Payton's PET/CT and Cardiac MRI Results and Nephrology Visit

Payton saw her new nephrologist and the heart transplant team at the Cleveland Clinic for some tests. Instead of a cardiac biopsy and an angiogram, she had a PET/CT rest/stress test of her heart and a cardiac MRI. We are still waiting for the results and the transplant team will call in a few days.

Payton is very happy at the Cleveland Clinic. The hospital is very efficient and she feels much better. She's relieved that her doctor is going to try to stop further damage of her Chronic kidney disease and deal with this anemia.

Payton's stress PET/CT scan and cardiac MRI came back very good! Negative for ischemia. No valvular anomalies. Her ejection fraction is at 74%. The heart transplant team and nephrology want to decrease Payton's cyclosporine to 50 mg at night and 50 mg in the morning and repeat labs in two weeks. However, her LDL cholesterol level is high so they want to increase pravastatin 40 mg daily.

They will see her back in six months. Thanks for the prayers!

Payton's Transfer to Cleveland Clinic

BIG UPDATE:

Today I officially transferred to the Cleveland Clinic! We stayed at the Holiday Inn on the Cleveland Clinic Campus and then went to get labs, ECG, X-Ray, and then up to the new transplant doctors and nurses. We spoke to the doctor and talked about my history: Donor Specific Antibodies and my kidney disease caused by my medications that prevent rejection. He was very pleased of how well I am doing and how active I am. He told me that they will no longer biopsy me unless it's as needed. They do stress test using a MRI and sometimes echo instead. They work closely to the kidney transplant team at the Cleveland Clinic so I will work on transferring my nephrology care to the Clinic as well. He will see me in six months. I also got to talk to my surgeon who did my transplant at Cincinnati Children's on the phone. I told him all the great things I've been doing and can't believe it's been 9 and a half years. Everyone was so nice, helpful, and understanding! I am SO lucky to have one of the best hospitals in the world a couple hours away!!

Overall, my donor specific antibodies are stable, my kidney disease has stayed the same, and they will work on trying to lower my goal levels with my cyclosporine to help my kidney function.

#P4P

Payton's Biopsy Results (March 8, 2021)

Payton has 0 rejection!!! Labs in a few weeks (medications were a little high), coronary arteries and cholesterol levels are fantastic, and kidney function stayed the same! Thank you everyone for the prayers! Clinic in four months!!

Payton's Biopsy Results (March 2, 2020)

Payton’s biopsy went really well. She stayed awake the entire time with no sedation. Her coronary arteries look great with no changes prior to last year. The results showed that Payton has 0 rejection!!

Blood draw in two weeks, clinic in four months, and biopsy in a year!

Payton's Biopsy Results (April 22, 2019)

PAYTON HAS 0 REJECTION! WOO HOO! No changes to her coronary arteries either! Blood draw in 2 months, clinic in 4 months, and a biopsy in a year! Thank you everyone for your prayers!!

Payton's Biopsy Results (April 2, 2018)

Back to the drawing board. Payton has 1b rejection. What the doctors want to do is decrease cyclosporine since it’s more damaging to the kidneys and increase the everolimus bit by bit. They want a blood draw next week and have clinic in 4 months. The good news is that they will allow Payton to get annual biopsies once a year. Please pray for Payton!

#P4P

Payton's Biopsy Results (April 18, 2017)

PAYTON HAS 0 REJECTION! THANK YOU ALL FOR THE PRAYERS! It has been YEARS since Payton had a 0. They want a blood draw in 6 weeks and another biopsy in 6 months. However, the transplant team might push it out to a year.

#P4P

Payton's Biopsy Results (October 17, 2016)

Good news! Payton's results came back, and she's now back to a 1b rejection. Still not at a 0, but at least it didn't go up. The doctors are increasing cyclosporine, and giving Payton a biopsy every 6 months so Payton can have a rest and a break. Please keep praying that Payton will get a 0!

#P4P

Payton's Make-A-Wish

Payton had her Make-A-Wish trip to London, England this week. We went everywhere from the Harry Potter Museum, London Eye, Buckingham Palace, Tower of London, and an afternoon tea. She had so much fun!! She even got to shop. We would like to thank Make-A-Wish foundation for this wonderful trip. It helped her forget about her medical issues and was stress free. Pictures are coming up!

Payton's Biopsy Results (June 6, 2016)

Payton's rejection went up to stage 2. Doctors were expecting this to happen with all the 1bs she's been having. Dr. Chin wants Payton to keep taking the cyclosporine and wants to wait before doing anything else. Payton's everolimus is high and the doctors want to keep it for now. Biopsy is in another 4 months. Payton is just tired of these biopsies and just wants a break from all of this. Labs are in 2 weeks. Please keep praying for Payton!

#P4P

Biopsy Results (February 15, 2016)

Her pressures on her biopsy looked good. But her blood pressure is still elevated, but we hope it is just the cyclosporine. We won't get the biopsy results tomorrow. Payton is feeling dizzy and just wants to sleep. She ate chicken fingers, vegetable broth, fruit salad, and 3 cans of sprite which is a good thing! We are still at a 1b rejection, even with the cyclosporine. Doctors won't change medications, but want labs repeated in 4 weeks. Doctors think she just needs to adjust the new medications. Clinic is in 6 weeks and biopsy will be in 3 months. Please keep praying for Payton.

Payton's Biopsy Results (October 19, 2015)

Payton is still at a 1b rejection. The team decided to split her Tacrolimus to 1.5 mg in the morning and 1 mg in the evening. The good news is that Payton is off steroids and the rejection has stayed the same. They may make other changes to her medications when her Immuknow comes back. They want to redo labs next Monday get a CK for her Lipitor. They think that the leg cramping may be from the Lipitor. They will see Payton in 2 months for clinic and 4 months for a biopsy. Please continue to pray for Payton. We appreciate the support and prayers that we receive.

Payton Starts High School!

A new beginning awaits! Payton had her first day of high school today! She was really nervous at first but she had a senior buddy that took her to all of her classes. She got to meet all of her teachers, new and old classmates, and even became friends with some of them. She feels better of how the teachers know about her heart transplant and how they know to be very cautious with her. She is still anxious of what will happen if she misses school because of all her hospital visits. But when she came home, she seemed really excited about what they talked about during the school day. She is also taking a work out class to keep her in shape and keep her new, healthy heart strong! She is looking forward to running and lifting weights. Payton enjoys school very much because there is so much to learn and many opportunities!

Update on Payton (July 29, 2015)

Well, we can't believe Payton will be starting high school in a few weeks as a freshman. We are all anxious for her but positive she will do well.

As far as Payton's health, her potassium and magneium levels are low. One of Payton's anti-rejection medications has been eating all the magnesium and the potassium. The doctors put both of these levels on a watch list to make sure if there's any changes such as if it's getting lower or higher. We will have to keep getting blood draws to check on that. The doctors raised her potassium-citrate because they are worried about Payton having other cardiac issues and some forms of cancer since Payton is taking a lot of immunosuppressants.

We went to the GI doctor and they think the acid reflux can be caused by chronic regurgitation or an irritation to the stomach and esophagus called Eosinophilic esophagitis which is called by the drug, prograf. During one of Payton's biopsies, if we have approval by the transplant team, they will put a probe through Payton's nose and down to her stomach and see what is going on. During this procedure, they will give Payton antibiotics so she doesn't get an infection from the probe. Another option they will do is scope Payton's throat.

Payton will have clinic on August 12th. Until then, we will update you on what's the plan.

Immuknow (July 14, 2015)

Great news! Payton's Immuknow levels came back and she is getting too much immunosuppression therapy. This mean she is off of steroids completely! She is so happy right now. The transplant team will continue to watch the Immuknow levels over time with her biopsies. Please keep continuing to pray that Payton's rejection will go down to a 0 in the future. Thank you so much for the prayers and support!

Payton Returns From Camp Joyful Hearts (June 26, 2015)

Payton had a fun time at camp! She had most of her friends in her cabin from last year and even made new ones! She swam with her friend, Marie, went to the Nature Center and saw different animals, learned education about different heart defects, transplants, and dissected a cow's heart! She even saw a hummingbird during her stay! She was so happy and cheerful to be with her friends that she hardly gets to see. Her friends kept complimenting how Payton was so hilarious and how she never lets anything bring her down.

Payton's counselor ran the Heart Mini Marathon back in 2012 and was so excited to see Payton! At the end of camp, she gave Payton a card saying how strong and inspirational she was! The nurses from UC Hospital and Cor Vitae were so excited to see Payton and made Payton a bracelet, marshmallows, and played games with her such as Hangman, Tic Tac Toe, and MASH. They talked to her about how she was doing and how camp was for her.

Payton is so sad that camp is over, and she will have to wait until next year. She said that this was the best year of camp that she ever had!

Camp Joyful Hearts (June 21, 2015)

Today, Payton is leaving for Camp Joyful Hearts! What a wondeful Father's Day gift for Payton's Dad! Payton will be with other children that are Payton's age from the Cincinnati Children's Heart Institute who had heart transplants or have other various heart surgeries or defects. She is so excited to reunite with her friends! So many of her heart friends live so far away. She will be able to talk about the stuff of what she's going through that the other kids would understand. This will be her second year that she will attend this year. She will return home this Friday. She said she's going to try to update us for the next 5 days, but she's not making any promises. She will bring a camera to camp and take pictures and videos of what she had experienced! Have fun Payton!

Payton's Biopsy Results (June 16, 2015)

Payton is still at 1b rejection. Currently, Payton is experiencing chronic rejection. However, the transplant coronary artery disease is approaching, but it's very minimal from the earlier biopsy back in April. The doctors aren't concern about this yet, but keeping a close eye on her. This is usually the cause of 2nd transplantation. The echo of Payton's heart function is still good. The Immuknow levels that Payton got awhile came back and in range. The transplant team drew another Immuknow and that will be a couple of days to get the results back. If the Immuknow levels come back good again, she will be off steroids. She will have clinic in 2 months, and a biopsy in 4 months. They are giving Payton a break from all the biopsies.

Please keep praying that Payton will eventually accepts her new heart. As you may know, this is not very easy for her to go through, and the doctors predicted that this is a little more serious than it sounds.

Payton's Clinic Visit (May 13, 2015)

Whew! What a week it has been. Last Wednesday (May 6), Payton had clinic at Cincinnati Children's. The doctors have raised Payton's Prilosec (an acid reflux pill) and put Payton on potassium citrate and hydrodiuri (a diuretic) to help Payton's bladder. They took her off the other bladder medicine, Ditropan, because it was making Payton's bladder worse. The good news is, Payton is getting better sleep at night! She also got her first set of the pneumonia shot. There are 2 shots total. The nurse said that there has been many cases of heart transplants catching pneumonia.

The doctors also ordered Payton some new blood work to be done, such as a Cellcept (an anti-rejection drug) level and an ImmuKnow level to see if she is not getting enough immunosuppression therapy or she is getting too much of it. This blood work can possibly help her get rid of her rejection and pinpoint where the doctor's want her at. The doctors at different hospitals said that they use this technique to adults if they have been having a lot of rejection. We haven't heard from the doctors yet of what their next step is, but her next biopsy is on June 15th. As of right now, the doctors aren't planning to put Payton on cyclosporine. We hope her rejection status is down to a 0!

Payton's Biopsy (April 6, 2015)

April 2: This Monday, April 6, Payton is having her annual biopsy at Cincinnati Children's. This is a long and comprehensive biopsy. The doctors will be looking at her smaller coronary arteries to see if there's blockage and take pieces of her heart to see if there is any rejection. Tonight we are going to the Liberty Campus to get a chest X-Ray of Payton's heart to see if there has been any changes since last year and get some blood work done.

We hope you have a "Hoppy" Easter and please hope that Payton's rejection status is down to a 0.

April 6: Payton is now in recovery. She will have to lay flat for 4 hours straight. She is in so much pain because they stuck two catheters inside her groin while she stayed awake in the cath lab while the doctors were pulling heart tissue out. The doctors also gave Payton a lot of fluids and she is in pain in her bladder, which is a problem. She's been dealing with this since she was 4 years old. She has seen the urologist and they gave her medicine because they think she has a sensitive bladder, but the medicine seems like it is not working for her. She also did a bunch of urine testing and they think Payton has too much calcium in her urine, which can lead to kidney stones.

The good news is that her coronary arteries have decreased by 20% since the last time. One of the nurses also gave Payton some really cool pink neon socks! We will get the biopsy results tomorrow!

April 7: Payton is still battling at status 1b rejection. Dr. Chin is going to talk with other physicians at different hospitals about how to get rid of Payton's rejection. Payton has been having rejection since July of 2013. Dr. Chin will talk to the transplant team about putting Payton back on cyclosporine, a powerful anti-rejection drug. Payton will have clinic next month and a biopsy a month after that. We will keep you updated!

Heart Walk (March 15, 2015)

Payton and her family had an amazing day down in Cincinnati. She visited her heart donor and spent some time at the cemetery. Many people recognized Payton at the Heart Walk from when they saw Payton on the news in the past. They all went up to her, talked to her, and even walked with her. Payton will be celebrating her 3-year heart transplant birthday this Wednesday, March 18 and then her 15th birthday on March 28. We cannot thank the donor and his family enough for the gift of life he gave to Payton.

Payton's Biopsy Results (January 27, 2015)

Payton is still at a 1b rejection. They are lowering her Everolimus and increasing her Myfortic. Payton is still confident to get a 0 in the near future.

Payton is Admitted to the Hospital (December 19 - December 22, 2014)

DECEMBER 19: Payton is being admitted to the hospital in Cincinnati. She keeps vomiting every time she eats and drinks. She is dehydrated, and the doctors are giving her fluids and they are doing further testing tomorrow to see why she keeps vomiting and why she keeps having palpitations with tachycardic heart rates. The doctors also worry that Payton is vomiting up her anti-rejection drugs. The doctor did an echo and everything looks fine.

DECEMBER 20: Last night the doctors gave Payton some magnesium and potassium bolus since her levels came back really low. Payton is trying to drink, eat, and take her medicines, but she just keeps vomiting it back up. The doctors took her off of Cellcept and put her on a drug that works similar to Cellcept, but less irritating to her stomach. The doctors ordered an x-Ray of her stomach earlier. They are trying to give her a medicine that will keep her from throwing up. So far, nothing has worked for her. They are keeping her for another day and monitor her. 

DECEMBER 21: Payton has to stay another day at the hospital. The doctors are thinking about releasing her tomorrow. She finally had a bowel movement and she got to walk around the hospital and to the cafeteria. She had chocolate pudding and a bottle of water and she was able to keep it down. The doctors are concerned with her tacrolimus levels since it is low from all the vomiting, and they are concerned about rejection. Their next goal is to bring the tacrolimus up and hopefully her levels are back to normal by that time tomorrow. We're at the next step of going home! 

DECEMBER 22: Payton is coming home! We would like to thank God and for all for the prayers and support we had received from family and friends! She is super happy to be coming home and be able to see her doggy, Lucy, and her family! She said this was the best Christmas present that she has ever received!

Payton Was Admitted to the Hospital (December 16, 2014)

Payton was admitted to Cincinnati Children's Hospital. She was in tachycardic with palpitations and she had shortness of breath. CCHMC wanted to do more testing such as blood work and an echo. She was discharged on December 17 because the doctors said that the echo looks good and no signs of rejection. They are putting her on Cellcept, an antirejection drug, just to be safe. She will have clinic in 3 weeks and a biopsy 6 weeks after that.

Payton's Biopsy Results (October 13, 2014)

Payton's biopsy results has stayed the same as prior biopsy of October 13th as 1b rejection. She is still on 5mg of steroids and the Transplant Team have increased her prograf and everolimus, which they're both anti-rejection drugs. The rejection has stayed the same, but the good news is that the rejection didn't increase. Payton still remains positive, as she always does.

Payton's Biopsy Results (August 11, 2014)

Payton's biopsy results came back and there is still a little bit of rejection. The biospy results came back as a 1b, but the good news is that the rejection has decreased. They are putting her back on steroids with 5mg once a day. Payton is a little bit upset about it because she just lost all of her steroid weight and she's afraid that she will gain all the weight back. She is one tough cookie for going through this!

Payton is Back to Playing Soccer! 2014

Payton is super excited - this fall she is playing soccer for The Catholic Youth Organization for Incarnation. Payton is excited about her team mates and she hopes that this year will be great for her and everyone else. Payton is a little nervous of how she will do since she hasn't played soccer since 3rd grade due to her illness. With her old heart, she would get tired and she would have trouble keeping up with everyone. She remembers how the coaches would be concerened about her and how they would ask if she needed a break or if she was okay. The first year of her heart transplant, the doctors explained that the first year Payton couldn't do soccer because she was still a fresh case and that they were concerned about her chest since it was weakened. Payton was disappointed about the news, but she knows that she can still follow her passions and dreams.

Payton hopes that no coaches would be concerned about her or give her extra attention. She wants to be treated and seen as a normal kid. I know with her new, healthy heart, I know Payton will do great and she can finally enjoy playing soccer without any trouble or worries! 

Comments

Payton, you are an amazing young lady... I know both of your parents love you with all there heart... keep smiling....