Preparing For One More Round

What a great day Michael had! He was visited by his doctors and given REALLY great news, his creatinine levels are now 1 which means that his kidney function is in the normal range! YAY! When he entered the hospital, that level was 5.5, what a huge drop! We were told that Joe gave Michael an exceptional kidney. Thank you, Gracias, Merci Joe! Joe is continuing his recovery in a nearby hotel, he and Heather take walks from the hotel to the hospital to visit with Michael. Its a beautiful walk, tree lined streets dressed up with Christmas lights and storefronts with spectacular Christmas tree displays. The streets are amazingly clean and the sidewalks are busy with people walking their dogs, families walking together, mom's pushing strollers and people coming and going to work. As a matter of fact, its a genuinely friendly city. Though its a big city, it has the charm and whimsical feel of a smaller one. I walk to my hotel every evening (which is about 10 mins from Northwestern Hospital) to freshen up and I have never once felt insecure, the walk has actually been quite relaxing and revitalizing. 

Not only did Michael sit in a chair for a couple of hours today, but he also walked around the hospital hallway several times. He is doing tremendous! I'm so proud of him and all he has gone through. He had his dialysis port removed today, one little step in getting out of here but one that was exciting. Today he was discharged from the Recovery floor (a typical kidney transplant patient would have been discharged to go home) and sent back down to the 10th floor where the Clinical Research Trials are administered. Here he will have one last round of chemo to make sure there is enough room in his bone marrow so that Joe's stem cells can attach and grow. We expect him to yet again become somewhat ill with nausea, some weakness and a general ill feeling. It stinks, but it has to be done. The chemo IV drip will last about 3 hours and along with it he will be given a Mesna IV drip for 24 hours to protect his kidneys and bladder from the effects of the chemo. I pray that this session will be a lot easier on his body and that the side-effects will be inconsequential compared to what he previously endured. 

Bye-bye Port.

It was difficult removing port due to amount of scar tissue that had grown around it.

Port Removal.

Michael's first walk around the hallways with his nurse Lily.

Joe and Michael walking their kidneys.

So happy to see him feeling BETTER.

Post Transplant day 2. Nice to be breathing a bit easier. You are not alone, and neither are we.


Gods blessings, Lilly

Hybrid System Begins

Michael woke-up somewhat weak this morning but all in all has had a good day. He is currently sleeping and has been a good part of the day. Its obvious his body needs this rest. We started the morning with a very light breakfast of Jello and broth, he only ate some of the Jello. His appetite is almost non-existant. Around 11am the nurse came in to give him a towel bath but I offered to do it. We slowly helped Michael and his IV pole into the restroom where he was able to sit while I gave him a warm towel bath. It was nice to feel fresh and clean after laying in a bed for a few days. Today was going to be a big day, Joe was going to be discharged from the hospital (Already! Can you believe that?), and Michael was going to receive Joe's stem cells that would hopefully be the key to being free of all immunosuppressant drugs. Joe's stem cell's were given to Michael, almost like a blood transfusion, through an IV that was placed in his arm. We all stood around his bed as the doctor administered the cells and looked as Joe's stem cells slowly dripped into Michael. Now we have to pray that Michael's body will not reject these stem cells and that it will develop a hybrid system consisting of both his and Joe's bone marrows. After the stem-cell transplant Michael was sleepy and slept on and off all day. One of Michael's great friends, Adam, came by to visit him. Michael was so excited to see Adam, that in his drug induced sleep he kept reminding me that Adam was coming by. Adam and Michael have known each other for a number of years and have a lot in common with their sense a humor and career choices. They have been there for one another through difficult times and fun times. It was great seeing Adam again, his career keeps him traveling through-out the US and abroad and since he moved away from Florida we don't see him as much as we would like to. Michael was able to rest a lot today. I'm praying that tomorrow will greet him with renewed strength, more comfort and good health.

Thought it funny that Michael's RN today was Lily and his Patient Care Tech was Rosa...My mom's name is Rosa and of course I go by Lilly.

Storage container that Joe's stem cells were delivered in.

Lid to the container, registering -157c

Frozen in liquid nitrogen.

Stem Cells being removed from container to be defrosted.  

Dr. Leventhal preparing the stem cell IV.

Stem cells being delivered. 

Adam's visit with Michael.

1 Day Post Transplant. You are not alone, and neither are we.

Gods blessings, Lilly

It's In!

36 Hours. Incredible how much has happened and what a turn around Michael has had. First, I'd like to say that Michael's transplant went great! He is doing well and resting, right next to me. Now, lets go back 36 hours. The effects of the chemotherapy along with the total body irradiation took a heavy toll on Michael's body. He had an extremely difficult night before his transplant, the effects of the treatments were definitely wrecking havoc with no mercy. Michael's temperature fluctuated all night long, it was controlled somewhat with Tylenol but yet at times he had spikes. Along with a host of other symptoms as well as weakness and body aches we both were up about every 30-50 minutes all night long. We both were exhausted and Michael could not wait to get into surgery. Nurses came in at 6am to give him a sponge bath with anti-bacteria soap to prepare him for surgery. Doctors started coming in around 6:30 to introduce themselves and give us information concerning the procedures they would be in charge of. Around 7:30am we were told that Joe was taken in for surgery. His surgery would last about 3 hours and he should then be in recovery for about an hour or two. Joe went into surgery perfectly relaxed and cool! No worries and calm. How wonderful, right? Michael was taken to his surgery prep-room around 11:30am. We were then greeted by a host of doctors and nurses, all introducing themselves as part of Dr. Leventhal's team. They were all wonderful and very thorough. While in there, Joe's surgeon came by to let us know that Joe was in recovery and doing well. He stated that his kidney had been processed and it was sitting in an ice water bath waiting for Michael. Amazing, right?  Dr. Leventhal was the last one to come by, he went over the procedure, and answered all our questions. Michael went back into surgery around 12:45 but  the surgery didn't get started until about 1:30pm. Micahel was still feeling the effects of the previous night but he was calm and ready to "get some sleep". At 2:30pm I received a call while in the waiting room by an operating room nurse, she stated that the kidney was in and Michael was doing well. At 3:30pm I saw Dr. Leventhal walking towards us, my heart started beating hard against my chest. He pulled over a chair and sat. Have you ever felt a heat rush through your body before getting some weighty news? From the time he sat down to the time he spoke his words, I felt that my whole body was engulfed in heat anticipating the words that he was about to speak. He finally said with a smile that Michael was doing good, the kidney started working immediately which was a great sign. Michael had the incubation tube still in because his lungs were having a bit of a hard time working on their own because of the anesthetics but that would resolve itself while in recovery. What a relief, I think I finally took a breath at that moment. Michael was in recovery until about 7:30pm. At about 6:30pm, I felt the anxiety rising in me again, they still had not released him from recovery. I have a hard time just sitting and doing "nothing", I blame my father for that (ha), so I rode the elevator to the 5th floor and once again asked how Michael was doing. They said they were waiting on lab results to release him from recovery. I told the nurse that I had to see him, that my heart ached to be with him and that I guaranteed he would feel better if he saw me! (Corny, right? But it worked and I was being truthful) She walked to the recovery room door and motioned to me with her finger to follow her.  I almost ran before she changed her mind! I gave her a huge hug and entered the curtained area she pointed to. Seeing Michael, immediately released that heaviness from my chest. He was still on oxygen but feeling better. He was a bit shaky but for just having an organ transplanted into him, he looked great! After his labs came in, showing his oxygen level was back in the low normal range, he was released from recovery while still using a nasal oxygen cannula. He arrived in his room in the transplant recovery floor around 8pm. We are all required to wear masks around him since his white blood count is low due to the chemo/radiation he has received. Joe, recovering extra-ordinarily well, walked over to see Michael and check on how "his" kidney was doing. It was so sweet seeing both brothers reuniting that way after such a special and paramount surgery. Yesterday was definitely a long, emotional, grace-filled day with much thanksgiving and gratitude. I'd personally would love to say thank you to Joe. His courage, starting from the day he offered his kidney, the stem cell transplant and the gift of his kidney which is all immeasurable. Not only for the gift of life he gave Michael, but his gift of serenity, calmness, peacefulness that he shared with everyone around him. He is truly a man who knows and exudes God's peace. Joe, I promise to help Michael take care of your kidney exceptionally well, my only concern is that it will adjust quickly to my Cuban cooking!

Joe ready for his surgery.

Michael waiting in the pre-op room.

 Michael and Dr. Leventhal talking before the transplant.

Two thumbs up as he is wheeled away to surgery.

 Joe and Heather, resting after his surgery.

 Anne and Harry with Joe after his surgery.

Joe: "My first meal with my one kidney"

 Michael and I after he was brought up from recovery.

The "kidneys" reunite for the first time. 

Transplant is now behind us. We are so grateful to all our friends and family members who prayed without ceasing. We are so thankful to have you in our lives. Next step in this process will be the stem-cell transplant, one more round of chemotherapy and then we wait to see if Michael's anti-rejection medications can be reduced ever so slowly until he is free of them. This reduction process can take about a year. It's good to be over this major hurdle and we did it with you. You are not alone, and neither are we.

Gods blessings, Lilly :)

The Fight Begins

This morning I woke up and had a cup of cafe con leche with my mom. She will be staying at our home with Jill while I am gone. She read Psalms 91 and prayed for safe travels and a great outcome for both Michael and Joe, "by His strips you are healed". After giving my mom a hug and kiss, my daughter drove me to the airport to catch a plane to Chicago.  She gave me a pep-talk, she knows that flying is not one of my favorite things. She loves to fly and travel, even though Michael is her step-dad, they are so much alike.  It was a beautiful day to fly, blue skies and no turbulence. The lady who was sitting by me in the plane was a research nurse who had worked at Northwestern Memorial and we talked quite a bit. Neat how God puts people in our paths. When the plane landed I could NOT wait to get to Michael. I took a shuttle to the hospital and with my suitcases and all ran to his room. While rushing through the hallway, I ran into Michael's father, mom, brother (Joe) and Heather. They were going downstairs to the cafeteria because Joe had to have an early meal to prepare for his surgery tomorrow. When I entered Michael's room I found him covered from head to toe, shivering under his blankets. Immediately a lump formed in my throat, the total body radiation had worn his already chemo laden body. He had a fever of over 103f, his blood pressure was elevated, as well as his heart rate. I put my heavy winter coat over his shaking body and started rubbing his feet and legs to warm them up. Eventually the nurse came in and per doctor's orders gave him 1600mg of Tylenol. After about an hour, his temperature went down as well as his blood pressure and heart rate. The nurse came in while Michael was asleep to tell me that he had a fainting spell in the shower. He passed out, hit his head and chipped his front tooth (I'd say that was a hard fall). When his dad Harry heard the fall, he immediately called for the nurses. Within seconds, Michael's room was filled with nurses coming to his aid. They aren't 100% sure why he passed out but they are attributing it to his weak state and taking a hot shower. I'm just relieved to know that he didn't have any serious head injury from that fall. This evening, Dr. Leventhal came in to talk to Michael before tomorrow's surgery. He felt both Michael's sides to determine which side of his abdomen he will be putting his new kidney, as for now, it looks like Michael will have his new kidney on his right side. He answered all our questions and to my relief had a fun sense a-humor. Michael has not eaten much today and is still fighting a fever. It had gone down to 101 but its back to 102. He is a bit nauseous and the nurse will be coming in to give him some Ativan to control the symptoms, it should also make him sleep which will be good since he does have a big day ahead of him tomorrow. Joe will go into surgery at 7:30am, it will take about 3 hours to remove his kidney. Michael will go into surgery at 11am, his surgery should last about 2-3 hours. Tonight Michael will be getting all his pre-op testing done.  Six vials of blood have been drawn and are on their way down to the lab. Tomorrow is a huge day, I just pray that Michael starts feeling better. I can't tell you how eerie it is to see him so still, he is normally so full of life and laughter. My prayer tonight will be that God will be with both Joe and Michael and that He will use the surgeons hands as His own hands to perform His work, for His Glory.  Amen

Flying over Chicago.

Michael, fighting the effects of the chemo and radiation.

Dr. Leventhal's visit.

I was told I could not use Michael's restroom......

Pre-surgery lab work.

To Michael.....Love ~ Me.

13 Hours to Transplant. May God's mercy and grace be with us all. You are not alone, and neither are we.

Gods Blessings, Lilly

PKD - The Wheels are in Motion

After all the tests were completed by Michael and Joe, we then all waited for the green light.  I can't express enough how relieved Michael was when the call came in from Irma to set-up the transplant date!  It had happened, he was accepted. Now all we had to do was agree on a date. Based on Dr. Weinstein's timetable, we understood that Michael's kidneys were going to function without the need for dialysis until about September but Michael, being the optimist, decided to take on his most challenging busy season during August-October and plan on having his kidney transplant in late November, which is his slower time of the year. I was concerned about him being on the road and having such a hectic travel season while running on about 12% kidney function but he did! I have no idea how, but he did! At one time, Michael had 25 shows in 22 different states all back to back dates.  He ran on little to no sleep and gave amazing and mind boggling performances for his clients.  His perseverance and dedication proved to dominate his PKD. Bravo Michael!

Michael was started on Chemotherapy on Sunday.  It was a short 30 minute session and he felt good through it and after it.  The nurses were careful to give him anti-nausea medicine before the treatment, so we don't know if that is what helped him or if its too soon to really be feeling any effects. Yesterday when the nurse was preparing Michael for chemo, she administered Ativan. Michael asked what it was for and she said anxiety. He wondered why she would administer something for anxiety when he felt none whatsoever but she clarified by saying that it was used as an anti-nausea. No anxiety? How was that possible? I had to ask Michael if he really didn't have anxiety about this complex study with so many unknowns. He said with a compelling voice, "I have not one bit of anxiety or fear". My mind can't comprehend that, what a peaceful place he must be in. Michael is a corporate speaker and during Michael's key note speech he quotes a line out of James Allen's book, "As A Man Thinketh", it reads "The vision that you glorify in your mind, the Ideal that you enthrone in your heart, this you will build your life by, this you will become". Michael has a vision, a healthy and positive one. Today he will be receiving about 3 hours of Chemotherapy. Michael will also receive a 24 hour drip of Mesna. The Chemotherapy can cause irritation and bleeding from the lining of the bladder and the kidneys, Mesna helps to prevent this by protecting Michael's bladder and kidneys. Michael's urine is being closely monitored and tested for signs of blood. Salt water mouth rinse must be done 3 times a day to prevent mouth sores that the chemo can produce. Michael's blood pressure has dropped since being on Dialysis as well as his creatine level and his GFR has gone up. Creatinine has been found to be a fairly reliable indicator of kidney function. If the kidneys become impaired for any reason, the creatinine level in the blood will rise due to poor clearance by the kidneys. Abnormally high levels of creatinine warns of possible malfunction or failure of the kidneys. A normal creatine level is between 0.6 to 1.2. Going into the hospital, Michael's was at a 5.5 and it is now at 4.1. His GFR (% of kidney function) has gone up from 11% to 16%.

Below is a link to "As A Man Thinketh" by James Allen. It's a quick but priceless read.

http://jamesallen.wwwhubs.com/think.htm

Michael's IV - Chemotherapy.

Michael's Schedule.

OKAY

Michael with his parents, Harry and Anne.

3 Days to Transplant. Turning the corner and gaining speed. You are not alone, and neither are we.

Gods blessings, Lilly :)

So it Starts

Michael and Joe left the meeting with Dr. Leventhal with a long prescription list of diagnostic tests and labs to complete before they could move to the next phase of this complex and precise qualifying agenda. The next few weeks we spent in and out of diagnostic testing facilities as well as labs.  Michael had dozens of vials of blood drawn, chest x-ray, echocardiogram, abdomen scans, EKG, stress test and several other diagnostic tests specifically completed to the doctor's orders. At times it was difficult sitting in these diagnostic waiting rooms, surrounded by people who were obviously ill, fighting their own diseases and dealing with their own fears. Their faces, young and old, clearly showing the weariness and pain in their hearts. It was impossible not to hear them as they shared their struggles with the person sitting next to them, my heart would grow heavy for them as well. I remember looking at Michael, the picture of perfect health. A man who never complained of any symptoms, it was callously surreal to sit in those numbing waiting rooms and come to the understanding that he was quite ill and that he was carrying inside him a disease that was terminal without medical action. At times, it is still difficult to digest what he is about to go through, but I'm so grateful that there is hope and advancement for those living with PKD and needing organ transplants. Though all the testing turned out to be emotionally trying and time consuming, we were happy to know that Michael was an extremely healthy man aside from his PKD.  YAY, Michael!  

Today Michael was admitted into Northwestern Memorial Hospital. He will be there until he is discharged after his transplant. He received his first dialysis treatment which was 2 hours long. The dialysis treatments will increase in duration each day. He said that he did not feel a thing during or after the treatment (he does sound like he is already getting bored - lol). Dialysis will be administered each day until his transplant day. The reason? Michael will start on chemotherapy drugs (Fludarabine and Cytoxan) on Sunday to make "room" in his bone marrow for the stem cell transplant, known as a "mini" bone marrow transplant. His current kidneys are not healthy enough to withstand the chemotherapy, the dialysis will be used to do the work of his kidneys. When Michael's bone marrow is partly destroyed and marrow from Joe is introduced, Michael will develop a "chimeric" immune system, bearing characteristics of both his and Joe's. When both bone marrows produce immune cells that mature in one body, the two immune systems learn to recognize each other as part of the same body and do not attack each other. This should make it easier for Michael to tolerate Joe's kidney and hopefully keep this kidney for life! Today I got a treat!  Michael FaceTimed me and took me along for a walk around the hospital and to to the cafeteria to get a cookie, I even had a chance to see his nurse Allison. It was so great seeing his beautiful face.  

Relaxing in his hospital room - will be here until surgery day.

IV will be used for his chemotherapy.

First Dialysis Session - "Easy Peasy"

Michael's treat to eat at Northwestern Hospital Cafeteria.

5 Days to Transplant! Thank God for the wisdom given to these doctors to open doors and provide a better life for organ recipients.  You are not alone, and neither are we.

Gods blessings.  Lilly :)

PKD Meets the Calm Before the Storm

Michael has had a couple of uneventful days and has taken advantage of them by catching up on business work. Even though he will not be seen by anyone at the hospital until Friday, he was not allowed to fly home for Thanksgiving. A real bummer, right? He still has the port in his chest so that keeps him restricted to the Chicago area. On Wednesday, his parents Harry and Anne, will be driving down from Canada where they live. They will be sharing an "American Thanksgiving" with Michael (only after I met Michael, did I learn that Canadian's have their Thanksgiving in October, how cool is that?) and then they will remain in Chicago for the rest of Michael's stay. Thank God for parents! I will be with Michael during his surgery and a week post-opt. Both Michael and I are self-employed, which produces a very simple equation (no work = no pay)².  This won't be our first Thanksgiving apart, actually it will be our second. Our first Thanksgiving together was celebrated thousands of miles apart. Michael had volunteered to go on a mission trip to Africa with his friend Tim (Matt's father).  Tim and his wife Karen along with their children started a mission in Uganda to help the poor. They founded 3 schools for orphans and needy children. Michael has always had a heart for children, he is AMAZING with kids and is "Uncle Mike" to so many! I feel as if he is still on a mission this year.  Instead of a mission to help needy children, he is on a mission to be part of medical history as he willingly gives his body to a research study which will hopefully pave the way for so many others in need of life saving organ transplants.

(National Kidney Foundation)

1. 104,748 U.S. patients are currently waiting for an organ transplant; more than 4,000 new patients are added to the waiting list each month.
2. Every day, 18 people die while waiting for a transplant of a vital organ, such as a heart, liver, kidney, pancreas, lung or bone marrow.
3. Because of the lack of available donors in this country, 4,573 kidney patients, 1,506 liver patients, 371 heart patients and 234 lung patients died in 2008 while waiting for life-saving organ transplants.
4. About 94.4 percent of the kidneys transplanted from cadavers (persons who died recently) are still functioning well at one year after surgery.
5. The results are even better for kidneys transplanted from living donors. One year after surgery, 97.96 percent of these kidneys were still functioning well.
6. In the United States fewer than 2.5% of patients with end-stage kidney disease undergo transplantation as their first treatment or therapy. The National Kidney Foundation is dedicated to educating kidney patients about the benefits of pre-emptive transplantation - when a person is able to go straight to transplant without dialysis they usually have good health outcome. 

Better picture of his port. It will be used for dialysis treatments when they start the chemotherapy on Friday. The chemotherapy will be used to create room in his bone marrow for Joe's stem cell's.

 

 

Today Michael and I did some cell phone Christmas shopping. As I came out of Macy's I saw the 3 Christmas trees, they reminded me of a powerful God who is bigger than all this. 

9 Days to Transplant.  You are not alone, and neither are we.  

Blessings, Lilly :)

PKD - Finding Sunshine After the Rain

The next step Michael had been deliberately waiting for, praying for came on August 25, 2011. Finally, Michael and Joe were to meet Dr. Leventhal and attain answers to the questions that had been running through their minds for the last few months. Heather, Joe's wife, would also be going with the brothers. Joe and Heather decided to make the trip to Chicago a weekend visit to the "Windy City" and enjoy some time together. Michael would be performing close to Chicago the day before the visit and he would already be on the road for some of his show engagements, so I decided to join in via a telephone conference. We all prepared our lists of questions and anxiously waited for that day. As I sat in our dining room, laptop open ready with my list of questions waiting to be put on the conference call, I stared at my screen wondering if my questions were even relevant considering I rightfully didn't understand the risks or complications that could be involved. After hanging up that day, the question that I should have asked was "What am I not asking, that I should be". Below is my actual list of questions, alongside them the answers I quickly typed as they were given to us (in CAPS):

1.  How will having a "hybrid" system affect future kidney transplants if   needed.  NO - ONLY IF HE DEVELOPS ANTIBODIES

2.  What types of cancers can emerge from the full body irradiation or any of the other post-op/pre-op meds?  NO DATA FOR THIS TYPE OF STUDY -  NORMALLY PATIENTS WHO ALREADY HAVE CANCER GET RADIATION SO THERE IS NO DATA WITH PATIENTS BEING IRRADIATED WHO ARE CANCER-FREE - ALL PATIENTS WHO HAVE DONE THE STUDY FOR THE LAST 3 YEARS HAVE NOT ACQUIRED CANCER.

3.  Will anti-nausua meds be given before the irradiation treatment? YES

4.  Will having a "hybrid" system affect your other organs? NO

5.  Can you fly home for Christmas if you are still a patient at that time? NO

6.  Has this trial ever been done in the past.....and if so, what was the conclusion/prognosis back then? NO, NOT LIKE THIS

7.  When you have the dialysis, how will it be administered? NECK - SMALL STICK - FOR ABOUT 3 WEEKS

8.  What type of side-effects from the pre-op and post-op meds will you immediately feel and what are the long term effects? NAUSEA, BONE PAIN, WEAKNESS UP TO 4 WEEKS AFTER SURGERY, ORGAN FAILURE, HOST GRAFT DISEASE, STEM CELL TRANSPLANT NOT TAKING

9.  Are your organs protected during the irradiation?  LOW DOSAGE, SHOULD NOT AFFECT ORGANS

10.  What blood type are you? DIDN'T HAVE THAT INFO IN FRONT OF HIM

11.  What are the chances that you will need a blood transfusion AFTER irradiation?  LOW DOSAGE, NOT SAME AS A CANCER PATIENT

12.  If you develop Antibodies after a blood transfusion, your chances of finding a matching donor becomes less likely if you lose your 1st kidney - can he explain why. - WITH EITHER KIDNEY TRANSFER (RESEARCH OR TYPICAL TRANSFER)

13.  Its possible that your donor's stem cells will attack your own body (stomach, skin, liver, intestines)......and can pose a risk to your life - this is normally controlled by anti-rejection meds - Will this cause you to be on anti-rejection meds forever?  How common is this?  DID NOT GET TO THIS ?

14.  In layman's terms - how does this research kidney transplant rate as a life threatening procedure against a typical kidney transplant? NO DATA BUT HE FEELS THEY ARE EQUAL WITH RISK BUT THAT THIS STUDY WILL ENABLE MICHAEL TO BE OFF IMMUNE SUPPRESSANT DRUGS WHICH ARE KNOWN TO CAUSE CANCER AND EVENTUALLY CAUSE YOU TO LOSE THE TRANSPLANTED KIDNEY.  THEIR HOPE IS THAT THIS RESEARCH WILL ALLOW MICHAEL TO HAVE A KIDNEY THAT WILL FUNCTION THE REST OF HIS LIFE.

15.  When you receive a catheter for your dialysis, what is the likelihood that your veins will become enlarged like many dialysis patients? NONE

16.  What types of cancer does Cytoxan cause (one of the most common side effects is cancer)?   NOT AS CANCEROUS AS A LIFETIME WITH ANTI-REJECTION MEDS

17.   Taking into consideration the amount of cancer causing radiation and drugs you will be exposed to during this study.......does this mean that this study increases your chances of getting cancer to a greater extent than the immune suppressant drugs you will have to take for a typical kidney transplant? NO DATA BUT FEELS THAT IT DOES NOT INCREASE CANCER RISK COMPARED TO A NORMAL TRANSPLANT - IF ANYTHING ITS LESS.   

Some of the answers that were given that day, left me with anxiety and uneasiness. There were several unknowns to this research, that I personally felt were important. I believe you have to be a special person to be part of such study trials, I'm a "give me the facts" kind of girl. I rarely take leaps of faith. Michael, on the other hand saw them as small obstacles to overcome and they did not slow down his momentum to secure his place in the trial. Dr. Leventhal was fantastic, easy to talk to and seemed genuinely caring. Wanting to put a face to a voice, I asked if he would pose for a picture so Michael could text it to me, after a few laughs he happily obliged. Now I look forward to meeting him, this man who can potentially provide my husband with (what we like to believe is safe), a "normal" life.  I pray that God will continue to give him wisdom and that he may never lose his vision or passion to cure the ill.

Picture that was taken that day of Dr. Joseph Leventhal. 

Joe left for Canada on Friday....YAY for Joe!  He will now stay in Canada until the day before the transplant.  Joe and Heather will be flying to Chicago on November 30th.  Michael needed his bandages changed on Friday due to some minor bleeding around his port. Michael is still in Chicago and enjoying his time there with his friend Brandan. They have been doing some sight-seeing around Chicago.  From what I have heard, they are not only getting entertained but doing a bit of entertaining themselves! (lol)  I have never met Brandan, but I would like to give him a big hug for keeping Michael company during this time.  According to Michael, there has been a lot of joking around and fun times!  Michael and Joe had great weekends with family and friends, we hope that you did as well!

Michael's port after it was "re-dressed".

Nothing comes between Michael and his chocolate! :)

Lots of fun things to do and see.

11 Days to Transplant.  We are thankful for all those who battle along our side!  You are not alone, and neither are we.


Another of Michael's favorite songs...."Million Pieces".

Gods blessings.   Lilly :)

Gaining Ground on PKD

According to the article Michael had read concerning the Chicago research study, they were still accepting patients.  There was a link to an email address for the transplant coordinator (Laura Coleman), Michael immediately emailed her his background information regarding his kidney disease and his desire to be part of the study. Laura emailed Michael within a few days requesting additional information to determine if he would be a good candidate. After this was confirmed, Michael was given a new contact, Irma Dixler, BSN, RN.  She worked directly with Dr. Leventhal in the research study, she would now be Michael's main contact going forward. In April 2011, Irma asked that Michael email her his medical records, including doctor's notes, labs and diagnostic testing. After this was received we were contacted and asked if Michael could fly to Chicago for an appointment on May 6, 2011 to attend a Kidney Transplant Orientation & Evaluation. When that day came around, Michael was a bit disappointed considering he wasn't given an opportunity to meet Dr. Leventhal and simply had a brief meeting with Irma. The Orientation & Evaluation turned out to be a generic meeting for all kidney transplant patients and was not aimed for those in the research study. He was asked to fill out a Health Questionnaire, provide proof of health insurance and provide another copy of his medical records. Michael's specific questions concerning the study, procedures, eligibility and availability would have to be postponed. Now he had to wait as his records were reviewed, he worked on being patient as he anticipated what the next step would be. 

Link to this study:

http://www.clinicaltrials.gov/ct2/show/NCT00497926?term=kidney+transplant+stem+cells&rank=9

Michael, Irma and Joe today during their recipient/donor consultation.

Joe had his port removed this morning.  He said it wasn't painful and it was quick, just the way it should be! Along with that, they had their recipient and donor consultations, more blood work and an EKG.  During the consultation, they were informed on what to expect before, during and after the surgery. The procedure was explained to both of them and they were given an 8am surgery time on December 1st.  While waiting for their consultation, Michael and Joe met another PKD patient who was also there to get a transplant. Sitting by her were her father as well as her sister, who was going to be her donor. She shared that her kidney function was at 18%. She described some of her PKD history that included high blood pressure, flank pain, nausea and fatigue. Along with this, she had one of her PKD kidney's removed due its large size and excruciating pain. When the kidney was removed, it measured 18 inches in length, the biggest her surgeon had seen!  Michael felt awful sharing that he felt completely fine and normal. His kidney function is at 11% and he has his blood pressure under control with medication, besides a cyst bursting a few years back, he has never experienced an ache, low energy or has he ever felt "ill".  Thank God, right?

Freedom for Joe from that apparatus called a "port".

PKD Kidney's removed from an unknown patient.

R

Michael relaxing and being a happy boy.

This evening Matt and his wife Sasha came to have dinner with Michael and Joe. Michael has been friends with Matt's parents, Tim and Karen, for over twenty years. Michael has always been Uncle Mike to Matt and Matt has always been Matt Man to Michael. So cute, right? Matt came to the United States from Canada to attend college in Bethel, Indiana. He is a wonderful young man with a huge heart, especially for the poor and abused children of Africa.  Matt and Sasha are newly weds, married this past September and I can't wait to meet her! The "crew" is getting larger by the day!  YAY!

Andrew, Brandan, Joe, Michael, Sasha and Matt!

14 Days to Transplant.  To those that fight our fight, stay focused on your reward.  You are not alone, and neither are we.

Gods blessings.  Lilly :)