Living The Gift One Day At A Time

Central Park

Since the first anniversary of Ken's kidney transplant on September 10, we have been very busy.  Ken is feeling good and enjoying the "normal" routines of life again.   He still has to get his blood work tested every two weeks.  Waiting for results on those Tuesdays is still difficult but Ken's levels in his kidney seem to be getting better.  As one doctor told us the levels can fluctuate like blood pressure during the course of the day.  His kidney functioning is better but there is still a problem with protein spillage.  Ken and I have adopted the philosophy "to live each day that God blesses us with."

Before Ken's kidney started failing, he and our son Greg would choose an out of town destination to attend a Saints' game.  This year they decided to start the tradition again and picked New York for the Jets game.  Ken had never been to New York and I had been when I was 15 years old.  Greg and his wife Camille were the planners and tour guides.  We saw a Broadway show and a comedy club show, walked in Central Park, rode the subway three times, walked through Little Italy, China Town, and Greenwich Village. We went to the Empire State Building, Wall Street, Times Square and the 9/11 Memorial.  One day Ken and I walked 6.5 miles around the streets of New York.  He was doing things he could never have done last year.  We are living "the gifts that God blesses us with each day."

Addie, Sophie, Jillie

Our grandchildren fill our lives with joy each and every day.  We missed so many important events in their lives last year but this year is totally different.  We have already attended their plays at school and will be going to Grandparents' Day soon.  We can have our "slumber parties" again - even though there is not much slumbering on those nights :)  And the best of all is the time together playing games, singing silly songs, dance parties (now that is a sight to behold), reading stories, making up stories and snuggling close watching movies. You don't realize how much you miss these everyday happenings until they are taken away.  We are enjoying "the gifts that God blesses us with each day."

Pa and Gus

Kelly, Alex and Gus, our grandson, all live out of town.  Ken and I could not travel at all last year.  It was so hard not seeing them more often.  Now Ken is able to travel so we can visit and they can come visit us too.  Ken "Pa" is the "baby whisperer."  When our children were babies, he would sway and bounce simultaneously.  This magical move would calm them down and put them to sleep.  He still has that gift and now has the chance to use it on Gus.  We are enjoying "the gifts that God blesses us with each day."

Linda and Frank

A few weeks ago we got together with our "old" friends.  I met these three "girls" in Kindergarten and we have been friends since and have been through so much together over the years.  We don't get to see each other very often but when it happens it is like we were never apart.  Our husbands have all been through some difficult times with physical ailments.  I think of them as the "four miracles."  I think of Denise, Charlotte, and Linda as the sisters I never had.  We had such a good time and they are "our gifts that God blesses us with each day."                                                     

Rick and Charlotte

Denise and Tom

In two weeks Ken and I will be walking in our 3rd Kidney Walk.  It is on Sunday, November 24th at Audubon Park, Shelter #10.  The walk begins at 9:30 but check in starts at 8:00.  We would love you to come walk with us.  We will be in gray shirts this year with A Kidney For Ken on the front and Living The Gift One Day At A Time on the back. We are walking to encourage others to become  organ donors and to honor organ donors like our son-in-law,  Alex.  You can make a donation or join  our team, Renal Roigs, by clicking on  www.kidneywalk.org  Choose the state first.  Click on the Walk on November 24 next.  You can join our team and or make a donation by selecting the buttons at the top of the page and following the directions.

We thank all of you for the prayers, love and support you have given us.  We ask you to continue to pray for Ken and other transplant recipients.  Pray that more people will make the choice to become a donor and save a life.

Until next time may the Lord carry us on our journey,
Pat

Celebration of the Gift That Keeps Giving

Celebrating my Wife's Birthday

Hi All,

As I approach my 1^st year anniversary (Sept 10^th) of my kidney transplant, I wanted to share some of my thoughts on this amazing and sometimes challenging experience.

First of all, I wanted to thank everyone for their prayers and taking interest in reading my blog, “a kidney for ken”.  My son and daughter-in-law started this blog over a year ago to document my journey before and after my kidney transplant. My loving wife and my “rock of support” during these last 2+ years epitomizes what true love is all about. My children and grandchildren have always been there to raise my spirits during the frustrating times and share in the happy times. I love you all so much.

I would like to share some of my experiences this past year since this blog was created primarily as a source of information for other people who may have kidney disease problems and may be on kidney dialysis or waiting to receive a transplanted kidney. When I first went on peritoneal dialysis (home dialysis) in April 2011, I thought will I be able to endure this process every day for the next 5 years until I would hopefully get a kidney transplant?  It was a tough thing to “wrap my head around”, but I knew it was the only way to make sure my body wouldn’t shut down because I valued life too much. Like everything in life, you do your best to accept those life changing events and put it in God’s hands. Fortunately, that 5 year waiting period turned into 15 months because my son-in-law made the ultimate sacrifice and donated one of his kidneys to me. I remembered how touched and grateful I was for this selfless act of love and with much anticipation awaited the scheduled surgery that would restore my quality of life.

 Overall, the surgery went well. My son-in-law and I were released within 2 days after the surgery and although sore and walking very gingerly we were both on our way to total recovery. My son-in-law returned to Greenville, South Carolina less than a week after the surgery and I was enjoying my transplanted kidney. Unfortunately, within 2 weeks after the surgery I was back in the hospital with a major blood clot in my right leg and in my right lung. How fortunate I was that the clot didn’t invade the new transplanted kidney also on my right side or even caused death. I truly believe that it was another example of divine intervention taking place again. As I look back, that was probably the most painful time over this last year. It is believed that the blood clot was a result of the proteinuria (protein spillage) caused from my kidney disease….membranous nephritis. I recovered from the blood clot, but was being monitored closely to prevent any further occurrences of blood clots. As most of you who read this blog know I experienced various setbacks such as: pericarditis, elevated BK virus, elevated creatinine levels and increased protein levels. Based on the last of 4 biopsies on the transplanted kidney, it appears there is some indication that my original disease is present. I’m mentioning these setbacks not to cause concern for anyone who may have a kidney disease or will have a kidney transplant, but as valuable information of what could happen. I have to admit I was a little naive thinking that once I received the new kidney that my life would return to normal. That may or may not happen, but don’t be alarmed if there are setbacks because medications are greatly improved and have been successful in preventing rejection of transplanted kidneys. I’m often asked if I knew in advance about all the setbacks I would experience after having the kidney transplant would I still do it. Well the answer is an emphatic YES because my quality of life is immensely better. In fact, my new philosophy on life is to take one day at a time and make the most of it.

In closing, I would like to share a brief story that somewhat puts everything in perspective. About 4 years ago the pastor of our church, who was battling leukemia gave a sermon. He said this might be the last time he would be able to say mass because he was getting weak and it was a struggle for him to even speak. Anyway, at the end of the speech, he asked the congregation not to feel sorry for him because this was God’s plan. He ended that sermon with these words……”this is the day that the Lord has made, let us be glad and rejoice in it”.

May we all cherish each day and may God bless all of you, 

Ken

Good Genes

Hi everyone,

I decided to give my mom a well-deserved break and write a guest blog entry this week. As we near the one-year anniversary of my dad's kidney transplant surgery 9/10, I wanted to share a few thoughts as I have watched my parent's journey from afar over the last few months:

I recently had my DNA analyzed. I work in the personalized medicine industry and thought it was important to experience firsthand what I believe is the future of medicine, the ultimate game changer in patient care. From a simple saliva sample, I was able to find out who I am or at least what I am made of. I discovered my increased risks for certain diseases, found out what conditions my future children may inherit, and learned how I may respond to certain medications. I am even finding out about my ancestral origins, putting the Roig portuguese claim to the test once and for all. It has certainly been an eye-opening journey, but why am I telling you this on the Kidney for Ken blog? The short answer is because there is more to me than what was discovered in my genes. I believe that "more" comes from a few key mantras that my parents instilled in me. And over the past several months in my dad's journey, at times both turbulent and celebratory, I have watched in awe as my parents have continued to live out those mantras:

1.) It is better to give than to receive

Lucky little boy on the left

I must say this first one sounds ironic considering that my dad received the ultimate gift last September from a man I am so lucky to call my brother-in-law. So let me explain. Considering the many setbacks my dad has experienced in his first year of recovery, it would have been easy for my parents to shut it down and block everyone and everything  else out until he was truly healthy. Everyone would have understood, no questions asked.  But instead I have watched them do the opposite. They give of themselves constantly, whether it be to their children and grandchildren or neighbors and friends. This blog itself is a vehicle my parents want to use to give back and raise awareness of chronic kidney disease and living donor programs. They won't ever stop giving, they won't ever think they give enough, and I can't help but feel pride because of that. 

2.) Find the humor in every situation

I live in California and my least favorite phone call is the one from my mom telling me that my dad is being admitted into the hospital for one thing or another. Unfortunately, I have received quite a few of those calls this year. But just when I start feeling down thinking of my parents sitting in a hospital room on a Saturday waiting for test results or the doctor to stop by, I get a text from my mom saying she has the funniest story to tell me. Typically starting with "you won't believe what your father just did," I listen in amazement as they have managed to find humor in a hospital room on a random Saturday. Laughter is the best medicine, my parents have mastered that one. 

3.) Believe in something greater

As most of you know, a consistent theme of every blog entry from my mom has been one of faith. But I want to examine that on a higher level. This third mantra is not about a specific religion, deity, or set of doctrines. It is simply about believing in something greater than yourself,  understanding there is a master plan for you, and finding solace in that belief when you need it most. Practically every week this year my parents have lived the following scenario: My dad gives blood early in the week and then they anxiously await a phone call with the results later in the week, not knowing if the news on the other line is going to be good, bad, or at times this year bad enough to warrant an immediate hospital admittance. Every single week they live this; and every single week their faith gets them through it. Trust me, it takes work, it doesn't always come easy, but when it does they find an inner peace that truly comforts them and gives them the strength to keep moving forward. Above everything else, I am most grateful for this. 

Thanks for letting me share these thoughts with you. As always, your support and kindness mean everything to our family. My mom has some exciting guest bloggers lined up for the coming weeks so please keep following!

Until the next time,

Greg

Life Back to Normal...Or At Least Trying To Be!

For those of you who have followed the blog the last couple weeks, this is part 3 of our recent journey. Enjoy!

After returning from a wonderful trip in Greenville meeting our grandson Gus, Ken and I were happy to bring some form of normalcy to our lives again.  We started walking together in the early mornings, saying our prayers, and giving thanks for the blessings in our lives.  We were home a few days when the doctors decided to setup another infusion of that "powerful medicine" one more time for Ken.  We were not happy but hoped this time the positive results would be longer lasting.

For those of you who know Ken, he is very conscientious and meticulous in his daily routines.  The medicine regime he is on is mind boggling.  He keeps all of this organized and can rattle off names of medicines, strength, and dosages.  The doctors add and stop medicines quite often.  This impresses me all the time because at certain points during this transplant journey he was taking around 14 pills in the morning and 14 in the evening.  The doctors change the dosage of Ken's Coumadin (blood thinning) medicine fairly often to keep him within theraputic levels to prevent blood clots from forming.  One morning we were walking at our fast pace and Ken stopped suddenly.  Of course I asked right away if he was feeling alright.  He told me he did not remember taking his Coumadin the night before.  I immediately told him he had to be mistaken because he was so good about taking his meds.  When he came inside he checked his pill box and found out he had not put the Coumadin pills in for the week.  He missed his Coumadin for the past four nights.  A sense of panic hit us both.  We were so upset and very concerned.  After his experience with blood clots in his leg and lungs, we did not want that to happen again.  Ken contacted the pharmacist in the kidney transplant clinic.  This happened on Thursday so the doctor increased his Coumadin dose for the next five days until his scheduled bloodwork on the following Tuesday.  He said four days without the medicine should not cause any problems.  We both were so relieved.  Saturday morning arrived and we were going on our walk.  He told me he did not feel too good so he was going to skip it.  I went and when I got back he was sitting in the tv room.  I could tell by the look on his face something was wrong.  He had a pain in his thigh and he was afraid it was another blood clot.  Off to the emergency room we went and after blood work and another ultrasound of his leg and kidney a blood clot was found.  Thankfully it was superficial but his INR (therapeutic level of Coumadin in his blood ) was too low so they admitted him. Ken only had to stay one night and was discharged on Sunday with injections to be given at home.

Gus is one happy baby!

The next infusion was scheduled on Tuesday and Ken was concerned about it.  He wondered if he should reschedule it but the doctors assured him it would be fine.  Since the medicine is a chemo drug we went to the infusion center at Ochsner.  It was scary having this medicine put in him again.  He was very nervous too.  We were surrounded by amazing patients who were getting infusions on a weekly basis to fight so many different cancers.  This was one of those moments when we started thinking about those patients and forgot about what was happening to Ken.  God works in such amazing ways. A peaceful feeling came over us.  The infusion went fine and we went home.  Ken went to work the next day and life began to get back to normal. We enjoyed time with our granddaughters - slumber parties, playing school and playing piano.  We cherished getting daily pictures and videos from Kelly, Alex and Gus.  This is what life is all about!!!!!

Piano recital at LaLa and Pa's house

We are now back to our weekly routine of blood work every other Tuesday.  Then we wait for the "dreaded" call with results never knowing what to expect.  Ken just got his latest results back this past week and his levels are headed in the right direction, which is great news.  He feels fine but he knows things can change in an instant.  We both read "Jesus Calling" each day.  Today's words seem so appropriate for us and I bet for so many of you reading this blog too. Jesus says, "I will guide you carefully along today's journey.  Don't worry about what is around the next bend.  Just concentrate on enjoying My Presence and staying in step with Me."  Ken and I continue to pray for all of you. We thank you so much for all your prayers for him!

Until the next time may the Lord carry us on our journey,
Pat

Beautiful rainbow (taken by Stef)  God is good!

Girls playing "school" at LaLa and Pa's slumber party

               
                                         

The Miracle - A New Life

For those of you who read last week's blog, this is part 2 of our recent journey. Enjoy!

LaLa and Gus

Friday morning, June 7th: Kelly called to let us know that Gus was taken to the NICU for low blood sugars.  It was difficult for them to see him in the NICU but they were able to go in at every feeding and stay with him.  Meanwhile Ken's infusion was started at 4:00p.m. in the hospital that same day and they told us we could home afterwards.  We were nervous about the side effects of the drug but were ecstatic we would be able to go home after 11 days in the hospital.  The nurse monitored Ken's blood pressure and temperature every 15 minutes and  increased the infusion rate every 30 minutes.  It was a long process but thankfully he did not have any adverse reactions at that time.  The infusion was not finished until 1:00am.  The nurse really did not want to discharge us but the doctor had signed the papers and we were ready to go.  At 1:30a.m. Ken and I were walking through the hospital lobby heading to the parking lot.  There was not a person in sight.  We did not care we were going home!!! I spent the day Saturday watching and asking Ken constantly, "How are you feeling?"  He kept saying he was fine.  I was so excited about leaving Sunday morning to go help Kelly and meet my grandson, Gus.  But I was so worried about leaving Ken after that powerful infusion.  I kept praying and asking God to protect him.  Of course our oldest daughter, Stefanie and our three granddaughters were so excited about "taking care" of Pa.  I left very early Sunday morning.  It was one of the hardest goodbyes for me and Ken.  We had never been away from each other for this long but I knew I needed to be with Kelly, Alex and Gus. My two weeks with Kelly, Alex and Gus were the best medicine for me.  I talked to Ken every night and got "updates" from Stefanie on Ken.  Ken had a follow-up appointment with the transplant doctors and they were happy with his levels.  He had a few minor side effects from the infusion but was able to work through them. I missed him but I was enjoying "Gus watching" with Kelly and Alex.  The whole visit put life's joys and sorrows into perspective.  I was taken away from the daily worries of tests, medicines, side effects, etc. and put into "Gus' world."  If you asked Kelly and Alex they would probably say I was a big help for them with night time feedings, cooking and cleaning.  But in actuality they helped me so much. They showed me the immense joy that new life brings to a family.  They gave me renewed energy to face the challenges that we all face in our lifetimes.

Pa and Gus

That smile never left his face!

Finally the day arrived that we were all waiting for - Pa meeting Gus for the first time.  After many delays in the airports, Pa arrived 5 hours later than anticipated.  Alex, Kelly, Gus and I parked and surprised him at the gate.  He could not get Gus into arms soon enough.  He was smiling from ear to ear. The pictures speak better than any words I could write.  This was one of those life moments that you will never forget.  The births of our children and grandchildren are what make our lives meaningful.  The next 7 days were filled with early morning rituals of Pa singing, whistling and rocking Gus with "his famous" bounce.  Kelly, Ken and I took Gus for walks in the park.  We enjoyed the time together making plans for other visits to Greenville.  The goodbye was hard but it was time for Kelly, Alex and Gus to have their family bonding time and it was time for Ken and me to get back to New Orleans.

I am reading Rediscover Catholicism by Matthew Kelly.  He talks about living authentic lives - "those leading authentic lives are not looking over some hill or around the next corner to some elusive future happiness. They simply try to be all they can be, here and now, and that brings with it a happiness all its own."   Ken and I wish for all of you the here and now moments.  Enjoy those moments!

Until the next time may the Lord carry us on our journey,

Pat

Proud Parents

And So The Journey Now Continues.......

As I reflect on the events of the past two months, I realize so much has happened since my last post right after Mother's Day.  I started writing the blog many times since May but never completed any.  I would try again and again but the words were not right and I realized I needed to step back and reevaluate the situation.  So with that said, here is part one of our journey since May...

Ken in the hospital with his "joys"

Girls enjoying the beach

Ken was having blood tests done on Tuesday every other week now.  Since he was feeling good and his levels were about the same our life started to resume a sense of normalcy.  It was GOOD! We planned a trip to the beach in Florida - one of our favorite vacation spots with Stefanie, Danny, Addie, Sophie and Jillie.  We had not been to the beach since the summer of 2008.  The Tuesday after Memorial day everything changed in a hurry.  I got a phone call at home telling me that Ken had to come to the hospital immediately.  Needless to say I was very concerned.  Ken told the doctors he was going on vacation on Friday but they still insisted he had to come in.  So we packed for the fifth time since his kidney transplant praying that this would be a short stay.  And again it was hurry hurry hurry.......and then we waited, waited, and waited.  He got in his room rather quickly in "hospital time" but nothing was done.  The doctors had said because of his blood tests it looked like the kidney was in distress so they needed to perform another biopsy.  This would be biopsy number 4.  Easy procedure for the normal patient but Ken was on blood thinning medicine.  They would have to take him off that while giving him heparin.  Nothing happened on Tuesday or Wednesday.  Remember  "Come to the hospital immediately"  on Tuesday - and here it was Thursday and they decided to give him frozen plasma which would make his blood clot temporarily and do the biopsy in the afternoon.  We prayed that this would give him an answer and things would be good again.  There were no results on Friday and the reality hit us that this would not be the summer for our beach vacation.  We had already paid for the condo so we sent Stefanie and her family off to the beach.  We enjoyed our beach vacation through the pictures they sent us.  It was so hard missing the time with our granddaughters but we promised ourselves next summer we would try again.  Now the waiting game began.  No results on Friday, Saturday or Sunday.  We learned it was not a rejection or the BK virus but they were running more tests on it.  The sample had been sent out of town for testing.  Finally the doctors came to tell us on Wednesday it was the original disease that attacked his own kidneys but they only found some traces of it.  Needless to say this was a shock and not the news we were hoping for.  The treatment plan was an infusion of a powerful chemo drug to put the disease into remission.  The infusion would take about 8 hours to administer but then we would go home.  We called our children to let them know the treatment plan.  They were concerned but we reassured them all.

Gus and his proud mama

Meanwhile Kelly, entering her last month of pregnancy,  had been to the doctor for her checkup that Wednesday morning and everything was fine.  Her due date was still July 4th.  Later Wednesday night we got a call from Kelly.  Her water broke and she was heading to the hospital.  We all figured she would be put on bed rest and sent home.  But an hour later I got a phone call from Kelly telling me she was going to labor and delivery.  She was scared and we were suppose to be there with her.  We had rehearsed weeks before how we would get online immediately and get tickets on the first plane out to South Carolina.  Hopefully we would be there in time for the delivery but if not we would be there shortly afterwards.  Through tears I had to tell her I could not leave Ken because he was having his infusion the next day and I had to be with him.  It was heartbreaking.  I was so torn but I knew she was with Alex and his parents.  She was going to be fine.  Throughout that long night she and I talked and I tried to calm her down.  It was killing me not being there with her.  I actually booked my flight that night in the hospital.  I think it helped her knowing I would be there on Sunday.  Thursday morning finally arrived and still no baby.  Ken's infusion was going to start in the afternoon.  We were on baby watch.  We stopped thinking about the infusion or the side effects of the medicine.  The only thing that we cared about was Kelly and the baby.  Around 2:45pm Augustus Alexander Mclean V was born.  He was fine and mommy was too.  We got pictures instantly and knew all was well.  "Gus" changed everything for us that afternoon.  Our fears and concerns were gone. We were no longer worried about Ken.  We were given the best news with the birth of a healthy baby boy. And so the story will continue next week....

I wanted to end with a quote from this book I am reading  - Rediscover Catholicism by Matthew Kelly.  Ken and I are slowly learning these things but I love the way he puts it.."Stop trying to put together a master plan for your life and for your happiness. Instead, seek out the Master's plan for your life and for your happiness." We can do this through prayer.

Thank you for continuing your prayers for Ken and we continue our prayers for all of you.

Until the next time may the Lord carry us on our journey,
Pat

A Mother's Day Reflection

Happy Mother's Day! I hope everyone enjoyed the day and had the chance to celebrate all of the wonderful mothers and grandmothers out there. Today I couldn't stop myself from thinking about last Mother's Day. We had just launched the blog in April with the goal of making people more aware of the need for organ donors.  I also hoped that by sharing Ken's story someone out there might decide to become a donor. It was also about a year ago when Greg and Camille traveled to Vancouver, Canada to run a marathon in Ken's honor.  They wore shirts that read "A Kidney for Ken" and hoped to inspire someone to become a living donor. And a few months later our hero, Alex, gave Ken the gift of life. What a journey it has been and it continues...

Ken, Alex, Pat, and Kelly

Last weekend was a dream come true for Ken and me. We traveled for the first time since September 2011! We traveled to Greenville to visit our daughter, Kelly and son-in-law, Alex for the first time in over three years.  We were like "kids in a candy store" planning, packing and finally boarding the plane in New Orleans.  We had a weekend filled with activities - golfing with Alex and his father, enjoying a wonderful baby shower for Kelly and Baby Gus, helping Kelly and Alex pack for their move, and eating great food with good people, the McLeans.  We cherished each moment of each day.  The weekend flew by and the goodbyes were so hard but this time it was different.  We will be back to Greenville very soon!! 

Baby Shower

The latest health update on Ken was given to us driving from the Charlotte airport to Greenville on that Friday.  We were so excited about seeing Kelly and Alex and then the"dreaded" phone call came in.  Although Ken's proteinuria and BK virus levels had increased slightly, the doctors were not concerned and will not be taking additional action at this point.  YAY!!!!!!! That call put our minds at ease, and we could truly enjoy this very special weekend.

Greg and Cam Pre-Race

On the west coast that same weekend, Greg and his wife, Camille ran a marathon in Orange County wearing those same "A Kidney for Ken" t-shirts.  This time they ran in honor of Ken, Alex. and all living donors.  They are still spreading the word about the gift of life, organ donations.  Ken and I have been waiting for the time we could give back.  We hope to take part in some walks in the near future, and share the details with all of you. 

Lastly, I am reading another great book - Having a Mary Heart in a Martha World.  The author talks about God's grammar lessons.  As a teacher I loved this analogy:  "His periods may not be our periods. His commas may not be our commas.  His ways may not be our ways. But God is the One telling the story, and we can trust Him to take the tale in the right direction. We can have faith that everything really will turn out right." Those are such comforting words to live by and so I wanted to share them with you. 

Celebrating Mother's Day
(Stef, Sophie, Jillie, and Addie)

When I got home from Greenville I wrote a few things in my gratitude journal - traveling again, hugging and not wanting to let go, feeling Baby Gus kicking and hiccuping,  laughing and crying watching movies together, and saying goodbye knowing we will be back soon!

May God protect all of you and your families.  We continue to pray for all of you and thank you for your prayers for Ken!

Until the next time may the Lord carry us on our journey,
Pat