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
Friday, February 27, 2009
Thursday, February 26, 2009
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
Love the Schmitz's
Monday, February 23, 2009
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?
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?
Friday, February 20, 2009
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.
Until Monday! I probably won't get anything posted until sometime Tuesday. All take care.
Wednesday, February 18, 2009
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
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
Monday, February 16, 2009
This story is about my 49 year old husband who has had kidney disease for 20 years. In December we went for his yearly check up with his urologist Dr. B. She thought is was time that Steve had a biopsy to try and find out what kind of kidney disease he has. On December 11th he was scheduled for the procedure. The procedure was started with a ct scan, when he was slid into the machine to take pictures of his kidney's so the radiologist would know where to stick the needle for the biopsy a large mass was found on his left kidney. Further test were stopped for the biopsy. He was given an ultra-sound instead. People with kidney disease can not do ct scans or mri's with the contrast(dye), due to the dye causing kidney failure.
The ultra-sound results showed a large solid mass on the left kidney. Solid mass usually indicates cancer. He was then set up for a MRI with out contrast on the following Saturday Dec. 13th. The following Monday Dr. L (the surgeon) called and said lets get that kidney out on Wednesday Dec. 17. On the morning of 12/12/08 Steve had his left kidney removed. Dr. L came to the waiting room to tell me what he had found. He removed the kidney which is surrounded by fat and he did not see any of the cancer through the fat. The fat kidney and tumors (there were multiples) measured 13 inches and was sent to the Mayo clinic. The report came back that the cancer was encapslated (contained) and his type of cancer was papillary. Not the fastest and not the slowest growing of the 3 types of kidney cancer. It is number 2 of the 3. The kidney disease was IGA which Dr. B had suspected.
Steve's creatinine before surgery was 2.8 after surgery was 5.7. This was not surprising due to the right kidney taking over all function. For those of you who don't know what creatinine is, it is how the kidneys are processing waste. The higher the creatinine the less the kidney function.
Steve was released from the hospital on Dec. 22nd. He came home doing pretty well his midline incesion healing although, looking like an intersate on a road map. We were set up with an onocoligist Dr. A. He explained to us that there was not a specific treament for kidney cancer but wanted to recommend Steve for a cancer study with chemo by pill. We started down this path but all came to a halt as Steve was denied for the study due to he can not do CT Scan or MRI's with constrast. Dr. A still had us due total body scans of the head, chest, abdomen and a bone scan. When these were done they really took a close look at the right kidney. Dr. A believed that there was a small something on the right kidney. He wanted to do a biopsy right away. We were scheduled for a biopsy 4 days later. We called the Dr. B the urologist to let her know what Dr. A wanted to do and she begged us not to do the biopsy until we had talked with her.
The next afternoon we were in Dr. B's office. We have our total faith and trust in this woman. She asked us to please not do the biopsy because she had seen before a patient that had had this done, and cancer reoccurred where the needle was pulled back through the track. We thought this makes sense but what do we do now? She had the radiologist that she has worked with for 20 years read the scan. He did not feel that there was enough information indicating cancer to just go in and take the right kidney which would have left him on dialysis. So after talking with both doctors and the radiologist the decision was made to wait 3 months repeat the scan again to see if what they saw had changed at all.
In the meantime we visited the dialysis center to get educated because Steve's right kidney is only functioning about 17% and at some point when the kidney fails or it is determined cancer the kidney will be coming out. We also had a friend ask us about seeing his doctor at KU Medical Center in Kansas City. We kept ourselves very busy over the last 8 weeks with Christmas, several birthdays, our daughters basketball games (go Bluejays top ten ranked in 1A), friends and family. This is the kind of thing you can't get off your mind. Are you doing the right thing, are you seeing the right doctors, are we making the right choices.
One Saturday morning I picked up the phone and called Charlie O. (home town friend), I talked to his wife because he was not home. She gave me the number of the urologist at KU. I didn't think I would probably be able to get Steve an appointment although I am pretty persistant. So I asked Dr. B if she would refer him. She had no problem what so ever and made us the appointment. We saw Dr. H at KU Medical center on February, Friday the 13th. We had not had a lot of great news in the last 8 weeks. I am not superstitious but wondered would this day be more bad news.
The weather this day was awful, sleet, rain and snow. A perfect Friday the 13th. We made it to our appointment and liked Dr. H very much. He read all of Steve's reports and looked at the scan from he cd we had taken and said this. He would like for him to do an ultra-sound today of the right kidney. If it showed a solid mass, probably cancer, it it was a water filled cyst, just watch it. I was able to watch the ultra-sound and the tech told me if it is water filled it usually shows up black. It looked very black to me. Dr. H said he would call next week with the results. Also asked us if anyone had talked to us about a transplant? We said yes but was under the impression we would have to wait a least 2 to 5 years of Steve being cancer free before they would consider a transplant. Dr. H said "well that has kind of changed." He is setting us up with the transplant people and they will be getting in touch with us.
Dr. H called this morning with great news. The ultra sound showed a water filled cyst. We are waiting for the transplant people to get in touch with us. Steve is still doing blood work every Monday to check creatinine and potassium to make sure they are not too high. The potassium is still good but the creatinine is still climbing last Monday it was 5.8, highest it has been since surgery.
We want to thank everyone who has called, sent cards, prayed, stopped by, etc... I will do my best to keep you updated.
With all our love Steve, Christy and family.
The ultra-sound results showed a large solid mass on the left kidney. Solid mass usually indicates cancer. He was then set up for a MRI with out contrast on the following Saturday Dec. 13th. The following Monday Dr. L (the surgeon) called and said lets get that kidney out on Wednesday Dec. 17. On the morning of 12/12/08 Steve had his left kidney removed. Dr. L came to the waiting room to tell me what he had found. He removed the kidney which is surrounded by fat and he did not see any of the cancer through the fat. The fat kidney and tumors (there were multiples) measured 13 inches and was sent to the Mayo clinic. The report came back that the cancer was encapslated (contained) and his type of cancer was papillary. Not the fastest and not the slowest growing of the 3 types of kidney cancer. It is number 2 of the 3. The kidney disease was IGA which Dr. B had suspected.
Steve's creatinine before surgery was 2.8 after surgery was 5.7. This was not surprising due to the right kidney taking over all function. For those of you who don't know what creatinine is, it is how the kidneys are processing waste. The higher the creatinine the less the kidney function.
Steve was released from the hospital on Dec. 22nd. He came home doing pretty well his midline incesion healing although, looking like an intersate on a road map. We were set up with an onocoligist Dr. A. He explained to us that there was not a specific treament for kidney cancer but wanted to recommend Steve for a cancer study with chemo by pill. We started down this path but all came to a halt as Steve was denied for the study due to he can not do CT Scan or MRI's with constrast. Dr. A still had us due total body scans of the head, chest, abdomen and a bone scan. When these were done they really took a close look at the right kidney. Dr. A believed that there was a small something on the right kidney. He wanted to do a biopsy right away. We were scheduled for a biopsy 4 days later. We called the Dr. B the urologist to let her know what Dr. A wanted to do and she begged us not to do the biopsy until we had talked with her.
The next afternoon we were in Dr. B's office. We have our total faith and trust in this woman. She asked us to please not do the biopsy because she had seen before a patient that had had this done, and cancer reoccurred where the needle was pulled back through the track. We thought this makes sense but what do we do now? She had the radiologist that she has worked with for 20 years read the scan. He did not feel that there was enough information indicating cancer to just go in and take the right kidney which would have left him on dialysis. So after talking with both doctors and the radiologist the decision was made to wait 3 months repeat the scan again to see if what they saw had changed at all.
In the meantime we visited the dialysis center to get educated because Steve's right kidney is only functioning about 17% and at some point when the kidney fails or it is determined cancer the kidney will be coming out. We also had a friend ask us about seeing his doctor at KU Medical Center in Kansas City. We kept ourselves very busy over the last 8 weeks with Christmas, several birthdays, our daughters basketball games (go Bluejays top ten ranked in 1A), friends and family. This is the kind of thing you can't get off your mind. Are you doing the right thing, are you seeing the right doctors, are we making the right choices.
One Saturday morning I picked up the phone and called Charlie O. (home town friend), I talked to his wife because he was not home. She gave me the number of the urologist at KU. I didn't think I would probably be able to get Steve an appointment although I am pretty persistant. So I asked Dr. B if she would refer him. She had no problem what so ever and made us the appointment. We saw Dr. H at KU Medical center on February, Friday the 13th. We had not had a lot of great news in the last 8 weeks. I am not superstitious but wondered would this day be more bad news.
The weather this day was awful, sleet, rain and snow. A perfect Friday the 13th. We made it to our appointment and liked Dr. H very much. He read all of Steve's reports and looked at the scan from he cd we had taken and said this. He would like for him to do an ultra-sound today of the right kidney. If it showed a solid mass, probably cancer, it it was a water filled cyst, just watch it. I was able to watch the ultra-sound and the tech told me if it is water filled it usually shows up black. It looked very black to me. Dr. H said he would call next week with the results. Also asked us if anyone had talked to us about a transplant? We said yes but was under the impression we would have to wait a least 2 to 5 years of Steve being cancer free before they would consider a transplant. Dr. H said "well that has kind of changed." He is setting us up with the transplant people and they will be getting in touch with us.
Dr. H called this morning with great news. The ultra sound showed a water filled cyst. We are waiting for the transplant people to get in touch with us. Steve is still doing blood work every Monday to check creatinine and potassium to make sure they are not too high. The potassium is still good but the creatinine is still climbing last Monday it was 5.8, highest it has been since surgery.
We want to thank everyone who has called, sent cards, prayed, stopped by, etc... I will do my best to keep you updated.
With all our love Steve, Christy and family.
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