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.