Tuesday, January 28, 2014

Happy Birthday??

January 24th was Ken's birthday.  Since we were doing some remodeling at our house, our daughter Stefanie invited us over to celebrate at her home.  Our granddaughters were so excited and started making decorations and cards for the celebration.  Tuesday, the 21st Ken had his fifth kidney biopsy after results from his latest bimonthly blood work indicated problems.  Ken was told the results would be back late Thursday or early Friday morning.  Thursday, the 23th I bought the devil food cake mix, vanilla icing and blue Bell ice cream for the party.  Around noon I got a call from Ken and I knew from his voice something was wrong.  The doctors wanted him to go to the hospital immediately.  They found a mild rejection of the kidney and fibrosis.  He was admitted quickly and as we walked through the doors of the kidney transplant unit the nurses, CNA's, social workers, pharmacists, food service  and cleaning ladies all welcomed Ken and me.  I know I have used this analogy in the past but remember the television show Cheers.  When Ken and I stepped through those doors we knew we were back.......

"Where everybody knows your name
  And they're always glad you came
  You wanna be where you can see
  Our troubles are all the same
  You wanna be where
  Everybody knows your name."

As hard as it is to go back to the hospital this floor truly is our home. And we were back. Ken was given three large doses of steroids for the mild rejection. His original disease was back and was given a chemo drug to put it in remission. Obviously all these medicines have side effects but we again put this all into God's Hands. We pray for good results and for no side effects. We trust in God and know this is His plan.

Best birthday party ever!

So the birthday party came to the transplant floor Friday night.  Addie, Sophie and Stefanie brought TCBY sugar free yogurt and sang Happy Birthday. They made BEAUTIFUL cards for their Pa. We played charades, visited the salt water Aquarium and did some shopping at the vending machine. They counted the bags Pa had hanging from his IV pole and met some of the wonderful nurses. It was a GREAT birthday!  We realized it is not where the party takes place but it is who comes to the party. As my mom used to say, "It's not the food but it's the company!"


Our son Greg, the real writer in this family, read a poem he wrote for Ken over the phone Friday night.  It was so funny that we literally cried. He took all the crazy things happening in our lives and made us laugh and realize what really is important. We ended the day face timing with Kelly, Alex and Gus, our grandson in South Carolina.  Life is great with a family like this, even from a hospital room.


Ken and I have been bombarded with prayers, well wishes, support and love from so many family and friends. We hope you realize what an amazing feeling it is for us knowing so many of you are praying for Ken. You all are in our prayers each and every day. We all have crosses to bear in this lifetime. You never know what journey someone may be on. We wish for all of you that your journeys will be safe, your crosses light to bear, your families and friends surround you with love and you enjoy each and every day God gives you with the ones you love.  I want to share 
these beautiful words sent to me from my cousin Emily - "I pray for you two to have comfort and encouragement in this hospital stay, that it be short, filled with peace and healing of miraculous magnitude, and that you remember, at all times, how much you are loved and prayed for by all of us at home." Thank you Emily, we do feel all that love.

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

Pat

Tuesday, December 31, 2013

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

Wednesday, November 27, 2013

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


Tuesday, November 12, 2013

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

Tuesday, September 10, 2013

Celebration of the Gift That Keeps Giving

Celebrating my Wife's Birthday

Hi All,
As I approach my 1st year anniversary (Sept 10th) 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

Monday, August 19, 2013

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

Sunday, August 4, 2013

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