Ok we have had just about as much Christmas as we can stand. We had Christmas on Christmas Eve, Christmas day and the day after Christmas. The tree and decorations have been packed away until next year. Call me hum bug if you want but I had to get it put away because this week will be busy.

We are trying to use the access in Steve's arm, this is not going so well. He has went a few times to train with this access. (By the way thanks Gary M. for going with him, it really helped me out a lot). The training nurse is having trouble finding the right spot. She can always get the Venus line in with no problem but the arterial never works. Usually they stick him 1 to 3 times and end up hooking the arterial line up in his chest catheter. They stuck him so many times the week of Christmas and it infiltrated that his left arm looks like he has been in a bad car wreck. It is badly bruised from the elbow to the wrist. The nurse thought it was good he wasn't coming back for a few days to give him a break. Blair went with him one day last week and I warned her if blood, needles or any of that bothered her she might not want to watch. I have to admit it is not good sitting and watching this pain. I have never had any problems with this kind of thing but I have to tell you I found myself getting a bit queezy one day last week watching all this.

Today we went an things did not go any better. They get the Venus line every time time but not the arterial. The training nurse called in another nurse today that does this on a daily basis and she did good. Steve wants her to start doing it all the time. It is so painful that he keeps telling me he doesn't want to go back. He is really discouraged this week.

With the way the weather has been and sounds like more snow tonight, with his arm being so badly bruised and the pain I think we will be doing this the month of January anyway. What they are trying to do in case I haven't made that clear they are trying to form what they call a button hole. The vein builds scar tissue from all the sticks and it makes it tough so he can stick it in the same place once the button hole is formed. Easier said than done.

We know there are a lot of you that have been praying for him, please keep it up he is needing it now more than ever to keep his spirits up. We go see the Nephrologist at KU on the transplant team before long and also the first of February we are going to KU to do a CT scan with contrast which he has not done in years. They warned him doing it with contrast is the best picture but could cause whatever remaining kidney function he has left to fail. We said we knew that. At this time they will discuss what it looks like. The ultrasound from Dec. 11 show a slight change, nothing that they were alarmed about, probably just normal detieration of the kidney. Probably will make a date with the urologist to have it taken out. He would like to keep it as long as possible if they think it does not have cancer because it does help with the water balance and he is still peeing some which is good. If they take it out he will have to be more strict with eating and fluid intake.

Thats all for now. Take care and God Bless.
Love Steve, Christy & Blair

Steve will start tomorrow accessing the fistula in his arm. This means going back to St. Joe again for more training. This will take at least 6 to 9 times. As of Friday we have done the dialysis at home and it is going pretty well. He doesn't like the time it takes to do this, approximately 3 hours but it is better than driving to St. Joe. We have been working this schedule around Blair's basketball games. We can't miss that. He is anxious to get started with the fistula because this means the pump speed on the machine can be as high as 500 which we think will shorten the time he is actually on the machine.

We had an appointment at KU Friday and they want him to come back the first of February to do a CT scan with contrast to take a good look at the kidney with the cyst. They see a slight change but nothing significant. At this point they want to talk about taking it out. We are also trying to set up an appointment with one of the doctors on the transplant team to see where we are at.

We will let you know how things go this week. Merry Christmas and Happy New Year.
The Schmitz's Steve, Christy & Blair

We officially today did dialysis at home by ourselves. Yesterday the dialysis nurse came to our home and helped us set up and get started. Whatever jitters we have now I guess won't be first time jitters anymore. I got him hooked up and he watched the Northwest game while the machine was running. This kept him occupied for a couple of hours. It is now 5:00pm and he is still walking, talking and breathing so I guess we did everything ok.

Steve has an appointment Monday with Dr Lukins the vascular surgeon to check the work that was done on the fistula. The dialysis nurse thinks it looks and sounds really good. So maybe Monday the Dr. will give the ok to use the fistula. If so then it is back to training again to learn how to stick the vein for the dialysis access. The nurse briefly explained some of this. You start with a 17 gauge needle and work to a 15 gauge which is very large. You stick in 2 places one for blood going out and one for putting it back in. Vampires would love this.

All we are asking for this year for Christmas is this next year to pass quickly.

Happy Holidays from the Schmitz's

It will be 4 weeks tomorrow Steve has been on dialysis. With any luck we hope to do his first home treatment at the end of the week. We are anxious about getting started at home. 2 hours driving everyday is starting to wear on us. He still has the catheter in his chest. We will have to go back once he gets the ok from the vascular surgeon to use the fistula access in is arm which was fixed last Tuesday. We will have to go 6 to 9 times so he can stick his arm and form what they call button holes.

He is feeling better but they say it will probably be mid January before he will feel real good. Our appointment with KU for Dec. 11 has been cancelled. It will be rescheduled. This is the appointment to do another ultrasound on the remaining kidney. His kidney is still working but not sure how much. This test is not in yet. We are working on getting his Hemoglobin up. He is still anemic. They are now wanting him to eat lots of program, meat, eggs, etc... People on dialysis need lots of protein to keep from being anemic.


I will let you know when we get started at home. Happy Holidays!

Christy

We have had 5 days of home hemo dialysis training, tomorrow will be our 6th. Either I am old or learning isn't as easy as it use to be. This is a bit overwhelming. Needles, syringes, gloves, sterile everything and the machine itself is like a small computer. So much work to be done. We are getting letters from our doctor for the power, phone and the water company. This is so we can have a medical alerts put on these accounts. We had to take a water sample from our home and it has to pass inspection. They say this is no big deal. The machine uses tap water when you are at your home.

Emily has been going with us to learn what we are learning. She is going to be the back up. She works at the hospital delivering babies at night in ob and learning dialysis in the daytime. She is not getting much sleep. We have been putting in some long hours but approximately 2 hours per day is driving.

He is feeling better. He said it is so much better when he does dialysis on the machine like we will be using at home. He will do dialysis 6 out of 7 days once we are at home. Right now it is taking 3 to 3 1/2 hours each time. Once we get good at this we hope it will be 2 1/2 to 3. We can pick the 6 days and it can be anytime in a 24hr period, doesn't have to be the same time everyday. He has kind of figured out his fluid intake to keep himself from gaining too much. He has traded his 20oz tea glass for an 8oz juice glass. I told his family we are going to buy shot glasses and leave one at eveyones house, this will be Steve's glass we he comes to visit no more than a shot. He has already experienced what it feels like when they have to take of too much fluid, his legs and hands started cramping terribly. It didn't take long to figure out too much fluid can be painful.

The training nurse told us today she has 4 patients right now doing home hemo dialysis. I thought that was scary. Either they are too chicken to learn (I am right there with them), don't have someone to help them (a big percent are senior citizens) and could be it is pretty darn complex. So I guess we are going to be in a small percentage of home hemo patients. The doctor says this is the way to go since he is so young. It is easier on the body, it doesn't drag you down as much and your in control of when you do it.

Right now Steve is dialylizing through a perm catheter in his chest. He basically has to flex able tubes sticking out of his chest. Near future he will be using his fistula in his arm. We just today received a call from the vascular surgeon about getting his fistula worked on. I will have control over all sharp, long, pointed needles filled with different things. Therefore don't be pissing me off.

All joking aside this is going to be like bringing your first born child home from the hospital. I asked the nurse today if she could come stay with us for about 2 weeks. Please pray for us to give us strength to be able to do this at home. I am signing off and taking the long weekend off.


Love Steve, Christy & Blair

7:35pm Monday night

Today did not go well at all. We were suppose to start the dialysis training today. Emily, Steve and I took off for St. Joseph this morning in the first snow storm of the winter. Between Maryville and Savannah we saw 6 cars off in the ditch. The roads were terrible. We arrive in one piece at the dialysis center at 9:00a.m. After about 30 to 40 minutes of waiting they finally came out and said that the machine we were to train on was not working and they had been on the phone with tech support but was not able to get it going. Steve still had to have dialysis but could not get on a machine until 12:30pm. Emily had to be at work in Maryville at 3:00pm. We were either going to drive back to Maryville or call someone to come get her. Alan said he would come get her. He is such a good guy. So the 3 of us went to Perkins and sat for an hour and 45 minutes until a machine became available. Steve got started about 12:45pm.

They said today he weighed in at 117.0 when he left Friday his weight was 113.1. He had too much fluid on. At the end of the treatment today his fingers started cramping bad enough they had to get some fluid back in him. He had 30 minutes to go and his finger was killing him. Finally the brought out the chicken broth. They said if this every happens at home dissolve 1 chicken bouillon cube in a half cup of warm water and have them drink it. This puts some of the sodium back and will relieve the cramping in the the arms, legs, fingers, etc... In about 10 minutes the cramping started getting better.

We made the long drive home. Today was very frustrating. Now we are going to try to start training again on Thursday. I hope this goes better.

Christy

Sunday morning 7:55a.m.

Rough week last week. Let me see if I can start where I blogged last. Before we left the hospital Steve had a Fistula-gram which is where they inject dye into the fistula in his arm. It showed that the fistula has branches from the main blood supply which is why it has not matured like it was suppose to. At some point he will have to get this taken care of in order to use this access for dialysis. For now he will use the access in his chest. We did ask when could he get this taken care of and vascular surgeon says no hurry, of course Steve wanted to do this before he left the hospital. Ha!

He has had 2 dialysis treatments at the hospital and 1 at the dialysis center. It makes him feel like crap. He is pretty disappointed. He says he felt better before he had dialysis. Each time was 3 hours. I am hoping that his body will adjust to it because right now he feels and looks terrible. He is very nauseous, very weak and it does weird things to you. When he did the treatment Friday at the center his weight weighing in was 114.9 when we left it was 113.0. They measure in kilos. The nurse said this was perfect. You don't want to pull off too much fluid. According to the nurses at the hospital the first 2 treatments were to just clean the blood and the 3rd was to start taking off fluid. He has to be really careful now with diet and fluid intake. I don''t know if he can survive on the fluid they are limiting him to. Approximately 40oz. of fluid a day is what they said. I am anxious to see what he weighs Monday after going through the weekend.

I am no expert but I would say his kidney may have already quit. They said it probably would once he started dialysis. He only urinates maybe twice a day now. He use to go about every 2 to 3 hours.

We start our training Monday. Steve, Emily and I will be doing the training and in time hope to teach more people. Steve and I decided this was a little more complex than we thought it was going to be. If you can't stand the sight of blood this will not be for you. When we get started I just hope that I am smarter than a 5th grader because it looks like a lot to learn, with no errors.
I will try to get on here again sometime this week. I am am going to work a couple hours on both sides of the training and Emily is going to work evenings each day when we get the training completed each day. So if you don't here from us it is because we are in slumber.

Christy

Much better night last night. Several hours of much needed sleep. My question for today is the 3 blood pressure meds that he is on does he still keep taking them. His blood pressure to me is fluctuating but has been a lot lower. This morning it was 109/63, his blood pressure has never been this low. He is going to have a bladder scan this morning to see if he is empty his bladder like he should. Hopefully we can go home today but I guess it depends on what Dr. Lukins says about the pictures of his fistula.

Christy
Reporting from Heartland Hospital

Sorry it has taken me so long to post. I am not having good luck with the Internet here at the hospital.

Last night was long. Steve's pain meds did everything but keep him from pain. He really complained about his chest and neck hurting from the surgery. Finally at 1:00am he settled down and went to sleep for 4 hours. We were awaken at 5:00a.m for meds. He said he couldn't believe how good he felt this morning. Of course I thought he still had medicine hangover but he did convince me he felt a lot better. They brought breakfast in and he said it didn't really feel like eating but he thought he better eat a little. They came right away and took him to dialysis at 7:00am. Before they could get him hooked up to dialysis he got sick. For several hours he was nauseous. They gave him zofran to help calm his stomach. He was nauseous pretty much all day.

Dr. Browns husband is the doc at the hospital this week so he is seeing Steve. He said no going home today since you were sick. That made him happy. He said it could be uremic poisoning but he was ok yesterday. I think it is his body adjusting to the dialysis and pain meds by mouth, reg meds, etc... too much for the body to handle. He felt pretty crappy all day.

Finally at 4:30pm they came to get him to put dye in the fistula to see if it has a problem. The doc that did this seems to think it is ok but he is going to let the surgeon look at the pictures they took and make the decision whether to use it or not. We got back to the room about 5:30pm and he did eat some dinner. He seems to be doing better. So tomorrow we will probably see Dr. Lukins (vascular surgeon), Dr. Brown (kidneys) and Dr. Liarz (Urologist). His next dialysis is Friday morning at 5:45am. I think Linda said she wanted to take him to this appointment.

10:00pm Tuesday Night

It has been a long day. Hoping for a calm night. Steve's surgery only lasted about 30 minutes. He was in recovery for over an hour. Finally got to his room at noon. Then the excitement started.

A small incision was made in the neck above the collar bone and a permicatheder was threaded through a large vein with the exit point about 6 inches down on his chest with 2 tubes hanging out. Everything went find until he got to his room. I noticed he had a small blood spot on his gown. A few minutes later the blood spot was about the size of the plate. I got the nurse immediately. The exit point was bleeding more than it should. 2 nurses applied pressure for a while but they still could not get it to stop bleeding. He had a slow leak. Finally the nurses call the surgeon. He was already in another surgery so they call his nurse. She came immediately and was with us most of the afternoon trying to get this to stop bleeding. Around 3:30 it finally stop bleeding. The surgeon came anyway and did a couple of things to the permicatheder and we didn't have anymore problems.

They took him about 4:00pm to dialysis. His first treatment was 3 hours. He did pretty well. He hasn't been that comfortable due the pain in his chest and neck. He thinks this is worse than actually having the kidney taken out. The pain meds are not as good as the morphine he had last year. We will see what the night brings. Sleep I hope. Will try and post more tomorrow.

Christy

Steve has been coming home this week and his ankles are swollen. Not good. It is good that he will be starting dialysis next week. He has been working some long hours trying to get crops out and Mike Archer came up last night and took over for him and he came home. Thanks Mike it was very much appreciated. He has been coming home eating and pretty much going to bed. He has been in bed at least by 9pm every night and a couple of nights it was 8:30.

Blair is still playing softball in KC on the weekends but we haven't been able to go to any of her games. Steve is too tired and I hate to go and leave him home. We have some great friends that she rides with and we can't thank them enough.

The dialysis nurse told us for the training, week after next to be there at 9:00a.m. Training will probably be 5 hours per day the first week. She said she is flexible with the hours. When I told Steve this he said we will go Monday at 9:00 and see if she won't change it to 6:00a.m. the rest of the week. We will see how that goes over.

Thanks to those of you who have offered to drive him to his appointments and to dialysis. We may have to take you up on them. Also all who has offered any kind of services, it is much appreciated. Until next week, keep praying.

Christy

I said I wouldn't post for a while but I forgot Steve had an appointment with Dr. AJ (Onocologist) and everything was good. It was time for his 3 month chest xray and results were ok. This chest xray has been every 3 months because according to Dr. AJ Steve's kind of cancer reoccurs most of the time in the chest. Everything looks good. Steve had his last CT scan in July. AJ wants another in January. We asked if we could do this in December because my company is enrolling with a new insurance. Our previous insurance company has been bought out. That insurance has been great and sounds like that will be a thing of the past.

I have been on the phone a lot the last 2 weeks calling insurance choices that my company is offering, social workers, case workers, other insurance people, the dialysis center, etc... I found out the dialysis center in St. Joe is not contracted in the network with either of the insurance companies that my work is offering. This has been one big headache not to mention stressful.

The plan is to start our dialysis training on Nov. 16th. Might take 3 weeks. Probably 5 hours of training per day. Haven't worked this out completely with my work yet but will probably go to work for a couple of hours go to St. Joe for training then go back to work for a couple of hours. We will just have to see how it is going to work.

We are still planning on getting the catheter access on Nov. 10th. We just keep climbing the hill. Thank you for all your thoughts, prayers, good deeds.

Steve, Christy & Blair

Steve's labs not so good yesterday. His creatinine was 8.0m, phosphorus was 5.4 and potassium was 5.3. Dr Browns nurse called me today and asked how he was feeling. Sometimes good sometimes not so good. She said as long as he is feeling ok and not vomiting it was ok to wait until the 10th to start dialysis. She said it wasn't necessary to do anymore lab work they will do it the morning of surgery for the access for dialysis. At this point his lab work will not be improving. Hopefully he can make it 2 more weeks. Harvest this year sucks. It is not working very well for him. 3 days of rain 1 day in the field. We are trying to avoid crowds and sick people. So he will be as well as possible for the surgery. You probably won't here from me again until surgery day unless he gets sick. Pray for a sucessful surgery and they he avoids the flu.

I have to say I got a little excited today, ok maybe more than a little. When I looked at our mail there was an envelope from the University of Kansas Hospital Renal Transplant Program. Of course all kinds of things went through my mind and I ripped it open immediately (it was address to Steve). Nothing about transplant. Small let down. It was a letter informing us about H1N1 (swine flu) based on recommendations from the doctors from American Society for Transplantation and Center of Disease Control.

The vaccine has been approved and some of the first doses are available this month. It was informing Steve to not take the nasal mist form of H1N1 vaccination, it contains live virus. He must wait until a dead-virus vaccine is available in form of injection.

They did recommend he get the regular flu vaccine, which he already has. After transplant it is recommend that the patient never receive a live virus. Which the injection of regular flu is not a live virus. They outlined who is at risk of serious complications for H1N1
Pregnant Woman (Steve doesn't fall into this category)
People between the ages of 6 months and 24 years old(He missed this category to)
People ages 25 to 64 years of age who have chronic health disorders or compromised immune systems ( Steve would fall into this category).

It listed the symptoms of H1N1:
Abrupt fever greater than or equal to 100
Cough, sore throat, runny nose
Aches, chills, fatigue
Diarrhea and vomiting are unusual

It listed some precautions you should take which are the normal:
Stay home when sick, don't go to school or work so not to spread the disease.
At home isolate the patient as much as possible from family member's.
No hugging, kissing or handshakes (Maryville & Conception Parishes have stopped drinking the wine Maryville has also stopped the sign of peace by shaking hands if you choose so).
Get plenty of rest and drink plenty of fluids. (If patient is on a special diet and you would not normally drink the drinks recommended) Steve's fluid intake is somewhat restricted which worries me because of fever, the normal patient would be told to push fluids.
Cover your mouth when coughing, washing hands frequently, etc.,
Do not visit hospitalized or high risk family members or friends.

So the letter was to inform us to take precautions. Which we have been. This is not to be taken lightly. Maryville middle school had 60 students gone yesterday Oct 20th. I think it is just getting started around her. I had a few parents at my work with children who have H1N1. Steve and Blair probably think I am nuts. I bought hand sanitizer, disinfectant wipes, Clorox, etc... Steve just needs to be in a bubble for a while. So if you see us and we don't get too close, hug, kiss, etc, you know why. We have to keep him healthy as possible or he will be in the hospital I am afraid.

The plan is still the same in 3 weeks he is going to do the surgery to have the catheter put in to start dialysis. Hopefully he can avoid the flu. It is going to be a little scary going into the hospital where all the sick people are.

Disappointment

Steve had the appointment with Dr. Lukens today. As Dr. Brown suspected there is something wrong with the fistula(access in the arm for dialysis). The only way to find the problem is to inject dye which they don't want to do because it could take whats left of the kidney function which is not much. Contrast dye for any test is hard for kidneys to get rid of. Dr Lukens suspects there is two issues the first being where the graft was done where the artery and the vein come together, about 1 to 2 inches from the wrist on the inside of the arm. The other issue he believes is that there are branches coming off the main blood supply which is not that uncommon. If it is what he suspects there are a couple of things that can be done. If the vein has narrowed they can angioplasty it like they do on heart patients and make the narrow places wider. They can also tie the branches off depending on how many there are (there would be an incision for every place that needs to be tied off). They just won't know for sure without using the dye.

So, the next plan of action is the 2nd week of November he will be admitted to the hospital, have the catheter put in his next(another dialysis access), he will get dialysis 1 or 2 days and while in the hopital they will do the dye to find the problem with the fistula. Steve picked the 2nd week of November. They will work on getting the fistula fixed and he will have to use the other access for dialysis. If something happens between now and November and he gets sick they will do an emergency procedure and put the catheter in his neck. The doctor says some of his older patients like the catheter access because they do not like getting stuck all the time. The risk of infection is higher.

Pray for what is left of the kidney to last 5 more weeks.
He went to the field when we got back from the doctors appointment. Pray for good weather.

Christy

We saw Dr. Brown yesterday. Regular check up. Creatinine, potassium and phosphorus were pretty much the same. We mentioned to her about him being sick on Sunday and having blurry vision. She thinks it is possible that his blurry vision could be from being very fatigued. She said if it happens again to let her know and she would set us up with an optimalogist. Blurry vision is not usually due to kidney failure. Steve did admit that he is nauseous about every day but it usually goes away. So after talking with her for an hour she suggested that he start dialysis at the center 2 times a week for a couple hours to make him feel better and get him through harvest. He said no!

We talked about his fistula(access for dialysis) in his arm. She looked at it and had some concerns. She thinks it may now be too deep or narrowed off. We are going to see the vascular surgeon on Monday that did the surgery and see what he thinks. It may be smaller veins are branching off taking some of the blood supply and they would have to tie them off to get the main supply back to the large vein or if it is too deep they may be able to bring it back to the surface. They usually check it with dye but since his kidney is only working 9% they don't want to risk using the dye. They may do an ultrasound with a Doppler. Guess we will know Monday.

Dr. Brown called me later the same day after we had seen her that morning. She said she had been thinking about his case all day. She really feels that he should start dialysis 2 times a week now before he gets really sick. If he gets sick and has to go to the hospital depending on what his levels are they would just put a port in his neck and start dialysis. There is always a chance this could be critical and she doesn't want that. She would like to start the training next week but you have to do the training on the patient. I told her I would let him know that she called and we are to call her Monday after his appointment with the vascular surgeon to let her know what he has decided. Guess what he said? NO I am not planning on dialysis until after harvest unless I get sick. Stubborn!!!!! Does anyone know if this attitude came from the Meyer side or the Schmitz side??? Guess I will have to take my own action. I am telling his sisters.

Later Christy

Steve did not feel well at all today. He was very nauseous, weak and his vision was a little blurry. It was bad enough that I could tell he was a little worried. We were out side most of the day cleaning out the car and pickup, picking up walnuts in the yard, nothing to tough. Blair said she could tell when they were picking up walnuts that something was going on. He came in the house and laid down. He blamed it on eating too much the night before and at breakfast this morning. Just like a man to find another reason but the obvious one. He did feel better by evening.

Sometimes I wish he would just go ahead with the dialysis. I know it is really going to tie him down but it has to be better than the way he feels. I am afraid he is going to wait until he is really sick. It has to be better than what he is feeling the last couple of weeks.

Keep praying, thanks a bunch for all that everyone has done.

The Schmitz's

Steve had his appointment today at KU. First time since we have been going to KU that we had to wait. His appointment for the ultra sound was at 8:30 with the appointment with Dr. Holzberlein at 9:30. We didn't get in to see the doctor until 10:30 only an hour wait which was not bad considering all the times we have been there and have only waited 15 to 30 minutes. Steve has learned that patience's is a virtue.

We had to go to the cancer center today instead of the hospital due to the mix up of the rescheduling of the cancelled appointment. This is why it took so long because he was considered a new patient there since we had never been there before.

Sometimes we feel like we are all over the place with the outcome of these appointment. We go for one thing and usually come away with something different. Ok with us if the luck stays with us. The appointment today was to determine a date to remove his kidney. After talking with the Dr. he said the ultra sound is unchanged. It looks the same as the last 3 which was good news. He says leave it in if it is still working, which is what Steve wanted to hear. Dr. feels confident that no changes in the cyst on the kidney is a good sign. We haven't talked with the transplant team in a while. Dr. today says of course it will have to be removed before transplanting. He asked Steve if he has had any fatigue, nausea, vomiting, headaches, shortness of breath, or chest pains. Steve did say all except he has not had any chest pain. Short of breath when going up stairs. The doctor wasn't surprised. He is still planning on removing it laproscopic if scar tissue allows. We made another 3 month appoint for another ultrasound. Every time we do this I think he will be on dialysis before we see them again. He has proved this wrong twice now. We are very thankful in the power of prayer.

Steve will see Dr. Brown next week. He is suppose to get a flu shot soon, his 3rd hepatitis B and sometime get a chickenpox vaccination.

Steve was tired when we got home all in all today was a good day long but good. This is kind of like playing chess. You can't hide, you can't blend in, your move!!!!

The Schmitz's & The Gockel's (Emily was feeling left out)

Steve did labs today. I know they say that his numbers will not get better but it is hard to see then decline each time. His creatinine was 7.3 today, potassium was 5.4 (out of range a little) and the phosphorus was 4.6. He is taking a phosphorus binder every time he eats a meal now so any phospharse in the food will be taken out. He had a slight headache today but didn't get him all the way down like it did last week. We are rescheduled for next week with KU again.

We have been hanging around home the last couple of weeks. Going to Blair's softball games and just taking it easy. Blair's batting average is 600 hundred and she is frustrated with that she wants it higher. She must be related to her cousins (won't mention which ones).

I will post again after our appointments a KU. Thanks for all the support and prayers.

Steve, Christy & Blair

Well not much to tell after today. We were scheduled to go to KU for an ultrasound to check Steve's kidney again and an appointment with Dr. Holzberlein, the urologist. We have had this scheduled since April.

They always call the day before to confirm the appointment and we did not receive a phone call. I decided this morning before we went on a long drive to Kansas City that I would call and check to make sure he still had the appointment. You know right away when they put you on hold something is up. The girl came back on the line after a long delay and told me that he did have an appointment for an ultrasound and to see the doctor but it had been cancelled due to the doctor was out of town and they forgot to call us.

Good thing I called. Steve's blood pressure would have been off the charts if we had gone to Kansas City to find his appointment was cancelled I wouldn't have been happy either. The girl in the office said she could not reschedule him someone would have to call us Monday to do that. So we will see what happens Monday.

Steve was sick Wednesday, woke up with a headache and had it all day. He finally came home around 4:00 showered and layed down. About 6:30 he got sick enough to vomit. When he has a headache like this he usually has to go to bed. Every time he does this I think it will be the last because he will be needing dialysis. He got up Thursday morning as usual and went about the day. Today was pretty good also.

We will let you know more when we know more.

Love Steve, Christy & Blair

We made it through Labor Day weekend, not much laboring went on. Actually we had a good time. Steve and I camped the entire weekend with friends. Hung out out the lake, went to the famous Wiffle Ball Tournament in Conception Jct. that Steve and Vick host. Pretty entertaining. Our oldest grandson spent the last night at the lake with us, let me tell you he doesn't set still for a minute. All in all it was a good weekend. Steve slept one day until 9:00a.m., he is usually up no later than 6:00a.m. Today they cut silage. It is 7:00pm and he is not home yet. I am sure he is going to crash. Will let you know more after our visit to KU.


Christy Schmitz

I have really noticed a change in Steve in about the last 2 weeks. He is sleeping more and more which is not a bad thing but fatigue is one of the symptoms of the kidney failure. We went to St. Joe yesterday to see the Urologist Dr. Liarz (surgeon who took out the left kidney). I really like this guy. This was a six month follow up. He is the one who takes care of all your plumbing, kidneys, bladder, etc... He asked Steve how he has been feeling and he answered as always "great". Dr. Liarz looked at me, so I have to be the bad guy and say his energy level has dropped quite a bit. What is with guys and doctors. Just tell it how it is.

His creatinine has jumped to 6.6 this was the results from Mondays labs. Potassium was in range. He falls a sleep quite easy and the last time we saw doctor Brown she said to be careful about that and don't get too drowsy when driving. If he sets down his is usually asleep. He slept on the way to St. Joe yesterday and that is unusual for him to sleep in the car, that's usually me.

He has an appointment in a few days at KU for another ultrasound to check the remaining kidney to see if everything is still the same as far as it having the cysts. I am sure they are going to talk about when to take it out. Dr. Liarz says he wants them send him a letter about the results of this next ultrasound. He thinks if nothing has changed since he has been doing these that it might be reasonable to leave the kidney in. He says it will help with the water balance even after it fails. This is a scary thought, you don't want to take it out if it is ok other than failing but at the same time you don't want cancer to reoccur there either. We will have to do whatever KU says since they have control of the transplant.

Dr Liarz had some interesting statistics about renal cell cancer. He says the chances of cancer being in the other kidney is slim to none. He said the numbers just don't show this. It is more likely to reoccur in the chest or another organ and should show up if it is going to reoccur with in 12 to 18 months. That is why renal cell had a waiting period of 2 years before he could get a new kidney. Dec 17th, 2009 will be 1 year and that is just right around the corner.

You may have to do a little overtime on the praying to help us Steve make the best choice about what we are going to do when we see the KU doctors. We probably won't have a choice. I will post again to let you know the outcome of his ultra sound. Love to all.

Steve, Christy & Blair (loving softball)

Todays Appointment

Steve had an appointment today with Dr. Brown. She made some slight changes. Increased one blood pressure medicine, his pressure is still a little high. Any time he eats dairy products he talks a pill to help get rid of phosphorous and she increased this 2 twice a day. Still limited on fluid intake (1 1/2 quart per day) and no salt. So don't ask him to got out for drinks. The potassium was barely in range but as long as it is in she won't complain too much about that. His hemoglobin was 11.2 right where she wants it. The 2 shots that he has taken has got that back where it needs to be so she has decided to have him get the injection once every 3 weeks instead of every 2. His GFR (clearance or kidney function) is now 10% dropped down from 11%. He now technically qualifies for dialysis but as long as he still feels pretty good she will let him keep going. If he gets nausea, vomiting, itching, swelling, short of breath, forgetful (already there) he will need to start dialysis. These are some of the more critical signs of kidney failure. Most important if he has chest pains he needs to call and get started. Kidney failure is hard on your heart. She said his fistula in his arm looks great. The nurse said today it sounds like the ocean when you listen through the stethoscope. What do you need sea shells for when he can stick his arm under your pillow and makes you think your sleeping on the beach, ha!

She does want him to start thinking about a time when he can do the surgery. She said October, he said November, she said ok November he said December. She did agree as long as he feels ok no rush but she does want him to start thinking about it. We have an appointment in Sept. at KU to have another ultrasound on his kidney and we suspect they will be pressing him pretty hard to commit to a time to have the kidney out. He said I am keeping this thing as long as I can as long as the test keep coming back good. We talked again today about home dialysis and sounds like Dr. Brown thinks this will be really good for him once we get the training and get use to it.

You may not here from us for a week or so, Blair is getting ready to start softball.

Take care and pray. Thank you everyone for all the prays and support. Great family, great friends makes for a pretty good life.
Steve, Christy & Blair

Today is the last day of July and I promised I would blog at least once a month. The last entry I believe was July 1st. I had several complaints at Emily's wedding that nothing new had been blogged. Give me a break people. It's not like I haven't had anything else to do. The wedding is over so now on to the next thing. By the way we want to thank everyone who came to the wedding. We thought it went well and we enjoyed seeing everyone. Everyone arrived home safely after the wedding that we know of. A lot of you probably didn't know this but 2 of the bridesmaids each in different vehicles were stopped by the same highway patrol on there way to the church the day of the wedding. My niece was pulled over in Ravenwood going 10 miles over the speed limit. She pleaded her case to him and said she rarely speeds but she was trying to get to a wedding. He felt sorry for her, ran her license and sent her on her way. I met this patrolmen going 66 and squeak through. The next bridesmaid not so lucky she was pulled over somewhere just outside the city limits of Ravenwood. She told the patrolmen she was sorry that she was speeding but she was trying to get to a wedding. He said do you know how many times I've heard this today. The 2nd bridesmaid said no. He told her he had just stopped another girl in Ravenwood for speeding who said she was trying to get to a wedding. The 2nd bridesmaid said was it Manessa R. he said yes! Patrolmen ran her license and sent her on her way. 2nd bridesmaid texted Emily the bride to let her know that she might be a little late because her and the 1st bridesmaid were stopped by a cop for speeding. Emily sent text out from her phone "bridesmaids in the slammer, wedding will be delayed". This is no joke, but everyone arrived at the church on time for the wedding. Nothing like a happy ending. Mother of the bride and maid of honor(youngest sister of the bride) came down with viral infection. Maid of honor had to see the doctor and get medicine. She is feeling much better. Mother of the bride does like she always does and says it will be better in a few days. Father of the bride faired well except for paying for the wedding.

Now about Steve. He received his first aranesp shot last week. This to bring up his hemoglobin. It has been low lately, but normal for someone with kidney failure. We are going to try this once every 2 weeks and see how it goes. It should make him feel better. He had his 3rd ct scan Tuesday and we went to an appointment yesterday for the results. Scan looked good. Cyst in the kidney has not changed and no other spots were found. Dr. AJ does not want another ct scan for another 6 months but would like a chest xray in 3 months. It has now been 7 months since his surgery and things seem to be as normal for us as they can be. Dr. AJ asked how the kidney thing was going and we told him as well as to be expected. He asked Steve what his creatinine is? Steve said 6.1. Dr. AJ said you are the only person I know walking around with a creatinine at 6.1 and not on dialysis. Steve is out to prove them wrong. Dr. AJ said I hope to see you in 3 months for the chest xray and your still going without dialysis. Steve's GFR(kidney clearance) week before last was 11%. This means 11% kidney function. The kidney doctor says some people can drag this out for a long time and wake up one morning sick and at the point will be going to the hospital for dialysis. Others fail quicker. KU is still going to take his kidney out sometime this fall. They have him scheduled for another ultrasound in September and at that time want to discuss when to remove it. Steve has been very tired. He usually quits working by 5pm or before and comes to the house for a nap at noon. It is wearing on him. He still has a headache now and then but can usually feel them coming on and can take something and get it under control before it gets to bad.

We hope to do a little relaxing before Blair starts back to school and the next big wave begins. Right, us relax that's for old people. I felt pretty old last weekend after the wedding climbing into bed at 2am.

I would like to have all of you say a prayer for us it certainly has helped. Also say a prayer for Theresa Schmitz's (David's Theresa's) sister. She found out this week she has breast cancer. Your prayers are much needed for her and her family.

Until next time. Thanks and God Bless all of you, I know we have been.
Steve, Christy and Blair, Not Steve, Christy and girls (no more girls, we are down to one and counting)

Ok I know it has been a while but for the most part things have been pretty steady until the last few days. Steve is now starting to get swelling in his ankles, not a good sign. His kidney function last week was 11% with creatinine at 5.7. It is starting to creep up. I am afraid he will be starting diaylsis real soon. I talked with Dr. Brown on Monday and she has taken salt away from him and limited his fluid intake to 1 1/2 quarts per day. This is tough. He can weigh himself at home each day to see if he is retaining lot of fluid. If he becomes short of breath we suppose to call Dr. Brown right away.

He is still getting headaches often. I am not sure if this from less kidney function, Emily's wedding planning or living with a house full of women. I can tell he doesn't feel good and I am hoping that dialysis makes him feel better. They say it depends on each individual. I talked with Lori at the dialysis center on Monday and she will be finishing up training with one of her patients the end of the month and sounds like possibly we can train the first of August. They are still saying that hemo dialysis at home works better than going to the center. You do it every day and it is more balanced and is not such a shock to the body. I don't how sticking him every day is going to be but we are going to attempt is.

God give me steady hands and an accurate stick. He may do this or I may do this not sure yet. I will try to do better about posting. Keep him in your prayers.

The Schmitz's

Today's appointment was just a check up with Dr. Brown. Steve's blood pressure is still fluctuating up and down. She adjusted the medicine today and we will see how that goes. He had another headache today. Still not sure why. Dr. Brown wants us to talk with the case worker at KU and set up something either in August or September with the hemo home dialysis. St. Joe does not do hemo at home. We are thinking about doing it at North Kansas City, which KU said that would be fine and closer for us.

We are going to try and wait until after the wedding to see her again. So for now probably won't be much to tell. His potassium this week was back in range 4.8 and creatinine was 5.2. The clearance is hanging in there at 13% this week last month it was 12%. They will begin dialysis at 10% or less. His energy level some days is good but he said he can tell a difference and some days it is just not there.

We have purchased a new mower which he just loves. I think our grass was cut 3 times last week. The purpose of this new machine was to cut the mowing time down. As of last week our mowing acreage increased. We now move from our house to the neighbors house. This is not how the mowing was suppose to work.


Keep forming the line for donors to be tested and keep praying that dialysis won't be as long as we think.

Christy, Steve & girls

Roller Coaster Ride

I understand through Bernie to Trude to David to Steve that everyone is still very interested in what a good match would be for a transplant and when they can get tested.

This is what we know. We have asked KU several times about friends, relatives and the neighbors bull to be tested for a match for a donor kidney for Steve. They keep telling us don't worry they will test about 3 months before the transplant happens, not before then. (Keep in mind that I am telling you this today but tomorrow it may all change. This is how it usually goes. They make a liar out of me every time and I hope they do in this case.) The DVD that we watched, briefly went over what a good match is. There are six things but I can't remember all six because they don't talk about this all that much even though we bring it up all the time. A six out of six match usually never happens. KU says 3 out 6 is a good match, 4 out of 6 is probably the best it will ever be. The things that they talk about the most is blood type (not always is it the same), the main issue is antibodies. Which I have mentioned before males are the best match but not always. This is due to women when having children throw off antibodies and men keep all their antibodies. One thing they mention is size. Steve will probably get a kidney that is comparable to his size. Which means he has to have a donor that is comparable to his size so it will do the work it needs to do. A small person probably won't be a good donor because the kidney wouldn't do the job it needs to.

So all of you who want to be sized up get in line. Don't worry when they give the word we will probably go on public television and want donors to be tested. Just kidding but as soon as we know we will let all of you know so the word can be passed along.

We have a lot of great friends, family, relatives, etc... that want to be tested and we appreciate all of you very much. I just hope and pray when the time comes we test and find a match and a donor will give Steve a kidney. We appreciate all the offers from everyone who has to be tested. We have a lot of great and giving friends, family and relative. Keep praying and encouraging him some days its hard and we have to prop our chins up with sticks. I will post again next week. Steve has appointment with Dr Brown.

Oh by the way who wants to do the sizing up?

Lots of Love Christy

Steve had an appointment Friday at KU for an another ultra sound. Everything was the same no change according to the doctor. I was able to watch this again and it was even a better picture than last time. I told the tech that the cysts look like a bubble and he said that is exactly what they are a bubble most of the time water filled. He is going to do another ultra sound in September to compare it again. Still planning on taking the kidney out in the fall unless it fails sooner than it will have to come out then.

His creatinine was 5.4 Monday and his kidney is working at 12%. 10% is where you go on dialysis unless you are feeling bad. This last month he has been very tired and worn out. He is still having headaches at least once a week. Dr. Brown decreased one of the blood pressure meds and added a new one. Now he is on 3 blood pressure meds. If he continues to have headaches I think shortly she will be sending him to a neurologist. He did have a CT scan of the head back in January and it didn't show anything. When they ask you what did they see in your head what is the correct answer. No they didn't see anything, that's not good. (this is always a funny joke with the doctors)

Every time we go we get a new piece of information. Dr. H seem to think that Steve won't be able to do home hemo dialysis. When you don't have any kidneys you have to be extremely careful of your fluid intake and this is pretty tricking doing dialysis at home. Although Dr. H says he is not the expert on dialysis. I think this will be trial and error for a while. He thinks he will have to drive to St. Joe every other day. If this is true we may need help with transportation. Not everyone feels well enough to drive themselves. He also said if the kidney fails first before the fall they would take it out and hopefully he wouldn't have to be on dialysis more than one month. Steve and I just looked at each other and said "what do you mean"? He said he hoped he would be able to get a kidney in that first month or two. We told him the transplant doctors said he would have to wait 1 1/2 to 2 years before he could get a transplant. Dr. H said they transplanted a women's liver who had an active renal cell cancer. We said we would be making a phone call to our case worker. Dr. H said don't rat me out. We told him we wouldn't. Now we are thinking we need to talk to the case worker and maybe set up an appointment with Dr. Duchene, he is on the transplant team and is a Urologist in the same group Dr. H is.

I think it is a whole lot of politics or who you know. Why wouldn't be? We will be checking this out for sure.

Take care any advise politics let me know. Keep praying.

Emily's wedding coming up July 25th invitation will be going out soon.
Love Steve, Christy and girls.

I know it has been a while since the last post, not much to tell. Steve has had the fistula in his arm for two weeks. He was suppose to have a check up today but they called and canceled early this morning due to an emergency. To put it mildly he was not happy, but the good thing was he got to plant corn today instead of going to the doctor.

He is still having headaches at least once a week. Still don't know why. His blood pressure is good so that is not it. When he gets one he has to come to the house and sit down. His creatinine was 5.4 as well as the potassium today. It just keeps slowly edging up. He is always so tired, he falls asleep anytime he sits down for a few minutes. I am hoping that once he gets on dialysis it makes him feel so much better. I hope it is so good that he will say I should have done this a long time ago. HA!

He will be doing another ultrasound this week to compare to the one he had in February. We are assuming if all is the same nothing changes but if it looks different they may want to get the kidney out sooner. We will just have to wait and see.

If they could just get more crops planted I think he would feel better. The rain just won't stop. Today was only the 3rd or 4th day they have been able to plant and they are calling for a 30 to 40 percent change of rain tonight. Repeat of last year.

Hope everyone is well. We appreciate all the prayers. People tell me all the time that they are praying for him. Keep it up.

Steve & Christy Schmitz

Steve got his fistula for future dialysis put in his arm Tuesday. All went pretty well. He is suppose to keep the bandage on it for 48hrs. which would have been up this afternoon. Emily is dying for him to take it off so she can see where the incision is. His arm is somewhat bruised but for the most part seems to be doing ok. You can already feel vibration that the vein is doing. As it heals the vein will grow bigger which is what they want it to do. Evenly that vein from the wrist up the forearm will be approximately as big as a pencil. This will be the vein that we stick into when he goes on dialysis.

He is playing this up quite a bit. The girls and I have been teasing him and he keeps using his arm as a buffer. He is really going to get it when that thing heals. He forgets that it will be Emily and I who will be sticking him with that square needle when he goes on dialysis.

We also had an appointment with the oncologist this week and not much change in that area. He is setting up another CT scan the last part of July. Just to keep checking making sure the cancer is not showing up somewhere else. We also discussed a biopsy on the other kidney where it is suspicious. No guarantee if they were to do a biopsy that they would stick it in the correct place to check for cancer since the cyst are not that big. So he will keep getting the ultrasounds and ct scans for a while.

We talk with KU about once a week to keep in touch. No new news from them. He is still on the list but on hold. Hurry up and wait!!!!!!!!!!!!!

Steve, Christy & girls

Another long day. We started in St. Joe today with an appointment with the vascular surgeon. He looked at Steve's arm to see what kind of veins he has. This appointment was to start the proceedings for a fistula in his arm for dialysis. This appointment was at 8:30 this morning. Then they told us he needed to get an ultrasound of his arms. When the veins are not visible then want to make sure they know where and what they look like. So we said ok. They said they couldn't get us in until 3:00pm. Both of our mouths fell open. We must have looked pretty bad because they decided to squeeze us in between other patients at the surgeons office. We thanked them and told them that would be great because we had another appointment in Maryville with the oncologist.

We were suppose to see Dr. AJ at 1:30 today at 2:45pm we finally got in. 1 doctor and 2 staff short was the problem. We walked out of their office at 3:30pm. Steve is set up for another ct scan in July. We discussed doing a biopsy again today on his suspicious kidney. Dr. Brown will say "no way". I am planning on calling her tomorrow. No change from the scan he had right after surgery to now. Dr. AJ was surprised that Steve is already on the transplant list. This is our plan to keep surprising the doctors. We will post more after the fistula surgery has been completed.

The Schmitz's

This is the lastest on Steve.
We had an appointment with Dr. Brown this week and things are going as expected. Although Steve is not liking the idea of getting ready for dialysis, he is still feeling pretty good. He is set up next week to see the vascular surgeon in St. Joe to do the mapping on his arm and do the out patient surgery to get the fistula started in his arm. No more arm wrestling. Before long his arm is going to be his life line.

The surgeon will graft one the arteries to a vein which will make the vein grow bigger. It will take at least 2 months for the fistula to mature. A fistula is hardly ever used before 8 weeks. Once this is done he will probably be able to go the summer hopefully without dialysis. In the fall they are planning on taking out the other kidney as a precaution. We don't want the cancer to start in this one so we are going with the Dr. when in doubt get it out. Very tough decision to make.

He also has a follow up next week with Dr. AJ the oncologist. There are starting to be more appointment than days of the week. Keeping very busy with wedding planning, Steve has started in the field, Emily is about to graduate from RN school and Blair is counting the day until school is out and she can start making money.

I probably won't post again until next week after his surgery. Oh one more thing the last time we talked with KU about transplant they did say males similar to Steve's size would be the best candidates. The doctors says the donor can not have a belly (beer belly) and they can't be scronny skinny either so all you people of comparable size you have time to loose weight or put weight on. So lets get started we want to have a nice bunch of candidates to pick from.

Thank you all for the cards, prayers and concerns, we really appreciate it.
Steve, Christy and girls.

Sorry it has taken me a while to put more info on the blog.

Steve is doing some preliminary things to get ready for a transplant. He is getting some the the childhood vaccinations again DPT, chickenpox, etc... They are taking precautions if there any to make sure he is healthy as possible until the time comes to transplant.

There last recommendation is to get his fistula started in his arm for the dialysis. It takes at least 8 weeks to mature before it can be used. They want him to get the other kidney take out also.

KU called yesterday after their meeting Wednesday night. Steve has been put on the list but is on hold status. This means he can still build up time but won't be activated or called for a kidney until 1 to 2 years. The want him to get his fistula access started now and sometime in the fall if all goes well take the other kidney out. They faxed all the reports and letters to me yesterday and the report reads from his ultrasound that he has 3 cysts on his kidney. I was able to see 2 of them when he had the ultrasound done in February. They believe that it would be best to take the kidney out so the cancer doesn't start in this kidney.

We will talk with Dr. Brown next week and start with the surgery for the fistula (normally out patient).

By the way his status on the transplant list is for a cadaver kidney. Now about a donor kidney. They wanted to know if there are friends, cousins, siblings, etc... that are willing to be tested. The nurse did tell us that they will have to give him a kidney that is comparable to a person of his size. Most likely if it is a donor the kidney will be taken out laprascopic. So if any of you want to be sized up let us know.

We will let you know more after we see doctor Brown next week.

Please pray for those who are working on Steve's case. Doctors, nurses, the coordinator, etc... they have been great. Also those who have had dialysis and transplants in the past as we look to these people for guidance.

Lots of Love
The Schmitz's

Steve's spirits are pretty low after everything we have found out Tuesday. He is really having a hard time with this. If it is not too much trouble call him and boost his spirits. He has a lot on his mind. He is weighing the negative and the positive and processing all of this.

We will probably hear from KU sometime this week. I don't expect to hear until the end of the week. We see his regular nephrologist the following week. I have talked with her on the phone and she is not opposed to Steve trying a trial paratenal dialysis. We will talk more about this when we see her.

This is getting tough please pray for him.
The Schmitz's............Happy Easter

We were at KU again today to meet with several people on the transplant team. We saw the following people:
Transplant coordinator, Rebbeca (she's great)
Organ transplant financial coordinator, Lois (wonderful person)
Social Worker Case Manager, Elizabeth (student)
Dietitian, Trisha (do all dietitians come in stick form)
Assistant Professor Department of Surgery (not even going to try his name)
Professor of Medicine of Nephrology, Dr. D (a first look I liked this man)
They forgot to send a Psychiatrist.

Today was not the best of days for Steve but definately not the worst. He just didn't get the news he was hoping for. After reviewing his case the doctors today think that his other kidney is suspcious. They are not saying that it has cancer but with the ultrasound that was done they have seen too many kidneys have the cancer reoccurr in the other one. Dr. D's motto is "when in doubt get it out." This is hard for Steve to take because he is planning on going the 2 years and not going on dialysis. Dr. D said with your creatinine at 5 his doesn't believe the other kidney will last 2 years. He is more concerned about the cancer showing up in the other kidney.

The next piece of bad news was Dr. D doesn't think Steve can do the parateneal dialysis because of having the radical nephoroctemy he had, his surgery will leave scar tissue and the solution would either leak out or not do its job. They are suggesting hemo dialysis. They graft an artery into a vein in the arm, this takes about 6 to 8 weeks to become mature, he would have to have a buddy to do this at home. I would be trained on how to stick a very large needle into his arm. Just not as convinent as the other. We will do what ever it is we have to do. They did remind us that the midwest is the best place to be for transplant. If you were living on either coast it would be at least 5 years to receive a kidney. I did let Dr. D know that we would not be moving, the beach is over rated.

Now I want to tell you a little bit about Dr. Diederich. The comment I made up above was that I liked him from the moment I saw him. Don't get the wrong idea. It wasn't that he was my age, good looking, etc... He reminded me of my grandfather when I was a child or he could be my elderly father if I was 55. Yes the man has to be in his 70's. They call him the Grandfather of all grandfathers at KU and he is known all over the world. His personality is sooooo.... well down to earth. He was born into a farming family not well to do and wanted to know all about Steve's farming operation, number one what kind of a tractor he has, crops he raises, cattle, when he found out Steve farmed. We spent a good 30 minutes talking farming. The man was 6 ft. tall, fairly thin, white hair and probably disregards all rules of the hospital. We took to him and he took to us very well. This is the man I want to be giving us advise on what to do. He has seen it all, been around long enough he can tell you several scenarios. He is not senial at all, he is sharp as a tack. Everyone at KU in the Renal area says he is the best. He has trained 3/4 of the doctors in Kansas City and I believe Steve's Nephrologist in St. Joe worked under him in the 70's and 80's.

So not the best of days. We just have to keep reminding ourselves that there is hope and 2 years from now this journey can lead to great things. You have to take the journey in order to reach the destination.

Heavy on the prayers, please.
With all our love, Steve, Christy & girls.

More appointments today. We saw our regular kidney doctor today for a check up. All was good. We saw the surgeon today that did Steve's surgery. All was good. The surgeon said to come back in 6 months but to keep sending all test that he has done at KU so he can keep up on what is going on.

Steve will probably only do blood work once a month as long as he feels good. She did say today that she want to keep an eye on his iron. He was slightly anemic. Not unusual after having a kidney taken out to be this way. Normal is 13 and he was slightly below 13. As long as he stays between 10 and 13 he won't have to get iron shots. Dr. Brown said this is normal and she is not worried but does want to watch the iron. We will see her again the end of April.

The next thing is another ct scan, which was what the plan was from the cancer doctor 3 months after surgery. So is going to get that done. Sometime in May he will have another ultrasound done on his kidney to see if the cysts have changed or any other issues show up. This will be done at KU. Sometime this week one of the doctors from KU will be calling with the results of all his test he had done last Friday. This is quite impressive now with all the doctors he has seen or will see.

Doctor B primary care
Doctor B Nephrologist
Doctor AJ Oncologist
Doctor L Urologist
Doctor H KU Urologist
Doctor W KU Nephrologist
Doctor G KU Cardiologist

You try keeping appointments straight with all these people and see if you are still sane. I don't believe he could be getting any better care.

Today was a long day. We arrived at KU at 6:30a.m. this morning and arrived at home tonight at 6:30pm. Steve started at the lab drawing blood this morning and urine. I think they drained him. They took 15 vials. At 7:30 they took him and did an echo cardiogram etc.., then about 2 hours later he had an ultrasound of the stomach. Next they started a stress test on his heart did some preliminary stuff and then gave him the nuclear shot and we had to wait 3 hours, came back and they scanned the heart again. Most everything that was done today was testing of the heart. We saw one heart doctor today. Dr. G and he talked with us a while and said he would call next week with the result of all the test. Most likely everything will be fine but he said there are a lot of people walking around with heart problems and they don't even know it. They have little or no symptoms. If something would be wrong they would have time to correct it before the transplant (2years away). That is why all these test are being done to make sure every area of him is in good shape.

We were impressed today at KU when they mentioned Steve's Nephrologist in St. Joe, Dr. Brown everyone praised her highly. KU has worked with her for years and had so many good things to say about her.

Our next appointment will be about what they call socializing with some of the transplant doctors, nurses and case worker. We will be doing this the first of April. We go and talk with them after watching a video about a transplant. We are suppose to watch the video and write down our questions. I sure hope there is not a test over this.

We still need all the prayers. Thanks so much and we will keep blogging it might not be as often due to a lot of time between appointments now which is a good thing. Gives Steve a break from this.

Love Steve, Christy & girls

Sorry I haven't updated in a while but there hasn't been any new developements. We are just waiting around until the next wave of appointments. Steve did have blood work done on Monday and we didn't call to get the results since this has been such a every week hassel with the lab. We decided this week if the numbers wére not good the doctor would call us. He is doing blood work every other week. For the most part he has been feeling food. He has a bad headache once in a while and still can't seem to figure that out. The doctor still thinks it is his blood pressure. We think he blood pressure has been really good now for quite a while. Through all of this he has become very good on the Wii. Yes we (I) purchased one the day after Christmas. Since then I think 5 new games have been purchased. His lastest game is flying airplanes(this is what he always wanted to do). Needless to say it keeps him out of my hair for a while. Steve, Triston, and Trey play the most. Blair plays quite often and Emily occaisonally. I have to addmit I have only played the thing 3 times since it was purchased only because Steve gets mad if anyone beats him. The first time I played Steve in tennis I beat him and we haven't played since.

Well it is getting late and I am going to catch some ZZZZZZ's.

Love to all and should have news by the April 1st. Take care.

Keep the prayers coming. Steve, Christy and girls.

We have the paper work sent back to KU transplant center and they are ready to start Steve with some testing at the end of the month, checking his heart, lungs, etc.... KU also called today to set up an appointment in April for us to come down. Not sure what this is all about. They have done this so much it is routine to them. KU did approximately 108 transplants in 2008, on an average 2 per week. We talk with someone from KU at least twice a week. All these conversations with them get me excited but this is part of the process. As far as we know it will still be 2 years before Steve will be cleared for transplant. We have a lot of unanswered questions but I am sure will get answers when we go to the appointments.

Steve's creatinine and potassium were both 5.0 this week. Up from last week. I'm know doctor but I think he is a bouncer. One week it is down and the next week it is up. So I predict next week it will be down. We should find out the whole blood work up at our next visit with Dr. Brown which will be the end of the month.

Keep praying it is working.

The Schmitz's

We are now compiling a donor list. If anyone is interested please send us your name. We have already had a few people talk to us about being a donor. I don't know why we just can get a kidney from one of his cows because some of them are really ticking him off and I'm afraid they may become hamburger. Starting to have baby calves regularly.

Steve is now going to do blood work every other week instead of every week. This next week Dr. B has added a wider screen of blood test(routine) just because its time and she would like to see all levels creatinine, potassium, fosfus, uric acid, etc.... I will let you know how the blood work turns out. Hope everyone is well. We are suppose to get 1 to 3 inches of snow tonight which we don't want.

The Schmitz's

Not much new information. We have started reading over the packet of papers and it is overwhelming. We will be getting them filled out and mailed back to KU. We would like to thank everyone who has followed Steve's progress. All the well wishers, prayers have helped tremendously. When we see Dr. Brown in about 3 weeks I am sure we will be talking more about dialysis. Don't worry if I don't post any info for a few days.

Love the Schmitz's

Monday at KU

Today we spent about 45 minutes with Dr. W the nephrologist. I think all in all there was some miss communication. Dr. W wasn't sure why we came to see him. After talking to us he said our Dr. in St. Joseph knows how to get to the transplant process. We told him that Dr. H referred us to him. Basically he said we didn't need to see him so he walked us over to the transplant unit. He was very nice and said if we had any questions to let him know.

Dr. Brown in St. Joe had sent all of Steve's information back in January, which we knew. We just hadn't heard anything and they said we would receive a packet in the mail which we never got. We talked with a case worker today and found out the person that was working his case has been sick out for a week and had also sent info to our insurance which prolonged everything. She gave us the packet of paper work and we brought it home today to start working on. They have to know everything family information, who his fourth cousin twice removed is, and the dog and cats name. Just kidding, we are glad to get the process started.

Now the down side, the doctor and the case worker both said with renal cell cancer the wait for transplant is 2 years. Bummer! They explained why. The drug that you have to take when getting a transplant can cause cancer to spread. So if any cancer reoccurred taking this would not be good. The doc said if the cancer was going to reoccur 90% of the time it would have done so with in a 2 year period, that is why the wait is 2 years.

So the next step is fill out the paper work get it back to KU, our next appointment with St. Joe is in 3 weeks we will talk more about dialysis with her and when she thinks we should start getting ready. KU and St. Joe both are pretty sure he will need dialysis before the 2 year wait is up.

For those of you who are impatient on finding out the news of today give me a break. I worked part of the day, went to KC for appointments all afternoon and got back 5 minutes before Blair's ballgame started. You know who you are. That is why I am doing this before I go to bed. You better stay up and read this. Just kidding. I hope this is keeping all of you informed. Keep the prayers coming I do think they are working. We both thank everyone for all the support. Now who out there has a kidney they want to donate, any takers?

Ok, we made it through another week. We are set up for Monday at KU with Dr. W, we will let you know what we find out about a transplant. We hope to have calm, quite and relaxing weekend. Sleep, sleep and more sleep. Right like that is going to happen.

Until Monday! I probably won't get anything posted until sometime Tuesday. All take care.

Steve did blood work on Monday on his birthday. He now actually qualifies for being older than dirt so what does that make some of you who are older? We celebrated by going to pizza hut with the girls and several family members and friends for pizza.

We waited all day for his blood work results. I had to call 3 times, third time was at 10:00pm and the creatinine was back down to 4.3 yeah!!!!

Today was a follow up with the urologist Dr. B. We spent about an hour with her going over everything from dialysis, to kidney disease, the big bad diet, his blood pressure, etc... You name it we talked about it today. Doctors have now become our hobby. New doctor, Dr. W was brought into the mix today. Dr. W is a Nephrologist at KU and Dr. H urologist referred us to him. Dr. W is a doctor that specializes in disease of the kidney and urologist specializes in the plumbing of the kidneys, bladder, urethra, etc... Our appointment with Dr. W is Monday the 23rd. Steve now has 5 doctors. We hope to learn more about the transplant proceedings. We just want to skip everything else and go straight to the transplant.

We are staying very busy, Blair with basketball districts approaching games 2 or 3 times a week and practice on the off nights. Emily is studying for nursing to take her boards for RN in May, Steve's cows are getting ready to have babies. I in my spare time (none) am trying to plan Emily's wedding (July 25th mark your calendars). My title is now administrative assistant. We just need a couple more things to do and we will be totally insane.

Oh one other thing Steve's doctor mentioned today to him was try and keep yourself well. We discussed wearing your seat belt at all times, don't get kicked by a cow, lose a very pounds, eat less protein etc... This shouldn't be to difficult.

You know what we know, well this is most of the good stuff....
The Schmitz's