Secondary Health Problems
As if living with an incurable, life-threatening rare illness is not enough, those of us with Systemic Mastocytosis must also endure a constant barrage of secondary illnesses. These secondary illnesses alone are enough to scare the daylights out of any healthy person. Combine these secondary problems with our primary illness and it seems as though we are being bombarded heavily from all sides. "Duck and cover" does not work here. We must face this barrage boldly, come to terms with it, accept it, and then, while still struggling with our primary illness compounded by secondary problems, we must quickly and effectively address the problems encountered by the barrage of secondary illnesses.
For me, the barrage of secondary problems has always included neurological symptoms likened to those experienced by multiple sclerosis patients. I suffer from debilitating bone and joint pain as a resultant effect of my primary illness. I have transient vision issues. I have transient cognitive difficulties. I suffer from transient twitching and tremors. My legs sometimes refuse to cooperate with my brain. I have had a brain tumor. I have had cancer more than once but consider only one of those bouts worrisome, difficult and even painful. Now I am beginning to see and feel the effect my primary illness is having on my internal organs. I have always felt transient pain in the areas of my liver, spleen, kidneys and gastrointestinal tract, but now the pain has worsened and organ damage is visible in imaging.
Systemic Mastocytosis patients can suffer from a myriad of secondary illnesses. Those of us struggling with this rare illness have a little war raging inside our bodies on a cellular level. Our mast cells, which are only supposed to attack things which do not belong in our bodies (germs, bacteria, inflammation), are now attacking our own bodies indiscriminately. Quite often, in many patients, the mast cells will attack our organs.
When the mast cells attack an area of the body, for instance the skin, we will experience a painful raised rash, hives, and itching. Although the effects differ with each organ, Systemic Mastocytosis patients have historically suffered from idiopathic attacks on the liver, spleen, gastrointestinal tract, kidneys, etc. Compounding this problem is the fact that during these attacks, the mast cells release mediators into the tissue. Some of these mediators cause immediate reactions of swelling and pain. Other mediators cause long term problems such as bone pain, joint pain and chronic high cholesterol. The effect of constant attacks on any particular organ is not only pain, but organ damage.
In the past few months, I have experienced debilitating problems with my gallbladder. Although this has resulted in the much needed loss of 20 pounds of middle-age weight, it has made the year 2013 quite miserable overall thus far. The constant pain, nausea and time spent in the bathroom has been unbearable. This is no way to lose weight no matter how much you would like to lose weight!
The new year arrived with me suffering from the stomach virus that was bouncing from household to household all winter. This virus hit Adam and I within minutes of each other. I struggled with this virus for two weeks in January and then it hit me again after Sheila had it in February. I again had the virus for two weeks except, this time, it continued to get worse the longer I had it. After my second bout with the stomach virus in just three months, two weeks long each time, I finally made an appointment with my doctor. She ordered some imaging of my abdomen. Problems were found with my gallbladder as well as some minor damage to my liver. This stomach virus proved to be too much for my damaged liver and gallbladder which prolonged and complicated my bouts with this virus. As a result of the damage and problems seen in imaging, I was referred to a surgeon.
Surgery. Even to a healthy person, hearing of the need for routine surgery is always a bit unnerving. For a Systemic Mastocytosis patient, it is absolutely terrifying. There is a history of Systemic Mastocytosis patients going into vascular collapse simply caused by general anesthesia used in routine surgery every day. So, surgery for me? To put it mildly, I wasn't too happy about this! I, however, was not about to turn a blind eye to my health and just ignore this problem. I needed to choose a surgeon wisely and I needed to discuss and exhaust all options with the surgeon.
My primary care doctor's office was not moving quickly enough in referring a general surgeon, in my opinion, so I took matters into my own hands. It took me only a few minutes to narrow down my search and to find a local surgeon with decades of experience who specializes in high risk surgery and trauma surgery. I called the surgeon myself and scheduled an appointment as soon as possible.
We talked for a long time. The surgeon was very personable, very professional, and clearly loved his job. In the end, considering my complicated medical history, he felt the risks of surgery far outweigh the need for surgery. Until, or if, things take a turn for the worse, I am not a candidate for surgery. The surgeon did, however, give me his card with his home telephone number and advised me to stay close to a hospital. He also explained what health problems I may encounter, things I should avoid, and when to call him.
It is never good to hear that you have organ damage. This is especially true when you have an incurable illness which, in its aggressive form, is known to damage organs causing all sorts of terrible secondary illnesses, secondary symptomatology as well as organ damage. It is, however, very good news to hear that I do not need to risk life threatening complications in surgery due to this current situation.
I am very thankful that I boldly took matters into my own hands and personally chose this surgeon. I am very thankful this surgeon proved to be quite exceptional. And, I am very thankful that this talented surgeon feels comfortable delaying any procedures which could cause dangerous complications.
Sometimes the secondary health problems and illnesses can overshadow the primary illness. Regardless, the secondary problems must be accepted and handled swiftly, effectively and consistently simply because we must. The barrage of secondary illnesses continues.
I suppose this is my 'new normal'.
For me, the barrage of secondary problems has always included neurological symptoms likened to those experienced by multiple sclerosis patients. I suffer from debilitating bone and joint pain as a resultant effect of my primary illness. I have transient vision issues. I have transient cognitive difficulties. I suffer from transient twitching and tremors. My legs sometimes refuse to cooperate with my brain. I have had a brain tumor. I have had cancer more than once but consider only one of those bouts worrisome, difficult and even painful. Now I am beginning to see and feel the effect my primary illness is having on my internal organs. I have always felt transient pain in the areas of my liver, spleen, kidneys and gastrointestinal tract, but now the pain has worsened and organ damage is visible in imaging.
When the mast cells attack an area of the body, for instance the skin, we will experience a painful raised rash, hives, and itching. Although the effects differ with each organ, Systemic Mastocytosis patients have historically suffered from idiopathic attacks on the liver, spleen, gastrointestinal tract, kidneys, etc. Compounding this problem is the fact that during these attacks, the mast cells release mediators into the tissue. Some of these mediators cause immediate reactions of swelling and pain. Other mediators cause long term problems such as bone pain, joint pain and chronic high cholesterol. The effect of constant attacks on any particular organ is not only pain, but organ damage.
In the past few months, I have experienced debilitating problems with my gallbladder. Although this has resulted in the much needed loss of 20 pounds of middle-age weight, it has made the year 2013 quite miserable overall thus far. The constant pain, nausea and time spent in the bathroom has been unbearable. This is no way to lose weight no matter how much you would like to lose weight!
Surgery. Even to a healthy person, hearing of the need for routine surgery is always a bit unnerving. For a Systemic Mastocytosis patient, it is absolutely terrifying. There is a history of Systemic Mastocytosis patients going into vascular collapse simply caused by general anesthesia used in routine surgery every day. So, surgery for me? To put it mildly, I wasn't too happy about this! I, however, was not about to turn a blind eye to my health and just ignore this problem. I needed to choose a surgeon wisely and I needed to discuss and exhaust all options with the surgeon.
My primary care doctor's office was not moving quickly enough in referring a general surgeon, in my opinion, so I took matters into my own hands. It took me only a few minutes to narrow down my search and to find a local surgeon with decades of experience who specializes in high risk surgery and trauma surgery. I called the surgeon myself and scheduled an appointment as soon as possible.
It is never good to hear that you have organ damage. This is especially true when you have an incurable illness which, in its aggressive form, is known to damage organs causing all sorts of terrible secondary illnesses, secondary symptomatology as well as organ damage. It is, however, very good news to hear that I do not need to risk life threatening complications in surgery due to this current situation.
I am very thankful that I boldly took matters into my own hands and personally chose this surgeon. I am very thankful this surgeon proved to be quite exceptional. And, I am very thankful that this talented surgeon feels comfortable delaying any procedures which could cause dangerous complications.
Sometimes the secondary health problems and illnesses can overshadow the primary illness. Regardless, the secondary problems must be accepted and handled swiftly, effectively and consistently simply because we must. The barrage of secondary illnesses continues.
I suppose this is my 'new normal'.
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