Thursday, August 14, 2008

The hardest lesson!

I’m no English major or writer so understand I’m just speaking straight from the heart. Some people may think I’m blunt, rude or harsh and that’s OK, I don’t believe in sugar coating things just to make someone feel better. People have to learn to accept the change before they can begin to LIVE!

First off I do have Systemic Mastocytosis I do shock meaning I go into anaphylactic shock. I’ve shocked more than I can remember over the past 11 to 12 years. I was 30 years old when my first symptoms started appearing. I’ve been resuscitated 22 times. I’m an old school ERT so I do know a few things about saving lives. I’ve been shock free now for almost 3 years this coming November 19th will mark the third year. It’s important to me you understand my experience living with this illness.

You may wonder how I know exactly how many times I’ve been revived. My x-wife who is very vindictive because I won custody of my 2 smaller daughters decided one day to call Social Security and tell them I was faking my illness. Social Security decided she may be right. I received a letter stating my disability was going to be refused. I had to go to the local emergency room and speak with the Doctors who have latterly saved my life 22 times and ask them to write me letters of exactly how many times each one has resuscitated me. One Doctor who I owe so much saved my life 11 times his name is Dr. Vaughn. After showing the Social Security Dr. Verstovsek’s letter and the fact I’ve been on chemo for the past 2 years they reversed the termination and continued my disability. The thing that really pisses me off is don’t these people realize how successful I use to be, I would much rather work then sit home for the past 11 years.

Back in 2001 I almost started full blown chemotherapy at M.D. Anderson but I was scared and decided not to go that route. I got divorced met my current wife who I adore named Patty. I was called by Dr. Verstovsek, he wanted to know if I would consider going on his study to help find a cure for SM. He explained how things would work and the necessary steps I would have to under go. I refused the first time, about 5 to 6 months went by and BOOM I almost died that November 19th I was very lucky to survive that attack. I was newly married and scared the holy hell out of my wife. I called Dr. Verstovsek and asked if I could please be allowed to join the study. Dr. Verstovsek is a wonderful man for those of you who have not had the pleasure to meet him. He sincerely cares for his patients. (My mom thinks he is the sexiest man she’s ever met by the way) He has a great staff, one lady in particular named Kay a research nurse for my study is the greatest. (Kay if you read this you owe me haha joking)

I still get some mild cramping in the mornings, some bone pain of course, diarrhea, headache’s, fatigue, very sensitive to fluorescent lights, sun light and to many other things to list. The thing is I could sit home and cry about how horrible my life is whining and crying everyday but honestly ask yourself what good is that going to do?

I’ve learned to except life with SM do I crave a cure you better believe it, do I believe they’ll find a cure in my life time YES. I have 3 beautiful girls who depend on their father so giving up is not an option. You will be depressed for the first few years it took me around 5 years to realize I still have things worth living for.

I forgot to mention how many of my own family members for years thought I was faking this illness even after my near death experiences. People look at me and think I'm a normal healthy looking individual. I've had my Doctors talk to my family members trust me when I tell you people are going to believe what they want regardless how hard you try and convince them. It took my family probably 8 or 9 years before they really comprehended how sick I was, not to mention my taking chemo. Even though it hurts to know people think I'm faking this illness you have to learn to get past that. If you do not it will drag you down, stress you out and make your life miserable.

I guess what I’m trying to stress is don’t give up, enjoy life and stop trying to find more things wrong with you. Be thankful for what you have trust me things could be a lot worse. I had a huge wake up call while visiting M.D. Anderson for my appointment with Dr. Verstovsek. If you have ever been you know what I’m talking about. I was sitting there waiting to be seen when this Mom and child no more than 9 years old sat down beside me throwing up in a trashcan that was undergoing chemo. I had a huge wake up call that day and thought about how good I had it.

The next time I came back to M.D. Anderson I brought my daughters with me, I called ahead and received permission to play for the patients. So even though I was coming for bone marrows and my exam I decided to put on a show for the patients and family members. My daughter Kalie Layne who is 10 has been singing since she was 6, she has opened for Neal McCoy, Mason Dixon, George Strait’s rodeos along with taking third on Star Search when she was 7 (I have not updated her website in a very long time). It was uplifting to see so many people smiling. It was also a good learning lesson for my girls.

Enjoy life it’s to short to lay around and give up.


Gypsy Princessa said...

Hi Kevin,

Your post (even though it's from August) has reached me on a day when I need to be reached. This rollercoaster of belief/non-belief is incredible...not to mention being a 'shocker'. This phrase made me smile/laugh inside of this situation that isn't all that funny. You're a 'shocker'...hmmm, I guess I am too.

I see you haven't posted anything since August...I would encourage you to continue doing so because your experience is invaluable to newbies like me. I've been 'shocking' (monthly, bi-monthly, weekly) for the past year and it's TOTALLY helped me to find you, and your words.


Amy CT Shoreline said...

i want to know when i should concerned - when i feel dizzy & lightheaded, shaky, lips tingling, diaphoretic, flushing, short of breath. can i just suffer through these episodes, which will usually eventually pass, or is there some point where i need to start thinking about the Epipen?

What about with my young children, do i need to be sure there is someone else there in case i pass out?

Kevin said...

Hi Fiona,

I'm sorry for not responding before now. I'm not the best at writing so please bare with me, some times I rant more than I should. Main thing is don't give up, when I first started shocking it was all the time every week. I now live a pretty good life at the moment, I'm beginning to become to relaxed. I'll make a new post very soon about some new things I've been dealing with that may help someone like your self.

Take care,


Kevin said...


I wish I could give you the answers you so dearly need the only thing I can tell you is different things work for people like us. First thing I did was eliminate anything I thought was causing me to have reactions. I quit drinking, stopped eating out unless I know the food is fresh. Epipen is very important to keep handy. I use epinephrine as a last resort, in my case I've found high potency Benadryl (Diphenhydramine HCI Injection, USP 50 mg/ml) to be my best friend when I’m starting to go into shock. I also have bottled oxygen at home for when I feel short of breath. First and most important advice I can give you is find a doctor who truly cares about you and listens to you, my doctor understood I knew my body better than he did and he listened. How long have you had masto? Have you ever fully gone into anaphylactic shock? The things that have helped me the most is to understand my symptoms, I when I start to cramp in my stomach that if I do not have a bowel movement soon I’m going to be in trouble. If I’m not able to have a bowel movement I prepare, I place my shots next to me, if I start to flush I don’t hesitate by giving myself a shot. For myself I’ve found it’s very hard to determine sometimes when I’m about to have an attack, sometimes I will drive to my local Emergency Room and just sit in the parking lot in case I go into shock.
PLEASE go ahead and buy an epipen if for no other reason than a sense of security, you never know when you may need it.
I’ve raised 3 small girls when I was first diagnosed with this ugly illness, I made a 8” x 10” WARNING I HAVE SYSTEMIC MASTOCYTOSIS label and placed it on my front door to my home, on this I described my illness so the EMS would understand how to treat me if I was ever found unconscious upon their arrival. I also placed all my current medications as well as what I’ve probably already done prior to them arriving. I told them to use Benadryl first and epi second. I told them to place me on oxygen immediately. I had my Dr’s name and phone numbers on this as well. I even reduced this and made a wallet size card I carried on me at all times, I cannot tell you how many times I’ve sat on a toilet and handed this card to EMS because I was too weak to speak, this card has saved my life. I will put an image of the card I made on my blog for you and others to see if you like.
I taught my girls early on how to react if Dad was having an attack, they would call EMS, I typically had them watch TV to try and help with them being scared. Sad to say they have seen allot been through allot. I suggest wearing a medic alert bracelet also, main thing Amy is have a plan of action in place so everyone knows exactly what to do if you have an attack.
I hope this helps you, take care of yourself.

Pilot Momma said...

Hi Kevin--
I, also have SM. Until I read this blog post, however, I was not sure whether the five times I have passed out were truly "shock" episodes. Because (like you described) all (except one) of my "passing out" episodes have always followed a rapid onset of abdominal cramping which had not yet resulted in a bowel movement. I have always attributed these episodes to a vaso-vagal response. I have also had frequent episodes of angioedema which thankfully has only involved my mouth/throat/airway one time which followed an IV dose of an NSAID drug (prior to SM diagnosis). Typically my episodes of angioedema involve my hands, arms, shoulders, chest, abdomen, lower cervical & thoracic spine, hips, knees, or ankles and sometimes involve all of these areas. While I had suspected that my passing out episodes were really "shocking", after reading your description of how your episodes come on, I am sure that they have been what everyone calls "shocking". I had already told my husband that if I have another one, he should probably consider it to be "shocking".

Keep writing, as it is truly helpful for those of us who are just learning to hear about your experiences.
Blessings to you,

Anonymous said...

I am so glad to have found others that have similar symptoms and have systemic mastocytosis. I have tried Gleevac-two weeks, and my face and ankles swelled so bad, Dr. took me off. Just had gallbladder removed and Dr. wants to start me on chemo now.
I have awful debilitating attacks, wheher I eat or not. Please help me find help. said...


I hope all is well with you. Healthline just published an infographic detailing the effects of anaphylaxis on the body. This is an interactive chart allowing the reader to pick the side effect they want to learn more about.

You can see the overview of the report here:

Our users have found our guide very useful and I thought it would be a great resource for your page:

I would appreciate it if you could review our request and consider adding this visual representation of the effects of anaphylaxis to your site or sharing it on your social media feeds.

Please let me know if you have any questions.

All the best,
Maggie Danhakl • Assistant Marketing Manager

Healthline • The Power of Intelligent Health
660 Third Street, San Francisco, CA 94107 | @Healthline | @HealthlineCorp

About Us:

Information Sheet for Patients and Caregivers!

The Mastocytosis Society,Inc. Information Sheet for Patients and Caregivers

This is a brief introduction for new patients and doctors who are unfamiliar with the management of mastocytosis. The information presented here, combined with that available in the cited references, provides a starting point from which to approach understanding, treating, and living with this rare disorder.

Mast cell disease, or mastocytosis, is characterized by the proliferation and accumulation of mast cells in a variety of tissues and can affect either sex at any age. Definite diagnosis is made by demonstrating an abnormal accumulation of mast cells in a biopsy, usually of the skin and/or bone marrow. Other causes for symptoms should be ruled out, and blood and urine testing for mast cell products may be suggestive of the diagnosis. When performed properly by experienced personnel with access to current information on recommended protocols the results of these tests will be useful in diagnosing and evaluating mastocytosis.

Mast cells are widely distributed in nearly every organ of the body, mainly close to blood and lymph vessels, nerve endings, and skin and mucous membrane surfaces. They develop from immature cells produced in the bone marrow, which migrate to the tissues where they mature.

Mast cells produce various chemicals which normally serve protective, inflammatory and regulatory functions as they interact with white blood cells and tissues. In mastocytosis these chemicals, or mediators, are abnormally abundant and cause symptoms.

Mast cell products (mediators)

Some mast cell products are stored in granules within the cell, and others are produced in response to stimulation by the immune system or by drugs, chemicals, or physical factors. Below is a table of some factors which can cause mast cells to release their products. Stress, strong emotions and estrogen can increase their effect.

The products present in granules and ready for immediate release on stimulation include histamine, heparin, tryptase, and chymase. These chemicals cause, and to some extent regulate, allergic and inflammatory changes, and are involved in tissue building or repair. In response to immune system activation of the mast cell, arachidonic acid within the cell is converted into prostaglandin D2 and leukotriene C4, which restrict air flow in the lungs, stimulate mucous formation, and attract some kinds of white blood cells.

Mast cells also generate several cytokines, which are proteins that interact with white blood cells and tissue cells to continue the allergic or inflammatory response.


The symptoms of mastocytosis vary from person to person and may occur as "attacks" or as simply fatigue and a feeling of ill health. Over time, symptoms may become more frequent and more severe. The rate of progression differs from person to person, and there may be an improvement in symptoms for long periods of time. The type and severity of symptoms can also vary greatly from person to person or from one episode to the next. Often, seemingly unrelated symptoms comprise an individual's personal pattern of mastocytosis. These may (or may not) include: flushing (temporary skin redness), itching, hives,bruising, and skin sensations such as tingling. Other symptoms experienced by many of the people with mastocytosis are nausea,vomiting, abdominal cramping, occasional or frequent diarrhea, and excess stomach acid or ulcers. The person may experience unexplained fractures, mild to severe pain in bones, joints, or muscles, enlargement of liver or spleen, bladder pain, heart palpitations or rapid heart beat, chest discomfort, shortness of breath, light-headedness, fatigue,weakness, weight loss, respiratory symptoms including asthma. There may be depression, poor memory or irritability; also intolerance to heat or cold or to a change in temperature. Other symptoms include headaches,fainting or near fainting, and recurrent anaphylaxis.


Because there is not yet a cure for mastocytosis, treatment is aimed at reducing the frequency and severity of the release of mast cell products and at countering the effects of mast cell products which are inevitably released. Most patients will achieve relief of symptoms only by employing measures in both areas.

Avoidance of the factors which are known to cause a reaction for the individual patient, and cautious evaluation of other factors, such as those listed in the Table below, are important in the management of mastocytosis.

In using drugs to counter the effects of mast cell products,treatment must be tailored to the individual patient. Most commonly, H1 antihistamines such as chlorpheniramine or hydroxyzine are used to decrease the skin symptoms, vasodilation and mucous secreting actions of histamine. Stomach symptoms generally respond well to H2 antihistamines, such as cimetadine or ranitidine, which can also help reduce skin symptoms.

Aspirin or other non-steroidal anti-inflammatory drugs, if tolerated by the patient, provide relief from flushing and lightheadedness by blocking the body's production of prostaglandin D2. These drugs can cause unexpected severe reactions, though, and their use must be instituted cautiously under careful medical supervision.

Cromolyn (disodium cromoglycate) is a mast cell stabilizing drug which is frequently effective in reducing skin and gastrointestinal symptoms as well as mental and other systemic systems.

For severe diarrhea or malabsorption, collection of fluid in the abdominal cavity, and continued anaphylaxis which fails to respond to other measures, systemic corticosteroids may be required.

People with mastocytosis should carry injectable epinephrine, and they should know how to inject themselves if necessary to treat anaphylaxis.

There are other medications which may provide symptomatic relief if the ones mentioned above are ineffective or undesirable for a particular patient. No new medication or remedy should be started without careful consideration and close supervision, in case of an unexpected reaction.


It is not yet possible to predict the course of mastocytosis in any individual person. When involvement is limited to the skin, symptoms may improve or clear entirely, but it is also possible for the disease to progress to the systemic form. In about half the young children affected, symptoms disappear as they reach adulthood.

When the mast cell infiltration is systemic, symptoms may progress slowly over many years or may suddenly increase temporarily or permanently. The patient may even progress to the more serious categories of disease.

For the small percentage of patients who develop an associated hematological disorder, the course varies, and the prognosis depends on the associated hematological disease. ( 2 )

It is very important for the patient and the doctor to maintain good communication and to work cooperatively to achieve the best possible symptom control. Communication with other doctors caring for mastocytosis patients, and with other persons who have the disease, is important in order to maintain a support and information network. The affected person, or the child's parents, should strive to become educated about mastocytosis and to be aware of their individual needs and responses to triggering factors. A recognized medical warning device, such as a MedicAlert bracelet, should be worn, and extra caution is needed when undergoing dental work or surgery.

The Mastocytosis Society provides education and support to people with all forms of mast cell disease and their doctors, encourages research, and hopes to help find a cure for the disease. The Society also maintains a list of consultants who are available to advise professionals caring for a mastocytosis patient. Because of the rare nature of mast cell disease, we encourage doctors and patients to register with the Society in order to facilitate the communication and information exchange which will hasten the achievement of a cure.

Classification (adapted from (1) )

The following is a useful classification of the kinds of mastocytosis.

Cutaneous mastocytosis: Skin involvement only. This may include:

Urticaria pigmentosa: The typical rash of mastocytosis in the skin.

Solitary mastocytoma - a clump of mast cells restricted to a small area of the skin.

Diffuse cutaneous mastocytosis - skin involvement without urticaria pigmentosa or telangiectasia macularis eruptiva perstans (distinctive patches of discolored skin with small blood vessels on a reddened background. If the skin is heavily infiltrated with mast cells, the release of large amounts of mast cell products may cause systemic symptoms.

Systemic mastocytosis with or without skin involvement: Mast cell infiltration of at least one internal organ (like bone marrow or gastrointestinal tract). (2)

Mastocytosis in association with hematological disorder, with or without skin involvement: For example: leukemia, lymphoma, and myelodysplastic or myeloproliferative disorders.

Lymphadenopathic mastocytosis with eosinophilia, with or without skin involvement: Enlarged spleen and lymph nodes, infiltrated with mast cells, along with a blood count high in eosinophils.

Mast cell leukemia: This is rare but is the most serious form of masocytosis. The treatment and course of the disease is dictated by the leukemia.

Table of mast cell degranulators (adapted from (3) )

Allergens and other immunologic stimuli


Physical stimuli (heat, cold, sunlight, friction, pressure, vibration)

Bacterial toxins

Venoms (snake and insect, especially bee and wasp stings)

Biologic polypeptides (released by intestinal roundworms, jellyfish,crayfish, and lobster)

Polymers (Compound 48/80, dextran)

Drugs: Aspirin, alcohol, narcotics (codeine, morphine), polymyxin B,amphotericin B, D-tubocurarine, quinine, iodine-containing radiographic dyes, scopolamine, gallamine,decamethonium, reserpine.


1. Dean D. Metcalfe. Classification and Diagnosis of Mastocytosis:Current Status. J Invest Dermatol 96: 2S-4S, 1991.

2. Linda Golkar, Jeffrey D Bernhard. Seminar: Mastocytosis. Lancet 1997; 349:1379-85

3. Jack Longley, Thomas P. Duffy, Steven Kohn. Continuing Medical Education: The mast cell and mast cell disease. J Am Acad Dermatol 1995;32:545-61

Last update 6th December,2004