A Kidney For Ken

Sunday, May 12, 2013

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

Sunday, April 28, 2013

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

Tuesday, February 26, 2013

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

Thursday, December 6, 2012

The Simple Things Have Never Been Sweeter

Sophie and Pa

Addie and Pa

This past week was filled with the wonderful simple things in life. Ken and I went to our granddaughter's first piano recital. Sitting there and listening to songs played on piano and guitar by "aspiring" musicians we smiled and realized this is what life's about. On Monday, we spent the morning with Addie and Sophie at their school for Grandparents day. Although an ordinary event for us, this time it was extraordinary. Ken played golf and had a score in the 80's. Greg joked that he may want to look into getting another kidney :) Amazing feat for someone who had a kidney transplant 3 months ago. The best things in life are the simple things. We follow routines every day of our lives but when those routines are interrupted or changed, we realized how much we LOVED those simple things. My mom would always say something good comes out of every challenging situation. She was so right. Ken and I both see life in a new, beautiful light. We treasure the simple things. We want to spend time enjoying the simple things. We thank God for giving us these simple things.

This past week Ken reached a milestone - 3 months post transplant surgery. For the past three months, Ken had to record in his black notebook every ounce of fluid he took in and every ounce of fluid he put out. He had to keep track of weight, blood pressure, and temperature every day. It gives me great pleasure to announce that the black notebook has been officially "retired." This was a HUGE step forward! Yesterday Ken went in for his second infusion of medicine to kill the virus in his blood. Last week we waited anxiously for the results of the blood test measuring the level in his blood. It had dropped from 90,000 to 31,000! The doctor said if it goes below 5,000 he won't have to have any more infusions. We will find out those results next week. I humbly ask again for prayers that this medicine continues to work. I thank you again for all your love and support.

I wanted to end today's blog with a Danish proverb that I wanted to share with all of you - "What you are is God's gift to you; what you do with yourself is your gift to God." During this season of Advent, let's give of ourselves to others and in so doing we are giving to God.

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

Tuesday, November 27, 2012

Life is GOOD!!

Thanksgiving at Pa and La La's house

Thanksgiving had a different feel this year. First of all, I finally got to cook our dinner using "normal recipes" and not ones that had to be changed to accommodate Ken's dialysis diet. So the food tasted extra GOOD! We cherished the time we got to spend with our daughter, Stefanie, Danny and our three beautiful granddaughters. It was a simple day, but those simple things felt so GOOD! Time has become very important to Ken and me. We try to enjoy the moments and not worry about the future. We know God has the plan and we ask Him daily for the strength to follow His will.

SLUMBER PARTY!!!!!!

Friday night we had another first - slumber party at Pa and La La's house. It had been months since the last sleepover. It was so hard for Ken and me to look at those little girls' eyes asking when they could sleep here again. When Ken came home from work, he asked Addie and Sophie if they wanted to sleep over. They screamed and jumped for joy and it sounded so GOOD!

Tailgating with Friends

On Saturday Ken played his second round of golf. He enjoyed each and every moment on that golf course and it was so GOOD! Sunday was the best day of all. We finally went to our first Saints' game of this season at the Dome. As we were walking to the Dome from the parking garage, Ken said a month ago he could not walk from his recliner to the kitchen without being short of breath. Now we were walking at a brisk pace and it felt so GOOD! We tailgated with some good friends and enjoyed the company, the beautiful day and the fact that life was starting to feel normal and it was so GOOD! Once inside the Dome our friends were so excited to see Ken back. They were all amazed at how good he looked. We cheered, screamed, jumped up and down and tried to help our Saints get a win but it was not meant to be. Sure we were disappointed but not like we felt before this journey began. Things are different now and Ken and I see life from a new perspective and it feels so GOOD!

Back in the Dome

So as life continues to slowly but surely get back to normal, our post-transplant journey continues. Ken is now getting infusions every two weeks to kill the virus that is active in his blood. He is scheduled to receive three more treatments. The infusion lasts for 4 1/2 hours. He receives saline to hydrate the kidney for 3 1/2 hours and then receives the medicine for 1 hour. So far he has not experienced any side effects from the medicine. They are monitoring his blood weekly, and he may have to have another kidney biopsy in the near future. We again ask you to keep Ken in your thoughts and prayers. Despite this current bump in the road, life is truly getting better and better every day and both Ken and I are feeling very GOOD!

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

Monday, November 19, 2012

A Week of Firsts!!

First Golf Game since 9/8/12

Ken and George

Life was good this week. Ken played his first round of golf in more than 9 weeks on Saturday. He had a GREAT time with his golfing buddies and actually played pretty well. He was so happy to get back on the golf course. It was a huge step for him toward that normal life he is looking to get back to.

On Sunday Ken and I celebrated our 40th wedding anniversary. We had made plans months ago to go to the beach for a long weekend, but we decided to put that off until a later date. Instead we enjoyed a beautiful "Anniversary" weekend - dining at Ruth's Chris and breakfast at Peppermill. We cheered our Saints on to a GREAT victory on Sunday afternoon and talked to our children both in town and out of town. Ken and I both agreed this was the best weekend we have had in months.

Anniversary Dinner

The challenges do continue for Ken. His new kidney is still showing a mild rejection, and he also has a virus in his system. The doctors agree that the treatment plan now is to kill the virus with medicine given through an infusion. He will have his first infusion on Wednesday. This medicine is powerful and we are confident it will finally get rid of the virus. He will need to have the infusion every two weeks until the blood work shows the virus is gone. In the next few weeks, Ken will have another kidney biopsy to check the cells in the kidney and assess his progress.This is normal protocol for a new kidney transplant patient. Since Ken is still on Coumadin for the blood clots, I will have to administer shots in his stomach again until after the biopsy. Then they will start him back on Coumadin and the shots will continue until the lab results show a therapeutic level in his blood again. So we humbly ask you keep Ken in your prayers as he continues on this path to recovery. Pray that the gift of life from Alex, that wonderful kidney, will keep functioning so beautifully. As always, we know we can count on all of your good thoughts and prayers.

So as we approach Thanksgiving, we want to thank God first for all He has done for us. We want to thank our amazing family, Stefanie and Danny, Greg and Camille, Kelly and Alex and our three beautiful granddaughters, Addie, Sophie and Jillie. We want to thank our extended family and friends who have followed this blog and continually give us their support, prayers and love. Life is a journey of faith. Ken and I realize that nothing is guaranteed so enjoy each moment that God gives us. Our prayer as we wake each morning is, " God, whether I get anything else done today, I want to make sure that I spend time loving you and loving other people - because that's what life is all about. I don't want to waste this day." You are all in our prayers today and every day.

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

Thursday, November 8, 2012

Another Successful Kidney Walk!!

Ken With A Kidney!

Ken and Terry

Sunday was a GREAT day for the Roig Family. We took part in the 2012 Kidney Walk. The Renal Roigs raised over $1,000 for the Kidney Foundation. Our team was made up of family - our daughters, Stefanie and Kelly and their husbands Danny and Alex. Our son, Greg, and his wife Camille were there with Jim and Mary, Camille's parents from California and Camille's Aunt Meg. Ken's sister Sheila and brother David with his wife Tammy and children Gabby and Joel participated. My cousin Frank and his wife Barbara and my cousins Becky, Sue, and her husband Jerry came. Our good friends Roberta, Ken and Darren Chevis joined us. Ken's cousin Rhonda and her husband Terry walked too. Kelly got a wonderful surprise when her friends showed up to walk with our team - Holly, James, Poppy, Ashley Z, Paige, Becky, and Ashleigh P. Greg's friends Tim and Lauren joined us as well as our new friends Colleen and John. We want to thank everyone who walked with us in person or in spirit and for their prayers and well wishes. It was a celebration of the gift that Alex, our son-in-law, gave to Ken. It was a time to focus on encouraging others to consider the gift of life - becoming a donor. We hope more people will walk with us next year. As you can see by the pictures, fun was had by all. Sally Ann Roberts from WWL-TV came out to the Kidney Walk to do a follow-up on the story she did in August on Alex and Ken. On the morning show this week, Sally Ann talked about Ken and Alex two months after the transplant surgery. She said our family is dedicated to "paying it forward" by encouraging organ donations and bringing attention to other causes in our community. We have been blessed in many ways by this blog and we hope to share our blessings with others. Thank you Sally Ann for all you do for this community and for making all of us aware of the need for bone marrow donors as well as organ donors. May this blog encourage others to find out more about becoming a living donor!

This week Ken and I went to his clinic visit to get the results of his kidney biopsy. The doctor said the kidney is showing a mild acute rejection. This apparently is very common and many transplant patients experience this a few times in the 3 to 6 months after the transplant surgery. They will start treatment immediately which will be IV infusions of steroids for 3 days and then oral steroids for awhile. The infusion should last about 45 minutes. Good news it can be done as an outpatient procedure. They will monitor his blood levels daily. He will also have another Echogram since he still gets short of breath occasionally. One positive bit of news from our visit is that Ken was told by the doctor that he could start playing golf again soon. YAY!!!!!!!

So life goes on and we enjoy the blessings we receive each and every day. Some days the journey takes strange turns but God is our guide and He knows the way. We trust in Him and know that He loves us so much and knows what is best for us. We ask as always that you keep those AWESOME prayers coming our way. You are our "Prayer Warriors!"

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