Something I forgot in the last post that my mom reminded me of... When the nurse was pushing in the bone marrow she was pushing SO hard. And my central line was pushing back hard, too. Finally, there was so much pressure the huge syringe cracked. Marrow spewed up into the air and splattered across the ceiling, onto me, and onto my bed! The nurse stood there in shock. They apologized profusely and said that had never happened before. We just laughed and laughed. It was hilarious! But now back to the story...
Vomiting. Oh so much vomiting. But also hair. Little bits of hair. It was slowly falling out. Every morning I would wake up and find strands of my hair all over the pillow. I had it cut to my shoulders right before I got the transplant in order to donate it to Locks of Love. So at least it was short strands! But after only a few nights of this, I was like "Get this shit off my head". I had had enough.
Now I thought this was going to be an exciting experience! I wanted to make a party out of it! So I was going to have Mercedes buzz off my hair while my parents and sisters (Carina and Brandan over iChat) watched and cheered on. Of course, they humored me. I had the "I'm sick so I get what I want" powers. So Mercedes happily shaved my head as everyone smiled and nodded along with me. It wasn't until years later that I found out that it was kind of a horrible experience for Merce! I had no idea! I mean, of course she wouldn't like shaving off her little sister's hair. She did it for me, but I don't think she enjoyed it which is completely understandable.
So around Day 10 (10 days after getting the transplant, 20 days in the hospital including the pre-transplant chemo), I started going "Hey!... Hey docs!... Hey docs let me out of here!". I was ready to get out of my confinement chambers. 20 days in one room (with marrow on the ceiling!). I wasn't allowed leave it since I had no immune system and could catch whatever little bug was floating around. I was clawing at the walls! Around Day 13 they said "soon". The next day "really soon". Finally, on Day 15, they said I could go! I was so excited. Not only was I going to be released to go home to Mercedes' house, but I also had the record for quickest release from the hospital after a BMT. The next best was 18 days. And I shattered that record! Most people have to stay about 30 days post transplant at least. I think I may be too competitive. But that's okay because I won! :)
So here's Mercedes again... I figured I put her through shaving my hair off so I should at least let her talk about it!
There are few things more difficult for me than shaving my sister's head. For anyone who knows gena, she is absolutely stunning, and she had the most beautiful hair before her transplant (it has since grown back, thank goodness!). Watching her lose it in small clumps was painful to see, but when she asked me to shave her head, I felt like I'd been stabbed in the gut. I understood her motives to just get it over with, but I felt like I was stripping her of her femininity and more importantly, her identity. As a doctor, I see lots of people with bald heads from various chemo treatments, and to be honest they often look very similar. I did not want my sister to fall into that category in my head, and I think shaving her made me see her in a different light- a little less like a sister, more like a patient. I think this also forced me to realize how sick she really was. Gena has an uncanny ability to present herself as less ill than she truly is, whether its her incredible pain tolerance, determination, or unflagging optimism. And I think my family would go along with it, because we really really wanted to believe that she wasn't as sick as she really was. And for me, shaving her head removed one of her layers of defense, making her seem more vulnerable.
Furthermore, with a platelet count of zero, I was terrified of nicking her and causing her to bleed! Luckily it turns out they are smarter than that and only let you use a "safe" razor that was less likely to cut her. Phew.
On the upside, if anyone can pull off bald, it is Genevieve. She of course looked beautiful and handled the transformation with more grace and dignity than anyone else I know.
Sunday, April 13, 2014
Sunday, April 6, 2014
Day Zero and a Guest Blogger
Day zero!!! Transplant day!! WOOHOOO!! I was going to be cured and I was excited.
Mercedes was admitted to the hospital. She was going to be put to sleep, have her bone marrow removed from the back of her pelvis bone, and save my life. I hugged her and wished her luck before she left to go get it done. I waited and waited until about noon when the nurse came in with bags and bags of what looked like blood (but was actually bone marrow). They hooked the bag up to my central line and put it on a hanger. It wasn't on any type of a pump because they wanted to let gravity do it's thing and let it go into me at a natural pace.
But gravity wasn't working and so after a few hours of it hanging the bone marrow was going to "spoil" if they didn't get it into me. So to get the last few bags into me, they brought in these GIANT syringes to physically push it into my central line. And by giant I mean a foot long and 3 inches wide. HUGE. I think I had about 7 or 8 of those syringes to get in to me in one hour. So the poor nurse got her work out in. I think the funniest part was that when she was pushing it in, I could taste it. Now most people would think that was really gross. But Mercedes' bone marrow tasted of cream corn and bacon. So I was not too upset about. I got all of my bone marrow and was on my way to a health. Kinda.
So back up a few hours. After I had first gotten the bone marrow, I kept asking about Mercedes and if she was awake yet. How was she doing? Finally after about an hour and a half my mom came in looking kind of upset. She sat down next to me and told me not too get upset and that everything was okay. Immediately I panicked. What was wrong with her? What did they do??
My mom told me that when Mercedes woke up, she began vomiting blood. She said it was because when they inserted the breathing tube, it nicked the side of Mercedes' esophagus or stomach or something causing blood to drain into her stomach. I began to cry. How could they have messed up like that? She was doing an amazing thing for me and they made it that much harder. And the worst part was they took copious amounts of bone marrow because they had "the more, the better" mentality. So not only did she lose tons of blood from the bone marrow, but she lost tons from it was draining into her stomach. She was beyond anemic.
I wanted to go see her. Of course, they wouldn't let me leave my room because I had no immune system. My next solution was to just move her bed into my room, but they wouldn't let me do that either. I hated it. She was saving my life. I wanted it to be as easy as possible for her to undergo, but instead it became a debacle. And she felt so awful. I mean- she had no blood!
She was released late that day (even though she shouldn’t have been, but she’s stubborn and demanded to be released) and she was on bed rest because she was so weak. I finally saw her in person a few days after she had been released and she looked pale and tired- and that was after she had somewhat recovered. She had horrible lower back pain because they went into her pelvis about 40 times (with their giant needles). Her throat and esophagus were raw from the tubes and she was exhausted.
So Mercedes- I'm so sorry you had to go through that. Even writing this it makes me cry. But thank you for saving my life. Thank you for everything that you have done and continue to do for me. I don't think I say that enough. And I love that I will always have a part of you with me.
And now something new. I'm going to let Mercedes describe her experience with what happened. I think every once in a while it will be good to get another person's view.
Mercedes was admitted to the hospital. She was going to be put to sleep, have her bone marrow removed from the back of her pelvis bone, and save my life. I hugged her and wished her luck before she left to go get it done. I waited and waited until about noon when the nurse came in with bags and bags of what looked like blood (but was actually bone marrow). They hooked the bag up to my central line and put it on a hanger. It wasn't on any type of a pump because they wanted to let gravity do it's thing and let it go into me at a natural pace.
But gravity wasn't working and so after a few hours of it hanging the bone marrow was going to "spoil" if they didn't get it into me. So to get the last few bags into me, they brought in these GIANT syringes to physically push it into my central line. And by giant I mean a foot long and 3 inches wide. HUGE. I think I had about 7 or 8 of those syringes to get in to me in one hour. So the poor nurse got her work out in. I think the funniest part was that when she was pushing it in, I could taste it. Now most people would think that was really gross. But Mercedes' bone marrow tasted of cream corn and bacon. So I was not too upset about. I got all of my bone marrow and was on my way to a health. Kinda.
So back up a few hours. After I had first gotten the bone marrow, I kept asking about Mercedes and if she was awake yet. How was she doing? Finally after about an hour and a half my mom came in looking kind of upset. She sat down next to me and told me not too get upset and that everything was okay. Immediately I panicked. What was wrong with her? What did they do??
My mom told me that when Mercedes woke up, she began vomiting blood. She said it was because when they inserted the breathing tube, it nicked the side of Mercedes' esophagus or stomach or something causing blood to drain into her stomach. I began to cry. How could they have messed up like that? She was doing an amazing thing for me and they made it that much harder. And the worst part was they took copious amounts of bone marrow because they had "the more, the better" mentality. So not only did she lose tons of blood from the bone marrow, but she lost tons from it was draining into her stomach. She was beyond anemic.
I wanted to go see her. Of course, they wouldn't let me leave my room because I had no immune system. My next solution was to just move her bed into my room, but they wouldn't let me do that either. I hated it. She was saving my life. I wanted it to be as easy as possible for her to undergo, but instead it became a debacle. And she felt so awful. I mean- she had no blood!
She was released late that day (even though she shouldn’t have been, but she’s stubborn and demanded to be released) and she was on bed rest because she was so weak. I finally saw her in person a few days after she had been released and she looked pale and tired- and that was after she had somewhat recovered. She had horrible lower back pain because they went into her pelvis about 40 times (with their giant needles). Her throat and esophagus were raw from the tubes and she was exhausted.
So Mercedes- I'm so sorry you had to go through that. Even writing this it makes me cry. But thank you for saving my life. Thank you for everything that you have done and continue to do for me. I don't think I say that enough. And I love that I will always have a part of you with me.
And now something new. I'm going to let Mercedes describe her experience with what happened. I think every once in a while it will be good to get another person's view.
I
am so honored to be a part of this blog post! One thing I wanted to briefly
mention was that all the Dullum sisters were tested many years ago to see who
might be a good match for Genevieve in the event that she need any donations.
Well, I remember clearly the day we were tested: at the age of 12, I walked
right into the doctor’s office and declared that I didn’t need the test because
I knew I was a perfect match. And it turned out I was right! Genevieve and I
have been so close forever, (she is always trying to be just like me) and it
only seemed natural that I would be her donor. I remember being so excited
about the “harvest day,” or what our family had labeled “D Day,” (Donor Day)
because I was finally able to actually DO something tangible for Genevieve,
rather than bumbling along trying helplessly to accompany her on this journey.
It was funny being on the other side of the table for once, when I was in the
OR and they told me to start counting back from 100. I also remember that the IV
really hurt! This gave me more respect for what Gen has to go through all the
time. She has been getting IVs for most of her life, which was something I
hadn’t thought was that big of a deal, and then the first time I had to have
one placed it was so painful! Anyway, these were my last thoughts as I drifted
off into anesthetic bliss for a few hours.
After
the harvest, there were two things that stood out to me. The first was the look
on Dave and my dad’s faces when they saw me in the recovery room. They had that
expression when you know something’s up but no one wants to talk about it. I
immediately assumed it had something to do with Gen, but eventually it came out
that I just looked really, really pale. Dave later told me how worried they had
been, but that no one had wanted to say anything to me until I was recovering
well. I overall felt fine, other than being tired and a bit nauseous. I was
then moved to the inpatient unit. The second thing I remember was how
vulnerable I felt in a hospital gown. This was yet another way I finally got a
glimpse into what Gena’s life has been like. I felt so exposed and open and
embarrassed, when really I should have been focusing on rest and recovery.
I
hated this feeling, so I demanded to be discharged the same day as the
procedure, changing the original plan of being monitored overnight. They
finally relented, and despite being weak and very nauseous, I was released that
afternoon. The Percocet they gave me, (72 tabs! Who prescribes 72 tabs for a
minor procedure??) made me feel very sick and loopy, and I only took one before
I decided on Motrin and Tylenol for the rest of the weekend. Anyway, I also
remember talking with Gena via video chat, and being very disgusted by the bag
of blood hanging from her IV pole. For some reason, despite my medical
background and having watched bone marrow aspirations as a medical student, I
had envisioned my bone marrow being thick and of more substance, with important
cellular components floating in it (this makes no practical medical sense, but
that’s still how I imagined it). Well, as Gena said, it literally looked like a
big ol’ bag of blood. I was a bit disappointed, feeling that it did not do the
job justice.
The
hardest part of the harvest for me was not being able to see Gena for a few
days. Up until that point I had visited her every day in the hospital, and it
felt foreign not to see her. I was dying to know what was going on and how she
was feeling. I guess we’ll just have to wait til the next post to find out!
Tuesday, April 1, 2014
Chemo Sucks- Like Really Sucks
Well my page has had over 1,000 views. Thank you everyone for supporting me!
So my bone marrow transplant was finally going to happen. We checked in to the oncology floor that would be a second home for the next few months. I had a room with a bed, cabinet, pull out couch, built-in desk, tv, and private bathroom. And around all of that... tons and tons of medical equipment: nurses station, heart monitors, coding equipment (which was never used!), etc. I had already had a central line put in my chest so that the IV drugs could be more easily administered. A central line is basically a huge tube that goes directly to your heart and has two ports- one for putting in IV drugs, one for drawing blood. Central lines can stay in you for months or even years at a time. Anyways, I brought my suitcases, unpacked, and settled in. I had no idea I was heading straight into a huge storm. That optimism I had was good and bad. It was bad because horrible things would happen and I never saw them coming. It was also great because I think my optimism helped me ward off the bad things that could have potentially happened. I have always believed in mind over matter.
They began my chemo treatments on August 12. My first nasty encounter happened that day. I found out that I was allergic to one of the chemo drugs. It made my veins all throughout my body feel like they were on fire for about 30 minutes to an hour. My mouth burned and my eyes stung. And they worst part? I had to receive it three times a day. The doctors had never heard of anyone having an allergy to that kind of chemo. I was the first which somehow didn't surprise us- we were used to me being medically abnormal at that point. I dreaded those doses of chemo. We prepared for it by having my parents bring ice chips to my room so that I had something cold to suck on to soothe my burning mouth. We even tried having the on hand massage therapist (yes- the hospital had a massage therapist) come to my room during one of my doses to see if it would help. But it didn't. I would just recline my bed, stare at the ceiling, and have tears trickle down my face as I laid there and endured the fire running through my body. That burning made the list one of the top 10 worst pains of my life.
After day six of 10 of chemo treatments, they tested my blood toxicity and found that I had already had too much chemo. It was something about my metabolism being slow- how lovely. So for the last four days I did not receive any more chemo and I was thrilled. But it began to take it's toll. After about day seven, I was throwing up every few hours. I didn't want any food and my body began to get a little weaker. But vomiting never bothered me. I would just say "bucket" (they wanted me to vom in a bucket to record my "ins and outs"), someone would hand it to me, I would chuck up whatever food I may have managed to have gotten down an hour ago, hand it to a nurse, and then continue what I was doing. At the beginning, I would read a lot, do Wii Fit, play board games, and surf the internet. It was definitely a tolerable process. And I was optimistic and happy. I was changing my life for the better and I knew that whatever pain I suffered would be worth it in the end.
Finally we got to what was called Day 0 on August 22nd. It was like a countdown. Day 0 was when I finally got my transplant. But even that didn't go as planned...
So my bone marrow transplant was finally going to happen. We checked in to the oncology floor that would be a second home for the next few months. I had a room with a bed, cabinet, pull out couch, built-in desk, tv, and private bathroom. And around all of that... tons and tons of medical equipment: nurses station, heart monitors, coding equipment (which was never used!), etc. I had already had a central line put in my chest so that the IV drugs could be more easily administered. A central line is basically a huge tube that goes directly to your heart and has two ports- one for putting in IV drugs, one for drawing blood. Central lines can stay in you for months or even years at a time. Anyways, I brought my suitcases, unpacked, and settled in. I had no idea I was heading straight into a huge storm. That optimism I had was good and bad. It was bad because horrible things would happen and I never saw them coming. It was also great because I think my optimism helped me ward off the bad things that could have potentially happened. I have always believed in mind over matter.
They began my chemo treatments on August 12. My first nasty encounter happened that day. I found out that I was allergic to one of the chemo drugs. It made my veins all throughout my body feel like they were on fire for about 30 minutes to an hour. My mouth burned and my eyes stung. And they worst part? I had to receive it three times a day. The doctors had never heard of anyone having an allergy to that kind of chemo. I was the first which somehow didn't surprise us- we were used to me being medically abnormal at that point. I dreaded those doses of chemo. We prepared for it by having my parents bring ice chips to my room so that I had something cold to suck on to soothe my burning mouth. We even tried having the on hand massage therapist (yes- the hospital had a massage therapist) come to my room during one of my doses to see if it would help. But it didn't. I would just recline my bed, stare at the ceiling, and have tears trickle down my face as I laid there and endured the fire running through my body. That burning made the list one of the top 10 worst pains of my life.
After day six of 10 of chemo treatments, they tested my blood toxicity and found that I had already had too much chemo. It was something about my metabolism being slow- how lovely. So for the last four days I did not receive any more chemo and I was thrilled. But it began to take it's toll. After about day seven, I was throwing up every few hours. I didn't want any food and my body began to get a little weaker. But vomiting never bothered me. I would just say "bucket" (they wanted me to vom in a bucket to record my "ins and outs"), someone would hand it to me, I would chuck up whatever food I may have managed to have gotten down an hour ago, hand it to a nurse, and then continue what I was doing. At the beginning, I would read a lot, do Wii Fit, play board games, and surf the internet. It was definitely a tolerable process. And I was optimistic and happy. I was changing my life for the better and I knew that whatever pain I suffered would be worth it in the end.
Finally we got to what was called Day 0 on August 22nd. It was like a countdown. Day 0 was when I finally got my transplant. But even that didn't go as planned...
Monday, March 31, 2014
Pre-Transplant Fun... Kinda
Before I started the transplant process, I basically had to get my whole body checked out. We did gastro, cardio, psych, etc. The gastro guy was like- "yeah- your gut sucks". Obviously we knew that. But then we found got unexpected news. The cardiologist looked at my ECG and noticed that my readings were a bit funky. They asked me if anyone ever told me I had Wolff-Parkinson-White Syndrome (WPW). NOPE. They told me that it appeared that I had an extra electrical pathway in my heart. Seriously? Oh great. Something more to deal with. They wanted me at my peak of health (or as close as I could get) before the transplant to give me the best chance of surviving. So I started undergoing extensive testing for this cardio issue.
First, they wanted to see if they could get me to have issues- yes they wanted me to have a heart issue- by making me exercise extensively. It was no fun and they couldn't get my heart to react. Finally, they told me I would have an exploratory surgery. They were going to stick I probe down my esophagus and place it next to my heart. Then the probe would try to get my heart to beat really fast which could put me into cardiac arrest if I had the disease. We all were like "you wanna do what now?!?". But they assured us that they would have a defibrillator on hand in case I did arrest and that it wasn't too dangerous. We had to do it if I was going to get the transplant so we agreed. I was put under and woke up a few hours later. They told me everything was good and that while I did have an extra electrical pathway in my heart, it did not lead to anywhere significant and I would not have any heart problems. So that was a relief.
However, I hear that after I woke up, I was quite the handful. The drug they gave me put me in more of a "twilight" (that's their word for it) instead of a full anesthetic sleep. The doctors said that usually for girls it makes them weepy and for boys it makes them aggressive. Well guess what I did? I got FIESTY. I apparently was very demanding and short with everyone. I even yelled at my dad at one point. For those of you who know my family- just imagine me yelling at my dad. And everyone just sat there and took my demands and abuse apparently. I don't remember any of this and still believe to this day that I am a perfect angel... Hahaha.
After that we met with the main team of doctors and head nurses that would be in charge of my care during the transplant. Unfortunately we had to meet during my high school graduation. So as of now- I haven't walked a stage. That was disappointing for me. The team of medical personnel included the transplant goddess- Dr. Filipovich. I know that without her sage recommendations I would not be alive today. They told me the bare minimum of what was going to happen to me because I think they didn't want to scare me. Here's some of what they said (but in my words):
I would get a shit ton of chemo for 10 days straight and then have to stay in isolation because I would literally have no immune system. On the 10th day I would receive my sister's (Mercedes') bone marrow. Then I would recover in isolation for as long as it took- usually about 30 days. I would have to be very careful not to come in contact with any public because if I contracted any illness I could possibly die. Etc. etc. etc. My first questions after their spiel: Will I lose my hair? YUP. Are there any other things I should expect? Most patients get horrible mouth sores. I have no idea why. They just do. Finally, the doctors told me that we would begin on August 12, eleven days after my 18th birthday. So that was that. And the real journey begins.
PS- I redid the email subscription. It is at the top of the page. Please re-subscribe if you have done it before. I hope that it works this time!
PPS- I love seeing your comments! Whether they're reminiscent, encouraging, or even sad- it is nice to know that I'm not alone in this. It always brings a smile to my face (and sometimes a tear to my eye) to know you all care! :)
First, they wanted to see if they could get me to have issues- yes they wanted me to have a heart issue- by making me exercise extensively. It was no fun and they couldn't get my heart to react. Finally, they told me I would have an exploratory surgery. They were going to stick I probe down my esophagus and place it next to my heart. Then the probe would try to get my heart to beat really fast which could put me into cardiac arrest if I had the disease. We all were like "you wanna do what now?!?". But they assured us that they would have a defibrillator on hand in case I did arrest and that it wasn't too dangerous. We had to do it if I was going to get the transplant so we agreed. I was put under and woke up a few hours later. They told me everything was good and that while I did have an extra electrical pathway in my heart, it did not lead to anywhere significant and I would not have any heart problems. So that was a relief.
However, I hear that after I woke up, I was quite the handful. The drug they gave me put me in more of a "twilight" (that's their word for it) instead of a full anesthetic sleep. The doctors said that usually for girls it makes them weepy and for boys it makes them aggressive. Well guess what I did? I got FIESTY. I apparently was very demanding and short with everyone. I even yelled at my dad at one point. For those of you who know my family- just imagine me yelling at my dad. And everyone just sat there and took my demands and abuse apparently. I don't remember any of this and still believe to this day that I am a perfect angel... Hahaha.
After that we met with the main team of doctors and head nurses that would be in charge of my care during the transplant. Unfortunately we had to meet during my high school graduation. So as of now- I haven't walked a stage. That was disappointing for me. The team of medical personnel included the transplant goddess- Dr. Filipovich. I know that without her sage recommendations I would not be alive today. They told me the bare minimum of what was going to happen to me because I think they didn't want to scare me. Here's some of what they said (but in my words):
I would get a shit ton of chemo for 10 days straight and then have to stay in isolation because I would literally have no immune system. On the 10th day I would receive my sister's (Mercedes') bone marrow. Then I would recover in isolation for as long as it took- usually about 30 days. I would have to be very careful not to come in contact with any public because if I contracted any illness I could possibly die. Etc. etc. etc. My first questions after their spiel: Will I lose my hair? YUP. Are there any other things I should expect? Most patients get horrible mouth sores. I have no idea why. They just do. Finally, the doctors told me that we would begin on August 12, eleven days after my 18th birthday. So that was that. And the real journey begins.
PS- I redid the email subscription. It is at the top of the page. Please re-subscribe if you have done it before. I hope that it works this time!
PPS- I love seeing your comments! Whether they're reminiscent, encouraging, or even sad- it is nice to know that I'm not alone in this. It always brings a smile to my face (and sometimes a tear to my eye) to know you all care! :)
Monday, March 24, 2014
The End Date and Fate
I think I was going to just a regular check up at NIH. I don't remember there be anything out of the ordinary. But during that visit everything changed. I was 17. It was the middle of my senior year in high school. My doctor, Dr. Holland, sat down with my parents and myself in a private room. I don't even remember how he said it. But what I do know is that he told me that I needed to consider a bone marrow transplant because if I didn't get one, I was at risk of getting an infection and dying- probably within the next two years. My life had an end date.
The usual response would be tears. And maybe I did cry- I don't remember. But I was also excited. If I got a BMT (this will be my abbreviation for bone marrow transplant from now on), that meant I would be cured. I wouldn't have to worry about infections all the time, about remembering to take my pills, about avoiding mold and fungus. We had known that a BMT was an option, but I was never sick enough to warrant one. But now I was. So our next question was "where?"
We asked trustworthy Dr. Holland at NIH. He had been treating me since I was five and he was like family to us. He said that if it were his daughter that needed a transplant, he would take her to either Duke or Cincinnati Children's Hospital. So we thought about it. In the meantime, we also started getting my sisters tested to see who was the best match to be my donor. It was amazing that they were all so willing to do that for me. And it turned out Mercedes was my best match. At the time, she was finishing up med school and starting her medical internship search with her boyfriend (now husband) Dave.
Eventually my parents and I decided that Cincinnati was the best option. And within a week Mercedes and Dave were matched to a hospital for their internship... It was Cincinnati Children's Hospital. That's when we knew it was truly meant to be. It could not have been any other way. Or in my words- so crazy!! It's like it was a sign that this was going to happen and I was going to be okay.
That was in March of 2008. Between then and when I got my transplant that August, I was on an emotional roller coaster. I specifically remember just walking out of the choir room and sitting on the ground crying just because the thought was overwhelming. Also, I was getting sicker. I had to drop out of the high school musical. It was a minute thing, but it meant a lot to me. I got thinner and a bit weaker. But everyone was there with me- excited and terrified.
The usual response would be tears. And maybe I did cry- I don't remember. But I was also excited. If I got a BMT (this will be my abbreviation for bone marrow transplant from now on), that meant I would be cured. I wouldn't have to worry about infections all the time, about remembering to take my pills, about avoiding mold and fungus. We had known that a BMT was an option, but I was never sick enough to warrant one. But now I was. So our next question was "where?"
We asked trustworthy Dr. Holland at NIH. He had been treating me since I was five and he was like family to us. He said that if it were his daughter that needed a transplant, he would take her to either Duke or Cincinnati Children's Hospital. So we thought about it. In the meantime, we also started getting my sisters tested to see who was the best match to be my donor. It was amazing that they were all so willing to do that for me. And it turned out Mercedes was my best match. At the time, she was finishing up med school and starting her medical internship search with her boyfriend (now husband) Dave.
Eventually my parents and I decided that Cincinnati was the best option. And within a week Mercedes and Dave were matched to a hospital for their internship... It was Cincinnati Children's Hospital. That's when we knew it was truly meant to be. It could not have been any other way. Or in my words- so crazy!! It's like it was a sign that this was going to happen and I was going to be okay.
That was in March of 2008. Between then and when I got my transplant that August, I was on an emotional roller coaster. I specifically remember just walking out of the choir room and sitting on the ground crying just because the thought was overwhelming. Also, I was getting sicker. I had to drop out of the high school musical. It was a minute thing, but it meant a lot to me. I got thinner and a bit weaker. But everyone was there with me- excited and terrified.
Thursday, March 20, 2014
The First Hospital Stays
After I was diagnosed with IBS, it slowly got worse. It wasn't unmanageable, but it eventually was labelled as colitis- a worse form of IBS. Then, when I was 15, everything took a turn for the worse. I had begun to have incapacitating pain in my abdomen every once in a while- it felt like I was trying to digest a knife. When I would go to the bathroom, blood would always come out. Finally, I got an infection. It ranked in the top ten most painful things in my life. I could barely walk. I was hospitalized for at least two weeks. They had to do an exploratory surgery and put me on intense IV antibiotics. The surgeon said that on a scale of 1 to 10, I was an 11. He said he didn't know how I was even able to walk from my hospital bed to the bed to take me to surgery.
But some funny and happy stories came from it. When they went to place a PIC line (a super large IV that goes directly to the heart) in my arm, the doctor said, "I've done over 5,000 of these and never missed." Now you know he just set himself up for failure. He wanted to do my left arm so that I would still have my dominant arm completely free. I told him it was a bad idea! I told him that the veins in that arm were wimpy and small. But no. Don't listen to the patient. So he attempted to place the PIC and it didn't work. Surprise surprise! He became so flummoxed and frenzied that he had to walk out of the room to compose himself. I ruined a doctor's perfect record! Haha! I know it wasn't funny for him, but I found it (and his bit of arrogance) hilarious.
Now the happy anecdote was about how much everyone cared. My friends Loren, Cara, Amanda, and Sarah all came to visit me. They brought me balloons and all of the assignments I missed in school (okay- so maybe I didn't want those). But they cared enough to come and that meant a lot to me. Also, all of my sisters came to see me. At the time they were all in Austin. Carina had moved there with Jason. Mercedes and Brandan were in college. But they all came to see me even though their adult lives were so busy. I couldn't ask for a better family.
So that was the first infection and it finally bumped me up from having colitis to Crohn's disease- the worst of the intestinal diagnoses. To combat it they put me on a drug I had to have every four weeks through an IV. However, this drug worked by lowering your immune system response. This was not the best for me. I already had an autoimmune disease that caused my white blood cells not to work so I was already prone to infection. Consequently, infection after infection began occurring. The most memorable for me was the pneumonia I got about a year later when I was 16. My chest began to hurt more and more. Finally, while I was on a regular visit at the NIH, they took x-rays (because they always took x-rays) and found that a quarter of my left lung was covered in infection. Again, I had a hospital stay and a lot of antibiotics.
While those years were hard for me, I had support. I am always thankful for my friends in senior high. They understood that I had issues, but never asked me about them because I think they knew I would be embarrassed. I would go to lunch with Briana, Angela and Christy and often I would drive. But as we came back from lunch I would almost always get pain in my gut and then have to rush off to the bathroom. They would go so far as to drop me at the doors and then park my car for me. They just somehow understood. Once, I went to the bathroom while we were at Chipotle for lunch and they took my keys and pretended they had left me! To get back at them, some of my other friends were at also at Chipotle and hitched a ride with them. It scared them so bad and they called me wondering where I was and I told them I was already back at school. To get back at me they parked my car in the farthest lot! It was hilarious.
So this post was the beginning of the bad/sad entries. And it is not going to let up for a long time. There are always some bright spots though. But there are things you should know before reading the next post. I am one of the bravest- maybe not THE bravest- but one of the bravest people you know. I'm not saying that because I'm conceited or because I think very highly of myself. It's because to go through what I did, I had to be. Also, I think the most important part of my personality that helped me through everything was my stubbornness. When you refuse to give in, it makes it kind of hard to let yourself die. All of this may sound ridiculous to you now, but I hope later you will understand. I also hope that by writing this, maybe one day I will help someone else who has had a lot of health issues. Being this honest with the public is hard, but I think it will help me immensely to get over what has happened, it will help everyone who knows me to understand me better, and maybe it will help someone else one day.
But some funny and happy stories came from it. When they went to place a PIC line (a super large IV that goes directly to the heart) in my arm, the doctor said, "I've done over 5,000 of these and never missed." Now you know he just set himself up for failure. He wanted to do my left arm so that I would still have my dominant arm completely free. I told him it was a bad idea! I told him that the veins in that arm were wimpy and small. But no. Don't listen to the patient. So he attempted to place the PIC and it didn't work. Surprise surprise! He became so flummoxed and frenzied that he had to walk out of the room to compose himself. I ruined a doctor's perfect record! Haha! I know it wasn't funny for him, but I found it (and his bit of arrogance) hilarious.
Now the happy anecdote was about how much everyone cared. My friends Loren, Cara, Amanda, and Sarah all came to visit me. They brought me balloons and all of the assignments I missed in school (okay- so maybe I didn't want those). But they cared enough to come and that meant a lot to me. Also, all of my sisters came to see me. At the time they were all in Austin. Carina had moved there with Jason. Mercedes and Brandan were in college. But they all came to see me even though their adult lives were so busy. I couldn't ask for a better family.
So that was the first infection and it finally bumped me up from having colitis to Crohn's disease- the worst of the intestinal diagnoses. To combat it they put me on a drug I had to have every four weeks through an IV. However, this drug worked by lowering your immune system response. This was not the best for me. I already had an autoimmune disease that caused my white blood cells not to work so I was already prone to infection. Consequently, infection after infection began occurring. The most memorable for me was the pneumonia I got about a year later when I was 16. My chest began to hurt more and more. Finally, while I was on a regular visit at the NIH, they took x-rays (because they always took x-rays) and found that a quarter of my left lung was covered in infection. Again, I had a hospital stay and a lot of antibiotics.
While those years were hard for me, I had support. I am always thankful for my friends in senior high. They understood that I had issues, but never asked me about them because I think they knew I would be embarrassed. I would go to lunch with Briana, Angela and Christy and often I would drive. But as we came back from lunch I would almost always get pain in my gut and then have to rush off to the bathroom. They would go so far as to drop me at the doors and then park my car for me. They just somehow understood. Once, I went to the bathroom while we were at Chipotle for lunch and they took my keys and pretended they had left me! To get back at them, some of my other friends were at also at Chipotle and hitched a ride with them. It scared them so bad and they called me wondering where I was and I told them I was already back at school. To get back at me they parked my car in the farthest lot! It was hilarious.
So this post was the beginning of the bad/sad entries. And it is not going to let up for a long time. There are always some bright spots though. But there are things you should know before reading the next post. I am one of the bravest- maybe not THE bravest- but one of the bravest people you know. I'm not saying that because I'm conceited or because I think very highly of myself. It's because to go through what I did, I had to be. Also, I think the most important part of my personality that helped me through everything was my stubbornness. When you refuse to give in, it makes it kind of hard to let yourself die. All of this may sound ridiculous to you now, but I hope later you will understand. I also hope that by writing this, maybe one day I will help someone else who has had a lot of health issues. Being this honest with the public is hard, but I think it will help me immensely to get over what has happened, it will help everyone who knows me to understand me better, and maybe it will help someone else one day.
Monday, March 17, 2014
Tummy Troubles and Weddings
I was going to start this by saying I'm sorry I hadn't posted in a while, but I have been busy. But I was on spring break and I had the time. I think that I'm just nervous to start the next section. It gets a lot more uncomfortable and personal. So if you choose to keep reading, then you're going to learn a lot that you may not want to know about me.
When I was 10, I started developing IBS. For those that don't know, IBS is where you have intestinal and colon issues and you have to use the bathroom a lot. Like A LOT. Your insides can get irritated easily and that irritation can cause pain and bleeding. I had my first flare up and my doctors started me on steroids. The steroids caused me to get round in the face and a bit chubby. However, that was better then the alternative. Before, I was ridiculously thin because my intestines wouldn't absorb any of the food I ate. I was a walking stick. Some of my friends would joke that if I turned to the side, I would disappear. But the steroids weren't good either. You eat a lot, you have horrible moods, you become hyper, you can't sleep. Luckily, I don't think it was too bad for me when I was that young, but it definitely had its effects later.
At the time, my oldest sister, Carina, was engaged to be married. She and her husband, Jason, got married when I was 11. It was a beautiful wedding even though I don't remember it too well since I was so young. Of course, during it I was in the middle of a high dose of steroids. And that was the first wedding that I had been a part of (as a flower girl) and it began the precedent of me never looking "normal" in any wedding I've been in. Of course, I know that the weddings are in no way about me, but I think I will always be a little sad that in all of my sister's and cousin's wedding pictures, I never look like what I want to. I feel embarrassed to look at them and even more embarrassed to be so selfish. Even as I'm writing this I feel myself wanting to cry. My family won't even let me look at the pictures of my cousin's wedding that happened when I was 19 because they know what it would do to me emotionally. While writing this, I hate that I'm complaining about how I looked at someone else's wedding. It's stupid and egotistical. But the brides were all magnificently beautiful and it was a wonderful day for them which is what really matters! The other weddings will surface later in the blog, but this was when I first started getting sick and what it coincided with.
When I was 10, I started developing IBS. For those that don't know, IBS is where you have intestinal and colon issues and you have to use the bathroom a lot. Like A LOT. Your insides can get irritated easily and that irritation can cause pain and bleeding. I had my first flare up and my doctors started me on steroids. The steroids caused me to get round in the face and a bit chubby. However, that was better then the alternative. Before, I was ridiculously thin because my intestines wouldn't absorb any of the food I ate. I was a walking stick. Some of my friends would joke that if I turned to the side, I would disappear. But the steroids weren't good either. You eat a lot, you have horrible moods, you become hyper, you can't sleep. Luckily, I don't think it was too bad for me when I was that young, but it definitely had its effects later.
At the time, my oldest sister, Carina, was engaged to be married. She and her husband, Jason, got married when I was 11. It was a beautiful wedding even though I don't remember it too well since I was so young. Of course, during it I was in the middle of a high dose of steroids. And that was the first wedding that I had been a part of (as a flower girl) and it began the precedent of me never looking "normal" in any wedding I've been in. Of course, I know that the weddings are in no way about me, but I think I will always be a little sad that in all of my sister's and cousin's wedding pictures, I never look like what I want to. I feel embarrassed to look at them and even more embarrassed to be so selfish. Even as I'm writing this I feel myself wanting to cry. My family won't even let me look at the pictures of my cousin's wedding that happened when I was 19 because they know what it would do to me emotionally. While writing this, I hate that I'm complaining about how I looked at someone else's wedding. It's stupid and egotistical. But the brides were all magnificently beautiful and it was a wonderful day for them which is what really matters! The other weddings will surface later in the blog, but this was when I first started getting sick and what it coincided with.
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