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?