Hello Again

Well, it's been a LONG time! Sean made his 4 years post transplant this past Dec. Thanks to our donor, life is busy as a normal person these days would be.

Now, we are searching for a kidney for my mother-in-law. She is nearing the point we need to begin the search to keep her from dialysis. If you or someone you know is interested in learning more about the process of donation, please contact Jbinns@tgh.org

You should know that due to privacy laws, we will never be made aware of who has called or been tested. We appreciate all the thoughts and support as we begin our search.

Thanksgiving 2011

Well as the holiday season approaches, we remember all we have to be thankful for. It is unbelievable that it'll be almost 2 years since transplant! Life went right back to normal-errands, games, school, etc. I am personally glad for the extra set of hands fully able to help out now. The kids are busy & we must divide periodically to get it all done.

We will have our first full house for Thanksgiving since 2008. Of course transplant year we didn't do it & the following year we visited someone else. We are back to normal & all the crazy it brings. Haha. We are happy to be hosting it again with family, friends & even some new guests. ;-)

We wish you all a great holiday season. When things start to get crazy remember the little things life brings that makes the season important.
Happy Holidays,
The Hoefling Family

Past the Year Mark!!!

Well Dec. 29th was the one year mark! It seems like yesterday that he had the transplant. So happy to make the year and them some.

Our donor is finally working again. Yeah!

Life is trucking right along. Busy with bowling, chess, softball & the other joys of childrens' obligations. Life is always busy, but happily attending these functions. It is great to see the kids thriving.

Looking for colleges-who knew that would come so quickly? We have another year to nail that down, but a good plan helps (at least for the planner in me).

Thanks again to all those that gave us support, encouragement, & guidance during this time in our lives! Much to be thankful for & prayers daily to those who lifted us when we needed it.

Six Month Check Up

Sean had his 6 month check up and the doctor seemed thrilled. It was funny to watch. The doctor says something like: You made your six months! Isn't that great? Sean says I guess so, yeah. Once the doctor said we should be thrilled because the bulk of the statistics for rejection are in the first year, but higher in the first six months. So, we are thrilled!

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!

Update for June

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.

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.