Friday, December 13, 2013

The "Face" of Polycystic Kidney Disease

Hello from downtown Chicago! I'm currently sitting in our hotel room, across from me are over-sized windows that show me the hustle and bustle of downtown life as well as skyscrapers that make you bend your neck back just to realize you can't see the very top of them. We are just blocks from Northwestern Memorial Hospital and every so often you can hear sirens from emergency vehicles and car horns  of impatient cabbies. Michael is laying next to me, he is quietly sleeping as he recovers from his nephrectomy. On Tuesday morning Michael had both his native kidneys removed. His kidneys had grown to the size of footballs and were causing him discomfort and pain, as well as extending his stomach out to a point that he constantly felt bloated.....the time to have them removed had arrived.  Even though Michael had a kidney transplant 2 years ago on December 1st, his PKD kidneys were still growing and causing him issues. PKD doesn't really go away with a transplant or even with a nephrectomy, PKD is a disease that can also cause cysts to grow in the liver, pancreas and intestines.  Patients have a higher risk of aortic aneurysms and heart-valve defects. Michael will have to have regular testing for the rest of his life.

Michael contacted Dr. Leventhal in August,  and after discussing symptoms and his options Dr. Leventhal referred Michael to Dr. Juan Carlos Caicedo. Michael flew to Chicago in November for his 2 year post transplant appointment with Dr. Leventhal and to have a consultation with Dr. Caicedo.  During that appointment he was able to proceed with all his pre-op diagnostic testing and confirm a Laparoscopic Bi-lateral Native Nephrectomy surgery date of December 10th, 7:30am. 

What is a Laparoscopic Bi-lateral Native Nephrectomy? Nephrectomy is the surgical removal of a kidney. Bi-Lateral of course means both kidneys. The surgery is performed with the patient under general anesthesiaThe laparoscopic approach, which involves the use of a laparoscope (wand-like camera), utilizes three or four small (5-10 mm) cuts or ports in the abdominal area. The kidney is completely detached inside the body and then placed in a bag. One of the incisions is then expanded to remove the kidney.  Patient will require a bladder catheter that is placed once they are asleep and is removed several hours after surgery.
Laparoscopy achieves the same things as traditional surgical techniques and can be used for both radical and partial surgery. 
The advantages of laparoscopic surgery include:
  • Shorter recovery time
  • Shorter hospital stay
  • Smaller incisions
  • Fewer post-operative complications
Laparoscopic nephrectomy takes special skills to perform and is not available at all hospitals. The Northwestern Memorial transplant team has vast experience in performing bilateral or unilateral laparoscopic nephrectomy for polycystic kidney disease. Northwestern transplant surgeons routinely perform laparoscopic bilateral nephrectomy for patients with PKD resulting in low morbidity.  


We were blessed to have Dr. Caicedo do Michael's nephrectomy.  He was a wonderful surgeon who explained everything to us in detail, making sure all our questions were answered. We felt comfortable in his knowledgeable hands.  Dr.  Caicedo is not only a transplant surgeon but also the director of the Hispanic Transplant Program at Northwestern Memorial Hospital. He is also an assistant professor of Surgery in the Division of Organ Transplantation at Northwestern University Feinberg School of Medicine. He graduated from the National University of Colombia in Bogota, Colombia. Dr. Caicedo completed a three year clinical fellowship in transplant surgery including pediatric and adult kidney, pancreas, liver and small bowel transplantation, as well as hepatobiliary surgery. He has also studied laparoscopic donor nephrectomy and vascular access for adults.

This is an example of port placements. (NOT Michael)

Now that I have shared this chapter in our journey....how about some pictures?!  I have a love of reading, but who doesn't love picture books, right? :)

 At Tampa International Airport 12/09/13


Chicago!


Outside our hotel ~ Ontario Street


12/10/13 ~ Surgery day! Walking to Northwestern Memorial.


Dr. Patel ~ Anesthesiologist


 Part of the team that attended to Michael the morning of the surgery.


Dr. Caicedo explaining the procedure before surgery.


 Smile!  Its show time!

2nd time in this waiting room....1st time was for Michael's transplant. 


Michael's kidneys.  


To remove them, they had to take some of the volume off first...they were actually a bit larger than what is pictured here.


These are the smaller cysts. 


Post-op ~ Michael's nurse was named Noelle...how appropriate for this time of year! 


Michael's 3 port sites and the "?" incinsion where his kidneys were removed from.


Night before surgery | Morning after surgery


Night before surgery | Morning after surgery


Yeah...pretty amazing, right?

We are in Chicago until Monday the 16th, this is when Michael will have his post-op appointment with Dr. Caicedo and then we fly on home. How is Michael doing? Really well, I'd have to say his toughest day was the day after surgery when he had severe gas pains from the O2 they fill ones belly up with when doing laprascopic surgery. He is currently taking Tylenol every 4 hours for minimal pain and no other medications. We couldn't have asked for a better outcome.  

During this PKD journey we have met some amazing people as well as had the blessing to have been treated by some of the best doctors in the country and cared for by some dedicated nurses. I'm certain that we are not alone in this PKD journey, and neither are you.

God's blessings,

Lilly :)



Friday, July 19, 2013

It's Been a Good While

Its been a long time since I have sat down and made time to write an update.  Our lives have been full of blessings and happy moments with lots of new things keeping us busy.  First, I'd like to say that Michael is doing AMAZING!  He looks great and feels great. Michael has been off ALL immunosuppressant drugs since February of 2013.  He is officially now one out of a handful of people in this world living with a donor organ and not needing immunosuppressant drugs.  What an incredible blessing, its quite humbling. Life is "normal" again, and normal can really feel GREAT!  
 
I'll back up a bit to share what has been happening with us in the last year.  Back in July, our only daughter Jilliam got married and moved to New York.  Her husband (Artie) is a Calvary Scout for the US Army (Hoorah!) and he is stationed in the bitterly cold and foreign land (to a Floridian that is) Fort Drum, New York. Planning a wedding and all the excitement that comes with it kept us busy with picking out a wedding dress, flowers, venue, DJ, food and the list just went on and on! The wedding was PERFECT and our joy and happiness was abundant...and then came the difficult day of moving our daughter away from home to over a thousand miles away. Though I was happy for her and Artie, it was quite difficult for me. Being an empty nester did not bring the moment I thought it would ring in, instead of confetti falling from the skies, angels singing and balloons being let go to fly up and way above the earth, I felt as if my world had been put on a free-fall roller-coaster....and I HATE roller-coasters. A physical piece of me was gone and boy, did it stink!  This season became another part of life's endless chapters, another "newness" to get familiar with.  It has been over a year  since she moved away and its better but I do miss my "little girl". 

Jilliam and Artie's wedding day ~ Tampa, Florida
 Michael and Jilliam dancing at the wedding



Michael has been busy and back on the road and doing what he loves and what he does best....entertaining, keynote presentations and playing with people's minds.  Among many projects Michael has on the table, he is also in the middle of writing a book which will focus on how to read a person's mind by reading their body - Pretty cool and useful if you ask me, right? We can't express how grateful we are to the study that Michael was part of and Dr. Lenventhal, as well as Northwestern Memorial Hospital for the excellent care and this pivotal opportunity at a new life.  Was it a rough road?  Yea, it was - very difficult at times but Michael focused on the light at the end of the tunnel...he never let his eyes waiver from that light and he had faith and determination that this study would work for him, he had total trust in it.  I'm always in awe at his tenacity, positive attitude and braveness. He doesn't just "speak" positive messages, he truly lives what he shares on stage and I'm always in amazement at how he pushes through and smiles on. 
 
Michael....back on stage.
"There is a light at the end of this tunnel"


My heart goes out to all PKD patients, your daily health struggles, the fears of what the future might or might not bring, the uncertainty that at times peeks it head around...but at the same time, I am at awe...at awe with the courage you have, the hope you so proudly hold on to, the smiles and laughter that you genuinely give and the strength that resounds in your souls. May God bless you...always, because through you I have been blessed. I love you Michael, you keep me in awe. :)




Published results on study.
http://www.ncbi.nlm.nih.gov/pubmed/23222893

565 days post transplant.  You are not alone in this PKD journey....and neither are we.

God's Blessings....Lilly