Farewell 2011

Today is the last day to a monumental year, complete with challenges, old and new things, good and bad times, blessings, but most importantly a new chance at life. I'll be bringing in a quiet new year in our home in Florida with Jill and her boyfriend Artie, while Michael will be bringing in 2012 in Chicago with his parents. As I take a deep breath and close my eyes, a slow smile spreads across my face as I wish this year good-bye. Thankful for the biggest blessing and gift that Michael could ever receive, a kidney that has not only given him a new sense of hope and a new life but unmeasurable relief and peace. His brother Joe is the one to thank for all this and we will always be immensely grateful. Joe is doing well back home in Canada with his wife Heather and 3 children (Vanessa, Joey and Briar). I hope that when Joe brings in the New Year tonight, he will have a quiet moment of reflection and enjoy a smile as he remembers the irrefutable impact he made not only in his brother's life but in mine and Jill's as well. BIG NEWS this week, Michael had his Chimerism test on Thursday! One small vile of blood was taken from him and sent out by courier to be tested. We will know within 4-5 days whether this clinical trial worked for Michael, and we pray that it did! The idea behind this study is to chimerize the organ donor's immune system with the recipient. A successfully chimerized immune system recognizes both the donor organ as well as the recipient's native tissues as self (its like fooling the immune system into thinking Joe's kidney is Michael's own, pretty sneaky if you ask me!). Creating a harmonious environment where there is no need for immuno-suppresive drugs and also no danger of graft-versus-host disease. Michael's PICC line was removed on Friday and he is no longer needing IV fluids and his blood work is looking great! With chemotherapy and radiation, side-effects happen and one of them is called Neuropathy, which Michael is now tackling. Neuropathy is when there has been damage to the peripheral nerves which send sensory information to the central nervous system. Some of the symptoms Michael is experiencing are inability to sleep, pins and needle sensation on hands/feet, burning feet (so much he had to put wet towels to cool them off last night), skin is extremely sensitive to touch and flu-like body aches. His body is going through a lot of healing, we don't know how long these side-effects will last but we hope that this too shall pass quickly and be a distant memory soon. Michael and I have been in contact with Patient #8, Lindsay, and she has been incredibly supportive and available to answer Michael's questions and provide an empathetic "understanding" of what he is going through. She is brimming with hope and good news and she easily and happily provides that to us. She has been off all immune-suppresive drugs for about a year now and doing great! We are so happy that we "bumped" into her in Dr. Leventhal's waiting room! We also have been emailing patient #14, Larry who had his transplant right before Michael on October 27th. He is home now and  recovering, its so wonderful to be able to reach out and support one another. When you are going through this type of clinical trial and you know there have only been 14 before you that have traveled this long and winding road, its difficult not to feel "alone". But its been amazing how we have been able to "accidentally" run into 2 of Dr. Leventhal's patients and stay in contact with them throughout this. Last week, I took it upon myself to contact Patient #2, Rob. We were given his number by Dr. Leventhal's team as a contact person who we could reach out to and ask questions in regards to this clinical trial.  Rob was great and easy to talk with and most importantly he was enjoying health. He had the surgery 3 years ago and is currently on no medications.  Below is a video of Rob as he shares some of his experience.

"Our 1st New Year's Together" ~ I Love this man.

Joe, Heather, Vanessa, Joey and Briar visiting with Santa.

30 Days Post Transplant. We wish you a blessed and healthy New Year! You are not alone, and neither are we!


God's blessings, Lilly :)

Christmas Cheer

Christmas morning Michael woke up feeling much better, a Christmas Miracle and lots of prayers? 'Tis the season, right? I'm smiling, I hope you are smiling with me. Michael celebrated the day with his parents in Chicago in his hotel room and he joined my loud Cuban family and I via FaceTime (gotta love the IPhone, right?) and joined his Canadian family's festivities via Skype. It was wonderful seeing him smile, laugh and partake of the simple pleasures of the holidays. His appetite is still absent and its an undertaking to eat a normal meal, so his Christmas day meal was a few bites of a sandwich. Today Michael had his routine blood tests and was also seen by Dr. Leventhal. I'm happy to say that Michael is progressing in the right direction and its obviously showing. He is no longer on the antibiotic IV drip (YAY!), the IV fluid bags are now just once a day instead of 3 times per day, he was taken off several medications and his platelet count is up to 30,000, which Dr. Leventhal was extremely happy with (lets continue making that doctor happy!). The platelet count is a good indicator of chimerism, which is the whole reason Michael enlisted in this clinical trail. If chimerism is reached and maintained, Michael will be drug-free by this time next year! Dr. Leventhal gave Michael another Neupogen shot since his WBC was a bit low but he stated that its typical to get one at this point in the process. Michael's Creatinine level is 1.47, Dr. Leventhal believes that Michael's normal Creatinine level will remain around this number due to his size (Michael is 6'2"). Michael is still having a difficult time sleeping at night, the Ambien that was prescribed for him has not worked and the Tylenol PM that was recommended by the doctor has not done the job. Today the doctor suggested Chamomile tea - maybe something as simple and wholesome as that will work, right? Michael asked Dr. Leventhal when will he be released to come home and the good doctor said after the Chimerism test if he was doing well. The Chimerism test will take place around January 4th, it takes two days to get the results, so Michael might be coming home the week of the 7th! We can do this, just give us a goal and we will make it our target! 

Joe and Heather's Christmas gift to Michael. A picture of Michael and Joe by Chicago's famous "Kidney Bean".  This picture will have a special place in our home. (BTW - he looks great, right?)

"The ultimate measure of a man is not where he stands in moments of comfort  and convenience, but where he stands in times of challenge and controversy." Martin Luther King, Jr.

25 Days Post Transplant. Its been a good weekend after all, shared with family and friends via technology which created a semblance of togetherness. You are not alone, and neither are we. 

God's blessings,  Lilly :)

MERRY CHRISTMAS

Luke 2:11

For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

We wish you a Merry Christmas * From our family to yours *

24 Days Post Transplant. You are not alone and neither are we.  Matthew 28:20 "- And surely I am with you always, to the very end of the age.” 

Mary Did You Know ... Pentatonix 

God's blessings.  Lilly*

Layer After Layer

So many layers of symptoms, complications and new obstacles to comprehend and circumvent all while the body is healing from a major surgery, an immune system that is fighting to re-establish itself after being impaired by chemotherapy and radiation, a bone marrow that is depressed to the point that the body requires red blood transfusions and an incision that has had to be partially re-opened to adequately keep clean among so many other things that aren't even mentioned here. Overwhelming just to see in a few sentences, an immense mountain to climb when in the midst of it all. Michael has had some difficult days. Extremely lethargic, heavy fatigue, difficulty speaking and labored breathing. He received 2 additional bags of blood this past Wednesday, this Friday his hemoglobin count was at 12 which is almost at the low end of normal so we are hoping and praying that will be the end of blood transfusions. My heart is heavy for him, for what he has gone through and what he is now going through.  I can not wait until he is home again. Days feel heavy and they are refusing to move, creating long days and even longer nights. Much of what Michael is experiencing are side-effects of the chemotherapy and radiation, a typical transplant patient would not be going through the effects of these toxins in their bodies. In order to do the stem cell transplant for this surgery, he had to undergo sessions of chemo and radiation. One nurse told me that he received double the amount of chemo that a normal cancer patient would receive (Michael does not have cancer, but the only way to do a stem cell transplant is by killing off the patient's bone marrow and chemo along with radiation is used to do this). One of the side-effects is loss of appetite and food becoming tasteless, Michael has lost about 30 pounds in 3 weeks. On Thursday I was deeply concerned after having a short conversation with him, he was breathless and speaking was an effort for him. On Friday, I could not shake off the feeling that things were not well with Michael and I called into the Transplant Clinic where I knew he had an appointment that day. After speaking to several people, I finally got a hold of his attending nurse and one of the transplant coordinators. I shared with her my concerns and she tried to answer as best as she could but promised to check on Michael who was in one of their processing rooms and call me back with an update. Michael called me while she was in the room with him attending to his open incision by cleaning it with saline and redressing it.  Michael had just finished receiving 3 bags of IV fluid and taking a two hour nap. Though Michael is drinking plenty of liquids, his body continues to battle dehydration as a result of the side-effects of the anti-rejection meds and his need to urinate about every hour. The nurse sincerely communicated that when she saw Michael walk into the clinic that morning she was concerned, "he could barely hold up his head". When she took his vitals, her level of concern heightened. After discussing things over with Dr. Leventhal, it was decided to increase his IV fluids which seemed to have helped stabilize Michael's blood pressure and heart rate as well as provide some much needed energy for his body. Michael will be giving himself 3 bags of fluid IV every day from his hotel room, along with a bag of antibiotic. You know how you go into a situation with nothing but positive thoughts, goals that will be exceeded and records that will be broken? Well, we both did going into this but we never thought or were we educated enough about medicine and the effects of chemo/radiation on a healthy body to realize how severe this blow would be. Though weak and tired, Michael is positive and looking forward to getting through this. He is mentally strong and has a way of controlling his thoughts instead of letting his thoughts control him. I know he will get through this, we will get through this.

A visit from Aunt Marg, Uncle Rudy and Sue.

 Harry helping out Michael with his IV.

****Graphic picture of Michael's incision below****

Michael's incision was opened up to keep it clean. Michael has to clean it and dress it 2x's a day.

23 Days Post Transplant. We thought we would be well into recovery by now but the road to travel was a bit more difficult than anticipated. Michael, I hope that you have not felt alone in this journey, that was one thing I never wanted you to experience. I love you, I will always be the soft place you can rest, the one you can trust and the one who will stand by your side through it ALL. God has shown His faithfulness, He is with us and has walked this journey ahead of us. He has cleared a path and in Him I trust. You are not alone, and neither are we.

God's blessings.  Lilly

Counting the Days

Yes, I am counting the days until Michael gets home! He has been in Chicago since November 7th and I'm ready to have him home. If all goes well, he should be home in 3-4 weeks. If I was to count down the days, I would count them like Michael's youngest cousin Dawson who is 6 years old counts his days, it would be 21-28 sleeps away! So cute but still sounds like a long time away, right? Sunday was a tiring day for Michael, he was exhausted and slept quite a bit, I guess his body deserved it and needed it. Today he had an appointment with Dr. Leventhal and it seems like things might be on the upswing when it comes to his blood work. Today, they unmasked my Zorro (Okay, Michael!). NO MORE MASKS! YAY! His white blood count is now 2.6 which also means no more Neupogen shots! How great is that? The doctor did find some oozing at the incision site verifying what I felt had been going on and that was an infection. They put a bandage over the area and they will continue the antibiotic IV at the hotel at least until Friday. Good news is that a lot of the redness in that area has resided, so hopefully things are headed in the right direction and will remain that way. Today Michael's Aunt Marg, Uncle Rudy and Sue (Dawson's mommy) came to visit Michael for a few days from Canada! Michael has been excited about their visit for a long time and I have no doubt he will have a ton of laughs with them! Sue is a nurse and a patient advocate and I am positive Michael will have the most amazing and loving nurse by his side for the next couple of days!

Sue helping out with Michael's IV ~ Yup, he is loving it. :)

18 Days Post Transplant.  You are not alone and neither are we, its good to not be alone.


God's Blessings .... Lilly :)

Finally!

Finally Michael is feeling better. He said, "I would be happy if I continue to feel this good". He was released from the hospital yesterday evening and he went back to the hotel with his parents. He is relieved to be out of the hospital and on a course to recovery. He has had a tough few days but things are slowly resolving. This morning, he had a nurse come by to provide instructions on how to use the PICC line that was inserted yesterday while at the hospital. The PICC line will be used to provide him with antibiotic and fluid IVs. The PICC line was installed in the inside of his arm above the elbow, the end of the PICC line normally sits in a large vein just above the heart so there is plenty of blood rushing past it to dilute the drugs and take them safely into the bloodstream. Michael's labs can now be drawn from the PICC line and allow his bruised arms and hands a breather from the frequent needle sticks. Yesterday Michael had a chance to ask Dr. Leventhal if there were any risks in his body's ability to reach Chimerism due to the complications he has experienced and the amount of medications he has taken and the Dr. Leventhal said "No". Good answer Doc! :) Michael's complications are due to the kidney transplant, they were a product of the stent and catheter and not the "clinical study" at hand. Michael is passing urine much better today, no stinging and maybe slight pain and pressure. He was able to eat a normal size breakfast and is drinking plenty of water, mundane things but we cheer for them! His heart rate is still elevated around 100-110 BPM but its been like this since the surgery (or maybe chemo). We keep hearing that it's from dehydration. He was also put on a supplemental Magnesium IV while in the hospital and he is now taking it in pill form. We don't really know why he has low magnesium levels but some patients experience this after chemotherapy. Today I finished wrapping up Michael's stocking gifts as well as his parents gifts and mailed them off to his hotel. Before Michael left for Chicago, we celebrated Thanksgiving and Christmas with my family and we surprised him with presents under the Christmas tree. Michael and I will not be celebrating Christmas together but its all good. His travels take him away at times during birthdays, holidays, celebrations, anniversaries and we are accustomed to making our own special days and celebrating outside the box. Looking at the grand picture, Michael received the biggest gift of all from Joe on December 1st - there is nothing else we need or want. We are blessed.

PICC Line.

Our Christmas together before he left for Chicago

We surprised him at my sisters house after he had arrived home from a 4am flight he took out that morning!

 Michael and Jill.

 "Our Family"

Uncle Mike with Julian.....Mike is the best uncle on the planet!

Anne has decorated the hotel room for Christmas.

16 Days Post Transplant. We are thankful for the "gift" of this season, life has been restored in so many ways. You are not alone, and neither are we.

God's Blessings, Lilly 

Friends and Family

I'd like to start this blog by saying a heartfelt "Thank You" to all our friends and family who have been so supportive, caring and have prayed for Michael. God gives us friends and families, to let us know He is near and to show His love and care through them. Yesterday evening and today have been the worst days for Michael. He has suffered so much pain, has gone through such a difficult time and it seems like time has stopped here, at a point where there are more questions than answers. I'm angry. Appropriately. Its senseless that this caring man who loves to make others laugh and make them forget their troubles should have traveled the road of pain and agony he did today. A new symptom erupted today, he was needing to relieve himself every 5 or so minutes! The pain was excruciating and he texted Dr. Leventhal. A new catheter was put in him today, there is no need to describe how painful that was for him. After several hours of having the catheter in, it became evident that the pain was not going away. The pain would hit him in waves of searing torture to the point he had to scream out in pain. Michael is not a "wimp" when it comes to pain and he is NOT a complainer, I have no doubt that he was in complete torture. The pain would leave him breathless and weak (he was on pain meds but they were no help). The nurses hearing his cries from their station, called Dr. Leventhal who came by to see Michael. Dr. Leventhal suspected that the ureter stent that was placed in Michael during surgery was what was causing the pain. A ureteral stent is a small, soft, tube about 10 - 12 inches long and about as big around as a coffee stir stick. It is placed in the ureter, which is the tube that drains urine from the kidney to the bladder. The purpose of the stent is to hold the ureter open and maintain proper drainage of urine until the surgical connection between the transplanted ureter and the bladder heals. It normally stays in for about 6 weeks. Michael's was removed today due to the pain he was in, it was only in for 2 weeks. When I asked if this would hinder the area from healing I was told, "he will be closely watched". Of course, this wasn't enough for me so I "Googled". I read several kidney transplant forum's where patients had their stents out as early as 1 week. So, I'm not feeling so anxious about the non-answer. Michael just came from having an abdominal scan, the reason? Another symptom was noticed, redness in his flank. The Infectious Doctors (could be the name of a movie!) noticed the redness and to rule out anything serious they ordered the scan. While writing this I received a text from Michael, "scan was all good"! Thank God! He is feeling so much better after the stent was taken out. Today they put in a line so that when he is released he can continue with his IV drip of antibiotics. Again, they haven't said he has an infection but they are continuing the antibiotics at the hotel. I personally feel that they must suspect some sort of infection since Michael's WBC is still only at .6. It's truly been a roller-coaster of emotions the last couple of days. We are just looking for a breather, a restful night, normal urination, no fevers, returned appetite, renewed energy. Today one of my oldest friends was in Chicago for training and she stopped by to visit Michael. Leslie and I worked together for probably the best company ever until it was acquired and they ruined all the fun! I have known her since my early 20's when I started working for a local software company. We worked together through our pregnancies and she was one of the best bosses I have ever had! I always looked up to her and always tried to model myself after her when I was in positions of authority through-out my work experience. She was fair, intelligent, cool, balanced and friendly. She expected everyone to put in an honest day's work and we did it gladly because she understood the value of showing appreciation to your employees. Here it is many years later and she is in Chicago for training, she had been following my blog and she stopped by to see Michael "for me". She is still an amazing woman - so thoughtful and caring. I can't thank God enough for the friends He has put in my life.

Into Scan for Flank Redness.

"Scan was all good"

The Stent....we paid for it, so we are keeping it! We might torture it a bit. 

Leslie ~ Mon Ami

15 Days Post-Transplant. We are not alone, and neither are you. Honestly, its been a very difficult two days but I can't express how much love and support our friends and family have shown. We were not made to be "alone".

God's Blessings.  Lilly :)

Still Searching for Answers

Michael is still in the hospital. He was put on antibiotics on Sunday and yet new symptoms keep arising. He originally went to the ER with severe pain during urination and only able to produce about an ounce each time. The pain has been managed with pain killers (I believe Norco), but answers to why he is in so much pain when he relieves himself have been elusive. When Michael was fitted with his catheter the day of surgery he immediately started noticing pain and pressure if he moved a certain way. We were assured that this was normal by the nurses so we accepted it, not knowing any better. Maybe it is normal, I'm not saying it isn't. After it was removed he continued to have excruciating pain, to the point he would cry out while relieving himself. Again, we were told that its normal to have discomfort after having a catheter removed. Again, we accepted this answer since we are not in the medical field and are limited to zero knowledge concerning catheters. Now here we are almost 10 days after the catheter was removed still in pain, running a fever and additionally his incision site appears to be getting red. Today a Urologist was called in, a friend of mine who is a nurse at Tampa General Hospital and who has extensive knowledge inserting and removing catheters suggested that Urology get involved but I found out that one had already been called. The Urologist who is a resident stated that she felt that it might be muscle spasms coming from his bladder. The spasms might be happening because of the stent that was put in during the transplant which is scheduled to be removed at 6 weeks post-transplant. She prescribed Michael Oxybutynin to relax the muscles of the bladder in hopes that it will ease the pain he is experiencing. When I asked her if there was a chance that Michael's bladder or urethra were damaged by the catheter she stated that she didn't believe so but we wouldn't know until the stent was removed. We are to allow this new medication 24 hours to start working. A team of Infectious doctors came by to see Michael yesterday. Michael has had 3 urine cultures and all 3 have come back negative for bacteria. They will continue doing the urine cultures to make sure nothing is missed. Along with those, they are doing blood cultures and urine analysis. They haven't really used the word "infection" but I strongly believe there is one. I may not be a doctor but I am a "mommy", when you see redness, swelling and a fever that all points to an infection in my "Journal Of Mommy". Michael has had 3 bags of blood transfusions, they seemed to have helped with his energy level. When I last spoke to him he was about to go walk the hospital halls. He is upbeat and has not let any of this affect his positive attitude. I wish I was like him. Onward to a positive step ~ Michael had his staples removed today! He said it wasn't too bad until the last two. He obviously handles pain well! His new kidney is still working great, so thank God for that. To those reading this blog and who believe in prayer, I ask that you pray for Michael as well as his doctors. That our Lord God will enlighten the doctors with what type of medicine Michael's body needs to completely heal itself and that Michael's body will increase in white blood cells so that it can defend itself and make my Mikey healthy again. I love this man with all my heart and I want nothing more for him to be home with me. I miss his smile, his laugh, his jokes, holding his hand, kissing his beautiful face, our date nights and worshipping with him at church. If time could only really fly.

Staples and more Staples.

Staple free.

Redness?

23 Staples.

“For with God nothing will be impossible.” (Luke 1:37)

"Healer" 

Michael ~ Cutest boy on the planet.

14 Days Post-Transplant. You are not alone and neither are we, His presence is with us and His Grace is sufficient.


God's Blessings. Lilly 

If Only Time Could Fly

I left Chicago with a heavy heart on Saturday night. It was difficult coming home and knowing Michael would not be with me. It was difficult to know that I wouldn't be there for him, to walk the rest of this journey by his side. It broke my heart. I slowly and quietly released some of the pain while I cried as the plane took off and the city beneath me became smaller, until it was only tiny lights that shone like stars in a dark winter sky. That was one of the hardest things I have ever done, I felt torn inside. When the plane finally landed in Tampa, my daughter Jill greeted me with a huge hug and kiss at the gate. She has always been a ray of sunshine to me. She is petite, has a contagious laugh, great sense of humor and spunk. She has been a cheerleader since the age of 12 and now at 20 she volunteer's as a cheerleading coach at a local high school. Cheering is in her blood. Though Michael is not her biological dad, they share some great qualities and get along fabulously. I couldn't ask for them to have a better relationship, I know they love one another and we are truly a family without seams. Jill chatted with me all the way home, it was so good to see her. She is a really great daughter who has always been responsible and has never given me a bit of problems. I don't know what I did to be so blessed with my Jilly Bean! When I arrived at home around 11pm, I went directly to bed and slept for 12 hours! If anyone knows me, they know I don't ever sleep in but my body must have really needed it! On Sunday, I spoke to Michael who indicated that he was having a hard time passing urine. Of course, anytime after having a kidney operation not being able to pass urine is not what you want to experience. I became worried because Friday night we had seen blood in his urine, was all this a coincidence or did it all add up to something? Around 10pm that night I received a text from Michael stating that his parents took him to the Emergency Room, he was in excruciating pain when he would try to pass urine and now he was only producing about an ounce. I tried to calm my racing mind and I assured him it was probably just a Urinary Track Infection. Time seemed to stand oddly still as I waited for him to give me updates. Finally around midnight he stated that the ER doctors were thinking it was a UTI but that a urine culture had been ordered. About 1am Michael called and said that Dr. Leventhal had admitted him into the hospital and that they would be doing a bladder and kidney ultrasound to make sure they were both working as they should be. I finally fell asleep and when I woke it was 7am and I sent Michael a text to see how he was doing. He said that both ultrasounds came back normal, Thank GOD! But now, the doctors were not convinced that it was a UTI, they were going to run a 2nd urine culture. One of the doctors who came to see him thought that maybe Michael's urethra was damaged when the catheter was placed after his surgery, this would explain why it was so painful for him to relieve himself. They also discovered that Michael was extremely dehydrated and this would clarify why he wasn't creating a lot of urine so they started a fluid IV right away. Along with the fluids, he was given a blood and platelet transfusion to increase his red blood cells and Neupogen shots to increase his continued low white blood count. He is receiving exceptional care and I can't imagine him in a better place. I spoke to Michael about an hour ago and he sounded so much better. He was producing more urine and though it was painful it wasn't as severe. He also had the energy to walk around the hospital floor two times. Though this might seem like a set-back, I choose to see it as God's way of giving Michael the care he needs right now. My friend, Shelley had on her Facebook page "Choose Joy", today I am "Choosing Joy" and thanking God for being with Michael through-out this and providing him wonderful care through the hands of great doctors and nurses.  

Daily measurements that have to be logged and reported to doctor at each visit.

Red Blood Transfusion due to the Chemotherapy treatments he received.

 Platelets as well.

 Current status of Patients that have participated in this study.

 Results for Chimerism (When the body reaches a hybrid system)

11 Days Post Transplant. Today we "Choose Joy", I hope that you join us in this. You are not alone, and neither are we. 

Blessings, Lilly :)

A New Normal

Joe and Heather left yesterday morning to return to Canada and to their friends and family. "There is no place like home", right? I was delighted for them but sad to see them go. Joe, though being the donor and going through major surgery had a way of exuding calmness and sincerity creating a balanced and healthy view of the circumstances. Heather is fun and outgoing, the type of girl who talks to strangers in elevators and has a contagious laugh that lights up her beautiful blue eyes. I'm thankful that it was she that traveled this road by my side. I tend to be anxious in situations like these, it could have something to do with losing my first husband at the age of 30 to cancer or it can just be the way I'm wired but Heather showed me a different way to view things. While our husbands were in surgery and in recovery, she was calm and positive which did have a slight soothing effect on me. Michael and I will forever be grateful to them both, for their unconditional and selfless love and for a gift that is immeasurable. Michael and I walked them down to to the hotel lobby and we gave each other big hugs. Joe reminded Michael to "take care of my kidney" and Michael gave him a heartfelt "thank you for doing this". I don't know about you but it sure did give me misty eyes! We pray that Joe will continue to recover and that he will always be blessed with health. We woke up this morning with a slight powdering of snow! It looked so pretty and it delivered a feel of Christmas. Though it made us want to curl up and stay inside, Michael had a long day ahead of him. It started with arriving at the hospital by 8:30am, Michael's blood was drawn around 9:00am.  He then had to wait around for 2 hours so that the lab results could be faxed over to Dr. Leventhal's office. To pass the time, Michael and I as well as his parents had breakfast at the hospital as Michael rested as much as he could. His incision is still painful which causes him to still depend on pain-killers to get through an entire day. He has decreased the use of them each day and now is down to 2-3 a day. Getting better each day! I took a walk to the hospital pharmacy to pay for Michael's anti-rejection medicine, $1,200 for a month supply. Not as bad as we expected since we had read that it could be as much at $6,000 a month! Our health insurance has a mail-order system that will allow us to receive them at a much lower price starting next month so that will be a huge savings.  Along with that,  Medicare assists ALL kidney transplant patients for the first 36 months after transplant regardless of income. Medicare becomes primary insurance and our insurance will become secondary so we will only be responsible for 20% of the cost of his transplant medications. We are hoping that Michael will be off all anti-rejection medicines by next year this time, that is the goal with this clinical trial and the reason Michael took the chance on it. Around 11am we headed back to Dr. Leventhal's office to hear the results of his blood work. We were called in and they wasted no time in putting an IV on him. He was dehydrated and he was running a risk of tachycardia with a pulse rate of 113. Michael has been doing GREAT in drinking his water, he has been consistently drinking over 100oz of water a day (not easy for most healthy people, and much harder when you are just out of surgery) but since the new kidney is in "work" mode, its creating more urine than what he is taking in in fluids. The nurse explained that this is normal for kidney transplant patients and that it will take a few days before his system is all back into a normal rhythm. In the meantime, they help out by providing IVs to keep him hydrated adequately. His white blood count is still so low it doesn't even measure, this side-effect is typical for this study since chemotherapy was used. The nurse gave him a Neupogen shot to assist his bone marrow in the production of these critical infection fighting cells. We also found out Michael is low in platelets and was given a second shot of Procrit to help increase his platelets. If his platelets are still low on Monday, he will receive a blood transfusion.  Please pray that his body will start producing its own white blood cells and platelets, that God's healing be felt and seen in his body. These are all normal side-effects of chemotherapy and expected to occur as Michael's body battles the effects of it. Dr. Leventhal's staff is quite proficient and competent and the doctor is incredibly aware of what Michael's body will need before the labs are in. We feel that we are receiving excellent care, as well as being in discerning hands. This evening we had a slight scare. (Okay, I had the scare). There was blood in Michael's urine. Michael seeing that I was worried said, "there is no need to worry until we are told there is something to worry about" (no matter what is going on, he is cool and collected). I called the Transplant Hotline with a pounding heart and after about an hour, received a call back. We spoke to one of the Transplant Coordinator's who we had met on Wednesday. She assured us that this is commonly seen in kidney transplant patients, it can be anything from having a catheter in for 5 days, to old blood in the bladder from attaching the stent in the ureter. There is a slight chance that it can be a urinary infection and if it continues, they will be testing his urine on Monday and doing a culture as well. We are grateful for the hotline, it gave us a peace of mind to share and enjoy our last night together in Chicago. I leave and go back to Tampa tomorrow evening. This is going to be very difficult for both of us. Its been my honor and my pleasure to be his partner in this. My focus was to be his soft place to rest and provide a peaceful and loving environment, to bring comfort through his pain. I love this man with all my heart and I will be leaving a part of my heart behind with him. As it currently stands, he will be here until mid-January. I pray that time will fly, that his healing will be supernaturally fast and that he will be released from his doctor's care sooner than expected with a wonderful and healthy report!

1 Corinthians 13:4-7

 ⁴ Love is patient, love is kind. It does not envy, it does not boast, it is not proud. ⁵ It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. ⁶ Love does not delight in evil but rejoices with the truth. ⁷ It always protects, always trusts, always hopes, always perseveres.

The brothers say their "good-byes" as Joe returns to Canada.

We arose to some powdering of snow. Neat to visit but beach sand is much more fun!

Michael was stuck with needles 10 times today.

Our hotel has a small kitchen and I was able to prepare low-sodium, kidney friendly dinners for Michael. He ate about 2/3 of his dinner last night! :-) I also prepared other meals and froze them so he can eat them as he feels up to it.

8 Day Post Transplant, how quickly the week went by. Being ill and recovering from surgery can take one to a secluded place. Where one is temporarily cut-off from the "normality" of life that can be quite easily taken for granted. As Michael travels through this season in his life, I pray that he never feels alone in his struggles, pain or recovery. He is loved and supported by so many. His unwavering positive attitude and courage makes me so proud of him! No matter where you are in your season, know that you are not alone, and neither are we.

God's Blessings, Lilly :)

First Post-Op Appointment

At 8:40am Joe and Heather took a cab with us to Northwestern Memorial Transplant Clinic for post-op visits and labs. The 10 minute trip to the hospital, 19th floor elevator ride and walking into the clinic took a toll on Michael's energy level. We checked in with the clinic front desk while Michael walked straight to a seat in the back of the crowded waiting room where there were several empty chairs. He sat back and leaned his head back, closed his eyes to rest. As he began to catch his breath, he heard a gentle voice say "I'm sorry, I don't want to bother you but I see you are wearing a mask. Are you in the Dr. Leventhal study?". It was a question that perked Michael right up, how would another patient know unless maybe they were a previous patient. By the time we had checked in and walked to the back of the waiting room, Michael had met PATIENT #8, Lindsay! She had been in the study 1.5 years ago. She was the picture of perfect health. Radiant, happy and glowing with joy. She was also born with PKD and her mom had passed on because of this damaging disease. Lindsay's kidneys were so large (each the size of a football) that it required to have them surgically removed before she was able to receive a donor kidney. The bilateral nephrectomy surgery was a difficult one, considered to be riskier than a transplant due to potential complications on account of infections. After healing from her bilateral nephrectomy, Lindsay underwent the research study that Michael is now in the process of. She is completely off all immuno-suppresents and is currently only taking one pill a day to avoid infections. Amazing, right? Lindsey had wonderful things to share about the study as well as Dr. Leventhal and his staff. The reason she was there today was to get re-immunized. After a Stem Cell Transplant the patient is likely to lose some or all of the natural, or man-made disease immunities they used to have. Quite simply this is because the high dose chemotherapy killed off many or all of the antibody producing cells that provide immunity. What are the chances of meeting two study patients in 2 days? Coincidence? I personally don't believe that, there is a purpose for everything that happens between heaven and earth. We hope to stay in touch with Lindsay and share this journey with her, Larry and others in this study as we find one another. Michael was called into the clinic and brought back to be put on a fluid IV as well as to receive a Neupogen shot. While on fluids, Irma and Dr. Leventhal came by to check up on him. Dr. Leventhal took a look at Michael's incision stating it looked good and that he expected Michael's blood count to be even lower today. He was right, the labs showed that Michael's white blood count was now at .1 and his platelets were 66,000 (normal range is 150,000-350,000) creating a risk of bleeding since the principal function of platelets is to prevent bleeding. We saw evidence of this when the nurse removed the IV and it took a while to stop bleeding. While there, Michael was met by another Pharmacist who quizzed him on his medications and went over each one carefully. They expect him to take full responsibility for his medications, not only is he to learn the name of each pill but also the dosage, color/look, how many to take and how many times per day. He did fairly well since I had started quizzing him myself Monday night, we felt that it was crucial that he recognize his medications. We also took pictures of each of his medicine bottles showing full detail of each label and created a file on his iPhone specifically for them. An A.M. and P.M. alarm was set up on his iPhone to remind him it was time to take his medications. We saved the 24hour/365day Transplant Hotline number on both of our phones. I'm sure there will be many more things to remember, learn and make notes of as we move through this process and experience more. Joe was released today from the doctor's care and allowed to fly back home to Canada tomorrow afternoon. His appointment went well and Joe is bouncing back quickly. Today, Heather and Joe went Christmas shopping and walked around the downtown area. I ran into them in the lobby of our hotel and he looked really good after an afternoon of walking around and shopping. Its amazing how rapidly he is healing.

Lindsay - Patient #8.

Michael and Lindsay at the clinic.

Dr. Leventhal examining Michael.

 Joe and Heather visiting the Aquarium.

 

Post Transplant day 6. You are not alone, and we are truly finding out that we are not either in so many ways!

God's blessings, Lilly :)

Released!

Michael was released from hospital yesterday around 4pm. How does one express the joy of that one monumental step in this process? The day before, Michael had one more round of Cytoxan which is a chemo that is normally used for lymphoma or leukemia but also used in this study to make sure there is enough space in his bone marrow so that Joe's stem cell's can take and multiply. Yesterday, Michael's WBC (White Blood Count) went down to .4 (normal is 4.5-10), this is precisely what the doctors want to see, even though Michael's body is now void of defenses to fight infection. He was given a second shot of Neupogen to get those numbers up and he will continue to get these shots until those levels are safe again. Michael will have to wear a mask when out in public and either he or I will have to wear a mask at all times when we are together in our hotel room (or when we have visitors). During Michael's last day in the hospital, we were praying that he would not experience the same side-effects he had previously. I can happily say that he experienced minor ones, mostly weakness and low energy. One of the highlights of his day, which he could NOT wait for was the removal of his catheter. It had been in since the day of surgery and it was quite uncomfortable, Michael called it "torture". The nurse quickly removed it and angels were heard singing! :-) The day he was discharged, we had a host of people come through his hospital room with instructions. Dr. Leventhal came through to finalize the discharge and spoke with us for a bit. He is quite an intelligent man, a driven one who wants to make a difference and frankly I feel that he already has. We also met with the hospital social worker who was arranging things with our insurance company. The dietician came by to answer our many questions concerning Michael's diet. Michael will not be able to eat anything raw (i.e. fruit, veggies, sushi, nuts...etc) until his blood count is back to normal. They would like him to consume a high protein diet but limit his intake of sweets/sugar because of the continued potential side effects of his anti-rejection medications. It will be just as important to watch his salt intake to avoid water retention or increased blood pressure. Irma, who is Dr. Leventhal's RN and who has been our contact during this study came by to go over Michael's medications, answer our questions and instruct us on how to keep track of all medication taken, body temperature, blood pressure, fluid intake (3-4 liters of water/day) and urine output. I truly like Irma, the best I can describe her is a "constant", she exudes balance. A smart woman, with a sense a humor, a friendly smile and precise. After Irma left, the Pharmacist came by to review again each of Michael's medications. He patiently went over each medicine, explained what it was for, potential side-effects and answered our questions. Finally, Michael's nurse came by to review our discharge papers. Pages of them! We had been so excited to get out of the hospital all day and now we were just exhausted, so much to process but all so appropriately crucial. We also had two special visitors yesterday morning. PATIENT #14 and his DONOR! Michelle was the donor for Larry, she found my blog and emailed me.  Her email heading read "Been there and am still there". What a huge surprise, right?!? We both were so excited to have someone who was currently going through this study contact us and share their experience. Michelle donated her kidney to her fiancé, Larry on October 27th. They are both from Kentucky and were as well staying in Chicago until Larry was released to go home, which will be today! I'm so happy for them! Larry had known he had "bad kidneys" since around age 18. Slowly they decreased until two years ago his doctors encouraged him to start dialysis. After careful thinking, Larry choose to wait as long as possible and stay away from dialysis. This past January/February, Michelle (who is a nurse) found Dr. Leventhal's trial study and contacted his office. After going through the same process we did, they were accepted and cleared to have the surgery in October. Larry, who is not only a fighter but a gentle man with happy eyes and a smile that instantly makes friends went into surgery feeling the damage of the chemo and radiation as well as ongoing kidney failure. He shared with us that he came out of his surgery feeling GREAT! He had not felt that well in 30 years! What a wonderful blessing for Larry! He had, like everyone else a road to recovery that had to be traveled but the bottom-line is that he is doing well and does not regret being part of the study. His decision to do this study still stood strong, even knowing the challenges, pain and suffering his body went through. Michelle is one incredible woman, not only did she donate her kidney to Larry but she also helped care for him during his 5 week recovery period. Michelle is a petite woman, soft spoken, beautiful, smart and so in love with Larry - it clearly shows every time she looks at him. My mind can not conceive that not only was she the donor but she was also recuperating from her own surgery but yet she found the strength to take each step with Larry, Michelle is a true hero. I wholeheartedly wish and pray the best for Larry and Michelle. A new life, full of joy and health. Michael was finally released and we took a cab back to the hotel. He immediately went to bed, took two pain killers and slept for a couple of hours. After waking up, we went downstairs to Joe and Heather's room to have dinner. Michael ate fairly well, I was impressed! I have to say that Michael's kidney is working well, he woke up about every two hours through-out the night to use the restroom. He is still unsteady on his feet and I am his shadow. Today, Michael is doing much better. He has been resting on the sofa watching TV and we are about to go for a walk and then have dinner. Please continue to pray that Michael's bone marrow will accept Joe's stem cells and that the crucial "hybrid" system will manifest itself in the coming weeks.

Where clinical study was held....Michael's room was 1001.

Michael with his night nurse, Allison.

Medications to take daily (Mostly Anti-Rejection and Anti-Infections)

Me ~ Larry ~ Michelle

Larry ~ Michael ~ Michelle

Medicated gauze strip removed from port site.

Chocolate Kidney's for Joe

Thanks Joe!

Michael had these briefs made for Joe ~ "I'm Glad He Only Needed a Kidney"

5 Days Post Transplant. Long days, long nights but time goes by regardless of where we are or what we are doing. You are not alone, and neither are we.


God's blessings.  Lilly :)