Leo’s Story
My name is Leo and I have MEN 1. Men 1 is an incurable disease that is very painful and hard to explain. My first knowledge of this disease came to me at the age of twenty one. It was 1972 and my father was in the hospital having surgery on his stomach. I was on leave from the Military and came home to visit him and to see how he was doing. Surgery had gone fine, but he had fallen while in the hospital and was severely hurt. He did not survive that fall and passed away seven days later. His doctor said he had MEN 1 with Zollinger / Ellis syndrome and that my two sisters and I may have it also since it was heredity. That was the first time I heard the word MEN 1. Little did I know that I would become very familiar with that disease in about twenty years.
My symptoms of MEN 1 first appeared when I was at work around November of 1991 and I began to sweat profusely. My sugar count became low and I was very disoriented. My
Doctor’s diagnosis was diabetes, but it was later discovered I had a tumor on my Pancrease. I actually had two tumors on the Pancrease and two on my duodenum. However my first surgery was the removal of my parathyroids to lower my calcium count. That surgery occurred in 1991.
The next surgery I had was performed at the University of Michigan by Dr. Thompson in 1998 who perfected the method of pancreatic tumor removal. The tail of my Pancrease was removed as well as my spleen at this time… The surgery went fine, but I developed an infection that closed off my stomach at the duodenum. I was on a PICC line for five months before I could eat again. I lost over forty pounds and was very weak.
The surgery took place in January and I did not return to work until late May. I was forty seven years old at the time. I had saved up enough sick time to cover my pay from work so I did not lose anything financially. I was lucky that I had not been sick or used much sick time at my job until now.
Life was pretty good after that for about five years. I retired from work in January of 2003 with twenty seven years of service… My mother passed away that month and one week later I found myself in the hospital again having another surgery. A tumor was discovered on my pituitary gland and removed to prevent possible complications later. Another MEN 1 related tumor that I didn’t expect.
The surgery went fine and life again returned to normal. Another five years went by before my older sister, who also had MEN 1, suffered severe pain and had extensive surgery to remove tumors from her liver and stomach. She had Men 1 for years but failed to treat the symptoms early enough to avoid problems. Her tumors had become cancerous and unfortunately she passed away August of 2008. I was very sad at this time and it affected me a lot.
Needless to say the next month I came down with pancreatitis and was in and out of the hospital four times in three months. Pancreatitis is very painful and requires that you go without food for about a week to allow the Pancrease to calm down so it can process food normally again. I had a psydocyst develop on my Pancrease that I had drained several times over a period of five months. This was done with a large needle through the abdomen area while in a CT scan.
My pancreatitis started in September 2008 and my final drainage occurred in April 2009.
Once again life returned to somewhat normal. My eating was limited to soft items and no spicy food whatsoever. Not that I ate spicy food anyway, but at least I could eat meat like hamburger and lean pork and mashed potatoes and gravy. All is well, so I thought.
March 17, 2011 I got severe pain in my abdomen and went to the critical care unit at my local medical provider. They did not know what was wrong and gave me some pain medications and sent me on my way. Later that evening the pain increased and my wife called an ambulance. I went to the emergency room at the local hospital and it was discovered that my small intestine was blocked. I had surgery the next day to remove fifteen inches of my small intestine that became blocked by scar tissue from a previous surgery that I had in 1998. That surgery left me with an open wound that healed from the inside out. There were no staples, just an open wound that required a daily changing of the bandage to prevent infection. I had a nurse come to my home daily to do that until it healed to a point where my wife could do it. It was painful and very discomforting to walk. I wore a truss to give me support and finally after about six weeks the pain started to subside.
Life again started to get better. I even went back to my part time job for a day. That’s when I really got sick. I had experienced some abdominal pain and felt like I had to vomit. When I did, unknown to me, I had torn my esophagus.
I did not realize this right away and did not think I was sick but just had the flu. The pain got worse and by the next night I was being sent to the emergency room again by ambulance. The doctors ran tests and found that my chest cavity had infection spreading throughout the entire area. By now it was almost seventy two hours since the tear had occurred. This was a true emergency and the doctors insisted on surgery immediately. My children were called and told to come to the hospital. The doctors told my wife that my chances of surviving surgery were about 10%.
I said “let’s go for it”! So another surgery took place to repair my esophagus. The surgery was successful and I recovered pretty well. I was in the hospital for thirty days and had to leave with a PICC line again for nourishment. The surgery had repaired my esophagus but in doing so scar tissue formed at the repair site and blocked my stomach off so nothing could pass through.
Another surgery had to be set up later when I was stronger to unblock my esophagus so I could eat and drink and just swallow. It took three months before that surgery took place (September 6, 2011). During that time I survived on a pick line without swallowing either food or liquids. Again I lost about forty pounds.
I am now at home recovering from my third abdominal surgery in six months. I still have a drain tube which will be in for a while to check my PH level.
Hopefully I will back to normal food in about four to six weeks. Just being able to swallow is a blessing. I must say my faith got me through all of this and prayer is a mighty tool. I had a lot of people praying for me and I truly believe it kept me alive and able to recover from all these surgeries.
I spent many days in the hospital and the experience I had convinced me that you have to force yourself to get up and walk to get back on the road to recovery. I walked many a mile around the floor I was on to help with my recovery. I did this with I.V.’s, drain tubes and anything else that may have been hanging out of me. Despite the pain at the surgery site, it really made a difference in me getting out of the hospital early. My will to live and get better outweighed my pain. I also realized you have to manage your own health care. I had doctors coming in my room just to see me because I had MEN 1 and they never saw a MEN 1 patient before. I was forced to eliminate all doctors coming in my room down to three that I could trust and knew my case well. I had doctors telling me things that made no sense and knew nothing of my disease.
You do have the right to refuse things, such as shots while in the hospital. I was bleeding internally from the esophagus during one of my stays and receiving a heparin shot (i.e. blood thinner) at the same time. I suggested they stop the heparin shot and low and behold the bleeding stopped the next day. My advice is to be diligent with your health care and seek out people you can trust and know you and your disease well.
Research your disease and get to know it; your life will depend on it.
Having a support group is probable the most important part of fighting this disease. I have to admit, my wife is my rock and she has been very understanding through all my pain and suffering. My children and my friends have been a mountain of support as well as my church. MEN 1 is a lifelong battle and you need a good spouse or support group to help you in the fight. Faith plays a big part also. But wherever you get your strength, don’t ever let go of it. For it will get you through the bad times and reward you in the good times.
I refuse to let MEN 1 destroy my life. I will fight to live the best I know how and will enjoy life to the best of my ability. From what I know MEN 1 patients are fighters because they have no choice, they have to be!
Maybe someday research will find a cure. We can only hope. For now we will fight the fight and make known to the world that we are survivors and we don’t give up easily.
To all of you who may read this and share with me this terrible disease, I ask that God bless you and your family and that you may find peace and joy in your life and know you are not alone in the battle.
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