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.

God's 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.

God's 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.

God's 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".

God's 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.

God's blessings.  Lilly :)

PKD There's a Light at the End of This Tunnel

Michael was faithful in sharing with his family any viable information that he found during his research on PKD. I am not certain if he did it because he was excited that he found a new medical research/therapy or if he passed it along to give us hope as well.  Either way, we were his allies and supported him.  One day Michael received an email from his dad Harry, who lives in Canada. Harry had remembered Michael telling him about the transplant tolerance protocol that was happening in India (he wasn't too keen with that notion) and decided to do some of his own research on the internet.  He came across a site with an article about stem-cell transplants happening alongside kidney transplants in Chicago, Harry believing that he had come across something that was intriguing, immediately emailed the article to Michael. This was it!  This was exactly what Michael was hoping he could find in the United States, could this be his deliverance? This was exciting but there was another potential obstacle in the way. This type of transplant was being conducted only through a research study. Research studies or clinical trials explore whether a medical strategy, treatment, or device is safe and effective for humans. The study was looking for 30 "qualifying" recipients and donors. Both the recipient and donor would have to go through rigorous diagnostic testing, lab work-ups and mental evaluations. Each trial must include only people who fit the patient traits for that study.  Michael discovered that the study was being headed by Dr. Joseph Leventhal.  Dr. Leventhal is an internationally recognized expert in antibody induction strategies for transplantation and the Director of the Living Donor Renal Transplant Program at Northwestern University.  It is the largest living donor program in the United States.  Michael had a new goal, find out more about this study, meet with Dr. Leventhal and be chosen!

Dr. Joseph Leventhal, speaks concerning traditional transplant vs. stem-cell transplant.

Michael and Joe woke up feeling good and back to normal!  What a good night's rest (as well as no injections, no meds, no cell harvesting) can do! Right? One of Michael's old friends from Canada, Brandan came by to spend a few days with him and Joe.  Brandan's cousin, Andrew from Sheffield, England just so happen to be vacationing in Chicago.  Brandan had planned to come see Andrew in Chicago when he found out that Michael would be there as well, so the planning began.  We could say this day fell together by chance, but I don't believe that.  Brandan and Michael attended college together and then later were co-workers in Canada.  Its been 21 years since they last saw each other.  There is NO doubt in my mind that there has been a lot of laughter going on today.  As they were catching up on "life", they had time to do a bit of sightseeing around the Magnificent Mile.  I smile, because I'm happy to know that Michael is having some special moments, good times and living life to the fullest through-out all this.

Michael, Brandan and Joe - Starbucks is not the sponsor for this blog!  (lol)

Sightseeing a bit around Magnificent Mile.

Dinner with Michael, Brandan, Joe and Andrew.

15 Days to Transplant.  To all those in this battle, remember "there is a light at the end of this tunnel".  Below is one of Michael's favorite songs.  You are not alone, and neither are we.

God's Blessings.  Lilly :)

PKD There is Hope

For months I saw Michael on his laptop researching, making calls and studying how our country as well as other countries were handling this disease .  One afternoon he came across a site that made him stop in his tracks.  "TOLERANCE the breakthrough to organ transplant."  A transplant tolerance protocol that had been started in India in 1998 with small doses of pre-transplantation donor-specific transfusions. By 2010, they had more than 1500 kidney transplant recipients transplanted under continuously improving transplantation induction protocol. Doctors in India were transplanting donor stem cells along with the kidney to create this "twin" system of donor and recipient. The new system would recognize the kidney as its own!  Now this was exciting but I wasn't too sure about Michael going to India to have this procedure done.  There was so much to think about and I honestly did not like the idea of Michael being operated outside our country, what if something major happened?  How would it be handled? What were the risks? Would our health insurance even cover it? Would his brother agree to fly across the world and put his life on hold for 3 months and go through a risky procedure in another country? My brain exhausted itself. Michael, on the other hand was excited and wanted more information. Michael had several email conversations with the hospital in India and was seriously considering this route.  He also spoke to a doctor in New York, Dr. Mark Hardy. He had an impressive list of credentials and Michael was determined to talk to him. During Michael's research, he found Dr. Hardy's cell number! A direct life link to the doctor who so highly addressed the transplant tolerance protocol that was happening in India and who himself had interest in the transplant tolerance induction. Michael got a hold of Dr. Hardy on his first try!  They spoke for a while and the doctor agreed that he liked what was going on with transplants in India but he wasn't sure if it was ready for prime time. After Michael's conversation with this doctor, he was determined to find out exactly what transplant tolerance was and who else was doing it. India could not be the only place doing this remarkable life altering transplant!


After four days of Neupogen shots, both Michael and Joe are feeling their side effects.  Bone and muscle aches and a general "flu-like" ache are the most common side effects while on Neupogen. Michael and Joe are managing the side effects mostly with Tylenol. Today was their last day on Neupogen but the side effects have peaked and the pain is uncomfortable. Hopefully they will have relief soon since that part of the study has been completed. The next step? Stem Harvesting which was done this afternoon. Stem cells are formed at the marrow and are common blood cells from which other specialized blood cells, like immune cells, develop. By transplanting stem cells from the kidney donor into the recipient, researchers hope to prove that the cells will mature in the recipient's body and work to prevent rejection of the new organ, allowing the immune system to accept the organ as its own. The stem cells are collected from the kidney donor using a process called Apheresis. This process involves passing your blood through a special machine that strips the stem cells from the blood, and then returns the blood into the body. The procedure took about 4.5 hours and 21 liters of blood was filtered! Both Michael and Joe had tingling in their lips, arms and hands during the procedure which is common.  They were given calcium and magnesium tablets to counter-act this reaction. The brothers are resting comfortably in their hotel room tonight.  Tomorrow is their "rest day" to do whatever they want in Chicago, I believed they earned it!  Don't you?

Michael's Labs going in - 11% Kidney Function and STILL feeling FINE!

The Apheresis Machine.

Joe during the harvesting of his stem cells.

If you ever wondered what stem cells looked like......

"Dr. Mike will see you now" (lol)

16 days to transplant.  We sincerely hope that those who find this blog and are fighting this same fight will find relief, answers and companionship.  You are not alone, and neither are we.


God's Blessings.  Lilly :)

Michael's Fight with PKD

Michael became determined to fight the battle to save his kidney's after his first appointment with Dr. Weinstein. Michael was informed that there was nothing that could be done to reverse the damage to his kidney's.  At this point we would have to wait until his kidney function was down to 20%, only at that time could the process of the kidney transplant be started.  If Western Medicine could not help repair his kidneys, why not try alternative ways?  Michael began researching the benefits of several natural therapies;  

1. The Raw Food Diet consists mainly of uncooked, unprocessed organic plant foods.  Michael would juice organic vegetables and fruit for his breakfast and sometimes lunch, he would then have salads for dinner with lots of fresh organic vegetables.  He stayed on this diet for 30 days and lost about 30 pounds. The greatest benefit he received from this therapy was his blood pressure, it was amazing how it went down to normal ranges without medication! In addition, he felt really good and energized.  There was something to this diet that was obviously beneficial but it was so difficult to maintain, especially with his traveling schedule.
2. Acupuncture and Chinese Herbalist was the 2nd phase of Michael's attack.  I  have to admit that I was very surprised that the Chinese Herbalist was able to tell by her examination (examined his eyes, tongue and palm) that Michael's kidneys were not functioning normally (without us explaining the reason we were there). She mixed together a cocktail of herbs for Michael to take daily as well Acupuncture sessions.  Acupuncture is one tool used to restore the flow of chi (qi), by inserting needles into the acupuncture points (located on the meridians). These insertions are said to clear any residing blockages, or dams, in turn freeing the body in its entirety. Didn't see much if any change from this but Michael did not stay on this therapy for long.
3. Lymph Node Therapy was another therapy Michael attempted. Michael had the Electro-Lymph Therapy performed for several weeks. ELT stimulates the movement of the lymphatic system by radiating an energy field rich in negative charged ions, which moves the lymph and dissipates congested cells and protein matter in the body.  This therapy was to clean the Lymph system and improve the blood supply, which in turn has a positive effect on every cell in the body. The outcome?  No benefits, but the drive over the bridge to St. Petersburg was pretty!
4. The Grape Diet was probably the most difficult therapy to see Michael take on.  He made an appointment to see a Naturopathic doctor who put Michael on a Grape and Water (only) diet. This doctor claimed that he had worked with many celebrities and they all had good results from this diet. The longer you can stay on it, the greater the benefit. Michael purchased pounds of organic grapes and ate ONLY grapes for 20 days! Remember, Michael travels A LOT but he took his grapes along.  We would pack them in lunch coolers in his suitcase, just enough to last him while on the road. When he was home, I'd try my best to eat when I was out. It was so difficult to eat in front of him, it broke my heart.  To this day, Michael has no desire to eat grapes. I  have no idea how he did this, when he sets his mind to something he can do anything and this was just more proof.  The only benefit on this therapy was weight loss and his blood pressure went down but his kidney function also declined.  His kidney function was now 12%, it had been 17%.

You might think some of these therapies are extreme or unconventional but Michael was fighting for his life, fighting a disease that modern medicine has no cure for.  Would I have done these therapies if I was in the same situation?  Maybe some, but the question should be would I have been able to do them?  You have to be so mentally strong and committed to put your body through these difficult therapies while being ill and while mentally dealing with the fact that your body is dying slowly.  

Today Michael and Joe went in to have their ports surgically put in.  They both were in good spirits and ready to get it done!  I was in a meeting here in Downtown Tampa with some co-workers when Michael went into surgery.  He texted me before he went in and I anxiously waited for him to text me that all went well with both him and Joe.  At one point during our meeting I was asked if I was nervous about something, I noticed that I had been wringing my hands, slipping my rings on and off. The anxiety inside me was making its way out.  I shared that Michael and his brother were in surgery and having their ports installed and everyone was very supportive and positive.  

I was so happy to see his text come in!

The pictures below might not be for the squeamish - but if you can watch the video of Joe, its truly HILARIOUS!  

Michael right after getting his port put in.

Joe showing off his new attachment.

The rear view.

They can still have fun through it all!  Love it!

17 Days to Transplant.  We hope that we can bring a smile to each and every person going through PKD.  You are not alone, and neither are we.

God's Blessings!  Lilly :)