The Atypical HUS Foundation

Jill's Story- Moving from Hardship to Hope

Adult aHUS patient Jill knows firsthand the hopeless feelings and the hardships facing those diagnosed with this disease.  As a mother and dialysis-to-transplant patient, Jill encourages other adults facing challenges to stay strong and to find their own sources of inspiration and strength.  A story of faith and family, Jill’s determination lead her to focus on the positive: “If you want to see a rainbow, you gotta put up with the rain.”

 

Adults with aHUS.

    It’s not easy. In fact, it’s horrible. Pre-kidney failure I was a 28 year old wife, mom of a three year old, therapist, daughter, sister, friend…….and while enduring kidney failure, I was still ALL of those things. Only I was very sick and required help in every aspect of my life.

 

    How do you cook dinner for your family when you are constantly nauseated? How do you get your 3 year old to preschool when you can’t drive? Every single facet of my life and my families’ life was changed and dramatically harder. My husband had to become a caregiver, even though he worked 60 hours a week and had a three hour round trip drive to work every day. And my mom practically moved in with us to help care for me and Madeline. I felt so useless. I felt like a burden. I felt in the way of everyone and worst of all, not only did I feel like my life was ruined but I was taking down my family with me.

 

     It was the most miserable time in my life. Fortunately for me, I have a patient and loving family, fabulous friends and a God who never left my side. It’s been 20 months since my kidney transplant so the best way to convey my feelings at that time in my life, is to share an excerpt from my blog I kept as a journal throughout my kidney failure and transplant journey.

 

     Life as an aHUS patient can be very hard. If you are an adult suffering from aHUS, I would encourage you to read this blog. When I read it now, it’s like I am reading somebody else’s life.  My story has had a happy ending so I have forgotten some of the worst days of my life but rereading entries from some of those really dark days take me right back to the 904 days of my life that, to me, where Hell. The following entry is from March 2010.

 

 

The Impacts of Kidney Failure and HUS

During this part of my story I have ended hemo and will be beginning PD. So, I still have a perma cath in my neck and the tink off cath in my stomach. I am quite the mess!

Kidney failure and/or aHUS has affected every single part of my body from the top of my head to the tips of my toes. Here are some examples. My hair began to fall out, my vision was affected badly by the aHUS, my blood pressure is unstable, I passed out a lot, I puke daily, my parathyroid is over active, my colon is lazy, I am covered in bruises, I can only eat a handful of certain foods, I can only drink 32 oz a day, I have to wear clothes a little loose because of the tink off cath, I couldn't wear certain shirts due to the perma cath, couldn't shower for awhile, couldn't bathe for awhile, constipation, poor circulation in which there are times my toes feel like they will freeze off, must be in bed by 8 o'clock with PD, cannot stay out late without paying for it, body image issues, not feeling pretty or sexy for Chris, being unable to drive at one point, feeling like a lousy mother and wife, and feeling useless to society job wise. I also am not allowed to get pregnant, cannot take birth control, or ever get another vaccination. And I should TRY to not get sick. Because any of these 4 factors could potentially reactivate aHUS. I still have aHUS, always will, it is just in a sort of remission state. One thing change drastically, my personality. I have become a fighter! At times I don't even feel like Jill. And I guess in some ways I am a new Jill. When you have to fight with your doctor constantly to just get mediocre care, it wears you down physically. So kidney failure and the aHUS has taken a toll on me physically, emotionally, financially and spiritually. It also impacted my husband, my parents, my brother, my baby, my family, my friends, my coworkers....anyone close to me.

     That was life just a short while ago - I felt helpless and defeated. It’s hard to say how you will react in a situation until you have actually faced it but I don’t think I would have fought so hard to live if it wasn’t for my baby girl, Madeline. I remember many difficult days: lying in bed because I was hooked to my PD machine,  feeling nauseated and vomiting,  being depressed,  or having fluctuating blood pressures that were through the roof high or so low my BP was almost undetectable.  Often I was simply so fatigued and careworn that it was a struggle just to put one foot in front of the other. For so many days, weeks and months, this was my life. Meanwhile, my mom was taking care of ME and Madeline. My husband Chris was working himself to death both at home and at work, just to keep everything going. My friends would come over to cook or be my cheerleaders. They were a great squad, I must say! Patients in my professional practice had to see other therapists or didn’t get therapy at all… because I had become a patient myself.  

     All of these situations broke my heart daily, but the one thing that ripped me to shreds was the THOUGHT of not being here for our daughter Madeline. She is the only reason I got through the many long hospital stays. When I closed my eyes, the picture of her sweet, perfect face I saw in my head got me through hemodialysis. Getting into the car after preschool, Madeline at ages three and four amazed me daily, asking me how my blood pressure had been that day. The thought of me leaving this beautiful angel God had given me stirred up enough anger, fear, and love inside me to fight. I am Madeline’s mama and nothing was/is going to take me away from her.

     My senior quote when I graduated from high school in 1998 was, “If you want to see a rainbow, you gotta put up with the rain.” I had no clue at that point in my life how much truth is in that quote. I loved life pre-kidney failure and before the diagnosis of aHUS, but I adore and savor life now. Every single moment is a gift and can change in a heartbeat. I prayed for a miracle when I was on dialysis. I prayed for more than a year that my kidneys would “wake up” and start working again. I can remember my aunt saying to me that she felt like I would receive a miracle but she wasn’t sure that it would be my kidneys waking up. She believed God had a different miracle in mind. And she was right! God DID indeed have a different type of miracle in mind…in fact, He had had several miracles in mind for me. At this point in time , Soliris® was yet not FDA approved for the use of aHUS. Discovering that I have the Factor H genetic mutation for aHUS, the one hospital in the country that had considered doing this transplant would not allow my brother to become my kidney donor. The cards were well stacked against me. But God had a plan. He had miracles planned better than I could imagine! Soliris® got approved, a friend named Lindsey donated her kidney and I feel that I had the best transplant team in the world!

    I share this with all who deal with aHUS because everything seemed against me… I know the hopeless feelings and the hardships that adults face with this disease. Still, I want to encourage you to stay strong and find your own sources of inspiration and strength, as I did with my daughter Madeline. So many changes have happened in the world of aHUS diagnosis and treatment in the past few years. Soliris® has been a game-changer for me, and for countless other patients suffering from aHUS. This website is a huge source of support, hope and full of examples of miracles. Organ donation is becoming better understood by the general public. 

     Most importantly, medicine and science are making progress with daily discoveries that hold potential to facilitate miracles. I look forward to the future, despite the dismal outlook of grim aHUS realities, and continue to focus on new scientific breakthroughs and the miracles they may bring to patients and families. From the tiniest children with aHUS to the oldest of us adults, we are rare and we are atypical but we are very, very strong!

 

Learn more of Jill’s journey through her blogs…

http://www.kidneysnotincluded.blogspot.com/     Pre Transplant (Dec 2008-May 2011)

http://www.kidneysnowincluded.blogspot.com/    Post Transplant (June 23, 2011- present)

 

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The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

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.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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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.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

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