And It's About Time There Was Some Support For Cushing's!
Hello. My name is Marie. I come from a wonderful family of six, including an identical twin sister, Nora. Our dream was to have a double wedding, which we fulfilled almost five years ago. We are both blessed to have loving and caring husbands. We used to be so identical that we had won numerous awards for the "Most Look Alike" contest at a twin festival in Twinsburg, Ohio (southeast of Cleveland) every summer. It is the largest gathering of multiples in the world. The last couple of years were very hard and traumatic on all of us that Nora and I had to miss the festival for the first time in 13 years, in 2000.
The summer of 1999, My husband, Paul & I were ready to have a child. Immediately, I got pregnant (followed by a miscarriage in 1997). After the first trimester, I started to have some major complications with the pregnancy. This included: major swelling in my neck and face, hump back, sore & weak muscles, fatigued 24-7, numb heels, tingling of my hands, memory loss, purple stretch marks, bruising, acne, facial hair, big time memory loss and my legs would totally give out for no reason. All of this, my OBGYN said this is all part of pregnancy and every woman has different symptoms. They also said with my facial hair and acne, I was probably having a boy, because I might be carrying a lot of testosterone hormones. And with the swelling they wanted me to cut back on salty foods.
During my 24-week check-up, (6 mos.), Paul and I wanted to find out the gender of the baby. We were like two little kids at Christmas time opening presents. During my 30-minute ultra sound, the nurse looked confused and couldn't tell if our baby was a boy or girl. She sent us back into the OBGYN room and wait for our Doctor to speak to us. Paul and I were excited to hear what she had to say, "Boy?" or "Girl?" It was just minutes and the nightmare begins. We were told that our baby is in serious trouble and will not survive because there was hardly any amniotic fluid surrounding the baby. The baby needs this fluid to develop healthy lungs. Basically, after I would deliver the baby, there is a very slim chance for survival.
I was automatically switched to a high-risk doctor, Dr. Barak Rosenn. He told us the same information and put me immediately on bed rest. I told him when I was 16 weeks pregnant, I had made numerous phone calls to my original OBGYN that I have been losing a lot of fluid while sitting down, walking, sleeping, you name it. I had to wear depends to my job so I wouldn't embarrass myself. Again, they told me this is normal during pregnancy. Dr. Rosenn ran some tests and discovered that my water had actually broken at that time. I never knew that I could have all these emotions at one time.
December 7, 1999, my 25-week of pregnancy, I was having some dizziness, therefore Paul and Nora took me to the hospital. Dr. Rosenn ran some tests and discovered that my blood pressure and sugar level had escalated and my electro lights and potassium dropped drastically. I had to be admitted in the hospital basically until I would go into labor and have the baby. Remember, this can be in a few weeks or until my original due date which is March 16, 2000.
Nora pleaded with Dr. Rosenn and explained to him that we are identical twins. With my physical appearance, he would have never guessed that we were twins. He then mentioned of the word Cushing's and that was it.
The next morning, (in the hospital), I started having some excruciating pain in my lower back and abdomen. The monitor that I was hooked up to wasn't showing any signs of contractions. Therefore, the nurse said I was having some gas pains and some laxatives would take care of it. Within seconds after the nurse told me that, I went into labor. Instead of the gas pains, I was actually in back labor and to make matters worse, our baby was breech.
On December 8, 1999, I instantly forgot all the pain I was in because we had a beautiful baby daughter, HOPE. We knew she was taking a turn for the worse with in hours after she was born. We immediately had her baptized and unfortunately, we were planning funeral arrangements.
Hope fought for her life for 23 hours. And on December 9, 1999, God rest her soul. I long to hold her. I wanted so desperately for reassurance that our baby was then going to be okay.
On December 12, just hours before we laid her down to rest, I felt a warm, comfortable feeling deep within. As I had my left hand resting on my husbands arm, I then felt a brushings of tiny, little hands rest on my left psalm. I instantly cried tears of relief. I had no doubt that those tiny, little hands were Hope's hands. I had a strong belief that Hope was letting us know she was okay. That is why I have no doubt that Hope is in great hands of the Lord.
Nine days later, Dr. Rosenn ordered numerous tests and CT Scans for Cushing's Syndrome. I was text book material. My endocrine Doctor, Dr. David Delessio, found the tumor located on my left adrenal gland.
On January 24, 2000, my surgeon, Dr. Olof Hasselgrin, successfully (a 5 hour procedure took only 45 minutes) removed the tumor and adrenal gland. It is lead to believe that me having Cushing's Syndrome caused me to lose our baby. The Doctor's even back tracked and said I might have had Cushing's since my first miscarriage in 1997. They believe and guarantee that I will be able to have another child. They were surprised that I even conceived two times, because my menstrual cycle was off.
My weight was always the same for years. Since the miscarriage in 1997, I still weighed 100lbs. I slowly, but surely was gaining weight and thought maybe it is just age because I was pushing 30 yrs of age. Well, when I got pregnant in 1999, I weighed 114lbs. This may not be much weight, but being used to weighing 100lbs almost your whole life, you tend to worry about it.
I went through a lot of struggles since my surgery. It was announced that both my brothers and Nora were all expecting to have a baby. I was really happy for all of them, but I was also sad. I started to give up on my Faith and Belief in God. I was so depressed for months, I had to get on antidepressant medication. (Whoever invented Adavan deserves a spot in heaven). I must have cried a river every morning, noon & night. If Paul wasn't home, I was at Nora's house sleeping. They were my security blankets.
I did a lot of praying and slowly did I start realizing that I may have a 12 inch scar on my stomach, I should be thankful that I have my life back.
As of today, April 2001, I am totally off all meds. I finally have all my energy back and enjoying every bit of life. I am so glad to be back to work full-time. Paul & I are enjoying our nephews and nieces and someday we will enjoy one of our own.
I thank the Lord, my husband, family (especially Nora), friends, my boss and co-workers (for allowing my to heal physically and emotionally for almost 7 months before going back to work full time), Dr. Barak Rosenn O.B. (for discovering of my Cushing's Syndrome), Dr. Olof Hasselgrin (Surgeon), and Dr. David Delessio (my Endocrinologist, who is the best in the world), for all their support during the time of my sadness and illness. I especially give a big "Thank You" to all of you on the Cushing's Board for giving me the strength and courage to tell my story and share it to all. I sure hope my story will be read by a lot of OBGYN's so they will not misdiagnose this terrible disease and confuse it with pregnancy.
My wish is to have Cushing's Syndrome/Disease ordered by all Physican Doctors and OBGYN Doctors to be tested during a Normal check-up examination. This will ease a lot of our pain.
Love you guys and God bless.