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 :)

Undaunted and Steady

As I write this post, I'm smiling. Michael is doing so much better! He is actually SLEEPING!  Can I hear a roar of "Bravo's"!  He has consistently been getting anywhere from 4-6 hours each night and taking a nap or two during the day. The beneficial sleep has unquestionably been evident during Michael's waking hours. He has been walking about 3/4 of a mile most days, sleeping less during the day and in general appears more rested. Along with the additional rest his body is receiving from a more normal sleep pattern, Michael's Neuropathy seems to be working itself out. He is no longer freezing most of the time and has actually brought down the temperature in the house to 78. His body is no longer aching the way it had previously been and he is able to rest without severe pain. He still experiences muscle pain but massages and warm baths give him relief. His appetite is still not what it use to be and he has not gained any weight back, I'm positive that will come along with time. My dear friend Suzanne once told me "Time is the healer of all things", I have gone back to that saying many times in my life, it does bear some truth, right? Dr. Leventhal has now decreased the frequency in which Michael has to visit the lab for blood work from 3 times a week to twice a week. Eventually the lab visits will decrease to once per month, and that will be for the rest of his life. Michael had his second Chimerism test on Monday, we should be getting those results this coming week. A successfully chimerized immune system recognizes both the donor organ as well as the recipient's native tissues as self. Therefore there is no need for antirejection therapy and also no danger of graft-versus-host disease. Michael will get ongoing Chimerism tests to make sure that his body hasn't "lost" Chimerism. On Saturday we had our longest excursion yet! We visited a town just East of us called Dade city. Its a fabulous little town where time stopped in the 1900's and immediately forgot about it.  The red brick streets are lined with antique shops, Tea Rooms, quaint shops and fabulous family owned restaurants. Michael and I had lunch at a wonderful restaurant with an old Florida ambience that was uniquely decorated called Kafe Kokopelli. My friend Angie had told me about it and I immediately thought it would be a great place to visit when Michael was better. That same day there was an antique car show and craft fair going on, lots of things to do with that nostalgic home town feel. A perfect and relaxing Saturday afternoon. Things are improving, daily and steadily. Now, that's something to really smile about. 

Lunch at Kafe Kokopelli in Dade City, FL

66 Days Post Transplant. Thanking God for healing. You are not alone, and neither are we.

God's blessings, Lilly

To know the road ahead, ask those who are coming back.

Michael is still recovering slowly. Sometimes, it feels excruciatingly slow. I see them as baby steps in the right direction with a few wobbles and trips. Sleeping and eating, two of the most basic human needs, seem to still elude him. He has had a couple of days where he slept, once for 4 hours straight and another time for 8 hours but last night he was back to pacing from the bedroom to the living room, unable to find rest for his tired body. It has to be maddening, I can't imagine being so exhausted that you plead for sleep and rest and you still can't find it. The doctor has stated that he doesn't know what else to do for his insomnia, so I'm to assume that we are to wait until something in his body starts recognizing the benefit and need of what we take for granted every night when we lay our heads on our pillows, close our eyes and drift to a place where we dream and recover from our day. Michael's appetite is slightly better than what it was before but he still can't eat a whole burger nor a whole sandwich, normally just half. He has been drinking shakes to get extra calories into his body. Right now he needs high fat and high calorie foods, if he is only going to eat a bit, it better be something that will add volume back to his thin body. He is down to 184 pounds, he has now lost 35 pounds since the start of this transplant journey. He has been taking daily walks around our neighborhood to strengthen his body, the days have been gorgeous, pretty much paradise.  His Neuropathy is not as difficult as it was previously but he still wants to keep the house at a toasty 81 degrees since his body continues to battle with these cold spells. His blood work is truly fantastic! We are so happy and blessed to know that his kidney is working great, his Creatinine level is holding steady at 1.6.  Though Michael is still quite uncomfortable, its an immense relief to hear that things internally are working the way they should! At least something is working, right!   Michael's incision finally closed up!  Can I get a "Yes"!  It closed up rather nicely and his scar is not as long as we initially thought it would be. As we go through this journey, we consider the small group of Patients before us and the small amount of data that is available concerning this cutting-edge kidney transplant protocol. There have been a few "unexpected" symptoms and complications, some that we were ill-prepared for, being unfamiliar with what to expect has made me feel like we have been walking in the dark, by faith and with the help of some brave patients who walked this journey before us. We are truly grateful to these patients who have reached out and opened painful  memories that were most likely safely put away. Memories, that I gather they would have rather have kept locked away but true to their courageous spirits, they shared with us their experiences and have reassured Michael that he will once again feel healthy and good. In that hope, we are focused on and in that hope we hold on to tightly.  

Mepron ~ Michael's new Antibiotic ~ Monthly cost? $1,557 ~ It looks and taste's like yellow finger paint!

Michael's incision, healing quite well!

58 Days Post Transplant! Time is just moving right on by. You are not alone, and neither are we. Thankfully, right?

God's Blessings, Lilly :)

A Winding Road To Recovery

This has been a week of independence for Michael. He has had to do a lot on his own while I have been at work, he has done a magnificent job! Michael is still quite weak, he has full body muscle aches and most unfortunately, healing sleep seems to completely elude him. Its frustrating to see him go night after night without sleep. Can I say that Neuropathy STINKS!?! I can't comprehend why nurses/doctors can't provide him relief or sleep. Michael has been given sleeping pills, Benadryl,  Tylenol PM and not one has helped! He literally NEVER fell asleep last night, he was told by a Transplant nurse to take two of his sleeping pills instead of 1 and it made things worse for him. Today I went to our local drug store and the Pharmacist suggested Melatonin so we will be trying that tonight along with a body massage given with Tiger Balm. Yesterday he woke up with a rash that covered his face and ran down his neck and to his upper torso. We called the Transplant Clinic and we were told to stop taking the Bactrim and that they would call in a new anti-biotic prescription, Michael has to take this medication for at least a year to prevent any lung infections that he is now more susceptible to because of the immunosuppressive drugs. I called our pharmacy to check on the status of the new medicine and I almost crashed my car when they gave me the total for a one month supply, $1550.  Actually, my mind is still spinning from that news. I had to call the Transplant Clinic once more to be certain that this was the correct medication and sure enough, it was. I asked the nurse how were they so sure that the Bactrim was to blame for the rash, she said they aren't 100% sure but that is what the Doctor suspects it is, I hope that his educated guess is correct because if its not, its costing us $1550. On a lighter note, Michael's fainting spells are over and he is OFF blood pressure medicine and maintaing a healthy BP! How great is that? Joe's kidney is definitely doing its job! Our daughter Jill drove Michael to the lab to have his blood work drawn on Monday and Wednesday morning, those labs have come in and he is doing outstanding. Kidney is working great! YAY! This morning Michael drove himself to the lab! Wow, right? It was the first time he had driven since November 7th. Its thought provoking to contemplate how something as mundane as driving can be such a huge hurdle to jump. Nice jumping Michael! 

Rash due to Bactrim?

Incision is finally closing up!

The pups were so excited to see Michael they cried!

43 Days Post Transplant. Moving slowly but moving in the right direction. You are not alone, and neither are we.

God's Blessings, Lilly :)

HOME

Michael arrived home on Friday night! Oh, happy day! It was wonderful seeing him walk towards us after he exited the monorail at Tampa International Airport! Michael, Jill and I were all smiles and our 3-way hug reunion melted away time and made everything right again. I felt an immediate feeling of relief and happiness to have him home again, he had left on November 8th, just shy of being away for 2 months. Michael arrived home on January 6th. If you are Hispanic, you might understand the meaning of January 6th and the wonderful gift I was given this day! In Cuba and possibly most Hispanic countries, children get up and open their Christmas gifts on this morning. The gifts are delivered by the Three Kings. We call it El Dia de Los Reyes. The Day of the Three Kings. This holiday celebrates the Three Kings who Christians believe followed a star to find baby Jesus in the town of Bethlehem, where he was born. The Three Kings bear gifts and leave them by your bed as you sleep as they did when they laid gifts in front of baby Jesus. Though my family was too poor to celebrate this day when we lived in Cuba and the Three Kings never left me a gift, this year I believe the Three Kings outdid themselves! Michael did not know until Friday afternoon that he would be able to come home. As soon as he found out, while still at the Transplant Clinic, he took out his IPhone and made his reservations to come home that very night. His parents helped him pack up and drove him to the airport to catch his flight. We would like to thank Harry and Anne for being with Michael these past weeks post-transplant helping him recover from this immense surgery and recover from the effects of the chemo and radiation. We understand how difficult it was for you both and appreciate the time and love you put into helping Michael during his recovery. Michael is feeling much better but still has a while to reach total recovery. His appetite is increasing each day but he still struggles with sleep. The neuropathy is acting up at night, causing him severe pain and hot/cold sensations making it impossible for him to rest. Tonight, as I sit across from him, I can see he is doing better than yesterday and looks good. I'm saying this even knowing that he had two fainting episodes today. The first was when he was out in the lanai getting some beautiful Florida sunshine. He was only out there about 15 minutes laying on a wicker sofa when all of a sudden I heard from the kitchen a sound that is unmistakably bone hitting concrete. I ran outside and asked him what happened, he couldn't remember but did remember getting dizzy after standing up. After making sure he was okay except for a very sore bum, we walked back inside and he laid in bed for a while. Scare number two came after dinner. My niece Christine and her husband Joseph and their baby Julian came by this afternoon with a Chocolate cake for Michael, I had been making a pot roast and we asked them to stay and have dinner with us. After we all had a nice visit, dinner and some delicious cake, Michael laid back on his recliner and slept for about an hour. When he woke, he asked me to get him a glass of water and he stood up to go into our bedroom. As I turned away from the refrigerator, I noticed that he was swaying and before I could catch him he fell. Again, he had no idea what happened and just remembers getting up from recliner and then feeling dizzy. He laid on the floor as I took his blood pressure which was 125/80 (which is low for him). Michael texted Dr. Leventhal who instructed Michael to stop taking his blood pressure medicine, drink additional fluids and increase his salt intake. I go back to work tomorrow and I have mixed feelings knowing he will be home alone the rest of the week. Our daughter will be with him tomorrow and will be taking him to get his lab work (which he will need to do 3 times a week) but she will have to go to work or school the rest of the week. I pray that being off the blood pressure medicine will fix this issue. As he continues his recovery, I hope that he will continue to have better days and that the struggles he has gone through become a faint memory as he enjoys his health.

Coming "home" text!

Wearing a mask just for the plane flight home.

Almost home! That little plane couldn't move fast enough for me!

Finally "home", so good to have him by my side!

Catching up as we wait for his luggage.

Welcome "home" pot roast dinner. YUM!

Julian helping out in the kitchen. :)

38 Days Post Transplant. Making each day a better one, so great to have a "full house" once again. I hope that you are enjoying your time with your family and friends and though its normal to feel alone at times, know that you are not alone and neither are we.

God's Blessings, Lilly :)

Chimerism!

Yesterday we learned that Michael's Chimerism test had come back at 98%! This is fabulous! Michael is now the proud owner of a twin immune system made up of his own cells as well as Joe's!  In this state, two bone-marrow systems exist and function in one person.  This also means that Michael (God willing) will be drug free and off immuno-suppressant drugs in a year or so! How great is that!

36 Days Post Transplant. Feeling blessed and relieved! You are not alone and neither are we. :)

God's Blessings, Lilly