Cure In Sight! Help My Plight!
Every morning, as I open my eyes, I hope to not feel the pain. Most days I find myself at a level 5, but some days it's an 8, another day to battle this relentless pain monster that never gives you a break, never lets you come up for air. It is very hard for me to put into words what it is like to awake every single day of your life to a chronic illness, to chronic pain. My name is Mina Bonocore and I suffer from a rare condition called abdominal adhesions. This is my story:
My journey of research and planning for my travel to Germany to be treated by Dr. Daniel Kruschinski only really began several weeks ago, but the road that has led me here is much longer. To give you some back story, I have had three major abdominal surgeries in my adult life. All of these procedures, while necessary at the time, have left their mark. I had my appendix removed when I was 20, I experienced a ruptured ectopic pregnancy when I was 29 that leaked over a liter of blood into my abdomen. This year, at the age of 34, I had my gallbladder removed. Over the past 10 years I have seemed to continually suffer from some type of digestive issue. The physicians that I have seen for help have always leapt to the same diagnoses of IBS. But at the beginning of 2012, something changed. My occasional "issues" turned chronic, what had been unpleasant but manageable, became unbearable and I found little to no reprieve. I began vomiting up pretty much everything I tried to eat and was experiencing a terrible pain in my upper abdomen. At first I thought I must have had a bug, but when 2 weeks turned into 4 weeks and then into 6 weeks...I knew something was not right. And so began all of the testing. They tested and tested and tested, I have had every test under the sun for all GI related issues and when that yielded no results, they tested for female related issues. I have had so many different blood tests, scans and probes; I had begun to feel like nothing more than a lab rat. In the midst of all those months of testing, I endured four separate "episodes", each with pain that was so severe I was taken by ambulance to the hospital. I continued to hope that since they were seeing/treating me in the midst of these they would truly take my complaints seriously and that perhaps they would be able to find a culprit. Finally in May, during my 5th trip to the ER, they arrived at the decision that my gallbladder was the cause for all my problems and that it should be removed. I was not excited about more surgery but was elated at the thought that this was all going to be over soon and I could get back to my life and my husband and my 3 year old son who needed his mommy to be well.
While the surgeon was inside of me taking out my gallbladder, she saw what she described as fish netting in my abdomen that she called adhesions. She told me that she "clipped it back" and that all was going to be well for me. For about two to three weeks after surgery she was right. I was feeling pretty good and was hopeful that it was all behind me, but that was not to be. That night, the pain that awoke me was so severe I truly thought I was going to die. I could not speak, I could not stand, I could not walk. I was sweating head to toe and was throwing up repeatedly. I really thought this was it. I was taken to the ER for the 6th time and was admitted; this time I stayed for 2 weeks. They did more testing, and repeated that testing, all to arrive at the same conclusion: everything was "normal". I was devastated. At that point, I thought that this was my life now, this was my lot. Rather than treat my problem, the doctors settled for treating my pain. As a result, my days have become an endless cycle of "pain management." Each morning, I take an anti-inflammatory drug and an anti-spasmodic drug that seem to help little, but I still swallow it down per the doctors' orders. Then I take a Percocet, which after waiting an hour, finally takes effect. This pill does not remedy my pain, but it seems to at least put a Band-Aid on it; for now it's a Band -Aid I will take. Three times a day this process repeats itself. On the good days, I can eat some chicken broth and plain bread, but on the bad days even that doesn't work. As a result of this entire mess, I have lost over 70 pounds, and not healthfully. After returning home from the hospital and implementing my new "treatment" for a few days, I looked at myself in the mirror and barely recognized the woman staring back at me. It was then I thought to myself ENOUGH! I was HEALTHY before all this started, there IS something wrong and they are MISSING something. I have a now 4-year old son to live for. I want to be his mommy again, not this person that is laid up in bed in terrible pain every day.
That is when the real research began and it lead me to a book written by Karen Steward. In it she told the story of her daughter's 14-year battle with this condition, a battle that so closely resembled my own that I did all I could think to do-I reached out to her for help. Karen has been my guide in understanding what adhesions are and how they affect the body. Adhesions attack women 3 to 1 over men, they are almost always the result of some form of abdominal trauma/surgery, they can actually be worsened by conventional treatments if the treatment is not coupled with a preventative to block their reformation, and the havoc they wreak on the body causes immeasurable pain. This was it; I knew I had finally found my answer. It ticked every box. To hear that her daughter had suffered from this for so long made me fear the same fate. Doctors in the United States do not commonly like to "treat" adhesions; as stated previously, their treatment commonly worsens the problem. Currently the only approved protocol is to "cut" the adhesions back, which is what my physician did for me during my gallbladder surgery. The problem is that in a matter of weeks or months, they will return. Adhesions are like weeds and once they are clipped back if a barrier is not created to prevent reformation they re-grow and are almost always worsened by the procedure to "correct them". There is no competent FDA approved barrier treatment available in the United States to date. But then she shared the information that changed my life. There is one doctor that can help me, a German physician by the name of Dr. Daniel Kruschinski. Dr Kruschinski has developed a procedure specifically to remediate adhesions and a barrier treatment to prevent their reformation. As stated previously, there are no competent barrier treatments available in the United States, so I feel I have no other choice but to go outside of our country to seek treatment. Knowing that this man has helped so many with my condition does give me immense hope. Despite the liquid diet and pain pills, I have hope of a true resolution. As noted, I have currently lost over 70 pounds as a result of this condition and I am still losing. Time is of the essence for me to stop this monster and regain my life, for myself and for my family.
I am now in the midst of preparing myself for this journey of healing. This surgery will cost me upwards of $15,000.00 (which covers gasless-lift-laparoscopic adhesiolysis, second look laparoscopy, surgical and anesthetical fees for both procedures, and hospital stay for 14 days and all check-ups. It also covers the SpraySheild that Dr. Kruschinski will use to act as the barrier for reformation.) While my family and I have currently raised almost half of what is needed, thanks to the generous donations thus far, there is still a long way to go. We are a single income family, who is blessed with extended family that has been so able and willing to help care for our son and household, but the medical bills I have already sustained have placed a large strain on us. We ask humbly if you have the means to help, any means at all, even a dollar, please make a donation to my cause so that I can finally regain my life. Thank you so much and god bless!
To learn more:
http://laparoscopyofadhesiolysis.com/
: UPDATE 09/04/2012: I just received a copy of the operative report from my gallbladder surgery. The findings show that I have extensive adhesions in the right quadrant of my abdomen. That my gallbladder had scarring was extremely distended and also was "stuck" by the adhesions to the edge of my liver. I now have the concrete proof that I have been seeking to assure me that this surgery is the answer to my prayers!
