Chugging along just fine!

 

Way past due on providing an update! I am sitting in the same room as when I started writing this blog, but with a much better view of what was to come. Can you believe its been 12 years!? We can't, sometimes it feels like yesterday and other times it seems like it never happened at all. Michael is doing AMAZING! No meds of any kind and blessed to have been part of the study by Dr. Leventhal and North Western Memorial Hospital. This year we found out that the clinical trial was closed and we were so sadden to hear that. Michael, as well as the other participants, were given a gift that was priceless and it would have been so beautiful to see others experience the same. We aren't sure why the trial ended aside from hearing that the living donor kidney program was terminated due to slow pace of phase 3 study enrollment but we pray that it will be picked up again, sometime in the near future. It was and IS Life Changing! The freedom to live a "normal" life is not appreciated enough. Normal is fantastic and we will NEVER accept "normal" as ordinary but as REMARKABLE! What happens now that the trial has ended? Well, Michael will continue to see a nephrologist here in Tampa, as needed. Michael had been getting his blood-work reviewed by the trial team every 6 months for the past 12 years, it feels a bit unsteady (at least for me) to see him cut loose but we have faith in God and we are in His control. He brought us this far and we are so grateful for His faithfulness. 

Link to Government Trial Page:  Click to review information on the kidney trial.

Each day is filled with gratefulness to all those that helped Michael through this, his brother Joe who donated his kidney, is now a grandfather of 4 of the cutest grand babies ever! Joe is still a High School teacher in Canada and has started writing Christian Children's Books, they are absolutely precious and full of the goodness of God. You can purchase one of his books for the child in your life here: Joe Caruso Stories 

I have to give a resounding thank-you to Joe's wife, Heather, my favorite Canadian Sister in Law!! She was supportive and took care of the love of her life right after he donated his kidney, she was a quiet hero who came with her own fears and prayers and did it all with grace, strength, and a beautiful smile that she shared with all. We are truly blessed by her and she will always be our shining star!

 

 

 

 

 

Michael's parents, who live in Canada are doing good.  Michael's step-dad, Harry, happen to come across the study while reading the newspaper in 2011 and Michael will always be grateful to him. He was the catalyst that got this all started and I am sad to say he has been fighting dementia for the last 3 years, his memories have been stolen from him and he no longer recognizes family but he is being cared for and loved just like he cared for those he loved. He and Michael's mom, Anne, cared for Michael right after his kidney transplant in Chicago. Michael was 100% dependent on them for all his needs and we will never forget the sacrifices they endured to help him through his healing. They were warriors and still are. 

 

We'd also like to thank all our family and friends - their love, support and especially the laughs. Being part of this world, is being part of one another's lives - one can't exist without the other and we are always stronger together. We love each and every one of your beautiful faces! 

And finally but not last, we have a new family member!  His name is Macho Capone and he is SPOILED - he is so loving and cuddly and such an incredibly sweet pup! He is a Havapoo being that he is half Havanese and Poodle. Macho fits perfectly to this mutt of a family we have.  :)

We thank you for taking the time to read about Michael's journey, I pray that it gives you hope - assurance that you or your family member are not alone in whatever struggle you find yourself. We all have our struggles to bear, some more than others but at the end, struggles teach us to be better humans, more compassionate, understanding and to appreciate every minute we have on this beautiful globe we call home. 

Happy and Grateful

Hello friends! The last couple of years have been quickly moving along like flipping pages through a calendar. Michael is doing so very, very well. He had no complications from his nephrectomy and healed quickly and perfectly. The scars are barely visible. His surgeon, Dr. Juan Carlos Caicedo, did an outstanding job! We were blessed to have him as one of Michael's doctors through this journey.

Michael and I became grandparents in 2014 and we feel like the luckiest people in the world! Who knew that being a grandparent could be this much fun! Our family is back together after my daughter and her husband moved back from New York in 2015. We couldn't be happier to have them back in Florida.

Our Little Prince (Grand-baby)

Michael continues to travel the world, doing what he loves and enjoying the great blessing he was given! A kidney by a selfless and loving brother, a medical treatment given by a skilled team of elite doctors, a life without any drugs!

We couldn't be more blessed!

Michael's latest book! #1 on Amazon

Michael on Stage in Australia

He reached for his dreams and obtained them....so can you!

The "Face" of Polycystic Kidney Disease

Hello from downtown Chicago! I'm currently sitting in our hotel room, across from me are over-sized windows that show me the hustle and bustle of downtown life as well as skyscrapers that make you bend your neck back just to realize you can't see the very top of them. We are just blocks from Northwestern Memorial Hospital and every so often you can hear sirens from emergency vehicles and car horns  of impatient cabbies. Michael is laying next to me, he is quietly sleeping as he recovers from his nephrectomy. On Tuesday morning Michael had both his native kidneys removed. His kidneys had grown to the size of footballs and were causing him discomfort and pain, as well as extending his stomach out to a point that he constantly felt bloated.....the time to have them removed had arrived.  Even though Michael had a kidney transplant 2 years ago on December 1st, his PKD kidneys were still growing and causing him issues. PKD doesn't really go away with a transplant or even with a nephrectomy, PKD is a disease that can also cause cysts to grow in the liver, pancreas and intestines.  Patients have a higher risk of aortic aneurysms and heart-valve defects. Michael will have to have regular testing for the rest of his life.

Michael contacted Dr. Leventhal in August,  and after discussing symptoms and his options Dr. Leventhal referred Michael to Dr. Juan Carlos Caicedo. Michael flew to Chicago in November for his 2 year post transplant appointment with Dr. Leventhal and to have a consultation with Dr. Caicedo.  During that appointment he was able to proceed with all his pre-op diagnostic testing and confirm a Laparoscopic Bi-lateral Native Nephrectomy surgery date of December 10th, 7:30am. 

What is a Laparoscopic Bi-lateral Native Nephrectomy? Nephrectomy is the surgical removal of a kidney. Bi-Lateral of course means both kidneys. The surgery is performed with the patient under general anesthesia. The laparoscopic approach, which involves the use of a laparoscope (wand-like camera), utilizes three or four small (5-10 mm) cuts or ports in the abdominal area. The kidney is completely detached inside the body and then placed in a bag. One of the incisions is then expanded to remove the kidney.  Patient will require a bladder catheter that is placed once they are asleep and is removed several hours after surgery.

Laparoscopy achieves the same things as traditional surgical techniques and can be used for both radical and partial surgery. 

The advantages of laparoscopic surgery include:

• Shorter recovery time
• Shorter hospital stay
• Smaller incisions
• Fewer post-operative complications

Laparoscopic nephrectomy takes special skills to perform and is not available at all hospitals. The Northwestern Memorial transplant team has vast experience in performing bilateral or unilateral laparoscopic nephrectomy for polycystic kidney disease. Northwestern transplant surgeons routinely perform laparoscopic bilateral nephrectomy for patients with PKD resulting in low morbidity.  

LinkedIn - Juan Carlos Caicedo, MD

We were blessed to have Dr. Caicedo do Michael's nephrectomy.  He was a wonderful surgeon who explained everything to us in detail, making sure all our questions were answered. We felt comfortable in his knowledgeable hands.  Dr.  Caicedo is not only a transplant surgeon but also the director of the Hispanic Transplant Program at Northwestern Memorial Hospital. He is also an assistant professor of Surgery in the Division of Organ Transplantation at Northwestern University Feinberg School of Medicine. He graduated from the National University of Colombia in Bogota, Colombia. Dr. Caicedo completed a three year clinical fellowship in transplant surgery including pediatric and adult kidney, pancreas, liver and small bowel transplantation, as well as hepatobiliary surgery. He has also studied laparoscopic donor nephrectomy and vascular access for adults.

This is an example of port placements. (NOT Michael)

Now that I have shared this chapter in our journey....how about some pictures?!  I have a love of reading, but who doesn't love picture books, right? :)

 At Tampa International Airport 12/09/13

Chicago!

Outside our hotel ~ Ontario Street

12/10/13 ~ Surgery day! Walking to Northwestern Memorial.

Dr. Patel ~ Anesthesiologist

 Part of the team that attended to Michael the morning of the surgery.

Dr. Caicedo explaining the procedure before surgery.

 Smile!  Its show time!

2nd time in this waiting room....1st time was for Michael's transplant. 

Michael's kidneys.  

To remove them, they had to take some of the volume off first...they were actually a bit larger than what is pictured here.

These are the smaller cysts. 

Post-op ~ Michael's nurse was named Noelle...how appropriate for this time of year! 

Michael's 3 port sites and the "?" incinsion where his kidneys were removed from.

Night before surgery | Morning after surgery

Night before surgery | Morning after surgery

Yeah...pretty amazing, right?

We are in Chicago until Monday the 16th, this is when Michael will have his post-op appointment with Dr. Caicedo and then we fly on home. How is Michael doing? Really well, I'd have to say his toughest day was the day after surgery when he had severe gas pains from the O2 they fill ones belly up with when doing laprascopic surgery. He is currently taking Tylenol every 4 hours for minimal pain and no other medications. We couldn't have asked for a better outcome.  

During this PKD journey we have met some amazing people as well as had the blessing to have been treated by some of the best doctors in the country and cared for by some dedicated nurses. I'm certain that we are not alone in this PKD journey, and neither are you.

God's blessings,

Lilly :)

It's Been a Good While

Its been a long time since I have sat down and made time to write an update.  Our lives have been full of blessings and happy moments with lots of new things keeping us busy.  First, I'd like to say that Michael is doing AMAZING!  He looks great and feels great. Michael has been off ALL immunosuppressant drugs since February of 2013.  He is officially now one out of a handful of people in this world living with a donor organ and not needing immunosuppressant drugs.  What an incredible blessing, its quite humbling. Life is "normal" again, and normal can really feel GREAT!  

 

I'll back up a bit to share what has been happening with us in the last year.  Back in July, our only daughter Jilliam got married and moved to New York.  Her husband (Artie) is a Calvary Scout for the US Army (Hoorah!) and he is stationed in the bitterly cold and foreign land (to a Floridian that is) Fort Drum, New York. Planning a wedding and all the excitement that comes with it kept us busy with picking out a wedding dress, flowers, venue, DJ, food and the list just went on and on! The wedding was PERFECT and our joy and happiness was abundant...and then came the difficult day of moving our daughter away from home to over a thousand miles away. Though I was happy for her and Artie, it was quite difficult for me. Being an empty nester did not bring the moment I thought it would ring in, instead of confetti falling from the skies, angels singing and balloons being let go to fly up and way above the earth, I felt as if my world had been put on a free-fall roller-coaster....and I HATE roller-coasters. A physical piece of me was gone and boy, did it stink!  This season became another part of life's endless chapters, another "newness" to get familiar with.  It has been over a year  since she moved away and its better but I do miss my "little girl". 

Jilliam and Artie's wedding day ~ Tampa, Florida

 Michael and Jilliam dancing at the wedding



Michael has been busy and back on the road and doing what he loves and what he does best....entertaining, keynote presentations and playing with people's minds.  Among many projects Michael has on the table, he is also in the middle of writing a book which will focus on how to read a person's mind by reading their body - Pretty cool and useful if you ask me, right? We can't express how grateful we are to the study that Michael was part of and Dr. Lenventhal, as well as Northwestern Memorial Hospital for the excellent care and this pivotal opportunity at a new life.  Was it a rough road?  Yea, it was - very difficult at times but Michael focused on the light at the end of the tunnel...he never let his eyes waiver from that light and he had faith and determination that this study would work for him, he had total trust in it.  I'm always in awe at his tenacity, positive attitude and braveness. He doesn't just "speak" positive messages, he truly lives what he shares on stage and I'm always in amazement at how he pushes through and smiles on. 

 

Michael....back on stage.

"There is a light at the end of this tunnel"

My heart goes out to all PKD patients, your daily health struggles, the fears of what the future might or might not bring, the uncertainty that at times peeks it head around...but at the same time, I am at awe...at awe with the courage you have, the hope you so proudly hold on to, the smiles and laughter that you genuinely give and the strength that resounds in your souls. May God bless you...always, because through you I have been blessed. I love you Michael, you keep me in awe. :)

Published results on study.
http://www.ncbi.nlm.nih.gov/pubmed/23222893

565 days post transplant.  You are not alone in this PKD journey....and neither are we.

God's Blessings....Lilly

Hello Friends!

Hello Friends! It's been a while since I was last here and I have missed it! Life has been busy but that can only mean good things, right? Michael is doing amazingly great! He is almost 5 months post transplant and back to work and doing what he loves! Just the other evening I heard him tell his friend "I'm feeling 100%, I can't run a marathon but I'm feeling really great".  How awesome is that!?! Michael has been busy performing again and bringing laughter and inspiration to his audiences. He recently had a corporate keynote in New Orleans and for the first time on stage he shared some of his personal journey with Polycystic Kidney Disease and his unique kidney transplant. It was a raw and poignant moment and it turned out to be quite uplifting for both Michael and his audience. After the standing ovation died down, a liver transplant recipient came by and shook Michael's hand.  He sincerely thanked Michael for sharing his transplant story and giving such an edifying speech that benefited him personally as well as professionally. I believe he too felt at that moment that he was not alone and that fills our hearts with sweet joy. Come on, smile with me! Oh, not to forget - Guess who Michael ran into in New Orleans?  Angelina Jolie! Michael was opening the door of a hotel as she was walking out with a girlfriend.  Angelina looked at him, smiled and mouthed the word "hi". I bet she thought he was the cutest boy ever!  :)  Michael's 6 month check up is coming up soon and he will be flying to Chicago to see Dr. Leventhal. During this checkup among a lot of blood work, he will also be having a kidney biopsy which is standard at this time post transplant. Though it sounds painful and invasive its actually done with a needle and small samples of the kidney are removed. We are hoping that after this visit he will be free of one of his immunosuppressive drugs, Myfortic. His anti rejection medicines have slowly been reduced in preparation for being drug free within the one year post transplant anniversary. Michael has seen side effects of these drugs including coughs, dry skin, rashes, hand tremors (not good when you are a magician who does close up magic) and some itching. Can't blame him for wanting to get off them! Michael's heart rate is still a bit high but slowly coming down, his BPM are now averaging in the mid-90's. He is no longer getting dizzy spells, which makes us all relieved and his appetite is almost back to normal. He hasn't gained much weight, still holding around 184 but he is eating healthy and in no rush to gain much more. Life is normal again, a new normal but a healthy and grateful normal. Life is not about the next biggest thing, its about the small journeys we take that make our spirits grow and nurture a desire to give back. Joe is doing GREAT! We get to see him and his family when they come down in July. It's going to be a really neat day when both brother's reunite post transplant.

145 Days Post Transplant.  You are not alone, and neither are we.  That's pretty cool, right?

God's Blessings ~ Lilly

Back to Life, Back to Reality

Michael had his 3 month check-up this past Wednesday in Chicago with Dr. Leventhal.  It was a quick one day trip and I was so happy to see him with energy when I picked him up at the airport that night. His morning started early, I dropped him off at Tampa International Airport around 5:45 am, and his appointment with Dr. Leventhal was at 10:30 am. Michael had a bumpy plane ride all the way to Chicago and when someone who flies as much as Michael says a flight was bumpy, it means nail biting to the rest of us! After landing he took a taxi to Dr. Leventhal's office which is located right next to Northwestern Memorial Hospital. When Michael arrived for his appointment he was quickly taken back for vitals and then taken to a examination room. Michael discussed several things with Dr. Leventhal but mostly his concern over his heart rate. After reviewing Michael's labs, Dr. Leventhal belives that the fast heart rate is more than likely due to having a low hemoglobin count. Michael's hemoglobin is at 10 (normal is 14-18 for a male), Dr. Leventhal prescribed iron supplements and eating iron rich foods.  Dr. Leventhal dropped Michael's Myfortic from 8 pills a day to 6 pills a day and the plan is to have him completely off Myfortic by month six. Michael's other blood work looks great, the kidney is working magnificently and the incision scar is healing up great! I totally believe Dr. Leventhal could pass for a plastic surgeon with the beautiful job he did on Michael's incision. Michael's next appointment with Dr. Leventhal will be in 3 months, during that appointment they will be doing a kidney needle biopsy (ouch), this is being done to make sure the kidney is working properly.  Michael's blood work schedule will now be 1 time per week, he was going twice a week. All is going well, as it should and we are so thankful and grateful. Tomorrow night Michael will be back on stage! He will be flying to Maine for his Monday show and then Indiana for a mid-week show. Michael normally zips from state to state from one day to the next but he will be taking it easy and making this two day engagement into five days of travel with rest days in-between his shows. I pray extra hard that he will be able to withstand being on stage and entertaining and interacting with his audience for a full 90 minutes. I never realized how much energy an actor/entertainer really uses while on stage, they have to be "on" at all times and captivate their audience, catch their attention and hold on to it, mold it and take it places its never been. Michael "shines" when he is on stage, I can't help but look at him and smile and laugh. He is truly an entertainer who loves bringing happiness, laughter and a good time to his audience. So I ask of you tonight, if you happen to think of Michael tomorrow, say a prayer and send good thoughts his way.

Michael stopped for a little breakfast before seeing the doc.

Building where Dr. Leventhal's office is located on the 19th floor.

Just as you exit the elevators, you can see into Dr. Leventhal's reception area.

Examination Room.

94 Days Post Transplant. You are not alone in this PKD journey, and neither are we.

God's Blessings, Lilly

Getting Out and Moving

Michael continues to do well! He is feeling better and stronger each day. He has started doing small numbers of squats and incline push-ups to strengthen his muscles that had weakened due to the period of inactivity and rapid weight loss. Michael is also eating better and has gained about 4 pounds. Though food still doesn't taste "good" to him, he does the very best he can to eat as much as possible. I don't think I have ever used so much cheese and butter in my cooking but I'm doing my best to make each bite of food he takes FATTENING! For Valentines, Michael made reservations at our favorite restaurant and I was happily impressed when he ate a cup of rich and buttery lobster bisque, hot crusty bread, 1/2 of a heavenly salmon filet  and some smashed potatoes with garlic. To make a perfect evening more YUMMY, we shared a Creme Brulee that made our taste buds sing!  It felt wonderful doing something as ordinary as having a dinner out, but we have learned to appreciate ordinary more and more each day! Michael's 2nd Chimerism test came back two weeks ago and its rockin n' rolling at 98%! It's super that things are still working as they should! His Neuropathy seems to be saying "adios"! And that "adios" comes along with the fact that he is no longer taking any medications for Neuropathy! Oh yeah, way to go Michael! He is sleeping much better with little to no help from Ambien, he is now able to tolerate colder temperatures and his body is not aching anywhere close to how it was. He is also getting weekly hour massages that seem to be helping out by relaxing his muscles and working out the knots. Michael's resting heart rate still seems on the high side though, in the low 100's. He was told to drink more fluids and he has but how much fluid can one drink and still eat enough to gain weight? This will be something he will be talking to Dr. Leventhal about when he sees him this coming week! Michael will be going back to Chicago for his 3 month check-up with Dr. Leventhal on February 29th. Can you believe its been 3 months already?  We sure can't! He has already purchased his plane tickets and plans to fly back home that same day. It will be an extremely long day for him but he sees it as a practice run for his seven shows that are coming up in March. Michael will start back on the road, performing his show as soon as March 6th. He is focused and looking forward to returning to some normalcy and one of those is entertaining. He loves what he does and is ready to get back on the road. Will I be worried out of my mind those first few shows? You betcha! But I also realize that Michael knows his body better than anyone and he would never do anything to jeopardize his health, I believe that his excitement to get back on the stage is a clear indicator that he is feeling better and that he has a good goal set for himself, I trust in him and his judgment. Last week, we were delighted to see some of Michael's oldest friends! His childhood friend, Neal came from Canada to visit with us for a few days. Michael and him caught up and shared some laughs. Neal is a policeman in Canada and is an amazing dad to 4 children that he promises to bring with him next time he visits. Mike, Amy and their precious children also came to visit for a couple of days from North Carolina! Mike is a wonderful friend and has the best sense a humor! He keeps Amy and all those around him laughing, including their 4 kids! Amy laughs easily, is intelligent, thoughtful and has the sweetest spirit, she is such an awesome mom. It has been really nice to have friends over who love and care for Michael. It gives us the opportunity to forget for a while that Michael is still recovering from a very serious surgery, recovering from a study that still has lots of unknowns. 

Valentines Day

Michael, looking like a "Maltador" (quote from his friend Charlie).

Our friends Mike, Amy and the most amazing bunch of kids on the universe!

87 Days Post Transplant!!!!  We are blessed to have such amazing friends, neighbors, family ~ You are not alone, and neither are we.


God's Blessings ~ Lilly :)