Last week came and went so fast. Dr. Alam made me a doctors appointment with Daniel Coyen, nephrologist, in St. Louis. We began to make all the preparations to go and watched the weather. Saturday morning we decided it was best to leave and try to stay ahead of the snow, sleet and rain. We were really surprised to find that the snow was worse here at home than it was almost all the way to St. Louis so Joe decided to take a detour to Bass Pro Shop in Springfield. When we got to St. Louis there was the snow and mounds of plowed snow.
We stayed at the Drury Inn downtown across from Union Station and we got there safe and sound. Sunday we awoke to snow flurries and slick roads. But laid around the hotel room until afternoon and we couldn't stand it any longer. So we looked up Cabellas, a big time sportging goods store for those of you who don't know what that is, plugged it in to the GPS and off we went. After about an hour plus in there, Joe decided we should start back. In normal weather it's about a 20 minute drive from our hotel but on that day it took us longer - a longer time than we wanted to be on the road. Cars were slipping and sliding and one in front of us went across all 4 lanes of traffic doing a 360 and never hit another car. My heart stopped and I never was so glad to get back to the room.
Monday we awoke to sunshine and above freezing weather. We hung around the hotel to about noon and then we took off to the medical center and were we impressed. Washington University Medical Center is a huge place, with building after building, hospital after hospital and lots and lots of people. We made it to the clinic where they have valet parking because there are so many people coming and going and it's just amazing! We grabbed a bite to eat in the hospital cafeteria and then made our way up to the 5th floor. We were there at 2 and my appointment was at 2:30. I registered and went immediately to leave a urine specimen, and pray tell, why did I go to the bathroom before we went to the 5th floor. It wasn't much of a specimen but evidently it was enough. When I came out, Joe said they had already called for me to go to the back so in in about 2 minutes she was back to get me.
I weighed (yuck) in, height measured and vitals taken and put in an exam room before 2:10. The nurse practioner came in to talk to us and tell us what all we could expect from the office and just how the visit would go. She no more got out of the room when a doctor came in. He wasn't an intern but he was a "fellow" training under Dr. Coyen. He had all my records, had gone over them, had questions for me concerning a lot of what was in the reports and in general. Then he went to meet with Dr. Coyen and they went over information and then they both came back into the exam room. Dr. Coyen is in late 40's or early 50's and very personable and talked to us with laymen language. He allowed time for me to ask questions and I had lots of them. We were out of there by 4pm - AMAZING!
The final outcome was basically what Dr. Alam had already told us. The diagnosis still stands. There is very little information on this disease because it is so rare and very little research done. The treatment is chemo or high doses of steriods - in other words kill my immune system. My kidney function, at this time, is not that bad, and he thinks doing something so drastic may do more harm than good. Since my main problem and concern is my high blood pressure. He said we must work on getting the bp down and holding it down because the longer it stays high the more damage to my body it can cause. He said he would work with Dr. Alam and the goal is to get a normal bp, watch the kidney function and the creatine level and until the kidney function starts to go down and/or the creatine level starts to rise we would not treat the disease. He said I might stay at this stage for years or it might start to change soon no one really knows. I looked at Joe and said leave it to me to get a rare disease and Dr. Coyen said well, it could be worse and we could name it after you. I told him I just didn't think "the Gay disease" would get it. He actually laughed really hard, looked at his colleague and said I think we already have a disease by that name! Oops! Yep we do!
I feel comfortable with what he had to say and confident with the decision to just watch the kidney function and to treat the high blood pressure.
Prayers, and there have been lots of them, have been answered. Our God is an awesome God!
I will continue to post and let everyone know what is going on.
Tuesday, January 25, 2011
Saturday, January 15, 2011
Saturday - January 15
Another week and what a week. We had a little snow, a little ice, a lotta cold and a couple of really pretty days. Today was sunny and above 50 degrees. We didn't accomplish a lot this week with an upcoming doctors appointment with the New York doctor. I saw my general practioner twice to have blood drawn and saw the kidney doctor this morning.
The news from Dr. Alam wasn't good but it wasn't too bad. I have done a lot of research on this disease and found out some of what I needed to know. It is incurable but treatable. It is in both kidneys and no one can pinpoint as to how long I've had it or when I will move from stage 3 to stage 4. We will have to keep an eye on the GFR rate and the creatinetine level. As those begin to rise the closer you get to kidney failure. So the key is to get a protocol set and treatment started. Dr. Alam wants to doctor in NY to set the protocol. He has put a call into Dr. Appel's office and left my name and number but they have not called me. He's going to call again on Monday and said if I have not heard from either Dr. Appel or the doctor in St. Louis by Wednesday to call him back. So here is another week of hurry up and wait. I am not a patient person nor do I not like to be in contol but this may teach me both. Aha!
I was really down yesterday and needed a grandkid fix. We picked our Rachel up after school, she's 15, and then we all went out to see the others, Kelton who is 14 and Josi who will be 13 in 2 months. Then when we took Rachel home we saw Zared who will be 20 in a month. So I had my grandkid fix and that helped the "blues".
Started on my Hawaii scrapbook this afternoon. So I should finish it really soon and then I'll start on Rachel's. She's going to be 16 in September and I'm working on one of her life. May take me that long to get it completely done. We have thousands of pictures and I've got to pick out just the right ones.
So better get busy. Have a good one.
The news from Dr. Alam wasn't good but it wasn't too bad. I have done a lot of research on this disease and found out some of what I needed to know. It is incurable but treatable. It is in both kidneys and no one can pinpoint as to how long I've had it or when I will move from stage 3 to stage 4. We will have to keep an eye on the GFR rate and the creatinetine level. As those begin to rise the closer you get to kidney failure. So the key is to get a protocol set and treatment started. Dr. Alam wants to doctor in NY to set the protocol. He has put a call into Dr. Appel's office and left my name and number but they have not called me. He's going to call again on Monday and said if I have not heard from either Dr. Appel or the doctor in St. Louis by Wednesday to call him back. So here is another week of hurry up and wait. I am not a patient person nor do I not like to be in contol but this may teach me both. Aha!
I was really down yesterday and needed a grandkid fix. We picked our Rachel up after school, she's 15, and then we all went out to see the others, Kelton who is 14 and Josi who will be 13 in 2 months. Then when we took Rachel home we saw Zared who will be 20 in a month. So I had my grandkid fix and that helped the "blues".
Started on my Hawaii scrapbook this afternoon. So I should finish it really soon and then I'll start on Rachel's. She's going to be 16 in September and I'm working on one of her life. May take me that long to get it completely done. We have thousands of pictures and I've got to pick out just the right ones.
So better get busy. Have a good one.
Sunday, January 9, 2011
Let It Snow, Let It Snow
Yes, I am saying th "S" word - mainly because I don't have to fight the weather to go to work. I don't have to drive in it and can stay in, stay warm and do what I want to do - what is mainly what I did today.
I made cookies today and used Splenda because Joe will eat the 3 dozen before I could turn around. He's been fighting his diabetes and really trying to watch it. I'm afraid that he will have to go on insulin shots instead of the pill soon.
I love being retired and doing what I want to do when I want to do it. If I had known that retirement was this much fun, well, it's almost like grandkids - I would have done it first! ha! But we're settling in being together 24/7 and actually enjoying it. Now that winter is here we better enjoy one another because getting out every day want be an option.
Our son John called last night about 8. He'd been here earlier and had dinner as he and his dog had been fishing all day. I could tell when I answered the phone I knew something was wrong. He said "Mom" and then began to cry. Now he may be my baby at 41 but when your child cries, no matter what the age, it rips your heart out. As he pulled into his driveway his 6 year old cat, Grady, who had been his bed partner for 6 years and best friend, jumped in front of the truck and he ran over him and killed him. His heart was broken and his kids weren't with him, so his dad and I took off and went and spent time with him. Today he had to tell the kids and bury him so he had to go thru it again. Haven't heard from him tonight but having the kids there will help him. He's such a good dad!
Guess tomorrow I'll set up the scrapbooking and get to work on Rahcel's book.
Have a great week and I'll stay in and stay warm......
I made cookies today and used Splenda because Joe will eat the 3 dozen before I could turn around. He's been fighting his diabetes and really trying to watch it. I'm afraid that he will have to go on insulin shots instead of the pill soon.
I love being retired and doing what I want to do when I want to do it. If I had known that retirement was this much fun, well, it's almost like grandkids - I would have done it first! ha! But we're settling in being together 24/7 and actually enjoying it. Now that winter is here we better enjoy one another because getting out every day want be an option.
Our son John called last night about 8. He'd been here earlier and had dinner as he and his dog had been fishing all day. I could tell when I answered the phone I knew something was wrong. He said "Mom" and then began to cry. Now he may be my baby at 41 but when your child cries, no matter what the age, it rips your heart out. As he pulled into his driveway his 6 year old cat, Grady, who had been his bed partner for 6 years and best friend, jumped in front of the truck and he ran over him and killed him. His heart was broken and his kids weren't with him, so his dad and I took off and went and spent time with him. Today he had to tell the kids and bury him so he had to go thru it again. Haven't heard from him tonight but having the kids there will help him. He's such a good dad!
Guess tomorrow I'll set up the scrapbooking and get to work on Rahcel's book.
Have a great week and I'll stay in and stay warm......
Friday, January 7, 2011
Another Week Gone by
Here it is the end on the first week of 2011 and things haven't slowed down a bit. Tuesday and Friday I went to my general practioner to have my potassium level checked. It checked out all right so hopefully, Dr. Alam will be satisfied when I seen him on the 15th. I called his office today and no word on whether or not he's talked to the NY doctor so guess I'll have to wait until the 15th to see.
Joe saw the GP Tuesday as he had been having some problems and his creatine level came back high and they want him to see Dr. Alam. Now, wouldn't that be interesting if we both have the same rare disease. They can't get him in until March so maybe on the 15th we can bend his ear on Joe.
I was sick most of the week with just a plain head cold but it seems to have subsided alot today. Saw the pharmacist at Walgreen's on Wednesday and asked him what over the counter med I could take with all the other meds I took. Her commended Coricidrin and it worked in 2 days. Feel better today than I have all week.
Took my friend Pam to the doctor today. She had hand surgery and even though she's a lefty, it's amazing how much she does with her right hand...like buckling the seat belt - so I drove her. They took the stitches out but put her in a hard plastic splint and she still can't use her hand until she goes back on the 25th.
We've got snow moving in the first of the week...anything from 3 to 5" the weathermen keep saying. I think it's time I pulled out the scrapbooking "stuff" and start on Rachel's (granddaughter) birthday present. She'll be 16 in September and I'm planning on doing a scrapbook of her life. Started it once but it was too much trouble and now that I'm retired I've got the time to get it all together. Will just set up the card table in the back bedroom and let it stay there until I get the book finished.
Will stay on top of posting as well. Safe and happy days ahead.
Joe saw the GP Tuesday as he had been having some problems and his creatine level came back high and they want him to see Dr. Alam. Now, wouldn't that be interesting if we both have the same rare disease. They can't get him in until March so maybe on the 15th we can bend his ear on Joe.
I was sick most of the week with just a plain head cold but it seems to have subsided alot today. Saw the pharmacist at Walgreen's on Wednesday and asked him what over the counter med I could take with all the other meds I took. Her commended Coricidrin and it worked in 2 days. Feel better today than I have all week.
Took my friend Pam to the doctor today. She had hand surgery and even though she's a lefty, it's amazing how much she does with her right hand...like buckling the seat belt - so I drove her. They took the stitches out but put her in a hard plastic splint and she still can't use her hand until she goes back on the 25th.
We've got snow moving in the first of the week...anything from 3 to 5" the weathermen keep saying. I think it's time I pulled out the scrapbooking "stuff" and start on Rachel's (granddaughter) birthday present. She'll be 16 in September and I'm planning on doing a scrapbook of her life. Started it once but it was too much trouble and now that I'm retired I've got the time to get it all together. Will just set up the card table in the back bedroom and let it stay there until I get the book finished.
Will stay on top of posting as well. Safe and happy days ahead.
Sunday, January 2, 2011
Happy New Year
This is my first attempt at blogging but I love reading my daughters blog and thought this would be a great time to start one. I've just been diagnosed with a very rare kidney disease and what better way to keep up with what's going on than to blog.
My nephrologist has recommended I go to NYC to see a world renowned nephrologist who specializes in this disease. Now it's time to pray that he can see me within the next 3 months. If not, the 2nd best doctor is in St. Louis. That's only a 4 to 5 hour drive from here. Although I've always wanted to go to NYC, I didn't plan to go in the middle of winter or under these circumstances but will go at the drop of a hat.
But for now everyone have a great 2011 - wow! and much good health and happiness to all.
My nephrologist has recommended I go to NYC to see a world renowned nephrologist who specializes in this disease. Now it's time to pray that he can see me within the next 3 months. If not, the 2nd best doctor is in St. Louis. That's only a 4 to 5 hour drive from here. Although I've always wanted to go to NYC, I didn't plan to go in the middle of winter or under these circumstances but will go at the drop of a hat.
But for now everyone have a great 2011 - wow! and much good health and happiness to all.
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