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
Thursday, May 28, 2009
Sunday, May 17, 2009
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.
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.
Monday, May 11, 2009
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
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
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