“There is a Superhero inside all of us. We just need the courage to put on the cape.”

Reality…I am not, nor will I ever be a Grandma. Never say never, because as I’ve seen, life can change JUST. LIKE. THAT.

I have spent my entire life as a parent wishing the most for my child. Not just a good life but a childhood that did not consist of fighting for your life, hospital stays, blood transfusions, life on a machine, dialysis needles or pokes.

When Jonathan was 15 months old, he received his first port a cath. I remember thinking, my sweet boy. He will be scarred for life with that. His perfect little body, scarred. Then I remember thinking the port will save his life. His precious life is more important than what people may think. With every surgery, the same thing went through my head, and then after the 5th or 6th surgery, it became clear. Those scars, those many surgeries were his battle scars. They didn’t define him, but they proved how incredibly brave he had been. I know NO ONE in this life who will ever compare to the ultimate bravery and strength my Jonathan has endured. Those scars show his strength. The scars show that he has withstood pain and fear than no child should ever face. But yet, he faced them head on; like a superhero. Who can say that? No one I know.

Jonathan will always be my superhero. He continues to fight, not so much for his health since he received his gift of life, but for those he loves. His father who is battling cancer. His friends who may not always be accepted by people, his Mother, me, who he protects wholeheartedly.

So, I may not have a grandchild or will have one in the future, but what I do have is so much greater. I have a son who thrives because he has seen life pulled from his grips. I have a son who loves me unconditionally, not for what I can do for him, but because he knows the true meaning of love. I have faced fear head on and been brought to my knees with the thought of not having my son with me. I’ve watched him fight to live. I’ve prayed for life. And guess what? He has life!!!!

Jonathan will always be my driving force. He will always be my greatest accomplishment. The purpose of this blog is to not only remind myself of what he has overcome, but to remember my fears, my joys and my happiness. The day God made me a Mom, was the day my heart became full. ♥️

I will always be thankful and eternally grateful for his donor family for giving Jonathan a chance at life. 💙💚💙

If you haven’t already, please consider becoming an organ donor. You CAN BE SOMEONE’S HERO. Please register at ://www.donatelife.net

Happy 4th Kidneyversary…💙

Looking back at the last 4 years, I still need to pinch myself to make sure it is all true. 4 years ago today, my Jonathan received the greatest gift.. The gift of life.

Jonathan… right after they brought him back to me..💙

Before his kidney transplant, we lived a very different life. 5 days a week, 3 1/2 hours a day, I cleaned his blood because his kidney function no longer existed. An Ultra Rare Disease, Atypical Hemolytic Uremic Syndrome destroyed his kidneys, which caused him to have multiple strokes, created an imbalance of phosphorus and calcium, so he had soft bones that could not grow. He was anemic the majority of the 20 years he was on dialysis. He went into heart failure.

What people do not know is that dialysis is not a cure for those that lose their kidney function…. it is a temporary treatment, which the mortality rate is around 5 years. Jonathan spent 20 years tied to a machine to keep him alive. He spend 20 years watching what he ate, because his body could not rid the excess of potassium, phosphorus, magnesium, calcium, or anything else your kidneys metabolize. He drank no more than 12 ounces in a day because that fluid could accumulate around his heart if I didn’t pull it off during dialysis. Epogen injections tried to keep his red blood cells going, but that was always difficult since your kidneys tell your bone marrow to produce the red blood cells. Hypertension was always difficult. Your kidneys produce the hormone to control blood pressure. Jonathan was on multiple blood pressure medications, had no salt in his diet, and we checked his blood pressure every 30 minutes on dialysis, then every morning, noon and night.

For a child on dialysis, (Jonathan was 4 when he started) it was extremely difficult. No sleep overs. No contact sports. No McDonald’s, or fast food. No sense of a childhood. Jonathan was extraordinary child, and never complained, and showed true heroism and grace during every procedure, surgery, doctors appointment, dialysis clinic appointments, and ER visits. When he had his bilateral nephrectomy, Jonathan told he not to worry about him. He told me that he HAD to come back to me to take care of me. Unselfish, and thinking of others. I cried many nights wanting a normal life for my son. I wanted the best for him, and was willing to do whatever it took to create a good life for him. I controlled the things I could, and became the helicopter Mom.

I write about these things not only to put everything into prospective, but to remind myself of then and now. Have you ever looked back on something you’ve done and said to yourself, “How did I possibly overcome that?” Well, when Jonathan’s life plays like a movie in my head, and it does EVERY DAY OF MY LIFE, I look back and think… how did we overcome such obstacles? The answer is simple… HOPE.

The day after his surgery..💙

My son is beautiful. He shines like the most brilliant star in the universe, and I believe he was given this life because God KNEW he could live it.

Jonathan 💙

Jonathan after being diagnosed with aHUS..💙

Jonathan before dialysis..💙

Jonathan 💙

Jonathan going back to school after suffering multiple strokes..💙

Jonathan’s senior picture..💙

Jonathan & I… DisneyWorld 💙

Jonathan, Currie & Mary.. His babies 💙

Jonathan today 💙

Life today, even the world today, is much different than it was when Jonathan was on dialysis. His life is different. He is living, thriving, doing the things he loves without worrying about being on a machine. We certainly have our moments when we know that Jonathan is not textbook, and likes to keep his doctors on their toes. In December of 2019, his hand started to bother him. He thought he may of hit it in the middle of the night. It was swollen, and very painful. After numerous doctor visits, ER visits, we was finally admitted to UT Southwestern. At his bedside, they did an emergency biopsy of his hand, cleaned it out and waited for results. He had an ultra infection, very much like tuberculosis in his hand. The team including the vascular surgeon felt his hand wasn’t healing due to his fistula. It was causing “Steal Syndrome”. That lifeline that we used for dialysis was no longer needed, and needed to be litigated, which means “ tie off”. It was causing the hand not to receive any blood flow. He had to have surgery to tie it off and soon his hand started to heal. Jonathan needed his hand to be cleaned daily and had to have a course of antibiotics for 4 months. He once again made it through. He did, however, lose the tip of his ring finger, but that was better than losing so much more.. his life.

Hope continues to do awesome. His labs have been outstanding and Jonathan continues to take care of himself. He now lives with his Dad, and we both now live in the same city. With COVID-19 going on, I very rarely see Jonathan. I work as a pharmacy technician, dealing with the public, so that would be putting Jonathan at risk. Thank God for FaceTime, as I can’t imagine not seeing his face.

I will forever and be eternally grateful to his beautiful donor family. They gave the most incredible, selfless gift to Jonathan… The gift of life. Their decision saved his life. If you haven’t yet, please, please make the decision to safe a life and be a hero. You can sign up at www.donatelife.net

Hope reminds us that life is so endlessly beautiful…..💙💚💙

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

Much Love,

Jonathan Kolp’s Mom ♥️

3 Years with HOPE

1095 Days Post Kidney Transplant…💙💚💙

“Gratitude makes sense of the past, brings peace for today, and creates a vision for tomorrow.” ~Melody Beattie

I loved this quote way before my Jonathan received the gift of life, 3 years ago today. It is definitely one of my most favorite quotes, and brings so much clarity in our lives right at this moment.

So much has changed in 3 years. Jonathan and I would have conversations about change before his transplant. We would say, “if it ain’t broke, don’t try and fix it.” Or, “don’t rock the boat.” We we’re talking about dialysis and our routine of 5 days a week. Our “No worry, Thankful Thursdays”, those days were special because we had no medical on Thursday’s. We hung on to schedules, because that’s all we had control over. Thursday’s and Sunday’s were our days off. Ironically, Jonathan’s Transplant surgery…was done on a Sunday.

Doing dialysis was a full time job. I loved the time that we were able to spend together, even if it was me praying the entire 3 hours of his treatment, because let’s face it….I felt the world on my shoulders making sure I did everything correctly to keep my boy alive. What he may not know, is that he was the one keeping me going.

I want to take an excerpt out of the blog I wrote about the day he received the call…

July 30, 2016 at 4:20 p.m. Jonathan received “THE CALL”.

89 days on the transplant list, we were extremely surprised to get that call. A beautiful, hot day in North  Texas, Jonathan was on dialysis, and had an hour left. His phone rang ~ a call from Kansas. “Jonathan Kolp?” “Yes, this is he.” “Can you confirm your date of birth?” As Jonathan recited his DOB, we were told of a kidney match. He continues with the information that it was from someone young, not high risk, and that his Tranplant Team thought that this was the perfect kidney for Jonathan. He was asked, ” Do you want to accept?” 

Jonathan’s eyes were the biggest I’ve ever seen them. He signaled to me, and I said to follow your heart. He said, “I accept.”

With the instructions of getting to UT Southwestern by 6 pm, we proceeded to finish dialysis, which worked out perfectly since the surgery would be on following day, Sunday, which is his day off of dialysis. We gathered the bag we had previously packed, he snacked, and we proceeded to head to the hospital.

That moment, everything changed.

So, you may ask what has changed?

Jonathan IS LIVING life. He lives in Dallas with his best friend, manages his infusions and his doctor appointments. He will be going to school in the fall, and is thriving. His labs are beautiful, creatinine .08, BUN, 15, both normal, and with labs like that it’s obvious he takes care of himself and HOPE.

Although we live apart, not a moment goes by that he is not in my thoughts. I’ve landed the “helicopter”, slightly, as I still fill his prescriptions. 😊

I don’t want today to go by without acknowledging that without organ donation, without the selfless decision of Jonathan’s donor family, that beautiful and painful decision gave Jonathan life. I will always be eternally grateful to them.

We came across this beautiful poem and Jonathan wanted to share this to his donor family…

So Hope Will Live

“We are strangers now a family, forever joined~ not by choice ~ but joined by need and joined by pain: different lives, but common voice~ a cry for love, a cry for life, so hope will live, eternally, born of sadness irony. Life will never be the same ~ not for you and not for me. One you love, who shares your name, now is gone, but I remain: a second chance, a new domain, a gift of life that lives in me ~ strangers now a family.

Know that I am grateful for the life you gave to me. May my life give you light wherever you maybe. And may my life bring comfort from the pain that hurts you so: we are strangers now a family, wherever we may go. And may the life that lives in me shine a light so all can see, that life goes on ironically, when we choose to donate life, so hopeful live, eternally.”

~ Daniel Mark Extrom

Please consider being an organ, tissue and eye donor. Please register at www.donatelife.net

Happy 3rd Kidneyversary, my sweet Jonathan.

May God continue to bless you and keep you safe. ♥️

Thank you for reading.

Thank you for taking the time.

Much love,

Jonathan Kolp’s Mom ♥️

Keeper of Dates…

As I’ve said many times before, I am the keeper of dates. I believe it is God’s way of reminding me how we’ve overcome many obstacles in our lives.

June 15th is one day I will never forget. 26 years ago, Jonathan was diagnosed with Atypical Hemolytic Uremic Syndrome. My only child. My sweet Jonathan was in bad shape, and what would become the beginning of his life of fight. A day that changed our lives forever.

Here are some astonishing facts about his life…

• He was only one of 40 in the United States diagnosed with aHUS in 1993.

• He has received 145,800 units of FFP (Fresh Frozen Plasma) in his life. One of the reasons I appreciate those who donate blood.

• He has had 500 hours of Plasmapheresis.

• He has had 52,195 hours of Peritoneal dialysis.

• He had MULTIPLE STROKES in 1999, with NO EVIDENCE of it ever occurring.

• He had 3,860 hours of Home Hemodialysis, from 2009-2016

• He was gifted with the gift of life, a Kidney Transplant, July 31, 2016 💙💚💙

People and events have a way of putting life into perspective. My son, has made me appreciate the little things, and has given me purpose. His road has been tough but he has overcome so much and his spirit still shines ever so brightly.

I thank God every day, for his Miracle of Jonathan in my life.

He continues to thrive and even though we are miles apart, I continue to be in awe of my son. Daily.

He certainly has and continues to live up to his namesake….

Truly, a Gift from God. ❤️

Thank you for reading.

Thank you for taking the time.

Much love,

Jonathan Kolp’s Mom ♥️

Happy 2 Year Kidneyversary!

“Without the organ donor, there is no story, no hope, no transplant. But when there is an organ donor, life springs from death, sorrow turns to hope, and a terrible loss becomes a gift.” ~UNOS

Today we are 730 Days Post Kidney Transplant. Exactly 2 years ago, Jonathan underwent almost a 4 hour surgery, that gave him the gift of life.

Jonathan and I had a very candid conversation about today, and his wish was to show gratitude to his donor and donor family for their selfless decision to save his life.

He wanted to share his letter to them, that he wrote in 2016, and to bring awareness of organ donation…

Please, consider being a superhero, and save a life. Become an eye, tissue and organ donor….. www.donatelife.net

💙💚💙💚💙💚💙💚💙

Dear Donor Family,

My name is Jonathan. I am 24 years old and for 20 years of my life, I was on dialysis. I’d like to share my story with you. At 8 1/2 months old, I got very sick. My parents took me to the doctor, and after doing some tests and bloodwork they were told that I was in kidney failure and to get me to the closest Children’s Hospital. I was diagnosed with an ultra rare disease called Atypical Hemolytic Uremic Syndrome. At the time, I was 1 out of 40 in the United States. In order to save my kidneys, I had to start FFP (fresh frozen plasma) infusions daily. After spending two weeks in the hospital, they sent me home. The doctors told my parents that this could happen again and it did, two months later. Over the next two years, I had over 20 relapses. These relapses continue to damage my kidneys and I finally lost my kidney function at age 4 and started dialysis. We did this at home, with my mom being my caregiver. I had many issues with my health over my childhood including strokes and comas, but through it all, I came back stronger and ready to fight.

I grew up happy and loved. The only thing that was different was the fact that I have been dealt a hand that I sometimes didn’t understand. My mom always told me that I had a purpose, and that we may not know it now, but in time it will be revealed. I was home-schooled because my immune system was in overdrive. Any illness could cause my disease aHUS, to flare up, and damage another organ. I was able to attend my senior year of high school, become involved with student council, partners PE, and help with the Special Olympics. I personally deal with life through humor and making people smile. I became a mentor for those less fortunate, and for those children dealing with the same disease as me. Over the years it was always brought up about a transplant, but I was never eligible because with no medication, the aHUS would destroy a new kidney. My life would be tethered to a machine forever. I did peritoneal dialysis for 11 hours a night seven days a week for 13 years. That eventually stopped working so my Mom and I were trained to do hemodialysis and we started that in 2009. For 5 days a week, 3 hours a day, my Mom cleaned my blood. I was unable to go to college or get a job because I was attached to that machine. I had restrictions with fluid intake and foods because without kidneys, electrolytes and fluid can build up and cause damage. I took care of myself as I followed my doctors orders. It was the only control I had.

After 18 years of plasma infusions, in 2013, a medication was discovered to help stop the disease process. My life started to change right then. I was able to start this medication and I had the hope that I may one day be eligible for transplant. This new life-saving medication will be something I have to take for the rest of my life, and that is OK. I get a transfusion every 14 days, and fortunately, it has stopped my disease from flaring up and causing damage to other organs. After being on the medication for two years, I was thinking about my life and how it would change getting a kidney transplant. I wanted to live a normal life. I wanted to pursue my dreams. I wanted to be away from a machine that kept me alive for 20 years. In December 2015, I made that decision. After many months of tests, I was finally placed on the list. On July 30, 2016, my life changed forever.

A beautiful life was taken from you, and because of your selfless decision, despite the enormous amount of pain in your heart, you decided that another life was worth saving. That life was mine. For the first time, I have a normal life. I’m able to eat whatever I want, drink water, and finally, I am no longer tethered to a machine and depending on that machine to keep me alive. I named my kidney HOPE because without HOPE, I would never have started my journey. I want you to know, that I will forever protect HOPE with everything I have. I will eternally be grateful for you and the gift you have given me, and I hope that hearing my story has somehow filled a small part in your heart that you have lost.

Thankfully and Sincerely,

Jonathan

We have so much to be thankful for. Jonathan is healthy. HOPE is doing amazing, and the amount of gratitude in our hearts is overwhelming. I know I say this so often, but I will never have the words to adequately thank his donor family, and everyone who has and continues to pray for Jonathan.

So incredibly blessed.

a Hero…

“An ordinary individual Who finds the strength to persevere and endure in spite of overwhelming obstacles.”

~ Christopher Reeve

Happy 2 year Kidneyversary, My SUPERHERO.

I love you.

Thank you for reading.

Thank you for taking the time.

Much Love,

Jonathan Kolp’s Mom. ♥️

You don’t have to be big. You have to be remarkable.

Today marks 690 days Post Kidney Transplant. Yes, I still count every day because some days, we still have to pinch ourselves that this is real….

The last time I updated this blog, we were saying goodbye to 2017 and welcoming in 2018. The only excuse I have is that Jonathan has been busy living. There have been a few hiccups, and a few times that Jonathan has stumped the doctors, but that wouldn’t be in true “Jonathan fashion” if he didn’t.

So, to update, Jonathan has been doing awesome! Hope is doing great, with his creatinine hanging around 0.8, which is still unbelievable! Louie is also happy with no issues at all! Jonathan’s blood counts still amaze me as he is no longer anemic, and has more energy than me!

We have had some other issues, though….

Back in February, Jonathan was walking his dog, Currie, and she twisted her leash, and caused some injury to Jonathan’s hand. I took him to the local urgent care, where they did X-rays to make sure nothing was broke or fractured. Jonathan had some significant pain, but the Doctor thought that this was more of a ligament strain, and sent us home. The pain continued and Jonathan had a routine appointment with Dr. L (Transplant nephrologist), and we asked her to check it out. His hand was swollen, which is not uncommon since this is his right hand, and it is also his fistula arm. He also has some cracking going on, (dry skin) which again, not uncommon since it was cold and dry, and putting lotion on your hands isn’t a priority for a guy. 😁 Being cautious, she put in a referral to see the Orthopedic Doctor and a Dermatologist.

His first appointment was with the Orthopedic Doctor. X-rays were taken and he agreed that there were no broken bones, but he also wanted to make sure there wasn’t any bone infection happening, and thankfully there were none. He suggested that Jonathan soak his hand in 1:1 solution of hydrogen peroxide and to clean his hand with Hibiclens, an anti microbial soap. We would follow up in 2 weeks. Unfortunately, it took longer to get a Dermatology appointment. We had to wait a month.

In the meantime, Jonathan’s hand continues to hurt, and he started to get what looks like lesions on and around his nails, particularly his pinky and middle finger nail. His pinky has more pain and becomes extremely painful. (*a side note…. I believe Jonathan has a very high threshold for pain, as he’s endured many surgeries over the years, and has never been one to take pain medication, but with that being said, he’s also had scratches that he’s flipped out over, so his level of pain on some things can be confusing.) He is able to take some pain medication at night since that is when it hurts the most. He finally gets seen by the Dermatologist, and no surprise, another Doctor needs to be called in. After the Doctors consult with each other, they come to the conclusion that the lesions on his fingers, all 5 of them, only on his right hand, are warts. WARTS!

What??? Jonathan and I both look at each other, dumbfounded, as the head of Dermatology explains that warts are a viral infection. With Jonathan’s immune system on lock down, this is a result of that. I have to say that to me, they look like turtle shells around and IN his nails. (Jonathan says no picture) And no, it’s not from handling frogs, or from not washing your hands. The reason it’s only on his right hand is because of his superhighway fistula, which pumps a significant amount of blood to that area. So what do we do? The Doctor tells us they are very tricky to treat, but we have some options…

• Chemotherapy injected into them
• Cryotherapy (apply nitrogen to the warts)
• A solution of 40% Salicylic Acid

We asked that Dr. L be consulted about the chemo, and Jonathan decides to try the Cryotherapy on his thumb, which is the least affected by these warts.

His Doctor blasts his thumb with the nitrogen and then starts to scrape at the wart, removing what she can before Jonathan can’t take the pain anymore. She is able to remove some, but that’s all he can tolerate. Jonathan decides to try the Salicylic acid, as well, but that can only be ordered through a pharmacy, which I can do, since I am now a Certified Pharmacy Technician. 😊

We will continue to do this technique until every last wart is healed…

On a happier note, the beginning of this month, Jonathan had his very first road trip! We had one of our Atypical HUS Family Conferences in Nashville, Tennessee and I flew, and Jonathan decided to drive with his best friend Chris. Both of us nervous (ok, me more so than him) I watched my son drive away, and both of us are smiling, but my heart sinks, because remember, I am the “helicopter” Mom. Thankfully, that weekend, I finally landed.

Jonathan was once again, able to share his story of hope, and connect with those fighting the same disease, courageously!

Jonathan doing this gave me such joy in my heart and it was made possible by again, his donor family.

Not a day goes by that I don’t think about them, about their precious child, and about the incredible gift they gave my son. I can’t adequately describe what I feel when I see Jonathan living the life he’s dreamed about. It is still so surreal.

Today is the first day of summer.

Summer ☀️ Solstice. The longest day of the year. I’ve said this many times, but Jonathan’s circumstances in life have made me appreciate the now; the moment. I think this has been his beautiful gift to us.

Even today, when the day is long and I can once again, be eternally grateful for this moment, I will always be thankful for every second that we have been given.

Thank you for reading.

Thank you for taking the time.

Much Love,

Jonathan Kolp’s Mom ♥️

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. https://m.facebook.com/story.php?story_fbid=10159430809140319&id=201231245318

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. 💙💚💙 

www.donatelife.net

Thank you for reading.

Thank you for taking the time.

Much love ♥️

Jonathan Kolp’s Mom