Monday, July 5, 2010
We knew from the beginning that we were blessed to have so many matches-three in case you didn't know. Having this information certainly helped ease some fears in the rejection arena.
We have started walking again. Food is tasting good so Sean is bulking up a little. I am being a little bit of a nag about "portion size" and walking. So we are getting back to our WW training. The portion control does two things. It keeps us at our appropriate sizes AND saves us money on food.
We have a full house again! Dayle is home from ETSU and we are sleeping better. I turn my cell off at night, but leave it charging at my bedside. However, for five weeks my phone has been on all night and I'd glance at it through the night to see if I missed anything. So, I am back to turning it off and sleeping more sound. I guess in two years we will go back to restless sleep when she goes off to college. Ha ha...
I finished painting Garett's room and we've found some wall art and things to finish it. He can search some antique shops to round out his decorations. He loves it and that is what is important. His room is red and white by the way. I was a little nervous about red, but it isn't that bad. It is a deep enough red for me to be comfortable. When I began, I thought I would only paint one wall red and the rest white. However, he has two big walls red and the other two are red and white. It looks nice.
Dayle seems to like her room and is motivated to clear more out. She worked on her closet the other day and got rid of some clothes she doesn't wear. She even did some of her dresser drawers and got rid of more than we had. Yeah!!!
We are still in the "clearing out" mode. We are downsizing all linens, furniture and such. We figure in two years or less, we will move somewhere else in Clarksville AND we don't want to move useless (or large) stuff if we can do without it.
On the agenda for the remainder of our summer is a trip to KY to visit G's best friend, a trip to MO to visit family and friends and I believe that is it!
I hope everyone enjoys their summer and doesn't get too overheated!
Wednesday, June 2, 2010
We both went to the doctor this time since I was unhappy about his white blood count falling so very low. After the April appointment and subsequent injection, blood work was done locally to see progress of the injection. At mid-month, it appeared that the injection was working as the WBC was improving.
I voiced my dissatisfaction at letting that WBC fall so low to the intern doctor we had during the transplant stay. Since I feel like we have a good relationship with him, I was quite honest about my feelings. He of course, told the doctor and we don’t think it went as well with him.
He came in quoting studies and years of experience as the reason to not worry until it is that low. "Oh well" is my thought. Our thought/belief is we “hire” the doctors, and we continue to hire doctors who listen to us or we find another. Now with that said, we aren’t there yet. He wasn’t rude like some others.
The labs showed additional improvement almost to the “normal” range. However, the doctor still doesn’t want to take him off Prednisone even though we voiced our concerns prior to putting him on it. We kind of think it’s a “don’t tell me what to do” sort of thing since we questioned him.
As we are pulling out of the parking garage, Vandi called asking if he is coming for a Reclast injection (a one year calcium infusion). I explained to the nurse that the reason he hasn’t gone is that no one will “schedule it” and Sean looses money every time he has to go to Vandi. He is out of sick time, vacation and personal time. So she did tell me that she would schedule it for our next appointment. So it is scheduled for the end of June. It seems simple, but they kept telling us “just go over after an appointment and they’ll get you in.” It is difficult enough to get in when you have an appointment. Why on Earth would we want to go without one? :-)
The following day, the nurse called and lowered Sean’s Prednisone and put him back on Celcept (he had been completely off of this one for over a month). We will see how that works on this next trip. I might actually request mid-month blood work. The book that we lovingly (no offense) call The Transplant Bible needs to have the pages changed every time they change his meds. Since I don’t track what he takes as much anymore, that thing MUST be correct. So Sean is working on that again. I explained that I need to grab that and head to an ER in an emergency. The bottles are not correct since they continue to change the doses, so I need some sort of reference. Anyway, it’s getting done.
Dayle is off at school. The school is very strict and not sure the head counselor is completely with it. He keeps calling “meetings” when they should have some study time. So she is a bit stressed about that. She would like to plan her time for studies herself and clearly that is not happening. I think she’ll get it worked out, but until then her daddy wants to fix it all for her. I think this is good for her. It’s kind of like a work situation where there are personality conflicts, but you still have to be productive to get the job done. She is learning at a young age so hopefully that will make her a stronger, better adult.
The dog seems lost without her. He follows me to her room, he’s looked in my bathroom for her and waited right at my door as if she’d magically appear from the show-some old movie flashback ;-) He’s taken her spot on the couch which is totally not allowed! We are taking her bed apart in her absence and I think that’s when he’s going to loose it. I don’t know if there is such a thing as doggie anxiety meds, but he might need some-kidding by the way!
Garett enjoyed his visit with a friend recently and watching the raccoons and a bear eat! Yes, these were real and oh my goodness so cute unless you got too close to them and they banged the railings :-)
Me, well, I’m hanging in there. I moved rooms by choice to be at the end of a hall with no adjoining room. It is nice to move and clean out things.
Ha, so I thought cleaning was fun! I've been working on Dayle's room for a week trading furniture, etc. I did put some boxes back into her room for her to sort through. I have ideas where she can hang things on the wall. However, I am letting her choose the frames which is the only reason these items aren't hung. I wanted her room completely done when she walked into the house.
Saturday, May 1, 2010
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.
Sunday, February 21, 2010
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.
Wednesday, February 10, 2010
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.
Sunday, January 31, 2010
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.
Friday, January 22, 2010
Friday, January 15, 2010
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!
PS. My baby girl turned 16 today!
Tuesday, January 5, 2010
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.
Friday, January 1, 2010
Jeremy's paperwork is done and he will see the doors long before us-and he's gone! The nurse said she has to round with meds for all THEN she will release him. We even had the same nurse. We hope that it is soon, but are happy it's today.