Living with PKD

2011-11-23T17:18:00.000-06:00

Thanksgiving 2011

2011-11-23T17:12:00.002-06:00

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!!!

2011-03-06T08:22:00.002-06:00

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

2010-07-05T08:17:00.000-05:00

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

2010-06-02T19:59:00.000-05:00

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

2010-05-01T17:39:00.001-05:00

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!

2010-02-21T19:09:00.000-06:00

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

2010-02-10T09:00:00.000-06:00

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....

2010-01-31T21:22:00.001-06:00

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

2010-01-22T21:39:00.000-06:00

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

2010-01-15T20:23:00.000-06:00

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

2010-01-05T20:09:00.000-06:00

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.

The boys are going home!!!

2010-01-01T09:49:00.001-06:00

Whoo-hoo 2010 is looking great!!!! The boys are both being released as I sit and type. Paperwork is under way. Both boys are dressed and ready. Sean is going home with most everything out-he still has the dialysis port in and won't get it out until he sees the surgeon in a few weeks. Sadly they could have taken it out today which upsets him because he wants that out now!!! We just asked the wrong doctor.

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.

News Article

2009-12-31T16:50:00.000-06:00

Well the local newspaper interviewed us on Christmas Eve and it ran today. We love getting the word out about organ donation. I figure if people talk, then they might consider it. I just don't think people are aware of what is involved. All is covered by the recipients insurance except lost wages. Anyway here is the link to the article if you are interested.
http://www.theleafchronicle.com/article/20091231/NEWS01/912310317/Kidney-offers-new-beginning-for-Clarksville-man

We wish everyone a happy, healthy and safe New Year!

Update on the boys:
Sean is doing well. He looks great but guess I am partial! He's moving around and due out tomorrow if all goes well. He will go home with his dialysis port and drainage bag in place, but both "should" come out on his next appointment.

Jeremy is struggling a bit. He is moving and has been walking a little. He is trying to deal with the pain. His color is back and he looks much better today than yesterday, so I am hopeful that he gets to "feeling better" soon. It is difficult to see our ANGEL in hurting!

Whooooooo-Hooooo

2009-12-29T14:14:00.000-06:00

Holy cow-it's really happened! Transplant day!

Lots and lots of waiting.....we had to be there with the donor at 5:30 am. Jeremy's surgery began at 7:30 am and Sean's at 9:30 am. They took Jeremy back around 6 to prep. They didn't take Sean until 8 am.

The update board said Jeremy's procedure began at 8:14 am. Sean's message said they started at 10:04 am. Jeremy's parents got a doctor visit around 12:30pm. During that time they told them that the kidney was in Sean and plumping up! That seemed to be good news. I finally heard from our doctor at 1:00 pm. He said that surgery went well, Sean did well and it looks good. They will watch him for about two hours before sending him to his floor.

We haven't seen him yet, but hope to in an hour or so. I am curious to see if the kidney is working. I want to see Jeremy too. What an angel!! I will update this one later tonight after I see them both.

Keep praying-our donor is such a special person! His family is wonderfully supportive.

Happy New Year!!!

I went to see him this evening when he got settled into his room. He looks great-his color is good. His pain is being managed with oral meds which is different from the last time. They used staples again instead of glue. Be got the "binder" with all the transplant information. I read through it tonight and have a few questions for the doctors already.

Three Days and Counting....

2009-12-26T13:53:00.000-06:00

We had a great Christmas. On Christmas eve, a newspaper reporter came and spent some time with us interviewing Jeremy and Sean about their friendship and the transplant. She is a fabulous lady and it was good to put a face with a name after all these years! Can't wait to see the piece.

At the last minute-like 10:00 pm we decided to go to midnight mass because the Christmas day mass wasn't working with our traditional schedule. Sean and the kids went to rest for an hour before we had to leave for church. It was a good mass and it left Christmas wide open for family time which is just what we like.

We had our breakfast, opened presents and just hung out for most of the day. We visited a friend and a couple friends came here to visit us. Sean cooked dinner-yummy! Of course he overdid it a bit and didn't sleep well. But all had a great time eating too much and visiting. Our donor left for his hotel in Nashville for some much deserved peace and quiet. Two days with us and I'm sure he was ready for quiet!

Today I went to work and got set up for my sub. It was so peaceful and it is all done (or at least I hope it is). Sean went to dialysis. The kids are playing their new game. Now...when to take down the tree......

Dialysis went well except the people there are complacent at best on some days. Today they are overcrowded due to the holiday and so much goes by the waste side. Sean has a disc thing that we drive all the way to Nashville because it is so important. Well today he told the nurse or tech that it fell off and she said she'd look at it. After 3.5 hours no one had come to look at it, so he asked someone else. They said Vandi is the only place that does it and it isn't that big of a deal. To top it off, they don't have any because they are changing out their stock. (They also didn't have something else he needed today too.) What kind of dialysis center runs out of essential supplies? Needless to say, he is quite upset. We are THREE days from transplant-now is not the time to get an infection!

So needless to say, he will ask the doctor on Monday about this very important piece that requires a drive to Nashville three times a week. I didn't think this little thing was it, but the nurse or tech said it was, so.....it's worth a mention to the doctor. I thought the all important part was what they packed the tube with as he leaves, but who knows?...I still think it's terribly irresponsible to run out of supplies to keep these things covered.

Jeremy is in Nashville and we've gotten to spend much time with him. His family will arrive tomorrow. I look forward to meeting his parents. I've heard of cases where a potential donor's family talks them out of it. So I am forever thankful that our donor's family is supportive of his choice to donate. Jeremy was a little shocked to hear his kidney may only last for 20 years. He was thinking it would last Sean's lifetime. Sean does intend to take care of himself and that precious kidney to help it last longer than 20 years!

I will post as soon as I can after transplant to let everyone know how it is going. I never did find wireless internet in the hospital, so it'll be late when I do. I'll have to wait until I get to the hotel to post.

Have a great rest of the holiday season!

Whirlwind

2009-12-22T19:19:00.000-06:00

Well that word seems to sum up the last couple of days. We've been in Nashville for days......Sean did dialysis on Monday and when getting ready to get off the machine at the standard prescribed three hours, the doctor decided he should have been getting four all along. So....why not start now. After that, we tried to kill some time before our donor's flight arrived. That would have been easier IF Sean felt better. That extra hour did him in and his back was sore too, bummer!

Got the donor and got him settled-sort of-at the hotel. We felt bad that we left him high and dry for dinner, but pointed out some close places to eat dinner. We headed home after a long day, ready for bed.

Today we went to Nashville for pre-op testing. It was an all day thing and am tired! We did eat at the Pancake Pantry which was awesome and I am still full like six hours later. The doctor said that the donor is such a close match that he can't believe that he isn't family! I guess your prayers are working so thank you!!!

Our donor got a bit of attention while sitting in the waiting room today. One lady kept saying "In twelve years coming here, I don't think we've ever met a donor!" She was so taken with him. Her husband got a cadaver kidney twelve years ago. They knew nothing but the guy's first name and that he died in a motorcycle accident. We learned that the donor's family has a say in the amount of contact/information given with the organ. This particular family only knew a name and that he was into cars and bikes. I've know others that have contact with the family who was blessed to get an organ. So this lady told him he is an angel and kept on gushing over him and rightly so. He is our angel-there is not doubt!

Seven days left to the big day. Keep praying for us and the donor's family. Some wonderful school here sent him a card to thank him which I thought was a profound idea. I've said it before and will again....I am amazed, blessed and humbled by the thoughtfulness and kindness of people that we know and many that we don't. Our world moves so fast and so do we with phones attached to our heads and computers on our laps, that it is a blessing to see people's hearts!

Love to all and we wish you all a happy holiday season. I did try to do cards, but most are still sitting on my counter. Please know that if yours didn't come, that is where it is. I might get them out in the new year-lol. Have a blessed and safe holiday season!!

Medicare

2009-12-17T23:19:00.000-06:00

Sean spent many hours trying to get this done since no one has bothered to help with this on the hospital/dialysis end. It sounds like he may not qualify which doesn't make sense. We were told by the hospital social worker in the transplant dept. that in end stage renal failure, they qualify. Well today he was told that it doesn't matter that he has no kidneys and that he likely won't qualify until he has the transplant. It seems odd, but you can only do what you can. They can't finish processing it b/c the dialysis center has NOT gotten the doctors signature on it since we completed it early this month! So it leaves us with maybe maybe not. The problem is if someone messes this up and he needs to qualify now to get benefits post transplant, it'll mess us up. We only have 12 days until transplant. Time is important. We'll keep trucking away at it.

I got this email today and thought I'd post. Everyone has been so supportive of us and would love to help someone else. Prayer is powerful and free. Happy Holidays all!

Prayer request for Gary and Cindy Hogman by way of Faith PresbyterianChurch, Memphis , Tennessee .Gary is serving in Iraq while his young wife is fighting cancer here. See his Request below.From: Bobby S. Briggs, MSgt, USAF823 ESFS/SFOCFlight SergeantBAGHDAD AB, IRAQMy name is Gary Hogman. Some of you receiving this know me, some do not. Mywife, Cindy, is 32 years old and has just been diagnosed with stage 4cervical cancer.Her chances for survival are very slim. She was pregnant with our secondchild and had miscarried recently at 3 Months; and now we know why. This isa request for you to forward this e-mail to everyone you know asking forprayer. The more people that pray for her to be healed, the better. Pray andforward. It only takes a second to hit 'forward.' Please do it and don't delete this. Your prayer can, and perhaps will, saveher life. Please pray and ask everyone you know to pray for the HEALING ofCINDY HOGMAN And the removal of all cancer from her body, so she may enjoyall that life has to offer, and to continue to be the wonderful mother toour 5-year-old son Michael. The power of Prayer is unsurpassed. I want the whole world to have her intheir prayers the next few weeks. God will hear our cry. Please do not beoffended by my plea. This is only a request for your help. Thank you fromthe bottom of myheart for reading this and helping with our request for healing! No wordscan express the power we have when we each do a little to come together. Regards, Cindy's husband - GaryThank you, and please send it to the far reaches of our world!

Holiday Fun

2009-12-12T23:07:00.000-06:00

Sean has been trying to get involved with the holidays. I've been trying to keep him away from people, but Garett had a sore throat on Sunday last week. At that point, I figured.....what the heck. So we went to a work party for a little bit last night and a neighborhood party tonight. Both were fun, but he was definately worse for the wear tonight. It is good that we live close so he could come back and rest.

The schedule is crazy this time of year. Dayle has exams, youth leader dinner, bowling party, a chorus program, driving class and lessons. Garett has a Boy Scout potluck and bowling party. That is for this week.

Sean wanted to go back to work b/c he is tired of these four walls. However, after last night and tonight, I don't see it happening. He can make it about an hour or so before he needs to sit down. Then he's tired. I hope he makes the best choice for him and his body.

Good Day

2009-12-10T17:53:00.000-06:00

Well today, we went to visit the surgeon for my purpose to get clearance for the transplant. We did get a bit more than that today. Sean is able to drive-not all the way to dialysis-but enjoyed a little spin around Clarksville!

He also got a very cautious return to work slip. The doctor looked at me and told him that if he gets tired he needs to go home. He is still not to lift, so a friend will have to carry his laptop back from his car to the building. His boss is allowing him work short days on M, W, F due to dialysis. Then whole days on T & Th. Funny enough we are talking about a total of 6 days, but I'm sure the same four walls are making him stir crazy.

When going to turn in said work slip, we had nice visits with friends. A good dose of love and support is always good for the soul! During this trip, we did hear about a young person having failing kidneys within our own CMCSS family. This saddens me and I hope that the family will one day be able to embrace the love and support we have been so blessed with during this adventure.

I posted some new-old to me-links that I was sent in the beginning of this. Believe it or not, someone at the very beginning of this suggested that I keep all those who inquired informed. For those that don't know, this group is a big one as I posted on campbellyardsales, craigslist and Facebook looking for a donor. I personally emailed several this evening and will continue until I finally finish. It is a great time of year to say hello to people. (Side note: We've not yet done our Christmas cards-lol.)

Thanks again for all the love and support. Happy holidays to all this season. May you be bless with many little joys!

Frustrating

2009-12-03T20:37:00.000-06:00

Okay, so we all know that when you take out kidneys, you go into failure.....so why the heck can't people get "approval" for the necessary meds, transplant, blood donation, medicare and such. I asked and asked and asked and was always told "it's not time yet."

The first omg was when the Red Cross lady called the day prior to the deadline for people to donate. Because clearly it needed to be prepared earlier as I kept asking. With little time, I was the only one able to donate. (The lady told Sean that the St. Louis people had NO time to donate and get it here for the surgery.)

Today was another of those days.....I was told by Mary Schaefer the social worker at Vandi that the application process would be done in the hospital. I asked several times and they said that is done at the dialysis center. When we asked the dialysis center the Wed. before Thanksgiving the lady doing the intake paperwork said "this is the form." Well of course it wasn't the form! We kept asking. So today a nice lady got on the phone to discuss it with me. She is checking to see about getting it done and will call me back. The issue I have with this is that we are on such a limited time, why couldn't they do it during pre-op or at the hospital, like I asked. We have a maximum that insurance will pay and it would be great to take some load off of that total. With the current bills posting, it looks like we might make that total prior to transplant!

Also, today, the Vandi social worker, Mary called to say she needs to meet with us again b/c it's been over 7 months since she met with us. Funny enough....she has done little for us and have no idea what her purpose is. So....she asked Sean three questions on the phone and we are done! Good!!!

A call from our insurance came in today about "following Sean's case." It's a catch 22 she said, b/c in order to precertify him for the transplant, this has to be approved by us. So yes I agreed. I answered some questions about his history. She said she is finishing the report and will send me a copy of it. This too seems like it could have been done prior to now. (The paperwork was not submitted to insurance until this past Monday from the case worker-Margo.) Until pre-approval saying it's medically necessary, you just think oh my. Sean's kidneys were failing, but still working all be it he was in discomfort. I would rest easier if this was done prior to removing the somewhat functioning kidneys. A lifetime of dialysis was not in the plans.

The dialysis center today wouldn't let me come back to set him up today. This pissed me off because this past Saturday the front office worker had a child with her that was not only in the office but moving around the center in the back for much of the time we were there! So I have to ask myself how that is possible. Then they let another man back with his wife. What is the deal? What is good for one is good for all.

All in all today the general mood was irritation! I did find nice people in the midst of it all, but it is still frustrating. I don't think that these people understand the emotional load this takes and how much easier planning ahead would be for the families in the middle of all of this. I had time and energy to handle this crap prior to running every aspect of the house. Now I have no time or energy to deal with this stuff.

Big Ole Kidneys

2009-12-02T19:42:00.001-06:00

We finally got the weight of the kidneys. A regular kidney is less than a pound (or so I'm told). One kidney was 11.14 lbs and the other 11.26 lbs for a total of over 22 lbs! How amazing.

Staples come out tomorrow then off to dialysis. After this Saturday, he will switch to the Monday, Wednesday, Friday rotation since that is the rotation his kidney doctor-who we love-works/oversees.

Catchin up

2009-12-01T17:59:00.000-06:00

I went to work yesterday and it was good to have some "routine" back in my life. I felt bad much of the day for leaving him, but he had a good day and was in a good mood. So I figured it was good for all!

Well today was dialysis and his dad took him. I guess his blood pressure got so low at dialysis that he did or nearly passed out! I don't know if I should rearrange my schedule and take him myself or not. I have the days, but it sucks b/c I have to take the whole day off. I can only take a half or whole day and the half day time doesn't work with his schedule. They really don't like us back there for long, so it's likely I couldn't do anything anyway.....It's all just a bit scarey.

Of course, when you consider his entry weight compared with his exit weight, it becomes a dah. They've been keeping him at 94.8 kg. He began at 96 kg and they took him to 92kg which is not what he usually does. I wish I knew how they determined that they were taking more out than usual. I will be going on Thurs. so you know I'll ask how that changed. He didn't like the tech today, so we hope he doesn't get her again. I will say something-he said she doesn't pay attention. For what this is costing, I will say something about that too.

Four weeks from today is the transplant. It does depend on two things-one is the obvious...that he is well enough and two which is funny....if insurance deems it medically necessary. I would hope that it is medically necessary!!! He has no stupid kidneys. So.....we are hoping for approval ;-) The goal of this was short and sweet.

He is getting around fairly well, but quite slowly. His energy level is a bit down. Ten minutes or so on his feet and he needs to rest. Honestly, with 57 or so staples and all they did inside, I think he's doing well!

The kids are managing this all well. Garett's teacher came and told me today that if she didn't know, she wouldn't be able to tell. That to me is a wonderful thing. We are trying to make their life as normal as possible, but gave everyone involved with them a heads up about what is going on here.

Dayle is taking drivers education more for an insurance discount than anything else. The teacher today-after her first lesson-said if it were up to him, she's ready for her license! Good to know, but she will complete this class and the other 4 hours of driving ;-) She does well. She drove to church and back in the stick shift this past Sunday. I was very proud of her and how she was able to manage shifting and the wheel. She's not really been on main roads with the stick. Yeah, baby!!!

Some things I think I forgot to mention:
We came home the Tues. before Thanksgiving. My mom had cleaned the house, ironed the sheets and made my bed. She gratiously offered to leave and I was so very tired that I accepted! I told her I was trying to wait until after Thanksgiving, but she said she didn't mind, so I accepted. I like my routine so this was a great thing. We spent the next couple of days by ourself getting some much needed rest!

Thanksgiving was from Cracker Barrel. It was okay-I do believe it'll be the only year we order in. I want my big Thanksgiving with all the craziness it entails. We quite enjoy the company and then the quiet at Christmas.

We're Home!

2009-11-24T16:33:00.000-06:00

Oh boy, is it ever nice to be home and sit in your own furniture! We've had people call thinking they were coming to Nashville, so I wanted to post and say we are home. Come on by. We will probably stop visiting hours by 7:30 so we can figure out showering-all kinds of new parts in the shower.

I am adding some things that I was waaayyy too tired to post on here last night. My mom and step dad did a wonderful job of cleaning my house from top to bottom. I knew mom would clean, but didn't know she'd get the ladder and dust the ceiling fans (I have an extendable duster for that.), iron my sheets and things I couldn't imagine.

I was a good night of sleep in our own bed. I now feel like I could pull off a small Thanksgiving meal-ham and potatoes. Yesterday I didn't want to step foot into the kitchen. My how some sleep can change the attitude.

Thanks to visitors last night that finished putting the shower seat together for us and brought the kids a pizza. My mother in law made Sean a dinner the kids wouldn't eat and I had no thoughts on dinner either. Sometimes it's the little things as well as an awake mind to help.

Thanks to all and have a Happy Thanksgiving!

Monday, Nov. 23rd

2009-11-23T15:35:00.001-06:00

Aside from the days blending together, things are going well. I forget what was on what day and time drags except when it comes to sleeping. I close my eyes and the door opens or he needs something. It never fails.

He is on a liquid diet and just heard they changed him to solids with low sodium. I think they are working on kicking him out tomorrow after dialysis. The chart says he goes home tomorrow, I hope they do dialysis prior to leaving here tomorrow. With Thanksgiving Thursday, he will need to come back out for it on Wed. then do his Saturday. I think that will be the true test of how he feels-having to wait several days for dialysis. He is on the Tues., Thurs., Sat. noon schedule.

He is tired, but feeling fairly well. He is still on the pain pump, but using it less. They did add a pain pill today I guess to get him ready for discharge. The ride home will prove to be challenging I'm sure. I'll be the longest that he's had to sit that straight up. I know it'll get better each day. We will have to go see a doctor to remove staples and stitches for port. I was kind of hoping they'd remove the stitches while at the dialysis center or prior to leaving the hospital. I think they have to be in for 10 days though.

We have some more visitors coming out this evening. It is nice that people are driving this far after a full day of work. They are very sweet and stopped by my house to pick some things up for me. I sent too much stuff home with the kids. Guess I thought I'd wear the same shirt for a few days :-)

I told mom that she would need to leave Fri. - Sun. sometime. I want some normal and it is difficult with people there. It is nice they were able to come and handle some things.

His parents went back to Clarksville today and will return tomorrow to pick him up. Their car sits higher and will likely be more comfortable. I might rent a truck to bring him to dialysis. I'd like to just get a new one, but don't want the payment-ugg. I hate that he's not riding home with me, but guess I can speed ahead and make sure things are good. All entrances to my house have steps so.....that will be a challenge tomorrow or whenever for that matter. I might be able to fix that relatively quickly. I learned from my little brother how to do a ramp-I think.

The kids went to school today. Dayle has several things due tomorrow and I told her to ask for an extention. I don't know that she will, but anything done over the weekend probably isn't her best. She will have to decide herself if she'll ask. I know they will understand as I emailed them all the information several weeks ago.

Garett's teacher is helping too. I've given her heads up about his mood when possible and she's giving a dose of love with some tough love if necessary. I want them both to know that this is no excuse to slack on their job! I hope they understand that.

Well I'm off for now. Honestly, I hope we sleep all of Thanksgiving. I think I need it to catch up
;-)

Updates

2009-11-22T14:26:00.000-06:00

Nov. 21^st

Sean got a short/introductory dialysis today. He looked fabulous a few hours after it and we up and walking. He wanted to get himself out of bed and walk so he did. I am surprised at how much he is able to do after such a big surgery. I am also very proud of how well he is handling everything and getting up even though it causes him pain. I know in the end it will be best for him, but am not quite sure I could be that mobile. The kids are good motivators though.

Our nurse, Mary, was wonderful on Friday night. She was back tonight, so I went to get the kids and spent a little time with them. (I think I actually slept more of it, but the goal was to see them.) Garett said he finished the movie we were watching and moved to the pull out bed because Dayle and I were too hot for him. He is so warm natured, he is hot in the winter when the heat is on. So very much like his daddy.

Nov. 22^nd

Today they pulled off the dressing from surgery so now the staples are visible. He had a rough night frankly just laying in that bed getting stiff is the biggest issue. Of course there is pain, but they are managing it fairly well. Sitting watching a clock is tiring. Funny how that works.

The doctors are now allowing ice chips and little water. However, that causes gas in the form of burps right now. Which in turn causes pain on the belly where he was cut. The nasuea has probably been the worst and he doesn't understand how with no food or water for several days, it could happen. Due to this, he hasn't walked as much today. I think before noon, he walked 3 times. However, he hasn't made it out since then. I'm sure we will go again tonight.

The doctor said today that he won't come home tomorrow. His intestines aren't waking up yet and so he can't go home until they do. It is subject to a daily check, but right now, he is thinking Tues. or Wed. They are working on dialysis schedule for his time here. He will get a longer does of it tomorrow.

He had visitors from work which was quite a nice change of pace. They couldn't stay too long b/c he began falling asleep. He had no trouble showing off those staples. They are teasing about him coming to work and having someone wheel him around. I'm sure given a few days, Sean would love nothing more than a routine day.

Yeah!

2009-11-20T23:00:00.001-06:00

Wow! It was a very scarey day and I did well until my baby girl lost it. She's been so very mature and helpful with all of this and today it was rough saying goodbye before going into surgery.

The surgeon came in and seemed like he could go either way on the cut. Sean told him his option and the doctor determined he could indeed do it that way. This incision is supposed to be easier to heal/recover which is good with only 5.5 weeks until transplant.

The surgery itself was not at all long. They began surgery at 8:52 and were closing at 10:47am. However, he was in "recovery" until after 2pm. Then finally in holding until around 4pm-maybe a little later. They moved him to a room and told us someone would come get us when they were ready. We were waiting and had issues since renal floor is on the "tramau" floor too. They don't allow children in this area to include the waiting rooms. So they left us in a hallway instead. I finally checked with the nurse and she said we could come back. All blew kisses b/c he was sleeping.

Sean had lots of visitors "waiting" with us. Ms. Tammy and Ms. Cindy came with magazines, movies, a DVD player snacks and goodness only knows what else is in that bag-lol. Of course, his parents, my parents and the kids. I think the kids being there is a good distaction.

Much of this seems to be more than Garett can comprehend. I'm sure he won't remember it-I hope not anyway-but Garett heard my mother in law say she passed it to Sean. So Garett said to me, that means dad might have passed it to me. He also doesn't seem to understand that he couldn't just come home with us today. He has been told we'd be here past this weekend. We have arrangements for my mom and step dad to take the kids back to Clarksville to do the last two days of school prior to Thanksgiving.

I am at the hotel now b/c the nurse on duty, Mary, is very efficient. They used his brand new port to monitor something today-without permission-and left tubes attached. This nurse found it and called for orders to remove and flush the tube. Sadly, it was on too tight, but she flushed and packed it (with antibiotic I believe). She is contacting dialysis tomorrow to have it removed.

Well I'm off to bed or it was pointless for me to return here.

PS. My brother in law got a kidney donor!!! Whoo-hoo.

Starting to Feel the Stress

2009-11-19T05:42:00.000-06:00

The stress is getting real. I see it in the kids and it breaks my heart! One won't discuss it or break because she won't add that to our load. The other can't comprehend the whole thing. He's told many times what will happen and how it will work, but asks again. Dayle did that when she was little and the information was too much. He is doing that now. I do know that it's normal, but you want the best for your kids and this seems too much.

All in all working until the day we "need" to be in Nashville was a good idea. I wasn't feeling that on Tuesday, but I think it ended up being the best bet.

We came home from work to find my house cleaned up, a new shower head installed (my brother gave me a part number to make my life easier), jello in the fridge and a shower seat purchased and ready to go. What a great surprise. I asked for the jello, but only discussed what needed to be done in the next week prior to or shortly after Sean's return home and walla! Thanks to my in laws and kids!!!!

Kind friends all around. Words cannot express how amazed we are at the outpouring of love from friends, oworkers and of course, family. All have sent little gifts and/or offered services, home and cell numbers for contact. We continue to be overwhelmed by the kindness. Sometimes things are mentioned and it ironically shows up like a zebra stripped snuggie-lol.

We are off to Nashville to have the dialysis port put in today. We are just staying out there instead traveling back. The kids and rest of the family is expected out between 2-4. Surgery is tomorrow at 8am and I'll try to post updates as I'm able.

Details, Details

2009-11-05T17:27:00.000-06:00

Oh my goodness....the details! The kids, the dog, the parents, sub plans, hospital crap...what to do with them all???

We are still nailing it down. I have made arrangements to stay in Nashville for 5 nights thus far. Mom is coming in to help with the kids. Kids are missing a day of school for the surgery. The dog will be handled by the neighbor until Mom comes back with the kids with Saturday night or Sunday.

I have an email into our donor coordinator to determine if dialysis needs preapproval with insurance. Don't know if PKD foundation is interested in the kidneys, but if they are they need to contact me with how to do it.

I'm working on sub plans. Hubby made arrangements with a tech guy to come set my sub up with a computer so she can use my model classroom to teach-whoo-hoo. I have the two day week before Thanksgiving done and almost all sticky tabbed. :-) Now to nail down the plans for the week on Nov. 16th.

The knot in my neck says it's getting close!

What else am I forgetting???

Afraid to Say It

2009-10-21T20:36:00.000-05:00

Well, well.....it appears there is a "plan" which I use loosely for fear another shoe (if there is one) will drop and God forbid something else will change.

So here's the "plan":
Nov. 20th removal with new Urologist-Ideally removing both kidneys. If not, then the left.
Dec. 20th removal of right kidney if not successful on Nov. 20th (HOLY COW-it would appear that this date is incorrect as it is a Sunday! Whenever they pull their heads out-I will update with the correct date!!!)
Dec. 29th transplant ONLY if the Nov. 20th goes off with both removed.
? transplant if two surgeries are needed

We go in on Nov. 16th to meet the new Urologist (4 days prior to surgery), do the pre-op work and meet with the "sleep doc"-no I still don't know how to spell that official word.

Sean's parents are going with us so we have some extra ears. Trying to prevent what happened this week. Although I know that I was diligent in my notes and crystal clear as to the dates the doctor said he was available. You know me asking point blank questions, so ....maybe they misunderstood direct questioning....who the hell knows.

Anyway, we are hopeful that this goes off without a hitch-this new "plan."

Bump in the Road

2009-10-16T13:11:00.000-05:00

I guess without a bump in the road you can't enjoy the scenary!

Today, we got some information that took us totally by surprise. With so many doctors managing your care there is bound to be some issues. However, removing the NOT painful kidney-really?!

Sean and I were prepared for both to be removed and have accepted that only one might be. However, for 15 months, the LEFT kidney was to be removed based on that is the one causing the pain. So today when the doctor responded to an email and stated that the RIGHT one will be removed.....we were shocked to say the least. Since we can't get anyone on the phone, we drafted a letter and sent it to ALL of our doctors so all are on the same page and might work to make a decision. After all, the surgery is in 3 weeks!

Hopefully, they get some quick answers to us. This is not the time to be changing things. Of course, better to know now than after they removed the right one (the wrong one in my opinion). Either way....don't feel like waiting for answers. We have little time to switch doctors and get things under way, but it is under consideration at this point.

Rotary Club

2009-10-15T21:13:00.000-05:00

Today, we visited the Rotary Club for their organ donation speaker. A friend's husband is a member of the Rotary Club and saw our piece on the news. He asked if we knew anyone that could speak, so I had my mother in law make a call for me.

It was informative even for me. I learned today that only certain deceased people (brain dead) can be "organ" donors. However, you can be a tissue donor in most cases. I also learned that even though I signed my drivers license as an organ donor I was NOT done. Apparently you have to "register" on line too. So needless to say, I got that taken care of today.

Did anyone know that you can live with one lung? Not I. You can donate the following while living: kidney, lung and part of your liver. Who knew? I had heard about the kidney (of course) and the liver. However, I've never heard of the lung.

Quite informative. I hope that people choose to sign the organ donation card and/or register with your state. Even minors can do this and they recommend that you tell your family about it. They still like the consent of the family when looking into this option. (I asked about the minors b/c my daughter checked her box and it does not appear on her "permit." I was told that if it does not show when she gets her license, to let her know.)

The speaker said something that I thought when I was young. Organ donation is something you don't really consider at a young age. I am happy that I've been enlightened and hope to get information to others so they too might get information on organ donation.

Our online registration is http://www.tndonorregistry.org/
I am sure there is something in every state. Even if you are in a different state, you can go to this site and get some staggering information/numbers on donors needed vs. donors.

What do you say?

2009-10-03T19:48:00.001-05:00

I just got an email from my assistant principal letting me know that meals will be supplied for us during the kidney removal. She also asked what else we needed and that she didn't want me to say nothing. I'm not sure what we need. Frankly, I can't picture what this is going to look like myself. I'm still trying to determine if I want someone to "sit" with me at the hospital or if I'm supposed to just be a big girl and do it myself. It is a LONG surgery-like 8 hours, so how do you ask someone to sit with you? I don't know when and how the kids will join us and if they will go to school. I can't imagine them sitting at the hospital for 8 hours, but worry they won't be able to focus at school either. I'll likely send them to school though and have them brought to me. Any thoughts on any of it are appreciated.

On the News

2009-09-21T15:14:00.000-05:00

Well today we got interviewed for a piece on the news to raise awareness for organ donation. News 4 came to the imagine place where Sean had a CT scan today. Then with us to visit the dialysis center since we were there getting information.

While switching the microphone from Sean to me a gentleman came and said we are in his prayers. He told us of a relative's success story. She was in the parking garage of Vandi after a routine exam when she got a call telling her to come back up they found a donor for her. They did emergency surgery to transplant her. It was very touching. I did good at "being strong" until this point. It is nice that people share encouraging news. As I've said before the kindness of strangers has been the most wonderful part of this process. We are truely bless!

Keep my brother in law in your prayers. We hope we find a donor for him soon! His baby will be four tomorrow and he'll miss this one in the hospital! We don't want him to miss any more birthdays.

Bruce Jr

2009-09-15T06:33:00.000-05:00

Well yesterday Bruce, Sean's brother, had to be taken from work by ambulance to the hospital. He was having seizures and they couldn't stop them, so they had to medicate him into a coma. He is in ICU and has had many tests run. Luckily-I guess-the tests so far are coming up negative. However, they still don't know what is causing this and thus far has been unsuccessful at pulling him out of the coma. Each time they try, he begins shaking or seizing again. We are told that they don't believe it is due to imbalances in body or a result of kidney issues.

Our sister-in-law and in-laws are doing well handling it. The kids (as of 7pm) are unaware. Amy and her parents were able to get the boys to their sports and such without question. Hopefully they find out something today, so Amy can figure out how to handle breaking any news to the kids. We ask your prayers for the whole family. Those babies can't possibly understand all that is going on. How can they when as adults we don't.

I will update and or clarify this as I learn more. I know Amy won't be able to update hers during this time.

Update 9/19:
Things are moving slowly getting the tubes removed. Beck is asking why dad hasn't called which I'm sure is heartbreaking. All are in good spirits-well as good as can be expected which is amazing since he's been in the hospital since Monday.

The local news station did a story last June, so Sean contacted them to see if they could do an update. They did last night on the 5pm news. They also got a contact for us in Nashville to try and do a story here to help find a donor for him. We are due to speak to them on Monday. Here is the link to the update they aired:
http://www.nbc-2.com/Global/story.asp?S=11157419

Metal Taste

2009-09-12T10:03:00.000-05:00

I am curious to see if there is any solution to metal taste. I can find that it is a result of kidney failure (that seems like a "dah" moment), but is there anything that can be done about it?

We are seeing the doctor doing the removal on the 21st and will ask then, but thought I'd throw it out there. Amy seems to have a nurse following her, so maybe I can get some answers.

New Date for Nephrologist Appt.

2009-09-02T21:11:00.001-05:00

We will be going to the doctor on Sept. 21st instead of the 28th. They will schedule the removal on this date. From what we've learned, the removal will happen in October. We were thinking of putting it off as long as possible, but we know that pushing it to the Oct. 26th is too close to transplant.

So the grandparents, I guess, will be in charge of Halloween with the kids ;-) They have a bowling party, Boy Scout party and of course trick or treating.

NFT Donation Site

2009-09-02T06:22:00.000-05:00

http://www.transplants.org/Patients2.php?search_type=lastname&search_value=Hoefling

Here is the link to the NFT which shows both Bruce and Sean's story along with information on donation. Although the financial issue is difficult to comprehend, I am told this is a necessary evil. I more post this because our friends and family are asking about Sean's brother. He has no potential donor, but feels better after the removal of both of his kidneys.

Thanks to all who pray and lift us up. It seems that we get what we need when we need it. Sean has met some wonderful people in his job that may not be aware, but their words have come at just the right time! Not only that, but they reinforce what I say that he "might" be too stubborn to hear. LOL

My work has been more than supportive too and the same goes here-people seem to give you what you need when you need it!

We are both so very grateful to all the wonderful "little angels" that have found us! You are all inspirational and I hope to be an angel to someone someday.

Transplant Date OMG

2009-08-31T18:01:00.000-05:00

Well we have a transplant date of Dec. 29, 2009! Wow-this is really happening. Our friend and my husband will need to go for pre-op work on the 22nd. So I guess we'll have to treat our donor VERY well while he's here for the week. Actually, we haven't talked to him to see if he'll be staying or going to FL to visit family. He is certainly welcome here anytime, but don't know his plans yet. He may not either. This has all come about since Friday afternoon.

We won't get the date for removal until our appointment on Sept. 28th-my son's birthday which sucks a bit. We are told though that it might be as soon as a week or two after that appointment. I hate to say it, but that is too soon! We thought it was going to be 6-8 wks prior to the donation. So I don't know how early Oct. is going to work. Three trips to Nashville a week for dialysis makes a difference in how soon we'd like the removal to happen. We will push for later in Oct. or early Nov. for that reason alone. It's also a bit stressful to think of the lack of income for an extra month. I guess a wing and a prayer might be the motto for this time.

Next Visit

2009-08-29T15:19:00.000-05:00

We visited the surgeon on Tues. The decision has been made to remove both kidneys as the function has fallen to 14 GFR-a 5 point drop in two months! Frankly the appointment was quite an awakening of sorts. It was difficult to watch my husband nearly jump off the table in pain when the doctor was feeling the kidneys (left in particular).

We are happy about it in hopes that there will be less trouble with infection after donation.

We've gotten the information for the fund raising and passed it along to our bowling alley who is helping during Saturday leagues in which our kids bowl. Today they raised $156 on pocket change! We love the Pinnacle!

We go on Sept. 28th to meet the urologist who will do the kidney removal. We hope to have the donors dates so we can schedule these.

Oops-we think he's already scheduled for the removal on October 26th! We looked at the packet they sent and there is a date on there for Oct. 26th. Sean is calling tomorrow to confirm this with our coordinator. I will post when we find out definately. This date works IF our donor is willing to spend the new year in the hospital. If not, we can push it back to the first week in Nov. Since we will have to travel 3-4 times a week to Vanderbilt for dialysis it will make a difference.

Whoo-hoo

2009-08-24T18:04:00.000-05:00

We got word today that our donor was approved by the panel. So tomorrow, it's off to the surgeon to set some dates. So I imagine things will seem to fly by while we tidy up loose ends and start getting helpers their assignment-lol. Our family is great! Mom is already asking what to do and where to stay things that I haven't figured out yet.

Qualifying the Donor

2009-08-21T17:35:00.000-05:00

Well we found out today that our donor is set and ready to be presented to the "team" that determines if he's a good match. We have our appointment on Tues., so we hope to get dates then if all comes out okay. We hope and pray for no surprises! We'll keep you posted.

Waiting

2009-08-20T21:21:00.001-05:00

Our donor had his last test LAST Friday and was due to talk to the donor coordinator this past Monday. (He was told at the conclusion of the test that his heart looks good.) We were kind of hoping to get a call at some point this week informing us of dates for nephrectomy and transplant. However, it is late Thursday night and no such call.

Sean is due to go in for retesting to make sure he's healty-his expired as they are only good for a year. So that appointment is on the 25th. On this day he has to have "some tests" redone although I don't know which ones. He also has to meet with the surgeon again. At this point, I am hopeful to get dates. October is right around the corner, so dates are helpful to plan life. I worry I'll be disappointed and no dates will be discussed. Oh well there's always the appointment the following week since his doctors work on different days.

We are planning things just as normally as you would. It does seem a bit weird to know that it might need to change. They are all on the calendar, but my mind knows some things will have to give. That's why dates are good!

Just can't wait for the further information like what happens next. I imagine it'll be like a whirl wind of things at once.

Donor Testing

2009-08-07T20:08:00.000-05:00

We had our donor come for testing in July. We were excited about the tests getting done, but still reserved about it. We ran into a few obsticles. First a 24 hour urine test and a 3 hour glucose test were not done prior to arrival as it was supposed to be. It seems that this might have been an important piece of information prior to spending nearly $100K on testing.

Then to my surprise, our donor was told during the "whole day visit" that he needed a cardio test/scan of some sort. Instead he went back to LA and now it is complicated! First, he had to go to his regular doctor to get a referral for a cardiologist. The cardiologist has to order the test. (The hospital won't take Vanerbilts orders for it.) All of this because someone failed to mention that he might want to call the donor coordinator to set it up immediately. They have been faboulous about doing these things in a timely manner. All of which is costing us (via insurance) money.

Although our donor says he'll still get the test done when his schedule allows, he did offer us a psychic healer as an option. We do believe in miracles, prayer and devine intervention, but "healing" is not something we are willing to accept. So here we wait.....

We do have two other potential donors. However, it is a husband and wife. The wife is pregnant and expecting to be on bed rest in the next few weeks. So the question comes, do we wait or move on? How do you decide? And what about all the money already spent? Ugh!

On the positive note, Sean got told the other day that she "can't believe he's really that sick" because he is still so active. I am blessed that he hasn't given up and he tries to lead a normal life. We tell the kids he's sick sometimes if he's dragging, but for the most part he trucks right along without notice to his pain. This is the way we want it. (They do know that he needs a transplant, but we are trying to keep the details of it quiet so their school doesn't suffer.)

Pre-donor testing

2009-07-03T21:36:00.000-05:00

This is a first for us, but thought it might be a wonderful way to share information and possibly vent about what's going on with us during this time.

We have a friend coming from CA to be tested July 10th. If he matches and is still interested in going through with the donation, we are looking at an October removal of one kidney and December for transplant. The months in between will require dialysis likely at Vanderbilt two days a week.

We've been most impressed and humbled by the strangers and of course friend that have volunteered to be tested, offered prayers and/or thoughts. All of this is what has kept us going during this uncertain time. Thanks to all for that!!!