The journey with my fertility specialist has been a long, complicated process that Dusty and I have entered into with faith and hope. We are currently on the brink of something very exciting but getting to where we are today is roughly two years in the making.
The first day I met Dr. Homm is now a distant memory. I had gone in with the hope, courage and confidence given to me by Dr.Williams. To my disappointment, however, Dr. Homm was very cautious with me. He said the gestation carrier was possibility but retrieving my eggs was not going to be an easy feat. At the time, he'd never worked with someone as high risk as myself, on blood thinners, who'd survived two episodes of pulmonary embolism and ITP. He explained other options for us, like using donor eggs. Ultimately, I left with a list of things to do: test my eggs, test my husband's sperm and see a thyroid specialist for my newly discovered thyroid disorder. Dr. Homm was particularly interested in my eggs. He thought that the chemotherapy I'd endured could have destroyed any hope we'd had in retrieving.
Along with all of the other information I received that day, I left extremely overwhelmed. I went home and discussed everything he'd told me with my husband and I honestly felt that it was just too much. We started to really look into adoption. We watched documentaries and scoured the internet. We talked to family members and friends who'd adopted and one thing stood out: it wasn't an easy or inexpensive process.
At the time, we weren't ready to start the process of either a gestational carrier or adoption. Medical bills were coming in from my ITP episode. We owed thousands. And as we researched adoption, we knew we needed to come up with ten of thousands. As a result, our fertility journey was put on the back burner.
About a year later, after our debts were paid, we were vacationing with friends and the topic of children came up. I explained our options, the financial cost and mine and Dusty's conundrum. We so badly wanted children but the adoption process was so complicated and overwhelming. It took some people 3 years to get a child, with heartache, high costs and, in a lot of cases, heartache from failed adoption attempts. It was so simple in theory: we wanted a child and had love to give; there were children who needed homes. But the process was so complicated! I explained the option of retrieving eggs and using a gestational carrier which Dusty was indifferent to at the time. My friend announced she would gladly carry a child for us and that moment awoke a tiny spark of hope.
I talked with Dusty about the idea when we returned from vacation. I explained that the cost was similar to adoption but that we had a chance at having our own baby, something of which we'd always dreamed. And to my surprise, he was intrigued.
One thing I know for sure is that I've been blessed with amazing friends. My friends are my salvation from all of the hardships I've experienced in life. My friends were there when I lay in the hospital and have been changed just like I at the truth that life is fleeting. Sometimes you have to lose something, or almost lose something to truly appreciate it. We all learned that lesson from my illness. I have a newfound appreciation for my life and everything in it. And I am so grateful for all the wonderful friendships I've forged over the years.
The friend I was vacationing with wasn't the first friend to volunteer to carry our child. One of my very close friends, who I've known for over 20 years had mentioned it the prior year, right after I left the hospital. At the time I wasn't ready for the journey but I knew that it was time to revisit the option.
I asked my friend while we were away on a girls weekend in Nashville, Tennesee. Most importantly, I asked her if her husband supported her. To my surprise and elation, she'd already talked to her husband and mother about carrying our child. She had full support. You see, this friend of ours is very special. She has three beautiful children of her own and felt that carrying my child would be a joy and a blessing. Her husband grew up with my husband and her parents are close friends of my in-laws. They all share mine and Dusty's hope of having a family. These types of blessing don't come along everyday. For the first time since that start of our journey, my heart was full of hope.
Saturday, December 13, 2014
Monday, August 25, 2014
Gestational Carrier Journey: Pulmonary Emboli 2007
As soon as ITP was in my rearview, besides regaining my strength, getting answers to my fertility was at the top of my agenda. Although Dr. Williams didn't encourage a pregnancy, he did say he would support me if I explored a Gestational Carrier.
Dr. Williams had been my Hematologist for 5 years prior to the ITP, life changing moment. He is very quick to remind me every time he sees me that he almost lost me. To understand why I didn't immediately post a classified ad on Craigslist for a Gestational Carrier, you have to understand my history with coagulation.
Rewind 5 years:
I'm 24 and undergoing a routine cholecystectomy (gallbladder removal). The nurses are telling me in pre-op that I'm the perfect surgery candidate. I don't smoke and I'm a healthy 24 year-old with no prior surgeries or complications. However, as soon as I wake from surgery, my instincts told me something was wrong. The nurses give me more morphine and knock me out. I couldn't breathe. I wake up again in a panic. I wanted my family. I was scared. They nurses tell me "not until you calm down."
After I finally started breathing on my own and got to see my mother and husband, I lost it. I started crying and hyperventilated. I'm certain my reaction scared the $h!& out of Dusty. My mother came home with us and we all slept in the living room that first night because I was terrified. I didn't feel right. I didn't know how I should have felt, but I was afraid if I went to sleep, I wouldn't wake up.
I did wake up. A few days later, while reaching for oatmeal in the pantry on my tippy toes, I pulled a muscle in my calf. At least, I thought. My calf was tight and sore the rest of the week. I tried to walk the neighborhood. Tried being the emphasis. I could barely make it one lap at a snail's pace and getting up and down the stairs at home was a daily battle. Still, I was scheduled to go back to work the next week, so I was trying to regain my strength. I thought that what I was experiencing was normal. So when I went for my 1 week follow-up and mentioned the fact that I was a little short of breath as an afterthought, the surgeon insisted I get a CT scan as a precaution. He said that shortness of breath could be a symptom of a life threatening condition.
My husband and I went down for the X-ray and I was panicking. Waiting for the results, Dusty assured me that I would be fine. When the surgeon appeared he said he had to admit me immediately because I had multiple pulmonary emboli in both lungs.
I was admitted to the hospital and was introduced to a confident, charismatic man with a wit uncharacteristic of most doctors I've met, Dr. Williams. He administered Heparin, a very strong blood thinner via IV. I stayed in the hospital for a week before I was released to go home. At home, I administered Lovenox (a blood thinner) via injections into my stomach twice daily. Then I started to take a warfarin (an oral blood thinner).
There's not a moment when you know blood clots dissolve. I couldn't feel them. That charlie horse? Turns out it was a DVT (deep vein thrombosis). That DVT broke free and traveled to my lungs to form the pulmonary emboli. I didn't feel bad. I didn't hurt. The shortness of breath was my only symptom.
The only way to verify if you have blood clots (or they've dissolved) is to have a CT with contrast and doctors don't tend to continually run you through radiation to check. After all, radiation is bad. Instead, they check your blood for Prothrombin time (Protime, PT), which is a blood test that measures how long it takes blood to clot. A PT is also used to check whether medicine to prevent blood clots is working. A PT test may also be called an INR test. The doctors and nurses wanted my blood to be therapeutic, which results in an INR between 2 and 3. If results come back outside of that range, the blood is either too thick or too thin.
I remained on warfarin for a year following surgery. During my routine checkups with Dr. Williams, we would talk about my condition and the future. At that time, Dr. Williams told me if I were to get pregnant, I would have to give myself Lovenox injections twice daily for the entire 9 months. He explained that once you have a history of pulmonary emboli, which is a life threatening complication, you have a greater risk of recurring blood clots that can lead to more pulmonary emboli. Awesome. All of the hormones pregnancy introduces combined with the abdominal strain would make me high risk for clotting. He, however, encouraged me. He talked about all of his other patients just like me who had delivered healthy babies and had taken Lovenox their entire pregnancy. He sensed my trepidation. And he promised me that together we could keep me safe during a pregnancy. You could say that Dr. Williams encourages and promotes babies. And during that year under his care, he tried to alleviate my fears.
Back to 2012:
Surgery and anesthesia scare the bejesus out of me. I've undergone 2 major surgeries in my life: a cholecystectomy and a splenectomy (spleen removal). In both cases, I developed pulmonary emboli. For this reason, I will always require anticoagulation therapy. You can't, however, take anticoagulants during surgery. Thin blood + surgery = a bloody mess. In fact, something Dr. Williams brags about, is that I was the first surgery patient to receive the obscure NovoSeven during my splenectomy at Norton Suburban. NovoSeven was first used in 1999 to treat a wounded Israeli soldier in Tel Aviv and thereafter to treat soldiers who were casualties of of grenades. Major.
Despite all of Dr. William's encouragement five years earlier, the tables have turned. What he thought was an isolated event ended up being an underlying blood disorder that was undetected. Pregnancy has been removed from the agenda, but being the extremely optimistic, baby promoting doctor that he is, Dr. Williams is encouraging egg harvesting and retrieval. At the time, I wasn't 100% up to the challenge and risks, being that I'd just busted out of the ICU.
I did, however, take the referral to visit the fertility specialist recommended to me.
Friday, August 15, 2014
Gestational Carrier Journey: Group Therapy
When I was released from the hospital, I never stayed away for long. I had follow-up visits and check-ups with specialists weekly. The healthier I became and the more progress I made, the less frequent the visits became. One visit I particularly never looked forward to was with the Behavioral Oncologist.
Not that I'm opposed to talking to someone, but I've never found talking to anyone other than my friends or family helpful. I went into these visits optimistic. I really hoped to get comfort, find a connection or feel enlightened in some way, but it just never happened.
One day, my doctor announced that she had a great idea. She had a few patients, like myself, who were dealing with infertility, and she thought bringing us together for a group session would be beneficial. I immediately wanted to run. However, being put on the spot, I think I instead said something like, "suuuurre....."
Secretly, I hoped that it would never work out. I figured that arranging all of our schedules would pose too difficult. Or I could conveniently have a "prior engagement." Much to my surprise, however, 6 weeks later when I walked into her office, there was another woman in the room. Fiddlesticks.
This woman was similar in age to me and she had cancer. She hadn't been married as long as me and had found out she had cancer after she was married. And then found out she couldn't have children. I could definitely relate. She was also having a difficult time dealing with the the fact that she wouldn't be able to provide children for her husband. And at this time, it didn't seem as though they were exploring other options.
This was something to which I didn't relate. As soon as the doctors said it was risky for me to have children, my husband said we would adopt. Without hesitation and without a blink of an eye. I guess I take for granted how strong our bond is, how much he cares for me, and how in sync we are with our family planning. We will have a family. And where there's a will, we'll find a way.
When the doctor would attempt to bring me into the conversation, I would feel guilty for having a healthy relationship with my husband and his full support. I really didn't want to say much. She was trying to force things out of me. My only response was something along the lines of: "the doctors don't advise me to have children but we've accepted it. We'll adopt. I'm really just happy to be alive; I could have died. I'm trying to focus on life right now. Once the doctors have all the answers and we know what we're dealing with, we'll make sure that they don't change their stance. If they still advise against pregnancy, we'll take the next steps when we're ready."
The other woman in the room did not have the same outlook. She talked about her sister-in-law who'd just revealed her pregnancy. She was angry with her. She felt that it was wrong that her sister-in-law didn't take her feelings into account knowing she couldn't have children. Her voice rose the more she talked. The doctor asked if she needed to increase her medication. I felt like I was violating doctor/patient confidentiality, even though we'd both agreed to this. I was tricked! I didn't want to be there! She talked about her anxiety and anger. She talked about how upset she got when she saw babies that sometimes she wanted to punch them. Hold up. Rewind. Red flag! Now, I assume this was a (poor) attempt at humor, but, punching babies? Really? Get. me. out. of. there!
Again, I felt guilty for not sharing the same feelings as this sad, angry woman. I had sympathy for her but I didn't share her feelings or respond to life or the lemons thrown my way similarly. In fact, my best friend had just given birth to her second child and I was thrilled I was able to be at the hospital when her son was born. Sure, there may have been a tiny voice of doubt, wondering, "will this ever happen for me?" But that is exactly what the Chaplain had prayed with me about. Her message, forever emblazoned on my wrist: don't look left; don't look right; look straight ahead.
Now, let me be the first to say, I'm no Saint. And I'm not judging the woman that was in that room with me. If anything, I was confused as to why I was there. She was distressed and needed to talk with her doctor. I'm not going to say it's easy to stay positive. It's something I work at every day. Every. Single. Day. I'm an inherently pessimistic person who's realized that being pessimistic is draining. I try to think positive. I wish it came natural to me but it doesn't. I'm also inherently anxious. Once I accepted this, and learned to deal with my anxiety, thinking positive has gotten easier.
Another thing that is unique about me is my perseverance. I've been forced to face adversity my whole life. You name it, and I've probably encountered it. When I was younger and less mature, I didn't deal with obstacles or disappointments in life well. I'm very sensitive. I remember crying for hours. But what did that change? Nothing. Feeling sorry for myself changed nothing. Worrying changed nothing. I've matured and realized that the quicker I accept the things I can't change, the happier I'll be. Isn't that a line from the Lord's Prayer? : ) Lord, grant me the serenity to accept the things I cannot change.
I hope that woman accepts her fate and finds some peace.
Needless to say, I no longer see the Behavioral Oncologist.
Not that I'm opposed to talking to someone, but I've never found talking to anyone other than my friends or family helpful. I went into these visits optimistic. I really hoped to get comfort, find a connection or feel enlightened in some way, but it just never happened.
One day, my doctor announced that she had a great idea. She had a few patients, like myself, who were dealing with infertility, and she thought bringing us together for a group session would be beneficial. I immediately wanted to run. However, being put on the spot, I think I instead said something like, "suuuurre....."
Secretly, I hoped that it would never work out. I figured that arranging all of our schedules would pose too difficult. Or I could conveniently have a "prior engagement." Much to my surprise, however, 6 weeks later when I walked into her office, there was another woman in the room. Fiddlesticks.
This woman was similar in age to me and she had cancer. She hadn't been married as long as me and had found out she had cancer after she was married. And then found out she couldn't have children. I could definitely relate. She was also having a difficult time dealing with the the fact that she wouldn't be able to provide children for her husband. And at this time, it didn't seem as though they were exploring other options.
This was something to which I didn't relate. As soon as the doctors said it was risky for me to have children, my husband said we would adopt. Without hesitation and without a blink of an eye. I guess I take for granted how strong our bond is, how much he cares for me, and how in sync we are with our family planning. We will have a family. And where there's a will, we'll find a way.
When the doctor would attempt to bring me into the conversation, I would feel guilty for having a healthy relationship with my husband and his full support. I really didn't want to say much. She was trying to force things out of me. My only response was something along the lines of: "the doctors don't advise me to have children but we've accepted it. We'll adopt. I'm really just happy to be alive; I could have died. I'm trying to focus on life right now. Once the doctors have all the answers and we know what we're dealing with, we'll make sure that they don't change their stance. If they still advise against pregnancy, we'll take the next steps when we're ready."
The other woman in the room did not have the same outlook. She talked about her sister-in-law who'd just revealed her pregnancy. She was angry with her. She felt that it was wrong that her sister-in-law didn't take her feelings into account knowing she couldn't have children. Her voice rose the more she talked. The doctor asked if she needed to increase her medication. I felt like I was violating doctor/patient confidentiality, even though we'd both agreed to this. I was tricked! I didn't want to be there! She talked about her anxiety and anger. She talked about how upset she got when she saw babies that sometimes she wanted to punch them. Hold up. Rewind. Red flag! Now, I assume this was a (poor) attempt at humor, but, punching babies? Really? Get. me. out. of. there!
Again, I felt guilty for not sharing the same feelings as this sad, angry woman. I had sympathy for her but I didn't share her feelings or respond to life or the lemons thrown my way similarly. In fact, my best friend had just given birth to her second child and I was thrilled I was able to be at the hospital when her son was born. Sure, there may have been a tiny voice of doubt, wondering, "will this ever happen for me?" But that is exactly what the Chaplain had prayed with me about. Her message, forever emblazoned on my wrist: don't look left; don't look right; look straight ahead.
Now, let me be the first to say, I'm no Saint. And I'm not judging the woman that was in that room with me. If anything, I was confused as to why I was there. She was distressed and needed to talk with her doctor. I'm not going to say it's easy to stay positive. It's something I work at every day. Every. Single. Day. I'm an inherently pessimistic person who's realized that being pessimistic is draining. I try to think positive. I wish it came natural to me but it doesn't. I'm also inherently anxious. Once I accepted this, and learned to deal with my anxiety, thinking positive has gotten easier.
Another thing that is unique about me is my perseverance. I've been forced to face adversity my whole life. You name it, and I've probably encountered it. When I was younger and less mature, I didn't deal with obstacles or disappointments in life well. I'm very sensitive. I remember crying for hours. But what did that change? Nothing. Feeling sorry for myself changed nothing. Worrying changed nothing. I've matured and realized that the quicker I accept the things I can't change, the happier I'll be. Isn't that a line from the Lord's Prayer? : ) Lord, grant me the serenity to accept the things I cannot change.
I hope that woman accepts her fate and finds some peace.
Needless to say, I no longer see the Behavioral Oncologist.
Monday, August 11, 2014
Gestational Carrier Journey: ITP 2012
Hello everyone! Welcome to my blog.This is my very first post and it is about my journey with a Gestational Carrier. This is quite a long story that I will have to tell in parts. The following is the backstory.
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.
When I was 29 and my husband 31, the stage was set, all of our ducks were in a row (at least we thought) and we started attempting to get pregnant. 6 months later I was in the hospital fighting for my life.
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.
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. : )
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.
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.
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.
 |
| 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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