Happy New Year!!!!

Happy New Year from our family to yours!

As we enter into 2014, Ken and I would like to wish all of you a very Happy New Year!!!  God has been very good to us this year.  Ken has not been back in the hospital since June 2013.  He still has challenges but with the continued prayers and support of you, our friends and family,  we know this year will be a GREAT one too!  We want to thank God for our beautiful family - Stefanie, Greg, Kelly, Danny, Camille, Alex, Addie, Sophie, Jillie, and Gus.  We could not make it through each day without your constant love.  You bring so much joy to our lives and we cherish all the time we spend with you.  We want to thank God for all our extended families - The Roigs and The Vaths.  You always have encouraging words for us and show us what great faith both of these "amazing families" have.  We want to thank God for our friends.  You are always there for us listening when we need to vent and giving us good advice.  Your friendships are our treasured gifts.  We thank God for the good doctors and nurses who have taken care of Ken throughout this journey.  Ken and I both thank Alex each and every day for the gift of life he gave to Ken. It was truly the best gift!  And I thank God for the man I married 41 years ago.  He was my hero then and is still my hero now.  He has been through so much but he keeps going with a smile on his face.

I would like to share with you "An Irish Blessing" which hangs in my house now.  It was in my mom and dad's house.  It means so much to our whole family and I hope it brings you peace and happiness in this new year.

"May the road rise to meet you, May the wind be always at your back,  May the sun shine warm upon your face, the rains fall soft upon your fields and, until we meet again, may God hold you in the palm of His Hand."

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

Happy Thanksgiving!!

Kidney Walk 2013

Addie and Sophie

This past Sunday Ken and I participated in our third annual Kidney Walk.  We were joined by our daughter Stefanie with her husband Danny and our three beautiful granddaughters, Addie, Sophie and Jillie. Ken's sister, Sheila, his brother, David, and his wife Tammy and their two children, Gabby and Joel came out again this year to walk with us.  It was a cold windy day but the spirit of the event warmed us all.  Ken and I reflected back on the walk last year - two months post Kidney transplant.  WOW! What a difference a year has made.  It was heartwarming to see the nurses that took care of Ken when he was on dialysis for 15 months, Blanca and Heather with their families.  It was great seeing Erin, one of our angels on the kidney transplant floor at Ochsner who took such great care of Ken during the many hospital visits after his transplant. As we walked through beautiful Audubon Park watching the many families and friends participating in the event we were reminded again of the dire need for organ donors.  We thank God each and every day for the gift that Alex gave to Ken and we hope that others will consider becoming a donor.  Ken and I feel like this is the mission God has given us.

Ken and I want to wish all of you a Happy and Healthy Thanksgiving!  Each and every day we thank God for all of you. We thank you for your prayers, love and support. I wanted to share with you words from "Jesus Calling" - "As you go through this day, look for tiny treasures strategically placed along the way.  I lovingly go before you and plant little pleasures to brighten your day.  Look carefully for them and pluck them one by one.  When you reach the end of the day, you will have gathered a lovely bouquet. Offer it up to Me with a grateful heart.  Receive My Peace as you lie down to sleep, with thankful thoughts playing a lullaby in your mind."

Our Whole Kidney Walk team 2013

May each and everyone of you hear that lullaby in your mind!

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

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

Live in Faith not by Sight

Hi everyone, 

I hope you and your families have been well. After a short hiatus from the blog, I am excited to get back to writing regular blog entries and connecting with all of you.

Before I provide the latest on Ken, I wanted to address the recent acts of violence in our country, My thoughts and prayers have been and continue to be with all the people in Boston and West Texas. As I tried to make sense of it all, I looked at those first responders and the many ordinary citizens who risked their own safety to help others.  I watched those good people, those angels, trying to protect and save innocent lives.  In those moments I saw goodness, love, and the hand of God. I recently finished a book, One Thousand Gifts, by Ann Voskamp.  It was an amazing book.  She tried to look at life, the joys and sorrows, in a different way.  She started a journal - her gratitude journal.  She decided each day she would write down a word or phrase that showed God at work in her life.  She is still adding to her journal that now has thousands of entries.  Throughout Ken's journey, we have certainly had our ups and downs, our good times and bad. But even in the bad times, I am looking harder now than ever before for all of God's work in our lives and remembering to be thankful for all of our blessings.

These last few months have led me to revise the expression "the good, the bad, and the ugly" to "the good, the not so good, and the unknown" to best describe the condition of Ken now almost 8 months post surgery. 

• The GOOD: Ken has felt really good these last nine weeks.  I told him this is the best I remember him looking and feeling in the past 5 years.  Life has taken on a "normal" feel for us. It is amazing how much more we are able to take on and accept when Ken truly feels well. It makes this journey so worth it. 
• The NOT SO GOOD: Ken is continuing to have lab work done every week due to the health challenges he has encountered post-op.  Our weekly routine is lab work every Tuesday morning, waiting for some results on Tuesday afternoon, and the rest on Thursday afternoon.  Unfortunately, those phone calls dominate our lives.  Tom Petty said it best, "The waiting game is the hardest part." Good news makes us ecstatic, disappointing news makes us worry. And then we do it all over again the next week. We continually have to remind ourselves that we truly live in faith and not by sight.
• The UNKNOWN: Some of Ken's blood results have created more questions than answers. Specifically, the protein levels in his urine are elevated which can endanger the kidney if not treated effectively. Unfortunately,the doctors do not have an answer for why this is happening and so Ken is having to try out different medications to get the levels under control. I ask that all of you keep us in your thoughts and prayers as we continue to search for an answer.

As we take each day, one by one, and try to stay focused on the things that matter we are living for the beautiful moments.  We will be traveling again for the first time in over 2 1/2 years.  We have been enjoying our children and grandchildren.  We will be heading to the beach this summer. We will be welcoming our grandson into this world. All beautiful moments that we are so thankful for. I have much to add to my gratitude journal. As always, thank you for your support and love!

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

 

From A Hospital To Commander's Palace...

First, let me wish you all a belated but Happy New Year. I hope everyone had a wonderful holidays with family and are off to a great start this year. I know it has been quite some time since my last post. And so as I sat in the hospital over the last week with Ken, I decided it was time to bring all of you up to speed on the past couple months and tell you the latest story of our continuing journey: 

This story begins over the holidays when Ken started having problems with his foot, horrible pain that had him hobbling around. It lasted a few weeks, but finally it got better. Remember with Ken's suppressed immune system a simple cold can turn into pneumonia so every pain, cut, cough, and cold has to be taken care of immediately.  As the new year started, Ken just did not feel well. He was still fighting a lingering cough, headaches and high blood pressure. One morning he woke up complaining of chest and neck pain. I was ready to head to the ER, but Ken was told to go get blood work done and a chest x-ray.  Do you know when you get that feeling that something is wrong? Well I got it as we were waiting to be called in for the x-ray. Later that afternoon the doctor called and told us to head to the ER.  The X-ray was normal. It was not his lungs  but maybe his heart. They took an EKG and the cardiologist came in and before I knew it they were running with him down the hall. By the time they got in the room, three doctors and 4 nurses were working on him. It felt like an episode of the television show ER. The cardiologist started asking him questions and getting him to sit up and breath in and then bend over and breath in. Ken had no pain when he was bending forward. The doctor told the nurses to stop. He was not having a heart attack but had pericarditis - an inflammation of the lining of the heart. He was in the hospital for 5 days. They gave him powerful antibiotics intravenously. Ran all sorts of tests, one of which found a spot on his lung which was a big worry and concern for us. After 5 days, they sent Ken home on an oral antibiotic that had significant side effects. Well, if it was a side effect, Ken seemed to experience it. He had phlebitis in one arm from the IV. Then he started getting a painful swelling in his other arm and on the bridge of his nose and on the back of his heel. The doctors finally took him off of the antibiotic, but the damage had already been done.  He was followed up then by a pulmonary doctor who decided the spot on his lung was from the blood clots he had in his lungs back in October shortly after the surgery. He put him through a series of breathing tests and he passed with flying colors. But he still did not feel good. His blood work started showing that something was going on with the new kidney. 

On Friday February 15, Ken was admitted to the hospital again, put back on the transplant floor getting medicine intravenously to drop the level of Coumadin low enough to safely have another kidney biopsy on that Monday, the 18th. The doctors assured us that whatever the diagnosis there was medicine to treat the problem.  This is where the emotional roller coaster started again.  The consensus among the staff was that the original kidney disease that caused his kidneys to fail in the first place was back in the new kidney.  It was so scary thinking about that.  We prayed so hard this would not be the case. The doctors reassured us that there was medicine to treat it; however, medicine that had serious side effects.  The second possibility was the virus he has been battling since shortly after the transplant - known as the BK virus - was in the new kidney.  Again there was medicine to treat that which also had serious side effects.  Then there was a third possibility - the kidney was rejecting.  There are two types of rejections - acute and chronic.  Obviously the acute is easier to treat and can be stopped whereas the chronic can be treated but the results are not as good.  That weekend before the biopsy was one filled with worry, fear, and uncertainty. So we did what we knew best, what has comforted us the most in our lives, prayed and put our fears into God's hands. Ken and I received information from our friend Charlotte about people from Blessed Father Seelos shrine that come to the hospital and pray with the patients.  We immediately called and a gentleman came.  He prayed with us and talked to us.  Ken held the cross on his kidney and prayed.  It was so comforting and emotional for both of us.  The next morning the biopsy was done.  The results would not be available for 36 hours.  The waiting was hard and the doctors still felt like it was the original kidney disease attacking his new kidney.  Finally the morning came and the doctor told us it was not the original kidney disease.  I was ready to dance and shout but that didn't last long because the next words were we still don't know what it is so they are testing more.  We waited again praying that God would continue to hold our hands on this journey.  Results came in - no BK virus was found.  Now I really wanted to dance, but they still didn't have an answer. So another test would be performed.  Finally on Friday, the doctors told us that the kidney was experiencing a mild acute rejection.  It would be treated with infusions of steroids combined with a change in his medicine regimen. A sigh of relief, a look to the heavens, and a prayer of thankfulness and praise to God!!!!!

Ken, Pat, Kelly, and our amazing donor Alex

So we are finally home after 8 days in the hospital.  Ken will have another biopsy in 2 weeks to make sure the kidney is not rejecting and the medicines are working.  He will continue to have challenges with the effects of the infusions, but we are determined to enjoy each and every moment. We are looking forward to spending more time with family and friends. Just one day out of the hospital, and Ken and I were eating Sunday brunch at Commander's Palace with Kelly and Alex (see picture above). We have learned that the bumps in the road continue but with God holding our hands we are safe. We also know that we are surrounded by an army of amazing friends and family who keep praying for us and following this blog. Your support and love continues to carry us through every obstacle and challenge on this road to recovery. 

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