Goodbye 2017….

Is it just me, or did 2017 fly by?

Today marks 518 Days Post Kidney Transplant!! As the year comes to a close, I can’t help but reflect on how far Jonathan has come. Looking back at pictures and videos, I see how much he has changed…for the better. As far as his health goes, he is healthy. HOPE is doing wonderfully, Louie is happy, and so far, (knock on wood) he’s not had any colds or flu. Since I am working full time and rarely home, Jonathan takes care of himself. He is now in control of his life, and I am so proud of him. He makes his own appointments, refills his medications, (even though I work in a pharmacy) schedules his infusions and orders his Soliris. He makes sure that he gets his infusion every 14 days, and is very compliant. Still monitoring is fluids, it’s his way of control. He celebrated his 1 year Kidneyversary, and his 25th birthday. He traveled to California, and went on a few excursions with his friends. He fell in love, but sadly, his heart was shattered when it ended. The positive on that is the fact that he was able to feel that emotion and experience love and loss. Its what I’ve always wanted for him. There were times in his life that I didn’t think he’d ever have that, but I prayed so desperately for. The perfect person is out there for him, and it will happen when he least expects it.

His appointments are fewer, and so are his lab draws. Every 2 months. The last time he had gone that long without labs being drawn was back in 1993. His next appointment with Dr. L is in January, as we certainly miss her and his transplant team, it is so nice to not have that be the center of your life.

I asked my son, what his wishes for 2018 are, and this is what he told me.

  • To go back to school. He wants to further his education and start his dream of becoming a Paleontologist.
  • To become employed and work towards his future.
  • To continue to mentor those with Atypical Hemolytic Uremic Syndrome (aHUS) and share his message of hope.
  • And finally, to live each day the way he was intended to live it~ to the fullest.

My hope is that 2018 will be a phenomenal year for my son. He continues to inspire me, amaze me, and makes me want to be a better person. He will always be my hero.

My wish is that 2018 brings peace, prosperity, health, happiness and much love to all.

Life is too short not to Live life with a smile.

Thank you for reading.

Thank you for taking the time.

Much Love,

Jonathan Kolp’s Mom♥️


grat•i•tude (noun) – the mindfulness of taking nothing for granted.

Today marks 500 days Post Kidney Transplant…..

500 days free from Dialysis.

500 days free of daily needle pokes.

500 days of not being tethered to a machine.

500 days of feeling healthy.

500 days of drinking freely, as much as he wants.

500 days of being able to eat whatever he wants.

500 days of being able to have fun with his friends without worrying about being home for a treatment.

500 days free of worrying about the weather preventing us from doing Dialysis.

500 days of living a beautiful life.

Every day we give thanks for these moments, that most take for granted. I will never forget the lesson that Jonathan’s life has taught me ~ to live in the moment, nor would I ever wish to change what we’ve been through, for without it, we wouldn’t realize how precious life really is.

Life is indeed beautiful. 💙💚💙

Thank you for reading.

Thank you for taking the time.

Much Love,

Jonathan Kolp’s Mom ♥️

Thankful, Grateful & Blessed.

Day 480 Post Kidney Transplant…

It’s funny how memories, whether they are happy ones, or sad ones, get attached to major holidays. I can remember specific holidays, and birthdays, including Jonathan’s 1st Birthday, that we spent in the hospital. Last year was no different, as Jonathan had mouth ulcers so bad that he ended up staying in the hospital, having a biopsy done on his tongue, and literally coming home the day before he was to have his first Thanksgiving meal, (with NO RESTRICTIONS) in 20 years. Unfortunately, a super elixir of “Magic Mouthwash” was his prelude to any eating whatsoever, which put a damper on his tastebuds.

Well, this year, we are FINALLY breaking the mold!!!! No ulcers! We are home, and I am cooking a feast! Jonathan is having his friends over to help him celebrate being so very thankful.

We do have so much to be thankful for. Jonathan’s last lab appointment, 2 weeks ago, resulted in perfect labs! HOPE is doing beautifully well, Louie is happy, and Jonathan is healthy.

Today, I personally, am grateful for my son, his spirit that shines ever so brightly, his sense of humor and being able to overcome so much adversity with laughter and tenacity, and his overwhelmingly ability to give others something wonderful…HOPE. I am also thankful for family and friends and those around the world, who have continuously prayed for us, kept Jonathan in their thoughts and sent so much positive energy to him. To those who have walked this journey with us, THANK YOU.

Of course, I am incredibly and eternally grateful for Jonathan’s donor family. Please continue to keep them in your thoughts and prayers, as they are missing a piece of their hearts today and everyday.

May you feel an abundance of love and gratitude today and always.

Happy Thanksgiving.

Thank you for reading.

Thank you for taking the time.

Much Love,

Jonathan Kolp’s Mom ♥️

 ~Find Yourself~

Wow! Life moves pretty fast when you are living!!

The last time I blogged was on Jonathan’s Kidneyversary, July 31! It’s now fall, the leaves are changing colors, the air is getting crisper, and Jonathan has been living life. 

Most recently, Jonathan and I had an amazing trip to California, where I attended a Global Genes Summit, where I learned more about advocating, and we had our aHUS Disney Conference. Connection with others dealing with the same disease as Jonathan, has begun to become an important part of his life. When he was younger, he just wanted to be normal, but now that he is older, he is finding out that “NORMAL” isn’t everything that it’s cracked up to be. Making life-long friendships with those who have been where you’ve been, really has made an impact on his life. We once again shared his story, and it was live on Facebook. You can see it here.

I was so blessed to be able to share HOPE with Jonathan by my side.

We certainly loved being back in California.As you can see, we were able to go to Disneyland! For the first time, Jonathan was able to walk the ENTIRE park, went on rides that he couldn’t go on before, and had a great time! Jonathan also turned 25 on September 16th!! 25!! In my heart, I still see him as the little boy that would grab my hand tight, give me that sweet Jonathan smile, and say “I love you Momma”. Now, he’s a man, who is finally finding himself. ♥️

Yesterday, Jonathan had his Transplant clinic. It’s been since his Kidneyversary that we had been there! His last labs were on September 8th! He has never, in his life, gone that long without lab work! Still sporting his mask, he gets his labs done before clinic. The nurse says he has great veins! Wait, what? That is also a first! Jonathan and I both look at each other, and I can tell what he is saying with his eyes..”Did you hear that, too??” I nodded and mouthed yes! After lab draws and Urinalysis, we head downstairs, and have breakfast, while we wait for his appointment with Dr. L.

We then head to the Transplant floor, #7.

Jonathan has his vitals done. 

  • Blood pressure ~ 107/66
  • Oxygen Saturation ~ 99%
  • Weight ~ 97.1 lb
  • Height ~ 4’4” ♥️ 

All Perfect! We wait in the room for a little and then we see Dr.L! She greets Jonathan and I with, “Hi team!” 😊

Jonathan talked about his summer, California, some unexpected happiness (♥️) new in his life, and how he has been feeling. He’s maintaining his weight, exercising, and eating healthy. But, his LDL (bad cholesterol) is still elevated, despite changing his diet. Dr. L explains that this is due to Prograf, and wants him to start on a low dose cholesterol medication, Atorvistatin. She also mentions that if his levels go down enough, he may he able to be weened off in the future. We also talk about his mouth ulcers. Yeah, I know!!! We thought we had solved that problem, but we believe they are here due to high stress levels. He is currently on a steroid dental paste, which is working great. Labs are PERFECT!!! His creatinine is 0.8, BUN is 12, WBC is 6.67!! Woohoo!

Oh, and of course, this happened..Flu shot!!! It’s that season, and he needs to be more cautious than ever. Thankfully, I bought him a custom mask. 

His next appointment?

JANUARY 2018! Amazing!

We are still so eternally grateful to his donor family for choosing to give life. They are in my constant thoughts. We are also thankful for our friends and family who continue to support us, cheer Jonathan on, and keeping him in thoughts and prayers. ♥️

Of course this blog wouldn’t be complete without asking those who haven’t, to please consider signing up for organ, eye and tissue donation. It takes literally 2 minutes. 💙💚💙

Thank you for reading.

Thank you for taking the time.

Much love ♥️

Jonathan Kolp’s Mom

    Happy 1 Year Kidneyversary!!

    Well, the day has finally come- 

    365 Days Post Kidney Transplant!

    Friday, Jonathan had his scheduled lab and Doctor appointment, and we came bearing gifts! At first I was going to bake and bring sweet treats, but the more I thought about it, the more I felt I needed to do something more personal. Thankfully, I work with someone incredibly talented and after Jonathan’s approval, we made these..On the front it has HOPE, and the date of Jonathan’s transplant, and on the back it says, “Two lives intertwined by a miracle. ❤️”. We attached a “Team Kolp” shirt to it and handed them out to the transplant team. I want to thank my sweet friend, Monique, for being so creative and helping me!!! 😘

    *Just a side note- The Team Kolp shirts were brought to life by a wonderful teacher, Coach Tallant, at McKinney Boyd High School, in 2010, when Jonathan was a Senior. It was thought that he had Renal Cell Carcenoma and had to have a bilateral nephrectomy. At the time, the shirts were made, we knew that Jonathan would never be able to get a kidney transplant because of the aHUS and that there was not a medication available to prevent destruction of a new kidney. It didn’t occur to me until Friday, when we were handing out the shirts, that the shirts are Donate Life colors. That was never planned, yet, it is a beautiful coincidence! 💙💚💙

    In pictures here is how his day played out…5959 Harry Hines Blvd in Dallas, has become our second home. The faces you see, (missing some, too) have become our family. They’ve made Jonathan’s 1st year journey, so memorable. They always greet him and I with smiles, asking him about his day, genuinely wanting to know, and making him feel at home. They are some of his greatest cheerleaders, cheering him on his milestones! Without them, Jonathan  wouldn’t be where he is today. ❤️

    We met with Dr. L, and thankfully, Jonathan’s appointments with her are more of social visits. She tells him that she is so happy that he is at the 1 year mark, and now, he can do some of the things that he’s wanted to do, like the road trip with his friends to New Orleans (without Mom- I know, Lord help me), school, and more social activities. HOPE is doing great, and his labs are stable. The BK virus is dying out, and CMV is still NOT detected. He doesn’t have to monitor his in’s and out’s anymore (although, he still wants to) blood pressures to be taken weekly (WOW), and to keep doing what he is doing as far as his weight and exercise goes. His next appointment? OCTOBER!

    This past year has been surreal. We’ve had bumps in the road, had to take alternative paths, and have overcome a great deal as a family. 

    I want to express my infinite gratitude to everyone that has followed Jonathan’s journey; for always keeping him in your thoughts and prayers, and consistently sending him positive energy. Personally, there are so many people that I have leaned on, who helped me through some scary moments, held my hand, listen to me and encouraged me. I will never have the right words to thank each and every one of you. 

    Please keep Jonathan’s donor family in your thoughts and prayers, too, for without them, he would still be tethered to a machine. 

    I will continue to share Jonathan’s story, and keep everyone updated on his life with HOPE, because after all, 


    I’ve created a video of this past year~

    Thank you for being a part of his journey. ❤️

    Thank you for reading.

    Thank you for taking the time.

    Much Love,

    Jonathan Kolp’s Family 💙💚💙

    “Learn from Yesterday, Live for Today, HOPE for Tomorrow. The important thing is not to stop questioning.” ~ Albert Einstein 

    Day 350 ~ Post Kidney Transplant…

    Friday we had an appointment at UT Southwestern, for Jonathan’s Pentadmine treatment. This is in place of Bactrim, which Louie his Liver does NOT like. So he’s been doing this for awhile, since we found out about the Bactrim in September of last year. If you remember, November he started having mouth ulcers, bad, horrible ones. Biopsies were performed and sent to pathology, where nothing came back; thank God! But Jonathan has still been getting them, on a regular basis. Not to the extent of being hospitalized or having to use “Magic Mouthwash” in order to eat or drink, but painful enough to have a hard time talking or having to adapt to different chewing patterns. Dr. L consistently looks in his mouth and we’ve thought they might be from stress. Randomly popping up when I’ve had to fly out of town, (he worries) or maybe not getting enough sleep (yes, he’s a night owl). 

    So Thursday night, as I am trying to fall asleep, my brain decides to work. I start thinking about those ulcers and how we have no answer as to why they show up. Is it food? Spicy food? Sriacha? (He loves) Stress? Lack of sleep? Toothpaste? You name it, I methodically try to eliminate it. Then it hits me. Could it be from the Pentamidine???? It started AFTER we switched to that. 

    So, as we are in the elevator, going to the 2nd floor for his treatment, I ask Jonathan how his mouth is today, like I do everyday.  He tells me it’s OK, but still sore. We get off the elevator, and check in. No wait time, as he’s called back within 2 minutes. 

    25 minutes later, he is finished. Mints in hand, (to get rid of the metallic taste it leaves behind) we head to the elevators. I mention to him that when I was having a hard time falling asleep, I started thinking about his mouth ulcers and what could be causing it. I said, “Jonathan, I think it’s the Pentamidine”, and he said, “No way Mom! When I was having my treatment I thought the same thing!” We looked up the side effects and sure enough…..He then says, “Look how long it took us to figure it out, but WE finally did!” He then fist bumps me and smiles! 

    I send a message to Dr. L; she’s not suprised of our “excessive thinking”and messaged me back saying that if it is from the Pentamidine, then they will soon be gone forever since that was his LAST TREATMENT! WOOOHOOO!

    Obviously through the years, we have learned to become a “Sherlock Holmes”, trying to have control over something whether it be small or big, we question everything. I am so appreciative of that gift.

    We have labs next Friday, and then his appointment with Dr. L on July 28th. Life moves pretty fast as we are approaching Jonathan’s 1 year mark.

    As we do get closer, I ask that you keep Jonathan’s Donor family in your thoughts and prayers. I can not imagine the immeasurable amount of heartache that they are feeling nor can I imagine the day to day of life without their sweet child. 💔

    Thank you again for keeping Jonathan in your prayers, sending him good vibes and thinking of him. 

    Thank you for reading.

    Thank you for taking the time.

    Much love,

    Jonathan Kolp’s Mom ❤️

    “The Measure of a Life, after all, is not it’s Duration, but it’s Donation.” ~ Corrie Ten Boom

    Today is the first day of July. For most, it’s a month of celebrating our independence, family vacations,  barbecue’s, sunshine, relaxation, and summer splendor.  Days are long, and nights are warm. For us, it’s been like that in previous years, but now, JULY has so much more meaning. 

    We are approaching Jonathan’s 1 year Kidney Anniversary ~ Hope’s Birthday. 

    Friday, Jonathan had his early lab appointment, where they drew the standard 4 vials; checking his CBC, Complete Metabolic Count, Tacrolimus level, Phosphorus, Magnesium and Hepatic Panel. He has a Urinalysis done as well. 

    We then had an appointment with Dr.L, who we had not seen in awhile! I know that should be a good thing, but we enjoy seeing her, and talking about exciting things Jonathan has planned for his future. Yes, I said FUTURE! I know I’ve said this before, but when Jonathan was on dialysis, it was about the day, and we never fully opened the “door” to the future. Honestly, I was afraid and scared that I would get my hopes up for him, only to have my heart break that the future was dark and nonexistent. I know, not a good place, but reality.  

    Jonathan talked about what he’s been doing so far this summer. He had one of his best friends here from Iowa, and they were able to do things and have a great time. He’s been exercising, and hanging out with his close group of friends. He tells Dr. L how excited he is to be involved with The Atypical HUS Foundation, mentoring children and young adults. He continues and tells her that will be attending the Foundation’s Super Conference in Anaheim, California, where he will be working, and celebrating his 25th birthday with family, and he will be mentoring in Orlando, Florida in December. I’m extremely proud of him. I always believed that his story can help heal others, and the fact he is doing this ON HIS OWN, makes my heart so happy. Dr. L is proud of him, too, and says, “that is the whole reason behind transplants; to live.” 

    We didn’t have his labs back during his appointment, but she said she would let us know the results via MyChart. The BK virus is moving in the right direction, and soon they will die out. (Creepy that we all have those bugs). She tells Jonathan that now his appointments will be every 3 months! I can’t imagine!!! But, she DOES want to see him on his kidneyversary. It will be on July 28th, not on the actual day of July 31st. We then wait for his post-Kidney transplant coordinator, to give him his “After Visit Summary” and future instructions. 

    We wait, and I usually take pictures of him- remember, I document everything…

    We hear a knock at the door, and we see Tam-Nhi, Roxanne, Dr. L, and all the team. 

    For once, I am at a loss for words…..

    I was caught completely off guard and they presented me with an award; UT Southwestern’s Kidney, Liver, and Pancreas Transplant team nominated me for the United Network for Organ Sharing 2017 National Donor Memorial Award for Excellence. I am deeply moved and touched that they nominated me!!! Surprised is an understatement and I honestly am humbled and honored. I owe everything to this team, especially Dr. L, for without their belief in Jonathan and having HOPE, Jonathan wouldn’t be where he is today.

    I will continue to volunteer, advocate, and ask every single person I know, and don’t know, to consider organ, tissue and eye donation. I believe, with all my heart, that everyone deserves to live a life that is free from machines, debilitating diseases and fear of mortality- a chance at obtaining their HOPES and dreams.

    Please consider being a hero and donating life at


    Thank you for reading.

    Thank you for taking the time.

    Much love,

    Jonathan Kolp’s Mom ❤️

    In Jonathan’s own words….

    Today marks 319 Days Post Kidney Transplant, and another monumental day for my son. This blog is written by him~ 24 years AFTER his diagnosis with aHUS. ❤️

    I was diagnosed at age 8 1/2 months old, June 15th, exactly 24 years ago today, with Atypical Hemolytic Uremic Syndrome- aHUS.

    At the time I was diagnosed, I was one of 40 in the United States.

    Between 1993 and 1995, I had 20 relapses.

    I started FFP (Fresh Frozen Plasma) infusions, once a week.

    Before my End Stage Renal Disease, I was doing PlasmaPherisis every other day.

    I was on Peritoneal Dialysis for 13 years.

    I have had Multiple Strokes, was in a coma and had to learn to walk, talk, eat, and swallow in 1999.

    I have had multiple seizures.

    I have coded.

    I have Renal Osteodystrophy.

    I have had pins placed in my hips.

    I have had a complete parathyroidectomy.

    I have had a Bitaleral Nephrectomy.

    I have had multiple Port A Cath placements.

    I have a fistula.

    I have done Hemo Dialysis which my Mom did for me, at home, 5 days a week.

    I have had Heart Failure, with my heart working at only 25%.

    I have a portion of a Catheter still in my chest.

    I was on dialysis for 20 years.

    I started Soliris in January 2013.

    I share these obstacles not because I want people to feel sorry for me. I share All these things because they have shaped me and made me who I am today.

    I am strong. aHUS Strong. I am no longer fighting this disease alone.

    I am rare, ultra-rare, and I am proud to be amongest some of the strongest people on the planet.

    After spending 20 years on dialysis, hooked up to a machine daily, and exactly 89 days on the kidney transplant list, it was July 31, 2016, that I was given the gift of life by a family who lost their loved one.

    They SAVED my life.

    I am finally living my life, the way I was intended to live it.


    My wish is that my story gives people, young and old, those with aHUS, and those without, HOPE.

    I am living proof.

    Thank you for all the love and support everyone has given me.


    “One person can make a difference, and everyone should try.” ~ John F. Kennedy

    It’s been awhile since I’ve updated as life has a way of moving quickly; without us knowing it. 

    Since our last post, we’ve been busy trying to live life. Jonathan has been going in every 2 weeks for lab draws, and THANKFULLY his labs have been great! Last Friday he had labs done and HOPE is doing great, Louie is happy, and there are no changes in medication, which is a good thing- STABILITY! That is a word we are still trying to come to grips with. We’ve been so accustomed to life changing in an instant, that we’ve never become complacent. Never seditary, always on guard; never spontaneous, always needing a plan.

    Jonathan has somewhat accepted a new way of living, but it’s been a little hard. Being immunesuppressed has it’s down side. He wants so much to get out there, go to school, get a job, go out with his friends, but he is cautious. He doesn’t want to put his health at risk. There are so many viruses out there that could land Jonathan in the hospital. At what point do you start taking risks? That is where he is at. Being 24, he has some catching up to do in the sense that he is a little behind the age agenda. Weighing out pros and cons has become his life. He deserves so much. I want nothing more than for him to get out there and do what sets his soul on fire. As you can see, I, too, am having issues with change and letting go. Trust me, I am the first to admit it. It took me a very long time to get set in my “helicopter mom ways”, and it will take awhile to get back to a “normal” way in terms of being a Mother. Fear plays a huge roll in every decision I make when it comes to Jonathan. 

    I have learned something from patients dealing with aHUS in Baltimore. (I had another aHUS Foundation Conference in Baltimore last weekend.) I learned that the patient not only worries about their own mortality, health, and the impact it has on others, but they also worry about their loved ones caring for them. They worry about the moment that the “house of cards” falls and collapses. It certainly gave me perspective as to what may be happening in our own lives. As a family, Jonathan, is very open with Leo and I, but I never thought of what may be going through his mind as far as what he thinks about his parents or those that are involved in his care. He is very unselfish that way. I am afraid he has protected us, and at his own risk. As much as I appreciate that, his number one priority should be himself- Jonathan. 

    Life will forever be changing…. and we will need to change with it- whether it be what we want or why it is needed.

    I am willing to change as long as my son benefits from it..After all, isn’t that what’s being a parent all about???? ❤️

    It’s no longer about you,

    It’s what’s BEST for them. ALWAYS.

    Praying for our donor family and the pain and hurt they may be feeling. 

    Praying for peace and the right decisions being made as a parent…

    And, most definitely,  praying for strength. 315 Days post Kidney Transplant… is beautiful.

    Life is definitely forever moving. As long as we are moving with it, all will be okay….

    This I believe.

    Thank you for reading..
    Thank you for taking the time…

    Much Love,

    Jonathan Kolp’s Mom ❤️

    Your Greatest Contribution To Life May Not Be Something You Do, But Someone You Raise.

    Day 286~ Post Kidney Transplant….

    It seemed like forever since Jonathan had labs done! He actually had a week off, but with that week off, it left me feeling a little anxious about this weeks’  labs. Last weekend, I was gone to Seattle, with a 5 hour pit stop in Portland, and Jonathan ENJOYED his time without me being the “helicopter Mom”. Yes, I FaceTimed with him, which made me feel at ease, (a little), but I really missed him.This was my hug when I got home last Sunday. ❤️ We will be doing it again on June 2nd, when I travel to Baltimore, Maryland, for another aHUS Conference. (I hear Jonathan whispering….FREEDOM!) 😊

    So yesterday, he had his scheduled lab time at 8:30 am, and it took longer to get to Dallas than the actual appointment itself. The usual was drawn; CBC, Complete Metabolic Panel, Hepatic Panel, Phosphorus, Magnesium, Assay Tacrolimus Level, and finally, Urinalysis. 

    This is the message he received yesterday afternoon…

    A huge sigh of relief. His labs were great, and quite honestly, that is the greatest Mother’s Day gift I could ever receive!!! 

    Jonathan still has had some mouth ulcers, not as bad as he did in November of last year, but still occasionally one or two are popping up. Dr. L believes that they are from stress. Jonathan was worried about me flying, and with worry there is stress. Of course, I told him that everything would be alright, but when my plane didn’t land on-time, well, that started the snowball of anxiety. What will heal those ulcers? Rest and no stress! We plan on having a stress-free weekend and as far as rest…. if I can get him to go to bed at a decent hour it would be a miracle!

    Speaking of this weekend….it is Mother’s Day on Sunday. I am so fortunate and blessed to have been given the gift of being a Mom. My greatest achievement will always be my son. He never came with instructions, but God trusted me to raise him, the best I knew how. I wanted Jonathan to have compassion, love, understanding, empathy. I wanted him to be able to see the good in others, to have faith, and to always believe that there is a reason for everything. Those qualities he has had from the start because God knew he would need them in life, and use them during his most difficult times. To be a Mom is the GREATEST joy I will ever feel in my heart, and the love I have for him is undeniably the strongest emotion in my soul. ❤️

    I want to wish everyone a Happy Mother’s Day. May today and always,  you feel loved and appreciated. 

    Thank you for reading.

    Thank you for taking the time.

    Much love,

    Jonathan Kolp’s Mom ❤️