In this case "no news is not good news". We do not have any new news to tell. Steve is getting very frustrated. We have checked with another hospital in KC about the girls being donors but they pretty much told us that if they were rejected by KU they would probably do the same. We also found out that my current insurance would not cover a transplant at St. Lukes Hospital. Everything but a transplant. It would be covered at KU. So it looks like I am switching insurance the first of the year.

Dialysis is still going good. He gets so stressed and frustrated being tied to dialysis for 3 hours everyday and I have to admit my patience has worn thin also. Steve has developed restless leg syndrome which can happen when someone is on dialysis we have learned. Also he has started itching when he gets on dialysis, docs think the leg thing and the itching are all related and have given him a medicine to try. He is just starting on it today.

We are pretty much home bodies, and he doesn't like that but for the most part it doesn't bother me. I can stick my nose in a book and I'm happy. He watches a lot of TV when he is on his machine and it does get old. We just do what we have to do to keep this going until we get the call. Blair my baby is starting basketball the week after Thanksgiving her last year and we are going to miss it. Although she has had a couple of schools call her about playing next year for them. She is going to also go into nursing as Emily has done and she doesn't think she can play sports at the college level and keep up with the nursing school but she has this year to think about it.

Jennifer works at Kawaski during the day and her and Tom are on the rescue squad, Emily is a registered nurse and has recently changed jobs from the OB unit at St Francis to a job at Nodaway County Health. Blair is pursuing a nursing career. I guess Steve or I should have been a doctor. LOL!

Happy Thanksgiving to all.
Love Steve, Christy and family

Well still waiting for a kidney. We have not heard anything. This is getting frustrating. We both wish they would have never told us he would get it this summer.

Dialysis has been on a weird schedule. Emily is now working at her new job and works day time hours so she is not available to do dialysis during the day. Gary Meyer and Steve Henry were going to get trained but Steve Schmitz has to go also and be the patient that they learn with. Well he didn't have time to do that. They are right in the middle of harvest. If the weather holds out for another 10 days or so they will have a good part of the crops out.

Blair's softball team lost tonight so they are done. She has played her last high school softball game. Her basketball coach from last year called me tonight to see how they did and wanted to know if softball was still going or did basketball season start. Basketball is on the radar now.
We have to get a different schedule going with dialysis for this fall and winter so we can make it to Blair's basketball games. I can't get home from work in time to get him started and get off to go to a game.

I guess it will all work out, it usually does. This is starting to wear on both of us. Keep us in your prayers.
Love Steve Christy and Blair

I called KU today and talked with our coordinator to ask if Steve should get an H1N1 vaccination or not. Wendy said we should talk with our kidney doctor about this. She said he would not be able to get if for a while after his transplant at least 90 days.

Steve's status on the list has not changed much. We still send a blood sample at the beginning of each month for tissue matching. He has not come up in the top ten yet and Wendy when he does she will call us.

We are going to have to work out another schedule with dialysis in about a month so he can harvest. We are recruiting my mom, Steve's dad, maybe a brother-in-law and an aunt to hopefully do this. He wants me to put him on before I go to work around 5:30a.m. and have someone else take him off. Technically he is not suppose to do this without someone with him. Of course Blair will be her but, sleeping. I'm not real comfortable about this but we will see how it goes.

Emily has had a dream twice that he got the call that he is getting a kidney, so it must be coming. We need prayers for a kidney.

Help us keep up our faith. Love the Schmitz's

I know it has been a long time since I posted anything. To tell the truth the only thing that is going on is waiting, waiting, waiting...... We try not to dwell on when Steve will get a kidney. July 13th he was number 16 on the list, 15 people above him. The coordinator said she thought it would be this summer. Summer is coming to an end.

They tell us holidays are the busy times for transplants. People do more traveling and have accidents and this is where the kidneys come from. Hard for them also hard for us to think it is someones tragedy that keeps you living.

Steve's monthly visits to the dialysis center are good. All his numbers are good. The dialysis at home has gone pretty well. Our biggest problem now is finding a time to do this. Blair has started softball again and her games start at 5:00pm. We may have to work out something different so we can get to the away games on time. Emily got a new job and will be starting it the first of October. She was working evenings at St. Francis Hospital and was able to get Steve on the dialysis on the days when we have games and I took him off but that is going to change since she will be working days now.

We hope to hear from KU soon.

Steve, Christy & Blair

As you have probably heard by now Vickie and Linda were both rejected at KU. They had all there test sent over to St. Lukes and reviewed. At St. Lukes they said they could be possible donors. Steve would need to send his records over so they could go over his stuff.

After much thought he has decided for now to stay at KU and wait for a cadaver kidney and the reason for this is. We do not know the unknown and both of the girls having blood in their urine and find no reason why we think it might be risky. We dont need to put them at risk now or down the road by taking a kidney from them and really not knowing why the blood is there. Steve appreciates their generosity very much but he has decided to wait.

The transplant coordinator and Dr. Winklehoffer both talked to me on the phone this week. They tend to error on the side of caution with live donor transplants with the blood in the urine. They did tell us that their is approximately 16 people a head of Steve on the list. So hopefully it will happen sometime this summer.

We are doing pretty good with the home dialysis and his blood work is good also. He is now using 25 liters of dialasate with each treatment. This keeps moving up to make sure he is getting enough dialysis.

This is all for now. I hope the next time I blog I am letting you know we are at KU getting a kidney.

Christy

Steve received his official letter this week that he has been activated on the transplant list. The letter said he had 14 months of time already accumulated. It also said he would need to start sending blood once a month to the lab. They have to have a current blood drawn on file each month so when a kidney comes in that can do the matching. He is doing a nuclear er heart test this week. Same thing he had done a year ago just has to be updated. I don't think astronauts do this much testing. So I guess now we wait for a call that it is his turn to get a kidney.

Linda and Vickie have sent all there test results to St. Lukes and are waiting on a call from them to see what they think about possible donors. I did get on a website that was given to me by a case manager through my insurance and it gives you numbers for success rates for transplant centers in the United States. Very interesting. Midwest seems to have the shortest waiting time and KU and St. Lukes success rate is within 1% of each other. KU has done more kidney transplants but looks like both are good hospitals.

We are waiting for a call to tell us they have a kidney for Steve. Hoping and praying this happens this summer. Keep up the prayer support. Seems like a snail pace but we are making progress.

Steve & Christy

Steve had an appointment yesterday at KU. We talked about the cancer in this kidney and it was approximately the size of a marble, Dr. thought had not been there long at all. The surgeon released him. We then walked over to the transplant office and talked with Wendy our transplant cooridnator. She said she would now activate Steve. He has been on the transplant list since April of 2009 and has been building points. Which means he has 14 months of time already accumulated. She says the average weight for a kidney is 16 months. She says she can't say for sure but she thinks he will get a kidney sometime this summer. We can only hope. He is scheduled for some heart test just to keep everything up to date for the big day.

Prayer, prayers, prayers...

Christy

We did not get good news today. Linda was also rejected due to blood in her urine. Both Linda and Vick have been rejected as donors. I have made a couple of calls to KU and St. Joe today. Waiting to her back from them. Right now don't know where we go from her. We are trying to be positive, these things are happening for a reason. Just don't know what it is yet. Maybe trying to make us have better patiences. Will let you know more when we find out anything.

A new week. Vickie is going to the urologist this week to see what they say and possibly go also to Steve's Nephrologist. We will wait and see what the urologist has to say.

Today was the first time Steve has really noticed fluid he said his hands were tight. He is really trying to watch what he eats and drinks. We got his first blood work results back this week since removing his other kidney. Potassium and phosphors were both up a little but that was to be expected since he is recovering from surgery. He is doing dialysis 6 days a week but they had to up his solution from 20 liters to 23 to get better numbers when doing the blood work. His iron stores are back down and so was his hemoglobin. He will get epogen shots twice a week to keep the hemoglobin up and a dose of iron through IV when he goes to his next dialysis check which will be next week. No big suprise. Everything has to adjust now and things should balance out. The food and fluid intake is very important now that he does not have any kidneys.

The up side if there is an upside. No getting up in the night to pee, no stopping when traveling to pee, etc... Now we have to make him stop when we have to go.

Linda will start her test Thursday and Friday. Hopefully Friday we will have some good news.
Keep the prayers going that Linda will get through all her test.

Christy

Vickie has been getting tested to be a donor for Steve. She did some testing on Monday and went back again today and everything was going good they said she was a perfect match. She has had several test and all looked good until today. They discovered blood in her urine. This brought all test to a halt. She is not completely out yet but she has to find out why the blood is showing up. She was very upset, she was ready to do this. She now has to see a urologist. Steve's urologist in St. Joe said he would be happy to help so she is going to set up an appointment with him. They have already looked at her kidneys and said they look good. Steve's urologist said blood shows up sometime for no reason doesn't mean anything is wrong. So the transplant coordinator is calling Linda and she is going to start her testing now.

This is why I have always said this is like a rollercoaster for eveyone. We are still hoping everything will turn out ok, but we will just have to wait and see. Hurry up and wait.

Not much more to tell you but hope to have good news before long.

Christy

As you probably figured out we are home. Steve was able to be dismissed from the hospital on Sunday. It was a long ride home but we made it. Tiffany and I took Blair to the oral surgeon Monday morning and she had all 4 wisdom teeth cut out. No picnic, she looks like a chip monk with purple cheeks. All 4 were impacted so it is just as well they all came out. She is doing ok. Pain killer and ice are her favorites right now. Jayce came to see us Monday afternoon when she got out of the hospital with her broken arm. She has a beautiful hot pink cast. She has calmed down quite a bit. The real story came out. Trey and Jayce took the mattress off Trey's bed and put it on the floor. Trey convinced Jayce to climb to the top of his dresser and jump off. When he found out that her arm was broke he thought he had killed her. Jennifer reassured him that she was going to be ok. Tom thought our house was like a nursing home, too many sick, injured people that needed attention.

We did get some unsettling news today. Steve's doctor called and said the test came back. They found cancer in this kidney also. The urologist that did the surgery talked to the Nephrologist that we will be working with and have talked with several times. They both agreed they think he can still go forward with the transplant. They did say that they are not the only ones that is making these decisions but they felt like we could proceed. The cyst that they have been watching was not cancer. It was on the back side where it didn't show up. Sounds like before, your kidney is in cased in fat and the cancer was still inside the fat on the kidney. So, not sure what the next step will be but we have a follow up in month with the urologist. Hopefully his sisters can go ahead with their testing for matches.

Please keep Steve in your prayers.

Posted 5:30a.m.
When it rains it pours. Tom and Jennifer called me at 11:00pm last night to tell me they were headed to KC Childrens Mercy with Jayce. She broke her arm and the doctor in Maryville said it would probably need surgery. It is broke at the elbow where the growth plate is. They got to the hospital around 12:00 and they are planning on doing surgery today at noon. I got to talk to Jayce on the phone she was jumping and broke her arm. She seem pretty ok with it.

I am headed to the hospital to tell Steve about Jayce. Thought I better wait until morning.

Christy

Posted 10:37pm
Steve was able to get a room on the floor today. ICU kicked him out they needed the bed for someone worse than him. He is not a happy camper and I can't say I blame him. His room came with a roommate that was very noisy.

Now he wished he would have just come home. He is doing pretty well. He was taken off his pain pump this morning and started taking oral pain meds. They have worked pretty well today. He thinks this surgery was as bad as the other one when they took the first kidney out. I told him this was better because the pain was under control better. Last time he was cut from top to bottom, this time he has 3 poke holes and about a 4 or 5 inch incision.

He was up and walking 3 times today. The last was about 5:00pm and he didn't feel good after that. I think he probably is pushing it a little too much. The hospital has been so full there is not enough beds for everyone so if things go good the next 12 hours I am thinking he will be coming home tomorrow.

We should here something next week about the kidney they sent off, they don't think it has cancer but they have to be sure. He is suppose to heal for 6 weeks and then I guess he will go from there. His creatinine is on the rise but they don't seem to be to worried about it. He had dialysis yesterday and today and he is suppose to skip tomorrow. That was an ordeal. I was very surprised, they don't seem to be as far a long as the center in St. Joe. They couldn't believe we do hemo home dialysis. Steve and I knew more than both the techs we have had the last 2 days, don't think that wasn't scary. Steve had to throw a little fit to be able to stick his self for the treatments. They weren't going to let him. Our diaysis instructor in St. Joe told him to never let anyone else access the fistula in his arm except himself. He threw his fit and we won.

I am tired so going to bed, will try and blog sometime tomorrow. Please keep praying that the transplant is in our very near future.

Love to all Steve and Christy

Posted 10:45a..m

I called ICU twice once at 2:00a.m. his nurse was great she said he was resting comfortably but his heart rate was low. She had called the doctor and he said it was ok. I called again at 5:00a.m. his nurse was not available but another nurse said he was doing fine. What else are they going to tell you that he is in terrible pain.

Blair and I could not get in to ICU until 8:30a.m. this morning. When we got to his room he was sitting up in the chair, pain was better but he had been vomiting. They had given him zofran twice and it didn't seem to work. They changed the med for nausea and now he is resting comfortably.

3 doctors have been in today. They are going to do dialysis today and hopefully that will help get rid of the anethsetic and make him feel better. Probably do dialysis today and tomorrow. They have him on fluid restriction now and did not give him much at all during surgery. 1 1/2 quarts per day is probably what he will be limited to. He is still in ICU, still no rooms available.

posted 12:o4a.m.
Today was hard. Steve and I, Blair, Tom and Jennifer got to the hospital about 1:00pm today. Emily had to work today she is coming down tomorrow. It was a little tough knowing that they were going to remove something that he was born with and have to have. Really scary!

Steve went to surgery at 4:45pm, he got out about 7:45pm. Everything went as expected they were able to remove his kidney laproscopic. Doctor is great but it was hard to leave. The hospital was full no rooms available. The doctor told me he would either spend the night in recovery or in ICU only because no rooms are available. He got ICU so of course we got to see him twice then they kicked us out. Only place I have ever been kicked out of.

His pain was bad when I saw him in recovery and finally they changed the meds and he got a pump. The next time I saw him it was a lot better. My plan is to call during the night. They gave me a number and the nurse was very good.

Time to get sleep, tomorrow will be here soon.

I missed posting anything in April, sorry!

This is the latest. Steve will be getting his remaining kidney out May 20th. They hope to remove it laproscopic with 3 holes and small incision. If for some reason they are not able to do this due to scare tissue from the first surgery they will have to make a large incision again same as first time.

This is the next step. Scary but has to be done before he can get a kidney. Once the kidney is tested and comes back with no cancer (which they don't think it has, just cyst) he will be activated on the transplant list. After the kidney is removed at least 6 weeks to heal, no heavy lifting for 4 weeks. After that we don't know. We have to put our trust in what they tell us do this, then this and hopefully the kidney transplant is not far off.

Two of Steve's siblings are being tested to see if they are a match. They have just started into the beginning testing and we are assuming more will be done as soon as he is activated.

The dialysis has gone pretty well. We had one little scare last week. He tried to take off too much fluid and starting cramping bad. I did the protocol for cramping but it didn't work, so we did it again and finally the cramps in his legs started easing up. It took Blair and I both to get this accomplished. I was about ready to just stop the treatment but things finally turned around. This made me very nervous.

He is now only taking 1 blood pressure med. Use to take 3. His blood pressure is lower than I have ever seen it sometimes I think it is too low. We asked the doctor about this because a lot of times it is running 90's over 60's when he is doing a treatment. This is when you run the risk of passing out. If this happens, I will freak. As long as he is not dizzy she says it is ok. Define dizzy!!!

I will try and do better about keeping this updated. There should be more to tell now the ball is rolling. Until next time. Pray for him and that this surgery goes well.

Steve & Christy

To bring everyone up to speed on what is going on with Steve.

Still doing dialysis at home and is going a lot better. Had a rough couple of weeks but have ironed all that out. We have been talking with the transplant coordinator and his siblings are being tested. The criteria is can not be on blood pressure meds, blood type needs to be O doesn't matter positive or negative and you can not be over weight. All of them got a good laugh out of that. Linda and Vickie were trying to see how much they could eat so they can gain some weight. Karen was knocked out right away because of blood pressure meds, David is not a candidate because of previously having kidney stones. So it looks like Linda or Vickie will get to be worked up for a match.

If they flunk I will be polling for more candidates. What is the going price for a good kidney these days.

Later Christy

At the end of last week were waiting on a call from the transplant coordinator at KU with the answers to some questions we had since the the last CT scan of Steve's kidney. She did call us back and this is what she said.

His remaining kidney does have to come out before he can be transplanted (originally thought could be done at the time of transplant). It will be taken out laproscopic. The coordinator says we need to get this scheduled.
Once the kidney is taken out and sent off and it is determined nothing wrong other than cyst (no cancer) he will be activated on the list. KU keeps telling us he will go right to the top of the list.

I asked the coordinator when do we start testing donors and she said she would call the doctor with this question and give us a call back. I am hoping to hear from her this week.

I do not know the ends outs of the testing yet but any of you who would like to be poked and prodded please email me. They may just want to do siblings first I am not sure. When I find out I will let you know.

Steve and Christy

It has been a while since my last post. No news is good news. Nothing really has changed since the ct scan with dye except Steve turned the big 50. The girls and I planned a surprise bash for him a few days before his actual birthday. We pulled it off.

The girls decorated the hall made food and got everyone there surprise him. The 3 days before was the worst stress for me. I just kept thinking someone will spill the beans. The day before he was working cattle and stabbed himself with dirty cattle syringe in the leg. It was very painful and Blair wanted to know how in the world he could have done such a thing. I finally got him to the ball game that night but it took 3 guys to get him back to the car after the game. The next day Saturday the day of the party he really wasn't much better. I kept thinking all day he is going to tell me we are staying home tonight.

Emily and Alan had the perfect plan. They had given him tickets to a steak supper that week. Have you ever heard of Steve turning down steak. As the day progressed on him didn't seem to feel any better. I had worked out a back up plan with friends if he didn't want to go to the steak supper. All went fine, we went to church and headed to the steak supper. Him being grouchy and my nerves just about shot. We pulled up in front of the building and I helped him get to the door, opened it so he could go inside and everyone yelled surprise. We got him good. My legs were shaking so bad walking to the door of the building its a wonder I didn't calapse.

Lots of family and friends attended. It was a great time.

Not really any news from our doctors, just keeping appointments and check ups. Dialysis at home is pretty good but somedays it is very trying. Emily has helped him stick his arm a few times. Sometimes it is just hard to get it in the correct spot. We have some appointments coming up, just routine but I will make sure if the stork brings us a kidney all of you will be the first to know.

Take care and happy spring, it is coming isn't it?

Christy

We went to KU last Friday and Steve had a CT scan with contrast. The scan shows that the spot on his other kidney is only a cyst. No solid material so the doctor is pretty sure it is a cyst. We plan on calling them in a week. This doctor was going to talk with some other doctors about the transplant and hopefully we can keep this moving along.

He had an appointment today a the dialysis center and it went very well. His dialysis is going so good at home that he can cut back 1 day. 5 out of 7 instead of 6 out of 7. All is numbers looked great.

No major appointment coming up we will just keeping doing dialysis.

Hi everyone,
Hopefully we are in the last week of training of dialysis. We think Friday they are going to let him go. Hurrah!!!! He started sticking him self this week with the blunt needles. It has been going pretty well. Emily has gone with him 2 days this week. We are hoping Friday is graduation day and we will be doing this at home all the time. They removed his catheter Monday and are only using the fistula in his arm.

We have had a lot of trouble with our machine at home. There is a number for technical support and we talk with them every other day. They are still working the bugs out of it. It is getting pretty frustrating. We are hoping this starts going smoother.

I am going to cut it short. Keep praying for a kidney soon.
Steve, Christy & Blair

I know it has been a while and I am sorry, we have been so busy. Blair is playing ball and we have been enjoying going and watching her play (Go Bluejays). They lost their first game last night. Championship game in the South Harrison tournament. 2nd place is still good. Blair got herself a nice shiner on her eye. Three girls went for the ball and one of her team mates head hit her cheek. You talk about a goose egg instantly. She had to set out the 3rd quarter and went back in in the 4th. I took her the next day (Friday) to have it looked at. They xrayed her face to make sure it wasn't fractured. The swelling is going down but she is black and purple. She really looks bad. Way to use your head Blair.

As for Steve he is doing pretty well. This week he will be training to stick him self with the needles. Training to access the fistula has been a long process. We started with this Nov 10th and are still doing it we don't think it will be done until the end of the month. Others have taken him so I can work. Thanks to Don, Seth, Kurt, Gary, Mike. Emily has come to the house and got him started and I finished it when I got home from work. It has helped me out a lot. I left him in the hands of 3 people the other day to get the dialysis started and when I got home they were laughing and alarms were going off on the machine. I can't leave him with anyone. It is going to probably take another 2 weeks to get this completed.

We went to KU for a visit with the Nephrologist on the transplant team and talked with him. He was surprised to see us. We said we had not heard from them so we decided to come see him to find out where we stand. He was very nice and walked us over to the transplant unit. We met our new case worker. They have had turnover in this department and we think this is why we have not heard from them. She introduced herself and actually Steve's record and chart was in her stack of transplants and not too far into the pile. The doctor said they would discuss Steve's case again soon but he would probably have to wait the full 2 years before transplant. We are scheduled for the first of February for the CT scan with contrast and discuss a time to take out the other kidney. Now seems to be do dialysis, and wait. Hurry up and wait. It was a year December 17th since he had surgery. We don't want to wish our lives away but we are hoping 2010 goes quickly.

I will try and do better about blogging on this thing.
Love Steve, Christy & Blair