KRISTI'S STORY

I have been in close contact with a wonderful woman named Kristi. She and I have been emailing for the past month or so and it has been so great to speak with her about this awful disease. I really feel very honored to share her story with you. She has been through some very scary medical issues and despite wanting to give up, has kept going. Kristi takes care of her husband and children, works full time to get the insurance for the family, all the while dealing with everything Behcet's has to throw at her. Her story is full of inspiration and words of wisdom. Here is Kristi's Story:

 

 

 

My Behcets "story" began when I was a young and healthy 29 year old mom of 2. I had recently been through a divorce and had moved back to my hometown with my 2 small children who were 2 and 4 at the time. I was very active and energetic....fit and fun :) I exercised to the tune of 7 miles a day on my bicycle, combined with aerobics as well. One day, as I got on my bike to ride, I noticed that my heart was racing, I couldn't count it and I felt extremely dizzy...I was unable to ride that day...I also noticed that I was experiencing pitting edema ( swelling) in my legs and I had some weight gain ( very rapid weight gain,more than 20 pounds in a very few weeks despite a healthy diet and exercise). I am a nurse and was working on a very busy medical surgical unit of our local hospital...I went in for my typical weekend shift and just felt bad. I hooked myself up to on of the heart monitors and my heart rate was 165. My PCP happened to be at the hospital that day and immediately sent me to the ER. They were fearful I might have a pulmonary embolism as my oxygen levels were also low. In the ER they gave me IV medication to lower my heart rate as well as IV diuretics to help me get rid of some fluid. The diagnosis was "Fluid overload." A few days later the same scenario repeated itself. This time my MD admitted me to the hospital with a diagnosis of High Output Heart Failure. How in the world could a healthy 29 year old be in HEART FAILURE??? It just made no sense at all. I was transported to a larger hospital for a cardiac catherization. The good news was, my heart looked ok, it was just beating way too fast...the bad news was...they lacerated my femoral artery during the procedure resulting in a massive retroperitoneal bleed ( I bled out into my abdomen and back) which was excruciatingly painful and resulted in my losing about 2/3 of my total blood volume and got me a 5 day hospital stay. It took me literally months to recover from that and I can honestly say, I haven't been the same, physically, since then. Over the next days, weeks, and months I would develop more and more strange symptoms. I was convinced they were all related but I couldn't seem to convince my team of physicians. I was told I had "Inappropraite Sinus Tachycardia" which I do have, but that didn't explain all my other symptoms....I had chronic excruciating leg pains, I developed chronic mouth ulcers....they were severe and often I would have too many to count...I had a period that I had sores in my mouth every single day for over 2 years. I wouldn't go anywhere without my lidocaine to keep my mouth numb. I developed Raynouds phenomenon in my feet and hands. I had joint pain and swelling...even getting off the bed in the mornings and putting my feet on the floor was painful and would cause me to limp. I was short of breath. I was tired all the time....so fatigued. I had such difficulty working....and taking care of my children....and just basically doing anything. I was on so many different medicines for a condition no one could name. Some of my doctors tried to convince me it was all in my head. I had one physician tell me I had fibromyalgia and he gave me an antianxiety medication without even examining me or running one single lab test. I visited more specialists than I can even name, desperate for an answer to no avail. But I knew my body...this was not something I "made up" or could "talk myself out of." This was very, very real and had become a life altering nightmare for me. As far as lab abnormalities...it seemed like something was always out of whack but never enough things to make a clear picture. My Sed Rate stayed elevated as did my CRP and my white count. My potassium was often out of whack. Finally, after years of trying to find an answer, I just gave up. I stopped every single medication I was taking and gave up. I thought " I still feel awful even on all these meds so I may as well stop them and let the chips fall where they may." I did go through a period which I now realize was a remission...I felt really good but it didn't last long....the symptoms started back with a vengeance...I had so much pain I often couldn't even bear to walk more than a few feet. It was crazy!!! I felt like maybe I was crazy! About this time I met my now husband. Between him and my parents, they talked me into aggressively trying to find an answer once again. I had a new primary care physician by this point and he was convinced I had an autoimmune disease. My search for answers led me to Duke University Medical Center and their awesome Rheumatology department. I found a wonderful doctor who sat down with me and read every single symptom I had ( by this point I had starting documenting all the strange syptoms and had written them down) and went through every single page of my gigantic medical record and guess what??? She did not dismiss me as crazy....she listened to me...and more importantly she believed me. She assured me we would get to the bottom of it and find an answer. After a plethora of labtests and visits to other specialists ( gastroenterology, neurology, and cardiology) she sat down with me and told my husband and myself that she felt I had a disease called Behcets or at least an offset of it. She told us there may never be one definitive test that said " this is 100% what you have" but at some point you had to start treating the symptoms and try to improve the quality of life. I started with Prednisone and Colchicine. Within just a few weeks of those 2 medications, my mouth ulcers COMPLETELY resolved. This alone was a miracle to me. The joint pain and pain in my legs decreased. Shortly after that I started an immune suppressant called Imuran. This was not an easy decision for me. There can be serious long term side effects from this medication. But I decided that I had suffered for almost 7 years and I was determined to do everything I could to regain some quality of life back. In the beginning the Imuran seemed to work. I was feeling the best I had in years!!! But then I got sick...really sick. My gallbladder went bad on me and it seemed to throw me into a flare. I was hospitalized to have it removed and to recover. I guess being immune suppressed made the recovery difficult. Incidentally, while the surgeon was removing my gallbladder, he did a liver biopsy as well because my liver enzymes were so elevated...they were trying to figure out if the Imuran was causing that or my gallbladder....the results came back that I had what called non caceating granulomas...which is indicative of autoiummune diseases and inflammatory issues...just another clue in my mystery....it also led my rheumatologist to question if maybe I had some form of sarcoidosis...another autoimmune disease....regardless the treatment would be the same. Since then I have struggled with more joint issues in my back and hip requiring epidural injections....I also have started developing some neurological symptoms which include dizziness, difficulty with coordination and balance,as well as hand tremors. I think these symptoms scare me the most....I had an MRI of my brain which showed some small spots of basically the same thing that is in my liver....this is something that will have to be followed closely with repeat MRI"s...my rheumatologist assures me that the treatment would still be the same even if the neuro symptoms are from the Behcets. In case anyone is curious, the medications I take are... Imuran twice a day, I stopped the colchicine as the MD's thought maybe that med was causing the neuro symptoms ( it wasn't), Prednisone 8 mgs daily ( we are in the process of trying to slowly wean me off of this medication), Atenolol for my fast heart rate ( even with the med it still runs over 100), Nexium for all the GI issues, Cymbalta ( this is supposed to help with joint pain, it also helps me cope better with the disease), Tramadol ( this is an anti inflammatory that I take as needed), Phenergan ( this is for nausea which I experience alot of), I occasionally have to take Lasix ( for fluid overload) and Potassium. I also take alot of Calcium because of the prednisone and the effects it has on the bones.I occasionally have to take pain medications for the back/hip issues and I also have TENS unit for my back...this seems to help alot with the muscle spasms.

Looking back over the last 7 years, I still don't know if the heart failure was a symptom of my disease or the trigger for my disease....I know that my life changed dramatically in what seemed like an instant. It's a hard thing to be told you have a chronic disease...the feelings are so hard to explain. As a mom, I worry about my future and what that means for my children. I work and I carry the health insurance...I worry what will happen if I am unable to work? What will my family do? I worry that the rest of my life will be spent not feeling well....that is a heavy burden to bear. You know that you have to keep going on for your children and family but there have been many, many dark days that I have questioned if life is even worth it? I think this is something alot of people with illnesses feel but are too afraid to express. The reality of this disease is this: It is hard. It isn't pretty. It hurts. It sucks. But it's my reality and my responsibilty to figure out how to cope. I continually have to repeat to myself that there are SO many people that are SO much worse off than me. I do have so much to be thankful for. I have a supportive husband and family....that alone is a blessing. I think what I want people to take from my story is twofold. If you have an illness and have difficulty finding answers or finding a physician that will listen to you...keep going. Keep searching...you alone know your body the best. Keep at it until you find the right fit. You ahve to be your own advocate. Be aggressive. Be firm. The other thing is this....if you are healthy...if you wake up in the morning with no pain, no sores in your mouth, if you wake up and feel good...just thank God. So many people take their normal everyday lives for granted not realizing that there are so many people...people you know and just don't realize, that don't have that luxury....we wake up every single day and struggle. Don't take your good health for granted...it is a rare gift.