I am 32 years old and I have an autoimmune disorder and a pretty serious health record. My doctors have collectively advised me against carrying a child. It has nothing to do with infertility but instead just my general health. Carrying a child would pose too many risks on myself, let alone another human.
When I received this news 2 1/2 years ago I was heartbroken. My husband and I are rare High School sweethearts. We dated 10 years and married when I was 24. We will celebrate 8 years of marriage this August 26. Early in our marriage and during the recession, I lost a job, got sick for the first time, moved to California to chase a dream and the time never seemed to be right for bringing a baby into our home. However, we both knew if we were to be surprised with a pregnancy we would welcome the opportunity with open arms.
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| My husband Dusty and I on our wedding day, August 26, 2006. |
The following is a post from my Facebook page from March 1, 2012:
On January 31, life sucker-punched me . I woke up that morning with a bloody nose, gums, a blood blister on my lip and red dots all the way up my legs (petechia). By the time the doctor saw me, my blood platelets (the things that make your blood clot) were less than 1000 and I was hospitalized. The doctors didn't know how I was even walking. To put things in perspective, a normal blood count is 450,000 platelets.
So, I've been in the hospital for over a month. The doctors first tried giving me donor platelets, blood transfusions and something called IVIG. I would get several transfusions a day and my platelets would initially go up to 3000/4000 then drop again. They then tried a few different types of chemotherapy because they needed to suppress my immune system. They thought I was producing platelets but my body was destroying them (an autoimmune reaction). That, too, didn't work.
At this point I asked to be transferred to Norton Suburban hospital in Louisville, KY. The first thing they did was a CT scan and they thought they saw internal bleeding. They also biopsied my bone marrow to see if I was producing platelets. They results of these tests forced the doctors to perform a very risky emergency splenectomy because in many cases of ITP, the spleen is responsible for destroying the platelets. In many cases, this is also the cure-all. This, however, was not successful for me.
The next couple of weeks included plasmapheresis dialysis, daily platelet transfusions and more chemotherapy while I lay in the ICU on a ventilator. I was given a sedative, propofol, but it was causing my blood pressure to drop, forcing the doctors to take me off of it completely. This meant that I woke up on the ventilator. A lot is a blur, but I was aware of what was going on, I just couldn't talk.
When it was finally time to remove the ventilator, breathing didn't come easily. At all. There were complications with my airway closing up, and something called strider. One day, because I was't getting enough oxygen to my brain, I experienced something they called ICU psychosis. That was one of the most bizarre things that has ever happened to me. I blacked out. I remember being in a dream. But my family and friends tell an entirely different story. One in which I was insisting they let me leave the hospital to go get food! (I wasn't eating at this point but was obviously hungry).They said I was insisting and being borderline combative about wearing the CPAP mask that I needed to help me get oxygen. They said I kept trying to remove it, saying I didn't need it and the nurses kept replacing it. I don't remember any of this.
The time I spent in the ICU was very difficult because nothing the doctors tried was helping me. It also didn't help that there were many doctors who thought it was hopeless and my condition was worsening by the day. This attitude was something my husband didn't tolerate well. He has a very strong faith in God and didn't want the negativity anywhere near him or me. My friends and family who visited were emotional, scared and some of them cried at my bedside. I knew some of them thought I could die. I knew I could die. A lot of my thoughts were of my husband, family and friends. I knew that they were so scared for me and they all loved me. I pleaded with God for their sake. I had so much left to do. I needed to have children; I had love to give! My husband didn't deserve to lose his wife, or my parents their child. I prayed to get me through it. I prayed for the strength to remain calm and patient. I knew the worst thing I could do was fall apart.
The hospital also sent the Chaplain in to pray with me. She focused on helping me shut out the negative thoughts, put my faith in God and told me "don't look left, don't look right, look straight ahead."
The hospital also sent the Chaplain in to pray with me. She focused on helping me shut out the negative thoughts, put my faith in God and told me "don't look left, don't look right, look straight ahead."
Finally, after three weeks, my Hematologist tried a drug called cyclosporine. By this time, I was just starting to eat and drink again after being on an IV for 3 weeks. And I had to drink a solution of this medicine. which was serious stuff. The nurse brought in a glass chalice (what?!) and mixed it up with juice and made me drink. I almost spit out the first sip. This was no Robitussin, it tasted stronger than Bacardi 151! (if you've ever had the joy of drinking Bacardi). I had to choke down the mixture. It was horrible.
Cyclosporine worked! The next morning when the nurses received the results of my platelet count, they came to my bed cheering and clapping. They went up! Dramatically! Day after day my platelet count rose. And I got to move from the ICU to the Cancer Center, where my Hematologist works (and they have perks like free slushies). : )
After a week, I'm close to going home. Dr. Williams ordered a chest scan a few days ago and found blood clots in my lungs (pulmonary emboli) so we're trying to regulate my blood with Lovenox, a blood thinner. Dr. Williams is anxious to release me and get me home where he says I'll have less of a risk of developing infection. I'm especially susceptible to infection and viruses because of my suppressed immune system.
My hero, Dr. Patrick Williams, thinks I have an autoimmune disorder and we'll be doing a lot of testing in the future to figure out why my body decided to shut down. What I have right now is called idiopathic thrombocytopenic purpura. Idiopathic means "the doctor's don't know what causes it." It's very rare and all the doctor's say I'm the worst they've seen.
I look like I just returned from war and my hair is starting to come out from the chemo, but I know how blessed I am by all of the prayers and kind thoughts I've received. I've had incredible support and I'm alive. I survived this. This experience will change me forever. I smile everyday because I'm here. : )
Battle wounds: I show the bruises that are left from the nurses playing "seek and find" with my veins. My veins were extremely thin due to my condition and would burst. With ITP, internal bleeding is a huge risk.
Home from the hospital. Equipped with my oxygen tank and walker.
The scar and residual swelling from my open splenectomy.
When I left the hospital, since I had been bedridden for over a month, I could no longer walk. I had lost close to 20 pounds and my muscle tone was non-existent. It shocked me how quickly a body could deteriorate! I was attending jazzercise before I went into the hospital. I was a seemingly healthy 29 year old woman and then, bam! I could barely lift a leg, let alone walk 200 feet!
Insurance paid for a Home Health Service to come to my house for a few months when I returned home to collect my labs and assist me with physical therapy. My mother, who is an RN, also moved in for a few months, so that was a blessing in itself. The home health service was actually less than stellar, so I was so extremely thankful to have my mother at my beck and call. It really helped ease my anxiety, especially when my nose would bleed and I couldn't get it to stop for an hour.
The first really sucky thing about having an autoimmune disorder is that you're no longer healthy. And when I came home from the hospital, I required 9 medications, a walker and an oxygen tank. I was definitely not the picture of health. I was in constant pain, experiencing severe nose bleeds, and I practically couldn't do anything for myself. You'd think I would be angry? Frustrated? Sad? I had my moments, but mostly I was honestly happy and so thankful to be alive. Being reliant on medication everyday for the rest of my life? Not ideal. The stigma of being unhealthy/sick? Also not something I liked. At all. But what else could I do? I had to accept my fate. And I was determined to do everything in my power to maintain the health that I could control.
I was also absolutely blown away by my family, friends, acquaintances and strangers who prayed for me, supported me, came to the hospital, came to my home, dropped off food, visited my husband, etc. I cried because I'd never been exposed to so much love in my life. I was completely and utterly humbled. There was a reason I got sick. There was a reason God chose me. He knew I could handle the adversity He threw my way. As difficult of an experience it was for me, my family and friends, I would not be the human I am today had I not gotten sick. I would not have the compassion, humility or the gratitude for life. My husband constantly reminds me when I lose track of what's most important in life of when all I wanted was to leave the hospital and go home to see my dog.
It wasn't a fast rehabilitation, it was an uphill clime. And I didn't waste time. I walked with my walker every day. Even when my family told me not to do something or they offered to help, I was stubborn. The physical therapist came over and worked with me weekly and I was determined to get my muscle tone back. Many days I would exhaust myself. But I had a goal: I was determined to sing karaoke and dance at my 30th birthday party on May 1.
That's when the second blow came. Ever since I'd been taken off the respirator, my voice was hoarse. The doctors and nurses said it would get better with time, but it didn't seem like it was. I was referred to an Ear, Nose and Throat Specialist who then referred me to a Laryngologist.The Laryngologist identified that I had a polyp on my vocal chord, most likely from where the respirator had rubbed on my vocal chord. There were 2 reasons that they though this happened. 1) the ventilator tube was too large 2) I was on the ventilator for 8 days.
The doctor said we could schedule a procedure to inject the polyp directly with a steroid to hopefully cause it to dissolve, but there were no guarantees. I was left with a raspy voice. Everyone who called or visited thought I was sick, and I'd have to say, "nope. This is my voice. The respirator damaged my vocal chord." I did not want anyone's pity but I also wanted everyone to adjust to my "new voice." So there I was, disappointed we'd hired a DJ, planned a whole birthday party around karaoke and I sounded like I smoked 2 packs of cigarettes a day. Singing is something I've always enjoyed. I practically came into the world singing "hello, I love you, won't you tell me your name." I auditioned for season 2 of American Idol... And now, I was left with one vocal chord. Heartbreak #2.
30th birthday girl and a new cropped cut!
Dancing the night away. I requested that everyone learn "the wobble."
I made these sterling silver hand-stamped necklaces with chalcedony and cultured pearl pendants for the ICU nurses who cared for me.
I made this cross out off a sheet of copper for my hero, Dr. Williams. It reads " Thank you Dr. Williams. You have been blessed by God with a healing touch and caring heart. Keep preforming wondrous miracles. Krysten Baker and family."
After a few months, I gathered the courage to undergo anesthesia to have my vocal chord injected with the steroid. It helped but didn't dissolve the polyp completely. After a few more months, my working vocal chord continued to improve but it was determined that the other no longer had a polyp, it was paralyzed. There was nothing they could do. I just had to learn to accept my new voice. And I had to adjust my karaoke repertoire now that I was an alto and no longer a soprano.
My 30th birthday present was a bucket list trip to Chicago for Lollapalooza where the Red Hot Chili Peppers were performing. This is my DIY spruced up vintage RHCP tee for the occasion. It has my favorite line from Scar Tissue on the back: "I'll make it to the moon if I have to crawl."
I also got to see a High School friend I hadn't seen in 10 years. We had so much fun!
Before catching the plane back to Louisville, I got a tattoo that incorporated what the Chaplain in the ICU instilled in me in the formation of a cross.
I had to wait six months for the chemo to leave my system before I could undergo the blood tests that would ultimately diagnose me. I ended up waiting a year to get into the doctor and actually have the tests run, which means for nearly a year I was a medical mystery. The following is my Facebook post from January 28, 2013:
Just short of a year from when I went into the hospital in 2012, (January 31) we finally have answers. The results of my blood test from my new rheumatologist came back last week and I had two abnormalities. These tests were ran while I was in the ICU last year, but came back negative due to the chemo and plasmapheresis dialysis that was used in attempt to suppress my immune system. The Dr. says I most likely have anti phospholipid syndrome. This autoimmune disease has symptoms such as low platelets, clotting and miscarriages. The Dr. will also keep monitoring me for Lupus. I had a few positive results that pointed to Lupus, but not enough to diagnose at this time. For now, I have an added medication to my daily regimen and I will be monitored by my doctor. The most difficult aspect for me is several of my Dr.'s have either told me not to get pregnant or if I do I will be very high risk. I don't know if having children is worth the risk to my health or worse, a baby's. God has a plan. It may be adoption for us. This is a bitter pill to swallow. I'm trying to stay positive, be thankful I'm alive and that we finally have answers.
Heartbreak #3. I will never carry a child.
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