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 :)