The Atypical HUS Foundation

First off, my name is Megan, I am a college student, a dedicated worker, a sister, a daughter, a friend, and LASTLY a patient. I do not let aHUS define me and while I acknowledge that I have it and have limitations, I also don't let it control my life. I was diagnosed the summer of my sophomore year in college, and just finished my fall semester of my junior year. I typically take 18 credits, although this semester I only took 15. However I also have three jobs on top of my frequent doctors appointments and starting my book and advocacy work for aHUS.

I'm not going to try to pretend like the whole process has been perfect because the fact is that it has been anything but easy for me. The whole journey has been a learning opportunity for me, and even though I am emotionally stable now, for about 2 months I was very depressed and did not understand why such terrible and rare things would happen to me or anyone else.

So to truly understand the magnitude of my story, let me take you back to October of 2013, because that's when this story really began. It was back in October of 2013 that I first realized that I had a mass in my back along my lower spine. Initially I wasn't sure if it was just a muscle that I was feeling, so I told my friends that if by Thanksgiving it was still hurting that I would go to the doctor. Meanwhile I had just got forced out of my dorm room and then had started two new jobs so by the time Thanksgiving had come, I was too busy to deal with anything but work and midterms. My back had began to progressively hurt worse but I ignored it all the way up to Christmas when I went to visit my parents for the holiday.

I first asked my mom where I would go for back problems, and she told me a chiropractor. I knew that an alignment was not what I needed so I described what was happening a little bit more. My mom didn't quite understand the magnitude and severity of my predicament until the day after when I told her I needed her to move so that I could get up from laying down because my back was hurting to much. We then spent the entire next day in the ER getting scans which only confirmed that there was a mass. That was my official introduction to the medical world as by february I was scheduled to have surgery to have the lipoma removed.

The day that I had had surgery on February 12th I found out that the mass that was initially only about the size of a golf ball was actually the size of a very large egg, and where my doctor believed that it was close to the skin it was actually about 6-7 down in my back pressing on my spine. He told me that initially they couldn't find the mass but right before they were about to call it, he pressed down and felt the mass.

The surgery had gone well, however the recovery was a different story. At the time I was taking 18 credits in college, had an internship that required about 8 hours of my time each week, on top of working 4 jobs. (two off campus, two on campus). I took off work for two days and by that saturday I was back at work even though I still couldn't bend over at all and was having a little bit of trouble walking.

I went through a lot of complications after the surgery included an infection. It took about two months for me to finally be back to my old self; however it wasn't long before more problems arose.

About a month after, around March/April, I was still having really bad back pain. So, I went back to my surgeon, who ordered another MRI which lead to the discovery of 3 degenerative discs in my lower to mid back.

When I first got this news, it destroyed me. I didn't know how I would be able continue to live the rest of my life with the pain that I was experiencing. So in efforts to try to figure something out, I went to see a back specialist who put me on a steroid and an anti-inflammatory medication. These helped a little bit, but soon after everything changed.

Once I was on the medication, it was only about 2-3 weeks afterwards that I began to have odd symptoms. I started to feel physically sick, which I thought was just a cold so I tried to get a little more sleep. Unfortunately sleep was not on my side due to work. At the time I was working about 60 hours a week between my two jobs -40 at one and 20 at another so often, there were days where I would start at 7am and not end my day until 12am. So when I started waking up just feeling completely exhausted I just accounted for how much I was working.

Eventually I started finding large black and blue bruises all over my body seemingly without doing anything to get them. I thought it was humorous that I could be so clumsy and unaware of doing such things to get bruises like those. However, when I started to find more every time I looked, I began to get concerned since I have never bruised easily.

I let the bruises pass for about a week, but when they didn't look like they were getting better or going away, I began to question what was happening. I asked my mom if I should be concerned and while she said I should bring it up to my doctor that I was probably just being tortured in my sleep by a ghost. We laughed but when I looked at my medications and saw "serious symptoms of easy bruising" I had an 'ahhh ha" moment.

I called my doctor the next morning to tell her about the bruising, and she asked me immediately to come in to have blood work since my platelets were a little low the last time I had blood work done (about a month prior). I went to have blood work within that day and that was the moment that I knew something was wrong

My blood was very watery and hard to draw, I've always given blood growing up and it had never looked like it did coming out; however I played it off and went to work. Once I had gotten to work I was extremely dizzy and lightheaded, but ignored it like normal. However, when my doctor called 45 minutes after getting the labs, everything took a turn for the worse. My platelets were at 50 thousand, and for those of you who do not know the values - you are in danger of bleeding out at 20 thousand.

My doctor continued to tell me that she wanted to get me in ASAP to rule out a blood disorder. That same day my doctor had set up an appointment with the only doctor who would see me on such short notice, for the next day.

After I left work that night, I felt like my whole world was crashing in. Never did I dream that I would ever hear the words "blood disorder", to me at the time, those were things that people were born with and had their entire life, not just develop 19 years afterwards. However, even with those words ringing in my head, I was convinced that the worst case scenario was that I would have to get a blood transfusion and I'd be fine. I'd stop taking the medicine and I would be okay, like I always am. I thought THAT was even a stretch for me at the end of the day but as I went to bed I prayed that everything would be okay, not knowing that the next day my entire life would change.

When I woke up the next morning, I was fully convinced and on a mission to be at work. It wasn't an option for me to go to the hospital. I had to go to work. My friends had been yelling at me the whole day before, but we were so short staffed at work that I knew there was no one to cover for me if I went to the hospital. My appointment was at 11 and I had to be at work by 1:30, and may God be my witness I made EVERY attempt to go to work. Unfortunately the universe had other plans for me.

I will remember this day for the rest of my life. I remembering entering the cancer center where people were receiving chemotherapy, and I remember hiding my face as to pretend like I didn't belong there. I didn't have cancer! There were so many older people who would look at me and just smile, and I just wanted to scream that I didn't belong there. I didn't of course but a cancer center was the last place I wanted to be. When I was finally ready to go in I was relieved to be away from the judgement of everyone else, but that was where I received the worst of the news.

The doctor asked a lot of questions, and when he started asking about HIV and what not, I started to get concerned. Before he left he told me that he was waiting for some tests to come back and that he had to wait for that before he would explain what was going on. At that moment I knew something wasn't right, I began to panic as the dread entered my mind of actually having something wrong with me.

When the doctor came back, the concern was even more notable; he was gentler, and very aware of his movements and words. So when he told me that he thinks I have "TTP" my stomach dropped and I immediately couldn't control my tears. I couldn't breathe and had a hard time taking in any of his information. The only thing that I had gotten from that conversation was that I was very sick and that if I didn't go to the states best hospital that day, as soon as I leave, I was going to get even more sick which would ultimately kill me. He explained to me that I was severely anemic and that my kidneys were not functioning correctly, and on top of that my platelets had dropped another 5 thousand. He continued to explain that it was NOT just my medicine and that my own body was destroying my blood and that it was very important that I go to get treatment right away because it was survivable as long as I got treatment. Before I left he made me promise that I would go to the hospital as soon as I leave and that I wouldn't try to go to work. I did promise him as I watched my life fall to pieces.

The first thing that I did was call my bosses and tell them that I wouldn't be able to come into work. The one job where I worked 40 hours I had arranged to be back by Friday (this was Tuesday that I was telling her) I was at a loss for words and so I just told them as much as I could without breaking down. The next thing I did was called my mom to tell her that I was going to be admitted into the hospital for a 3-4 day treatment. She immediately told me that she was coming up (my parents live 7 hours away). I argued for her to stay because I knew how bad the drive was but she insisted and wouldn't have it any other way. Once I was done on the phone I bent my head to the wheel and cried the most and the hardest that I had ever probably cried before. I spent my whole drive (about 40 minutes) crying and calling people close to me to let them know I was going to be admitted and to pray for me. As I was driving I hit a really bad rain storm which made it almost impossible to see the road except for the flashing hazard lights of the car that was in front of me.

Once I had made it to the hospital, I had managed to park and walk in without falling apart. I had no idea where I was going so I stopped at the first information desk and asked for the cancer center. The lady looked back at me very confused and asked me if I was looking for a patient sadly I sad no, and told her that I was being admitted. She pointed me in the direction of the center and that is where my night began to get more and more fuzzy.

There were a team of 5-6 doctors waiting for me when I walked in and as soon as I told them my name they yelled with delight to see me. they asked me how I got there and when I told them I had drove myself, they looked terrified as they explained how easy it would have been for me to pass out and die on the way there.

They started to explain the condition of TTP to me, which I to be honest do not remember a whole lot about at this point, but they had told me that I would need to have two central lines for treatment which I would be starting that night. I was taken down to the emergency department where I was officially admitted and then sent to immediate surgery to have a catheter placed in my neck for treatment that night.

Once I had gotten into surgery is when my facade of holding it together started to crumble. As I laid there motionless for surgery, silent tears began to roll down my face. Nurses kept asking me if I was okay or if I was in pain, but all I could manage to say was "I'm okay" I had no words to describe the absolute despair that I was feeling. They knew that it had been a very long day for me and at the time it was only 5 o'clock... It felt like 1 in the morning for me and the night was only just beginning.

I was brought to my room for a little bit after surgery, and slept for a bit as well because of the anesthesia. However, it wasn't too long after when the nurses came up to start my first apheresis treatment. The first treatment wasn't completely terrible, but for someone who has never been hospitalized the whole process was very new.

I fell asleep during the first treatment, since my kidneys were'nt functioning correctly (that makes you more tired) but when I woke up, I couldn't see. Everything in one eye was upside down which meant that I couldn't make sense of anything. It corrected itself after a couple seconds, but the mysterious bouts did not as I continued treatment.

I went through 4 days on apheresis; each day hoping that the results to my TTP test (Adams t-13 result) would be back. Although, it wouldn't have prevented the apheresis, it would have speed things up a little bit. On the second day of pheresis, I began getting physically sick. I lost 10 pounds while I was in the hospital because I was so nauseous all the time that I was afraid to eat. Apheresis made me sick, and on top of that whenever I did go through an exchange my body became so numb that I had no desire to do anything but sleep. (the plasma binds with your calcium and they couldn't give me calcium fast enough to replace what was being depleted, so when you're low on calcium you go numb.) There were times where my entire body was so numb that it hurt, even just to lie there.

After 4 days, the result for my Adams T-13 had come back, but that result only lead to a more depressing conclusion. for someone to have TTP, the Adams result has to be under 10%, mine was at 100% so it was an automatic exclusion of TTP. Which meant that it could only be one of two things: HUS of aHUS. I didn't have diarrhea (HUS would give you that) so that excluded that option, which meant that on Friday June 20th, I was diagnosed with aHUS

After I was diagnosed, it took a while before I understood the magnitude of how sick I was. My doctors first told me that there was a treatment, (Soliris/ Eculizumab) and while I found solace in that as the whole time I knew that whatever was going to happen, I would be okay.

After Apheresis on Friday, I came back to find my mom very emotional and almost relieved to see me... That's when I found out the truth about my disease. My doctors had came up to the room and began explaining what aHUS meant for me. They told me that my blood was clotting inside the vessels and that was what was causing my kidneys to malfunction. They told me that the damage was hopefully reversible with the treatment, and I believe them that it would be. They also explained to me that with this treatment, the worst case scenario was that I might one day need to have a kidney transplant, and that I probably wouldn't be able to have kids because they didn't know how the treatment would affect the fetus. They then told me that they wanted me to stay at least through the weekend to see how I would respond to the new drug which they were starting me on that night.

Once my doctors had left, my parents told me how glad they were that I was okay, and that they had asked my doctors to come back up to talk to them. They told me that they had been looking on the internet to read about the disease and that everything had said that it was pretty much a sure death. My doctors had reassured them that that was the case before the treatment was available.

By the time I had left the hospital on the 23rd. I had had surgery, two blood transfusions, 4 plasma-pheresis treatments, 1 Eculizumab treatment, and 1 breakdown.

My second night at the hospital was the first time I let everything sink in and I remember calling my best friend at the time and crying my eyes out. I didn't understand why something like this was happening to me. My whole life I had felt like I was given the short end of the stick and when that hit, it hit hard. Unfortunately, after that phone call reality didn't set back in until a month later.

Since I've been diagnosed, I've had 2 ER trips, I've been sexually harassed and almost raped by one of my doctors, I've had surgery to have a port placed, I've ran out of money and had to sleep in my car, and I just barely passed my classes. But I've also become a manger, an advocate, and a writer.

Life isn't great, and I still have my moments where I cry and wonder how I got here, but at the same time life is wonderful! Because every second, and every day that I'm alive is a gift, because everything about aHUS says that I should have died. Never give up on life, there is always something to learn and someone to help!

I have become an advocate for aHUS and I would love to talk to anyone who needs advice, guidance, or just someone to talk to. If you would like to reach me, please send me an email at meganchristine928@gmail.com

God bless, and keep your head up! 
Megan

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Comment by Kerry Waters on January 11, 2015 at 1:16pm

Megan,

As I read your story, I was tearing up! This is just too familiar to my family. My son was a freshman in college when he was diagnosed at age 19. Like you, we were told that it was TTP. Like you, we thought aHUS was a death sentence. Like you, we waited patiently for the Soliris to begin to work. We were very fortunate that he was able to stop dialysis. Nine months after diagnosis, he is back at college, living on his own, working his part-time job, and going in for infusions every other week. We are so thankful for the love, prayers, and encouragement of each family that has endured this battle. We will pray for you, and we are here to support you too.

Comment by Grace on December 24, 2014 at 8:52pm

Welcome, Megan, and thank you for sharing your courageous story! I, too, was diagnosed when I was a sophomore in college, now fourteen years ago. LIfe is never what you expect, but we're still alive for a reason.

Comment by Phyllis Ann Talbot on December 18, 2014 at 9:43am

Welcome and thanks so much for sharing your story!!!

Comment by Lisa Grooms on December 17, 2014 at 7:01pm

Wow...just wow.  You are an incredibly strong young lady.  Thank you for sharing Megan.

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The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

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Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

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