Transplant time...

My emotions were going up and down like a rollercoaster while they wheeled me back for surgery. They put me in the hallway on a bed to wait for a bit. I just laid there staring at the ceiling while thoughts were racing in my brain. Was that the last time I was going to see my family? Was I ever going to get to see my grandkids grow up? Ever hug Marv again?  It was such a strange feeling. All of a sudden, the doctor came up to me holding a little red and white cooler like you would pack a lunch in. “Here’s your kidney”, he said. I remember thinking, please have the right one. Please have the right one. And they wheeled me in to the operating room where they put me in lala land. As I was waking up, I heard the nurse saying , “You really snore loud!”  And I said to her, “ Does that get me a private room?”  This was truly on my mind. Private rooms were not plentiful for those receiving kidneys. They took me to a special transplant department, but I was worried about not being in a room alone. Mostly because I wanted family to stay with me the first few nights. I felt it was important to have an advocate there in case I couldn’t get help in the middle of the night when I needed it. Which does happen. So, my daughters, sister and Marv took turns staying with me. However, it turned out these nurses were very good and I became very close to three of them. God was truly walking with me. The doctor told Marv that before he was even completely done with the surgery, the new kidney started working. Physically, I was up and walking the next day. Not a lot and not fast. But I was walking. I knew in my heart if I wanted to go home sooner, rather than later, I had to put forth the effort. So I started walking a little more each day. The number one scariest part for me was when they had to take the IV out of my neck. I had to lay perfectly still for a while because it was in a main artery. And if  I moved, it could start really bleeding. Anyone who knows me, knows staying still is not what I do best. But, remember the video from my grandson? They held it above me and I just kept watching it until the time passed. As I said yesterday... it was my lifeline. By the time I left, all the nurses had fallen in love with my grandkids! I also had a catheter in while I was in the hospital, and before I could go home I needed to pee when they took it out. Again I felt scared. Could I actually pee again? How was all this stuff they changed in my body going to work? But luckily, I had no issues. Except when the nutritionist came in and thoroughly confused me, my daughter, Adrienne , and Marv. I had no idea the things they were going to say. And they said it so quickly that on a good day I couldn’t have followed it,  but still being in some pain and on some morphine, I wasn’t the most alert person in the room. Because the anti rejection drugs make the immune system weaker, But what I did hear was I was more susceptible to disease, bacteria etc. There was a list a mile long of things I couldn’t do or eat. I remember I started feeling sick inside. My whole life was about to change in a way I hadn’t thought about before. I had to remain in quarantine for 4 months. There were things they made sound impossible for me to do and ever have a life. And that is when my attitude went down hill. However, as I made my 2 trips a week back and forth to Cleveland, I started realizing they were over explaining for those who wouldn’t do everything they told them to do. So maybe those people would at least do enough. Little did they know , I am the kind of person that if you tell me I have to be careful about my food and don’t go here or there, that I am going to do what they say x 10. So, I drove myself crazy. And I’m sure it wasn’t easy for Marv either because I became so paranoid. Another thing I wasn’t aware of previously, is that they wouldn’t let me out until I could afford to pay for a months worth of meds upfront, which was a few thousand dollars. Again, Holmes County kidney foundation called in and talked to them and worked it out,  so I could get the meds I needed and go home. What a blessing.  So, on the fifth day they let me go home. I was so excited until I got in the car. Then every little thing hit me. The nurses wouldn’t be giving me my pills when I needed them. I was going to have to figure all that out myself. And it was a lot of pills! And they had to be done right! What if we were in an accident on the way home? If I wore my seatbelt would it ruin my kidney if we got hit? The belt went right across where the doctor put my kidney. What was I going to eat when I got home? I hadn’t planned on all these things I would have to think about after I got home. I was only trying to get through the surgery and heal. My brothers and sister and their spouses all stopped by as I felt it was ok.   My oldest brother Stan was so good at making sure I had enough bottled water because I didn’t have a water filter on my refrigerator. Every few days he and his wife, Janice, would show up with water. My brother in law Ron would make a trip to Winesburg to get me the good fudgesicles any time I ran out. Because I was so paranoid , I ate a lot of fudgesicles! That was something I knew that was ok. Meat and fresh fruit completely scared me because of the bacteria. They had drilled those two things into my head.  I honestly went for almost a week with only drinking water when I got home, because I was too scared to eat. Finally a friend from our church made a bunch of meat that was already cooked for me to put in the freezer. That was a God send. My daughter in-law Brooke is really good at organizing. I’ll never forget when I got home, the kids came to see me and she took my medicine list, and put a whole week of pills together for me. I remember sitting there just staring at her thinking, thank you, Brooke, thank you. And the next week my sister came and made sure I did it right. Marv and my kids were also so good to me. People from church brought meals which was extremely helpful. One day it hit me. How blessed am I that people care so much? What do people who don’t have a support system do in cases like this? My heart just broke as I thought about that. I was truly thankful and heartbroken all at the same time. 

 Next Monday I will go into more challenges I came across. I want it to be known that Cleveland Clinic did an amazing job on the surgery and physical care. But the emotional support was very lacking from them. Many times if I would call I felt like I was asking very stupid questions and I would hang up in tears. I think this is another reason I want to put this out there. I want others going through this same thing that there are no dumb questions. Stand your ground. You have never been through this before. It is your body and you know best if something isn’t feeling right. I also wanted to wait until I could have a better perspective about the situation. And so, it has only taken me 4 years and a pandemic to get there. But better late than never! 

I will continue on weekly with my journey  on Mondays. So until then... To God be the Glory! 

😊🙏

When the waves come crashing in remain strong in Gods love and mercy!

OCEAN THOUGHTS...

Day 4: When feelings matter...

The time from when I heard I was going to get a kidney, and my actual transplant was roughly two weeks. What an unusual time for my emotions! At first I was so happy to finally be receiving a kidney. Then a day or two later it really hit me. I’m going to be having a transplant! And fear set in. I remember just wanting to have all my affairs in order and writing down all the bills for Marv and what time of the month they were paid. We have always taken turns doing the finances, but my turn had been quite long this time. So I wanted it to be an easy transition for him. I had this incredible heaviness on my heart. I started making videos for Marv, each of my kids, grandkids and my siblings. I even made some for a couple dear friends. I also planned my entire funeral and wrote it all down so no one would have to be trying to figure out what I wanted. I’ve been there and it’s hard enough to lose someone, yet to have to feel the pressure of honoring them without a clue what they wanted. I also put a note where our life insurance policy was, and who to call, so if Marv wasn’t thinking clearly, it would be easily accessible for him.  I talked to my brother Ralph who is a lawyer, about making sure our will still made sense, and that I had a living will in place. You might wonder why was I doing all this. Had I lost my mind? Gone totally bonkers? No, that wasn’t it at all. However, when it truly hit me I was having a transplant, it also hit me I could reject that kidney. Something could happen that I might die during such a major surgery. And I couldn’t rest until I knew I had done everything to make it as easy on my family as possible. That is truly something I had never thought much about before. At least not with such heaviness on my heart. Once I had done all the things I felt I needed to get in order,  then I wanted a family gathering with all the kids and grandkids. I remember that night. It was all I could do to hold back my tears as I hugged the grandkids goodbye. Feeling like I just needed to say...please remember me. I sobbed once they left , feeling like it could be the last time I saw them. However, it was an amazing thing that my four ( yes, I said 4!) year old grandson, Liam, did for me. He took my tablet and went around to his sister and all his cousins and made me a video to take with me to the hospital. I can’t even tell you what that meant to me. It was my lifeline after surgery! And it was just from the heart of a 4 year old. Pure love. I will never forget that. I think we can all learn from him to reach out without pause. Just do it. So after that night, I tried to really prepare for my transplant in other ways. Gathering things for the hospital and getting last minute things I might need. Our daughter, Adrienne, from Florida flew up to go with us and made sure that not only us, but the donors family had a place to stay inside the hotel connected to Cleveland Clinic. Our kids who live close by had been doing various things to help us and this was something she felt she could do for us now. My whole family was incredible. My only sister has always been there for me in so many ways. But her and her husband Ron were just always doing something for us! My brother Ralph helped me with so many legal things. And all were stopping by and praying before, during and after my transplant. Our kids were so kind, even with their busy lives. And our grandkids each touched me in their own unique, special way, that I just fell in love with them even more. So the night came to drive to the hospital. I remember that drive. My stomach was in knots, trying not to be a wimp. It was hard to go to sleep in the hotel because my mind just kept racing. We had to be there very early the next day and I was so glad we were able to be right there in the hotel. Then , next morning I woke up with the weirdest feeling of excitement, fear and almost confusion. All my siblings and spouses came up. All our kids were there. It felt so surreal sitting in the waiting room just anticipating what was about to happen. When they took me back to get prepped. I remember all my family, siblings and their spouses included coming into this little room while I waited for them to take me to surgery. As I laid there and looked around at all these people I loved, I couldn’t help but be so grateful for all God had given me. And the fact we could all talk and laugh and even cry meant so much to me. The hardest part was when I had to say goodbye to Marv and our kids. It truly hit me when Marv started to leave the room, turned back around and gave me another hug and kiss with big tears in his eyes. 
Then they wheeled me away...  so until next time,  To God be the Glory! Next post I’ll go from the time of my surgery forward. I am going to post only one or two times a week from now on  
🙏 Again, remember my community prayer wall. If you’d like to be on it with specifics, or in name only, please let me know. We are praying and God is working. 😊

Day 3: Where do I go from here?

   I talked about finding the blessings that are put in our paths in life. But I want to emphasize I was not able to see those blessings at the time. I wonder if God, in all His wisdom, does that to see if we will just keep believing, even when we can’t see a solution. Even if it’s not a huge belief or faith, God will honor that. 

    So what were my feelings really like as I went through that hard time back then? Well, please remember God was really working on me. So I am not saying this as a good example. But merely the truth of what I felt. 

      When I found out about this life long disease I felt much anger. Anger that I Might not have more time with Marv, and that I may not see the things that my kids and grandkids were going to go through. Much fear. Fear that everything would be taken from me before I was ready. Much sadness. Sad again that I might not be there for Marv and my family. There are so many emotions that happen in a circumstance like this. But, once I accepted that this was my new normal, I starting realizing that Gods got this. I was feeling well enough to work and enjoy it. This was huge for me. And still be able to enjoy our grandkids. Until 2012. As I said before this was when I had my second episode. So I had to go back into the hospital. Not feeling quite as sick as the first time, but plenty sick. I was then faced with the reality of my kidney function approaching transplant stage. This started a whole new adventure. It is hard to understand what you have to go through for them to be willing to consider you for a transplant. I had to go through mental evaluations to make sure I was going to be able to handle the mental aspect of a transplant. At the time I thought, this is ridiculous, not knowing this would be the hardest, most real thing I would have to deal with after the surgery. I had to go through many physical tests to make sure I could handle this major surgery. Did I drink? Did I smoke? Was I going to take care of this precious gift I was going to receive? I had to go through financial questions. Could I pay for the transplant? Would I have money to pay for the anti-rejection drugs I would have to take the rest of my life? These are very expensive, and if I couldn’t afford to take them, they didn’t want to give me a kidney, because it wouldn’t last. It was really a daunting task to go through when I was scared, upset and not feeling myself. I had no idea the hoops I would have to jump through.  Now I know those rules are there for a reason, but at the time it was not easy for me to see what those reasons were. I just wanted a kidney to feel better and move on with my life!! But God had so much more to show me first. Then there’s the task of finding a match! No one in my family was a match except one of my brothers. I remember when he called to tell me he was a perfect match. I actually cried. Then he had to call me again and tell me they wouldn’t allow him to donate because of a previous surgery he had. So again I cried for a different reason. The ups and downs of that journey is hard to describe. Getting a call from Cleveland clinic saying they might have a match. Someone died and I was second on the list. If the first person wasn’t able to take it for some reason, they would call me back. But they only would call if I got it. So needless to say,  that was a crazy time waiting for their call. And sitting there thinking how am
I supposed to be happy, when me getting a kidney means someone had to die? What a strange feeling! I had some people I didn’t really know well, offering to be tested. How humbling. But then, this sweet friend of mine, Shannon, came forward. She was a girl I came to know and love when we were youth sponsors at our church. She was so determined and led to see that I got a kidney. ( God working!) She got tested, but was not a match. But she did not let that stop her. She worked for a long time to have us put on the “swap list”. Finally, after years I was on that list. And within 4 months I had a match. It was actually a 3 way swap. Shannon’s kidney went to someone in California that wanted to donate to someone and they weren’t a match either. And that kidney went to someone else in California in the same situation. And that third person was a match to me, so that kidney came to Ohio for me. It is a phenomenal program when I think about it. The way this is orchestrated and getting the right kidney to the right person! It’s amazing. So, 
here I was, waiting for my transplant date. Tomorrow I will share about the feelings I experienced in the days going up to my surgery. Feelings I never thought I would be thinking about. But until tomorrow, to God be the glory!! 
   I started a community prayer wall by my desk. I put notice up on FB and I want to invite anyone here who wants to have their name on it as well.  I am committing to praying for everyone on that wall everyday. If you want to share details of your request with me that’s fine, but don’t feel you need to. God knows your concerns even if all I do is mention your name. There is power in prayer. I am sharing one of my “Ocean Thoughts” today that talks about community and being there for each other. 
  
                            “The Lone Bird”
What I learned: God sends people when we need them. Let’s be open to letting them help and also open our hearts to His voice so we can help others.
        A lone bird on the beach is not an unusual sight. However, one day as I was walking, I spotted this very lonely looking bird. All of a sudden another bird swooped down beside it and just sat there with him. I had to think of how God has done this for me so many times. I had some hard times in my life when I felt pretty alone. But when I look back, God has provided someone who “swooped” in and helped me. Or maybe just sat with me and listened. Times when I thought no one cared, or no one could possibly understand, all of a sudden, there they were , right beside me, carrying me through. These are the ways God helped me through difficult situations. And He helped me come out the other side with a better understanding for other people. He also showed me , through the people He sent to help me how to be available, and move when God puts someone on my heart. People these days like to call it “paying it forward” or “ random acts of kindness”. I like to call it, God working through people’s hearts! To God be the glory! So often I have been in awe of the loving greatness of God. He is faithful in helping us exactly when we need it. And often it is through others who listen for His voice and respond by coming to our side. Today I am thanking God for friends and people who open their hearts to His voice and unexpectedly show up in our lives... just when we need them! I feel God put on my heart today to reach out to community. And they can be anywhere. Not just in my town or vicinity.  😊🙏

Day 2: Looking for blessings...

     I suppose everyone knows what it feels like when we say,  “my heart fell into my stomach.”
That’s the only way I could describe how I felt when I found out about my kidney disease. Marv and I had just started this new adventure with our own studio. And everything seemed to be falling into place. So this certainly knocked the wind out of our sail.  But I think what I want to focus on today is the blessing of how God so graciously moved us forward the next number of years. As I said before, I  was a classic workaholic. ( I think it runs in our family!) So looking back, it is so good to see how, in the midst of everything, God knew the best way to take me from what I was facing to where I am today.
    First of all, Marv and I were able to go forward with our business for 8 years before we had to sell it. We have some good memories and met so many wonderful people. It wasn’t always easy. I had many days of being drained. My kidneys were functioning at about 30% until 2012. That’s when I got sick again and ended up back in the hospital. This was the beginning of  the end for my studio days. At that time my function went way down, and I was just too tired to photograph weddings etc. When I look back , what a blessing those years we could photograph were. But as always, God knew what was coming up for us. During this time, He blessed us with grandchildren. And in some way this helped me eventually accept that I could no longer work 60-70 hours a week. I think if I wouldn’t have had those kids to help fill my time, I would have been so lonely. Isn’t it amazing how God works? Now I think, what if I wouldn’t have had to go through this? I know I would have kept working. And I could never have been as involved in their lives and watch them grow. So, now I can realize what a blessing I was given. That may sound weird. And don’t get me wrong, I wasn’t seeing the blessings at the time. And I would never judge anyone for not being able to see the roses in amongst all the weeds. But, when we go through a tough time, and can look back to see how God worked things out for us, it is such a miracle. And it is a miracle I’m glad God thought I was worth walking me through. Have you ever heard the saying, “ If nothing goes wrong in your life, maybe you aren’t giving Satan a very good reason to spend time on you”. Simply put, it means if we aren’t giving Satan a reason to be worried about us becoming a strong disciple of God, then maybe he’s just leaving us alone. So when everything seems just peachy, are we really growing with God?  That’s a theory to be debated. But I have found in my life, when I truly asked God to make me usable for him, my life felt as though it was falling apart. But really it was just being put in place. I will never regret having gone through what I did, no matter how hard it was.
      I want to let all of you know that if you , or someone you know, has, or is going through difficult health and financial problems please don’t be afraid to contact me.  Even if it’s not kidney issues, many of the same emotions apply.  Or if it is kidney related I certainly can understand the ups and downs of that whole journey. Please feel free to contact me here and I am willing to listen and pray with you. May we always be able to find the blessings!
 Also, for years, as my husband and I would walk our favorite beaches, I would write down my thoughts about God and life. There is something truly special about connecting with God in the beauty of His creation. I want to share one of these with you each day. I am also sharing these on FB, but if you can’t see it there, I wanted you to be able to see it here. Hope you enjoy and until tomorrow... to God be the Glory!
                                                 Ocean Thought :
                                            (The Dizzy Brunette &
                                                    the Docile Fish)
Lesson I learned: God has a purpose for all of us and it can be different for every season of my life.
     Have you ever stood on the edge of the water when the tide comes in? If you just stand there and don’t move, it feels as though the earth is moving  beneath your feet. Then, if you look down and stare at the water rushing back into the ocean, it can make you dizzy! As I was doing that one day, I noticed all the shells that were constantly being carried onto the beach, only to be hammered back into the ocean. This particular day the waves were huge and beating with great force. As I watched the same items coming in, going out, and coming back in again, it made my head spin. I almost felt sorry for the life they had to endure at the mercy of the waves. Some shells, and even fish would remain on the shore, but on this day, not many could stay on the shore for long. After getting extremely dizzy from watching this circus of nature, I began to walk the beach. Not far into my walk, I came across a fish lying on the shore. I stopped, and in that moment I realized something. This fish was not meant to lay quietly on the shore with no purpose. It was meant to be in the ocean. So, if there were days it got pummeled by the waves, that was ok, because that was the life God intended for it to live. I am sure it had days of wonder and amazement swimming peacefully in the beauty of the ocean. But then there were also rough days when it got swept onto shore and back out again.
   I thought of the times I have been so busy in my life with family, work and even church. It felt as though I was being tossed about by the waves and not always really getting anywhere. But then I realized, God was saying that was the purpose I had for you in that season of your life. Now, for the past 14 years I have been dealing with chronic kidney disease, and 3 of those years I was waiting for a kidney transplant. Then 4 years ago a very special girl made sure I received one. Before, I wished I could slow down, and now,  I was being forced to.  As I walked the beach, God spoke to me about the creativity to tell my story and give Him the glory He deserves! Perhaps this is my purpose for this season of my life.
    I’m giving thanks today for the seasons of my life. I have to remember God has a purpose for my life, and that purpose can change with every season. I can’t be afraid to change with it.

Like the sun falls into the ocean at night. My heart fell into my stomach when I learned of my kidney disease. 

Day 1: The beginning of a journey...

So, where do I begin? Our whole life is such a journey of ups and downs right from the beginning. I won’t bore you with my knee scrapes and stitches from my youth. But rather with a new beginning for me back in 2006. I had worked in a professional photography studio for 18 years. At first I just started doing whatever needed to be done, to managing it, to being a photographer myself, to buying the studio with my husband who also loves photography. This all happened over a period of 26 years and a lot of hard work, while raising 3 children. It was a passion for both my husband and I. We worked many hours and I found out, at the time,  I was quite the workaholic. But we felt very blessed to be doing something we loved. And doing it together was an extra bonus (most of the time!) 😊

It was 2006 when we actually purchased the studio from the man I had worked with. We were very excited. It all happened pretty quickly, and it took us a bit to get our ducks in a row. But we enjoyed all of it. One Thursday I was trying to get our health insurance worked out since we were now self employed. I was so relieved because the agent was coming the following Tuesday to sign the papers, and everything would be complete. Remember, to this point, I never had one sign of any kidney issues ever.  So as far as I was concerned, Thursday to Tuesday was no big deal. But, I came to find out that a lot can happen in one day, because Friday morning I woke up extremely sick and in a lot of pain. I was so sick I almost didn’t make it to the hospital. When I got to the emergency room they gave me a very high dose of morphine, which made the pain tolerable. They ran all kinds of tests and they came back into the ER room with the look of doom on their faces. I had to be admitted to the hospital and looked at by a nephrologist (kidney doctor) because BOTH of my kidneys were not functioning correctly. So after being in the hospital for almost a week, and many tests later, the nephrologists came into my room painting what seemed to be, the gloomiest picture imaginable. I had Chronic Kidney Disease and neither of my kidneys were working. They also said I will need to be tested for Kidney cancer because something just wasn’t right. Their bedside manner needed some work. But they let me go home, with the understanding I had to get set up with a nephrologist that I could see on a regular basis. Marv and I went home not knowing what was ahead of us. The emotions of fear, anger and total confusion were so overwhelming. And so, the journey began. Doctor appointments. Blood work. More doctor appointments. More bloodwork. Surgery to blast the kidney stones that had lodged and were causing further problems. All while running a business. Luckily, our kids were grown by then, even though one still lived at home. I think this was a major time in my life when God started working on my heart. Little did I know he was answering a prayer I prayed a number of years earlier. I had prayed, “ God , do whatever it takes to make me usable for You.”  Word of advice, don’t pray that prayer unless you really mean it. I thought I was a pretty good person. But God had plans of showing me all the things He needed to change in me, before He could even begin to use me for His glory! And there was plenty to be done. So, until tomorrow... to God be the glory!! 😊