Meds Roll Coaster

Well, with as much as we want a "normal" life, there are still things that are not quite normal.

Sean's white blood cell count has continued to drop over the last few months. I'm sort of kicking myself that I wasn't more on it in requiring the doctor to do mid-month labs so it didn't fall to 0.7. (Our hospital shows normal as 3.8-11.0) Last month it was low at 1.9 and they made some changes but did not check mid-month and here we are at 0.7.

So another med change, but a big one. AND another trip to Vandi for a shot to encourage blood cell production. The shot itself was easy, but when Sean asked if there was anything that he needed to know, they said no. This is not quite the reality. It caused him great bone and muscle pain. This pain looked to be worse than the pain he had with those huge kidneys.

The plan now is to keep him off of Celcept until we go in May. For now he is on Prednozone which we are not at all thrilled about. He will go to our clinic or doctor for labs mid month to see how the shot and Prednozone are working. I am taking off in May to go with him.

I hate to complain considering how easy it went for us. However, I think you have an expectation of stress and drama with the transplant, but figure life to be normal/calm. The reality of it is this: with any foreign body part, normal is not exactly what you remember it to be. With that said, still very greatful, but need to adjust our thinking about the after care. We need to be as persistant as before and knowledgable. I believe that I was lacking in this post transplant, but will get back to my job!

I have heard people want me to update this, but much of the time, we run our butts like everyone else now. His scars are a reminder of the good deed our friend did and the hope of a normal life.

Our kids are doing well. Our daughter got accepted to Governor's School and leaves at the end of May. She was awarded some other honors at school last week. We are very proud of her. She has maintained a 4.0 through all of this and hopes to finish the year the same way. She is finishing her softball season. She has been catching some of the games and "loves it!"

Our son finished his bowling league. However, he and Sean will begin a youth/adult league on Monday. It will be difficult with him this summer. His best friend of 5 years and his sister both leave at the end of May. His friend is moving 3 hours away. I worry how he will handle all of this, but like a child, he should bounce back.

I have stopped leading Weight Watcher meetings and prefer to just reception. I feel like I have more interaction with them at the counter than in the meetings. I am enjoying my change. I will continue to work in 1st grade as I really love this age.

Sean would like to take up golf again and I will try to encourage that. So if anyone stinks at it and would like to go hit some balls, call him. He used to do this before I came along, so it has been quite a while. I think he needs a hobby.

Wow! Our Daughter Rocks!

Well this week was a good one for Dayle. She made the softball team AND got accepted to Governor's School in East TN. This program will allow her an opportunity to earn 7 college credit hours and experience what it's like to live away from home. She will be gone for 5 weeks over the summer. It begins just days after our school year ends.

Her softball practices are Monday through Friday so her life just got super busy. We are going to allow her to drive herself because we won't be able to get her to games on time with the new extended schedule. She will be required to be at the games by 4:15 and I won't get off work until almost 4:30 now. She has been driving herself around this weekend to practice. Interesting that her license came in the right time frame.

New Life, Back to Routine

Well, I am happy to say that some things never change. When the TV wasn't working because of snow on the dish, my husband went outside, stood on the camper and cleaned the dish so he could watch the news in the morning. Routine!!! (If I balk, his response would simply be.....I didn't lift!) My husband!

Also, his frustration with "cooking every night." Yes, for those that don't know, I married very well-I do NOT cook! Thank you Lord. He would rather have gone out in 20 degree weather than cook last night, but payday isn't until tomorrow, so dinner he made. His creative nights are the best dinners. He gets bored so he takes an old favorite and changes it. This one was a hit. Funny-he NEVER writes it down or I might actually cook some nights.

He looks fabulous, for those that haven't seen him. He is keeping the weight off and once the weather clears up some, he will go walking with me in the early mornings to take off some more. Some say he needs no more weight off, but under 200 is the goal. He isn't really that far away, so it is certainly attainable. I get to reap the benefits of a hottie husband. Ladies isn't that called "arm candy" or something-haha. Anyway, sharp dressed is the goal. His stupid T-Shirts are like 3 sizes too big-hard to put my arm around him with all that fabric hanging off him. We are slowly buying new things, but outwear is the most important since he needs to look presentable at work-T-Shirts are not the priority yet.

The donor has been back in CA for a while now. Doing well-Sean talks to him. I feel like I was a pain in his butt keeping up with his appts and such that I leave him alone mostly. That poor man is not used to having a nagging wife, so I figure, I'll let Sean handle the updates on him. I do think he might have liked to ban me from his room when I was making him walk during his hospital stay. I did it because I love him!

We are trying to plan a visit to see him. He's been in CA for 9 years and we've never been, so...it is high time. I really don't want to be on a plane that long (I'm not afraid of flying just used to two hour flights.).

Funny-I thought I had nothing to say-lol.

Meds, new stuff, whatever....

Well I have been told that I need to keep writing so here we go....

Life is fairly normal. Sean went back on Jan. 18th-only 20 days post transplant! Whoo-hoo for my hubby! He wanted to go back then and he did. Still going to appointments, at first weekly, and now two weeks. All the extra crap is out of his body-stint, dialysis port, etc. He was quite excited when the last thing was removed.

He came home on NO steroids! That was great considering the side effects of them. I think that this wonderful thing is due to Dr. P. Clark for saving the glands when he did the removal. This man was fabulous-a total pleasure! He takes a mess of meds still, but luckily NO steroids.

My sister in law is looking for meds so here they are: Cellcept 500 mg 2 times/day, Prograf 5 mg 2 times/day, Dapsone 1 time/day & Valcyte 1 time/day. He just began taking a low dose of something for his cholesterol. What has not been introduced back and I hope it continues to stay that way is a BP med. I am impressed with the BP since the new kidney!

Sean has done well at managing his meds . However with the snow and fun yesterday he was a few hours tardy in taking his meds. Please for my sake, don't bug him about it! He realizes the issues and was so irritated with himself that I said nothing. I only had him call the service to advise on the next dosing. Very proud-I do not babysit this process, so he now has a back up plan in place. He was in the process of changing over the documentation sheets which is part of the reason. I usually do glance at the pages (honestly, I think the kids do too) to make sure it's being done. Pills are in boxes on the fridge door, so you'd think I would have noticed. Oh well, lesson learned by all.

I am letting go of some things that take me out of the house in the evenings. I will still bowl on Monday nights and reception at Weight Watchers on Wednesdays. I did give up leading my Tuesday night meeting and leading on Wednesday night. I love my groups so it was a difficult choice. Last week in church it just became clear that I needed to find me in all this mess. I've been so focused on one thing and luckily for me I had these things to keep me focused on only the positive things. I credit working WW and bowling for that focus. Now however, I need a little rest. My daughter is getting older and will likely only be here for another 2 1/2 years. (She wants to go to school in FL.) and Garett is getting older too. We only have one life and limited time with our kids. I don't want a "new life" full of regrets-not to mention I kind of like spending time with my hubby. If not, what did I do all this for? So, I'm downsizing my responsibilities outside the house. I am happy with my decision and hope others will at least respect it.

From Zero to Sixty

Well this was the week Sean went back to work. I think he did well at the beginning of the week easing into it, especially since on his first day both of his other teammates were sick. He was on his own the first day.

However, by today, Friday, he was wiped out!!! He said many work orders came in yesterday and they had a lot to do and he even drove much of it by himself. I discussed with him the need to move as slow as he needs. His response was "I didn't lift anything." He is used to busting some butt to get those work orders done within a short period. When he was up to par, this was not a problem. Of course now, he jumped right back in not thinking about it and it caught up with him. As a result, there was a bit of leakage/blood on his shirt today from the incision area. I don't see where it came from, but none the less nerve racking.

Tonight he missed Garett's Blue and Gold because he just couldn't wear pants on that incision any longer. (We need to get him pants that fit better. He said the pants today were too big and he had to pull his belt too tight which is why the blood happened.) I am glad he finally agreed to leave. He came for dinner, but left before the awards. Garett didn't earn much so it wasn't a big deal.

The hardest thing for Sean is how much running we do daily after work. He went from seeing us often to hardly ever. He says he doesn't like it much. Some of it is the mid-week grocery trips, car repair trips and others are carting kids to and from their events. Add to that my working at WW and tutoring and we are going, going. So I guess when you go from nothing to this.....it's 0 to 60!

The doctors seem to think things look good with his kidney. It's kind of weird to see the labs weekly having the numbers change. You're up, you're down...it's good, it's bad. His kidney function was at 55 and is now at 45. The doctors don't seem concerned about it, but to us having focused much of our life on this little number for so long, it seems like a big deal to have it go down! We are trying to take one visit at a time and roll with it if they don't worry, we try not to.

They are looking into Sean's headaches. He thinks its a stress sort of headache because of the location. He gave Sean some muscle relaxers to help it work itself out. If they continue, he might have a medication change as Prograf can cause headaches.

The good news this week is that the potassium is finally in a better range. Sean has been watching the foods he eats which I'm sure helped.

Back to Work

Well all,
I've heard that I scared some people with the post about Sean's levels. For that I'm sorry. I didn't post while I was stressed-I waited until we got the new numbers. It was very scary and we know that we need to watch the potassium intake. This is still happening now, but not as high as before. The surgeon said that Prograf is known to have something to do with it, so it might not be "all" about what Sean eats. We plan to ask the kidney doctor about this on Thurs.

Sean is going to try and go back to work on Monday. I think he needs to do this, but figure he'll be tired at the end of the day more so than he is used to. The upside I hope will be a better sleep. Since he is going back to work, he need some new clothes. He went from a XXL or XXXL to a L or XL. He is struggling to get his head around this. He keeps leaning toward the bigger clothes. I've had to remind him that he is not that big anymore!

I am getting caught up-sort of.....I have been weeks ahead all year and now, I'm barely done with next weeks lessons. (I usually have it all set out and that hasn't happened.) I hate that part of this! I want to be weeks ahead in my plans again. You'd think with time off, I could have done that, but I was wiped!

With the transplant done, I will begin to pursue other endeavors in my career. I got my Master in Leadership, so I may as well begin to consider opportunities that present themself. I was hesitant to do this knowing that transplant was looming over us. Now I feel like its time.

Now that he's well (and back to work), I guess I need to see if people are still interested in the blog. Drop a line with your thoughts to let me know.
Thanks for following us on this journey!
Mary

PS. My baby girl turned 16 today!

Better Now

I was trying to wait until we got the latest lab results prior to posting something. Tuesday we had the first appointment since release. It was a bit crazy. Apparently it is called "clinic" so that implies a huge wait time. It was nuts!!! They wouldn't do the labs prior to our appointment which proved to be a screw up.

Tues. night Sean got a call about his potassium levels being dangerously high. He was required to drink some prescription medicine (which is nearly impossible to find in Clarkville) to help eliminate potassium. Then off to a local doctor for blood work to check to see if it's back to normal. During the call the doctor kept asking if Sean's heart was well and did he feel okay. It is difficult to go from you are near deadly numbers to complacency as we spent the last two days tracking down results.

So with no one calling us back today, we went to our local doctor that drew the blood and told them we needed the lab results. With those in hand, we know that they are better, but still no input on if he's to maintain a low potassium diet or resume a regular diet. So he called his aunt to get some advise. He will stear clear of beans and potatoes, but will have tomato on sandwhiches. Then on Tues. we will clarify what kind of diet if any he must maintain.

Out of this, we have insisted that labs be done prior to the appointment so we can discuss the results as part of the visit. Otherwise it seems too very stupid to go all the way there. The point is to be relaxed after a visit not relaxed then all in an uproar. When they call at night and you are shocked and think of questions later. The downside if there is one (of drawing labs prior to doctor visit), is that Sean might have to be stuck a second time IF the doctor wants additional labs drawn.

This whole thing is getting confusing. We used to have a doctor and then a coordinator. Now we have so many doctors and one main number to use. I am not quite sure if we are to contact each doctor depending on the issue or this main number. Whatever the procedure, it was not working today. We called all numbers, emailed and got no response until we kept calling. I don't want to be "that" patient, but like I said, near "deadly" (the word they used) is a bit scarey and requires some contact. So you know I'll be asking who gets called and for what so this doesn't happen again. I'd also like to know the time frame for a call back.

Tuesday (12th) they are supposed to remove staples and dialysis port. It's time for the port. It started getting a little red/irritated yesterday and today. The following week on the 21st, Sean will see the kidney doctor, have a bone scan, have a stint removed and see a urologist. That will be a busy day! After that, if things look well, I think he'll go to his appointments without me. I might go to some a little later. Lab work from Vandi goes onto the website so we have access to it almost immediately.