It is a beautiful day! Very excited for today’s reunion!
A few months ago my sister shared this blog with me. At the time I was feeling overwhelmed and lost as Shannon was struggling for his life in the hospital. Those that spoke to use during this time realized how close we were to losing him due to human error. Everyone encouraged us to pray and prayer is the only way we made it through. It was a very emotional time full of light and dark times as he recovered and returned home.
During this dark time it causes you to reflect on what was important. Time to make you try to find lightness in such dark.
Since this time we have continued to have our full share of darkness and light. Life continues to throw us curve balls since the transplant that we had not expected. That is life though! I encourage Shannon to continue to share his story, but the darkness we are experiencing sometimes gets in our way. From insurance troubles to mortgage issues to more doctor visits – sometimes I look towards heaven and shout towards God – WHAT NEXT?!?
(I encourage you not to shout that. You might not like the results.)
And then, something else happens again. I am learning to not curse or scream at God asking what is next or I might not like the result. We now chat regularly, but not as often with the colorful language I used to use.
This entire blog post below is an amazing read, but the paragraph below rings true more the past few weeks than when I read it originally:
“Just a few years ago after my Dad passed away, I told myself the darkness would never be blacker. And in many ways I agree it’s never gotten so dark again. But like every life, I’ve seen my share of the night….moments of complete agony on my knees as I wonder how to even rebuild my life or keep steady when the storms pummel away at me and rock my foundation and my faith, I have screamed into the night—I have felt the darkness I felt at my Dad’s bedside all over again in a different way that took new forms. I have searched for stars to find only clouds at times. I have wondered where my friends are, where my path is, and why my eyes can’t adjust. I have begged for daybreak, just like you have.”
Take a moment and read. Remember to look for the light during dark times. Each day we are trying to. Each day we are looking towards the light trying to focus on the blessing and gift Shannon has been given.
When we remember the amazing gift, we find the light once again. We just need to remember to keep looking forward, trust God’s plan, and have faith it will all work out.
In the beginning there was darkness.
That’s always how the stories begin.
It starts right there at the bedside of your father as he takes his last breath. It starts at the wheel of your car, eyes blinded with tears, wondering how you’re going to tell your wife that you lost your job. It starts when you missed the electric payment for the second time in a row and the lights click off. It starts right there.
We’ve all been under the misconception that the darkness is where it all ends. That the light dims, the sun sinks behind the earth, the chill comes, and it’s over. It certainly feels over at times, doesn’t it?
But in the beginning there was darkness—even for God.
And how often we forget.
Just a few years ago after my Dad passed away, I told myself the darkness would never be blacker. And in many…
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It is hard to believe that about this time 8:45am, three months ago today, I was staring at the ceiling of the OR at OSU. Just 15 minuets earlier I was finding peace laying in pre op. I was praying that Andi Olasin Gilliland was having a successful surgery. I was praying for peace for my wife and family. I was thanking God for the gift I was about to receive. And I was hoping that I would take this gift and use it correctly. I found an inner peace that I had never experienced before. To take a breath and realize that your life is going to be, literally, in someone else’s hands, and have confidence in them. To say this journey has been wild is an understatement. It seems like yesterday and forever ago at the same time. My prayer is that everyone seeking a transplant of any kind, have this gift I have. Every time hear of the struggle someone is having to find an organ it pulls at me. I will do the best I can to spread the word and educate. Please be an organ, eye, and tissue donor. Please consider living donation. #lifelineofohio
Crazy to think it has been 9 weeks since transplant!! Pinto the kidney is kicking great! As of my lab draw yesterday the little kidney that could is working the best since surgery. There have been a few bumps in the road and tears of faith, but we are still moving forward.
I am still not sure how I will ever repay Andie and Jeff for everything. I am hoping God will direct me on how to pay it forward. I keep getting little clues on what I need to do. Thanks to Heather for putting up with me being a not so patient, patient. Love to everyone for their support and encouragement! At least I can give out more hugs now!!
I posted this video last week on Facebook and thought I needed to share it again on here.
Very motivational video to watch! Take time to watch and hear the message at the end! I don’t know how many times I just thought what’s next? What is happening in my world? And then your hear a story like this one and just know that you have to have faith in Gods plan.
“The more times you get up, the stronger you are.”
The last 6 months I am thankful that my amazing friends reminded me to get up when I fall. Thank you my loves! So very grateful that you reminded me to get up, picked me up, or pulled me up even though I was kicking and screaming. I love all of you! I am so blessed!
Multiple reasons for the title of this post to be ‘WOW’.
WOW – It has been over a week since we have posted. Where does the time go?! Life just keeps flying by and it is a race to keep up. We made it a goal after surgery that to try to have our lives move a little slower, but as I transitioned back to work and Shannon continues his recovery – life has fallen back into the rush it was before. Hopefully we can work together to slow things down some and continue to enjoy the small things in life. Lately it has gotten a little complicated again so hopefully we can work on that moving forward.
WOW – I had no idea people were reading what we have been sharing since Shannon went home from the hospital before the new year! The outpouring of love and messages from everyone waiting for the latest update is WONDERFUL! Just WOW! We love having this opportunity to share our lives with everyone and hopefully share more information about PKD and transplant for future patients as well.
WOW – Life continues to be a roller coaster. I know I keep saying this, but it is very true. From the moment Shannon was reminded he had PKD in our first few years of dating till now – it has just been a roller coaster. We have been doing a lot of reflection the last few months. It is good for both of us, but also painful. It is a healing process for both of us as we transition into a normal routine post-transplant.
So now for the Shannon update. Maybe this one should be a ‘life’ update since it includes so many things. I think it is easier to recap starting with last week. The missing blogs we did not get to post are below J
Tuesday, January 10
Shannon has been struggling with sores on his lip and mouth since last week. He of course will not share information on here because he is frustrated with everyone thinking it is a common cold sore – which he has never had – when we know it is a reaction to the medication. Thank goodness for Dr. Vensil for providing some relief last week. He has not been able to eat or drink much again which is VERY frustrating. Today he had the head transplant nurse look at it, and once again we were told he would let our coordinator know (who we still have not met!). So evidently that means we will just wait for action on Thursday our feedback to the nursing coordinators falls on deaf ears.
Tuesday – January 10
Mom slipped and fell at her house late afternoon today and broke her wrist. I think Shannon and I talking about having a quiet evening at home must have triggered the chaos. God thought life was getting a little to simple for us I guess. I spent some time with mom in the ER to get plans moving forward for next steps – surgery. Thank goodness for our friend Al and my niece Shala. They went to the house to be with mom for the evening while I went ran around to pick up meds, Shannon, more meds for him, food for mom, food for Shannon, etc. etc. (Both patients required different dietary needs ;))
Shala was able to spend the night so after getting mom settled in, Shannon and I went home to stay. Thank goodness for granddaughters!
Wednesday – January 11
I think Shannon is finally getting a little stir crazy. Today we had moms appointment with orthopedics and the equine dentist scheduled at the same time that I had to be at work. His head almost exploded because all he wants to do is help me get everything taken care of. To help relieve some of his frustrations I finally caved and took him to the horse barn with me to visit. It definitely helped him! I think it is time for regular visits and hopefully by February 1 we can have him start walking the horses to the field again.
Thursday – January 12
Friday – January 13
Mom had her wrist surgery first thing this morning and she was a champ! Thank goodness we had an inside scoop at the surgery center from Miss McGinnis! Looks like she will be staying with us at our house for a few days with her dog Gracie. Slumber party for the patients at Country Club manor! Mom was representing the PKD Foundation this morning in her attire even!
Shannon’s realization that he was released to drive yesterday and the nice weather was very dangerous! He quickly decided a day on his own was in order. He hitched a ride to the shop to pick up the truck (I encouraged us to move all vehicles to the shop for ‘storage’ before his surgery. It was my way to keep him from trying to drive too early. Evil wife I know.) After an entire afternoon and evening out on his own I anticipate a weekend of him trying to recover at home. We will see!
His numbers from his bloodwork came back and no wonder he is feeling so amazing! His creatinine is 1.57! GFR is at a 49! WOO HOO! Lets hope this trend continues.
Saturday – January 14
Okay…I was wrong. Shannon didn’t crash until this evening finally after a day out yesterday and another day out today! After being out and about all day with mom and Al at the antique malls, he ended up at the mall with our niece Haybug shopping. To say he might have over did it is an understatement! Hopefully tomorrow afternoon can be full of rest for him!
Monday – January 16
The meds the doctor prescribed on Thursday seem to be working! Shannon is beginning to eat more each day. Today is day 2 of a low grade temperature, but we still ended up out and about. The temp doesn’t ever seem to go away and nobody at OSU seems concerned so we will just keep pushing forward.
We still squeezed in a few hours at Megan’s babysitting the kiddos today so they could work on their house even though Shannon’s leg was swelled up some. Shannon was in heaven propped up on the couch resting with babies in his arms sleeping. A perfect day for him to enjoy the kiddos and relax some at the same time.
Tuesday – January 17
Bloodwork shifted some today. GFR is back to a 44 and creatinine is 1.72. After the weekend of excitement Shannon will hopefully be staying home most of this week. He has a little bit of a bug and continues with the low grade temp. Telling OSU did not raise any red flags though so he keeps pushing forward.
Friday – January 20
Whatever bug Shannon had this week he shared with me! It was frightening to be so out of it with a fever that I could not take care of him! All week he has had a low grade temp and said he did not feel well. I had not idea it was this bad!
Evidently he has felt so sick for so long he did not think it was a big deal. Next time I told him he must tell me that him not feeling well is more than just a transplant or the PKD. This bug we had this week was NO JOKE! Whew! After 13 hours of sleep last night I made it through most of the day at work and am heading home to sleep it off again. All week I have been pushing and forcing him to eat. Poor guy! With this bug food it the worst thing you can do!
Shannon agreed that next time he will DEFINITELY let me know. I had thought all week him not feeling well was a result of the medication still! I feel badly that he was so sick and just tried to push through and shrug it off. I am so thankful I had him though to take care of me. I am not sure what we would do if we were both down like that at the same time. Tomorrow will be better I hope for both of us.
His numbers came back today with a GFR of 42 and creatinine of 1.79. I know they are creeping the wrong direction, but once again nobody seems concerned at OSU so we will keep pushing forward to next week. I sent the coordinator a message about him having the low grade temp all week, but I doubt we hear from her. Maybe I should start sending a message a day?
Thursday – January 12
The doctors appointment went very well today! Shannon was proud that I held my tongue and did not give the coordinator a piece of my mind for neglecting him as a patient. The coordinator was very cordial though during the appointment and listened more than we had anticipated.
We advocated for a decreased dosage of his Potassium pill since he has been restricting food with potassium because his levels were so elevated. So now he can go back to eating bananas regularly and hopefully that will help balance out the levels without taking 2 additional pills.
The doctor said the next appointment would be in 3 months. Shannon of course was very excited. I am still trying to find the excitement since I have lost trust with the coordinator. I need to have faith that she will remember to review the bloodwork and communicate with us each week to adjust medication.
Overall the appointment was very uneventful. Which we both think is a good sign!
After the appointment we went to pick up pizza and head to Andie’s for an amazing dinner with her family. We love hanging out with them have fallen in love with the kiddos.
More to come soon!