial, when, and how to make it as safe as possible.

For more detailed reading, please visit these posts:

Food allergy series: Mast cell reactions and the low histamine diet

The Provider Primer Series: Introduction to Mast Cells

The Provider Primer Series: Medications that impact degranulation and anaphylaxis

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 16

I have answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.

24. What is degranulation?
• Mast cells make chemicals inside them and often store them in pockets inside themselves. These pockets are called granules. When mast cells turn these pockets out so that the chemicals are dumped out of them into the body, that is called degranulation.
• There are several ways that mast cells release chemicals. These chemicals are commonly called mediators because they mediate many reactions in the body.
• Mast cells have to find certain building blocks from inside the body and whenever they find them, they use them to make mediators they need. Mast cells make some mediators whenever they have the opportunity and save them for later so they are there when they are needed. Often, the way mast cells save these mediators is by placing them inside granules. Mediators that are kept this way are called stored mediators.
• Mast cells have two options for getting those mediators out of their granules into the body. The first is to empty some of the granules entirely, just push everything out into the body at once. They can also release a little at a time. When mast cells are activated in response to an allergic or infectious process, overwhelmingly, they release the contents of a granule all at once.
• Frequently, they empty many of the granules at the same time. This can cause an emergency response in your body and can impact your entire body. This is what happens during anaphylaxis but it happens during other processes too, like mast cell attacks, bad infections, or sudden trauma.
• When mast cell patients say “I am degranulating”, it means they feel symptoms associated with mast cell mediator release. Histamine is stored in granules in large quantities so this is an offhand way of saying that they are feeling symptoms coming on.
• Mast cells have other ways of releasing mediators. They make some mediators only when they need to use them. These mediators are not stored but the building blocks they need are. A good example of this method is prostaglandin D2.
• Mast cells do not make prostaglandin D2 and stuff it inside granules. Instead, they keep the building blocks to make it inside of themselves. In this case, the building block they store is called arachidonic acid. When mast cells need to make prostaglandin D2, they use some of the arachidonic acid they have stored. But as soon as they use it to make prostaglandin D2, the mast cells secrete it right into the body. It is not stored in a granule.
• Mediators that are made with this kind of process are called “de novo” mediators. This means that the mediators are made “new” on demand when they are needed.

 

 

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 15

I have answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.
23. Is mast cell disease progressive?
• No, mast cell disease is not inherently progressive. Many patients live their entire lives with the same diagnosis.
• “Progressive” is not the same thing as “changing.” The way mast cell disease can change over time and often does.
• “Progressive” has a very specific meaning in this context. It means movement from one diagnostic category to another, essentially changing your diagnosis to a more serious form of mast cell disease.
• We do not have studies yet on whether or not MCAS “becomes” SM. However, we know that many people live with MCAS for decades without evidence of SM.
• There are several subtypes of systemic mastocytosis. In order of increasing severity, they are: indolent systemic mastocytosis; smoldering systemic mastocytosis; systemic mastocytosis with associated hematologic disease; aggressive systemic mastocytosis; and mast cell leukemia.
• The relative danger of systemic mastocytosis with associated hematologic disease (SM-AHD) when compared with other forms of systemic mastocytosis varies wildly. SM-AHD is when you have SM and another blood disorder where your body makes way too many cells. The other blood disorder is an important factor in life expectancy and risk of organ damage so it is difficult to compare it to other forms of mastocytosis.
• For patients with indolent systemic mastocytosis, in the 5-10 years following diagnosis, about 1.7% of patients progressed to smoldering mastocytosis, aggressive systemic mastocytosis, or mast cell leukemia.
• For patients with indolent systemic mastocytosis, in the 20-25 years following diagnosis, about 8.4% of patients progressed to smoldering mastocytosis, aggressive systemic mastocytosis, or mast cell leukemia.
• For patients with indolent systemic mastocytosis, one study found that roughly 8% of patients progressed to smoldering systemic mastocytosis.
• For patients with indolent systemic mastocytosis, two studies found that roughly 3% and 4% of patients progressed to aggressive systemic mastocytosis.
• For patients with indolent systemic mastocytosis, about 0.6% of patients progressed to acute leukemia (mast cell leukemia or acute myelogenous leukemia)..
• For patients with smoldering systemic mastocytosis, about 18% of them progressed to aggressive systemic mastocytosis or mast cell leukemia.
• For patients with aggressive systemic mastocytosis, about 6.5% of them progressed to acute leukemia (mast cell leukemia or acute myelogenous leukemia).
• For patients with systemic mastocytosis with associated hematologic disease, about 13% of them progressed to acute leukemia (mast cell leukemia or acute myelogenous leukemia).

For more detailed reading, please visit these posts:

Progression of mast cell diseases: Part 2

The Provider Primer Series: Diagnosis and natural history of systemic mastocytosis (ISM, SSM, ASM)

The Provider Primer Series: Diagnosis and natural history of systemic mastocytosis (SM-AHD, MCL, MCS)