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