Thursday, March 3, 2011


It's been a while since I posted so I've got some catching up to do.  After the rise and fall of the potassium scare I had 2 fainting issues.  Once I was standing in the kitchen and down I went and the next one was the next day while my friend Pam and I were shopping.  Scared her to death.  So 2 weeks ago my general physician called my heart doctor and he had me go to the hospital.  There they did a nuclear stress test and after getting injected with the radiation and glowing I made it 8 minutes on the treadmill.  That alone liked to have killed me.  Then last week I went back for an echocardigram.  Today I saw the heart doctor and guess what - MY HEART IS NORMAL.  That's what they say but with all the incidents they are going to talk to the kidney doctor to see about doing a heart cath to make sure.  I could be just having some rhythm problems due to the rise and fall of the potassium.  But the heart cath medications does damage to the kidneys and before we do that the heart doctor wants to check with the kidney doctor.  We don't want to do anything to bring on more damage to the kidneys.  So again we hurry up and wait.  I see Dr. Alam on Tuesday and the heart doctor is sending his report to him.   I swear I wasn't this sick when I worked.  I guess it's because I have the time to think about it.  Other than just being tired all the time I really haven't had anything else going on...for an entire week.

Well, going to bed and getting ready to enjoy one more pretty day tomorrow.  The weather here has just been beautiful and the sunshine has been great!

Take care and I'll keep you posted.

Saturday, February 12, 2011


Saw my  kidney doctor this morning.  After such a terrible week and the hospital stay due to the high potassium, it has come back down to a normal level.  But the kicker is I've got to go back on the blood pressure medicine that made it shoot up so high in the first place.  My blood pressure is down and has been down for 2 weeks with the exception of the jump because of the high potassium scare.  I guess it's going to be a problem for a while and blood testing 2 times a week for another month to make sure it doesn't jump back up.  Then when it does we'll go thru it all over again  I know I am not I eating another banana.  Never liked them in the first place but I tolerated eating them because the potassium was low!

And the second hallejuah is the sun in out and has been for 2 days and above freezing both days so it's slowly slipping away.  By Thursday which will be the week anniversary we had -20 we are suppose to have 73!  The joke is "In Arkansas if you don't like the weather just hang loose it will change".  But I'll take 73 in February any day!

Last night we took our first born grandson out to dinner for his 20th birthday!  I know somewhere during that time he had 19 other birthdays but I sure thought he was still around 5 years old...oh, they tell me that's the way I treat him.  He'll always be my baby and he'll get his birthday card, Valentine card, Halloween card and his Christmas stocking as long as he's my grandson.  And of course the cards have that proverbial green stuff in it...started with $5 then went to $10 and now it's gone up again.  I have 4 grandchildren and they all look forward to their "cards" .... I may be old but I ain't no old fool cause I know it's not the card but what's in the card they want.

So with those words of wisdom, I'm saying "goodnight, Gracie" and off to bed.

Tuesday, February 8, 2011

You Won't Believe this!

Monday I went to Dr. Hannon to get my blood work done.  Been going twice a week but the potassium was coming up so they cut it to once a week and naturally with the bad weather last week I didn't go in.  So Monday morning we were there bright and early.  Had a great day, we ran errands, had lunch out, went to Victory Walk where we volunterr with people who have spinal Chord injuries, to help those guys out, stopped by to see my sister at work, went by to see the guys at "my" office and then picked Bobby, my brother in law, up at dialysis.  Had a great afternoon and was feeling great.  Came home and we were going to pick up our friend Joy and go to a family  funeral visitation of a guy we use to work with.  Were just walking out the door when Dr. Alam's office called and said "go immediately to the hospital ER and he will probably admit you.  Your potassium is way too high".  Scared the pee jeevies out of me and you can imagine what it did to my blood pressure.  Well, we get there at 5:45 and sign in.  Have to wait about 15 minutes before the admitting person called my name and then all she did was take vitals.  Then had to go sit and wait for about an hour before the triage nurse called us to her office where all she did was ask me why I was there and what I was allergic to.  When I told her about Alam's call they began to look for orders so I wouldn't have to sit and wait with the hundred other "sick" people.  So they couldn't find them so that meant I had to wait another hour before the insurance lady called you to her window and took all your personal info, drivers license and insurance card.  Then we had to wait another long time.  At 8:15 I finally got back to the ER exam room and boy did they start busting their behinds to take care of me.  Dr. Alam wanted them to do all the workup and recheck the potassium to make sure it was as high as it was and then admit me.  They put me in bed, after I went to pee and they told me didn't need to catch it.  Then guess what...yep I had to drink lots of water in order to hit the cup.  From then on it was DO NOT GET OUT OF THIS BED!  They rolled in with the EKG machine, then Xrays, then the vampire came in, then came the IV's and they pushed medicine in for the potassium.  On top of all of that, I had to drink a caramel chocolate milkshake (yeah sure it was) in order to clean me out...if you get my drift.  And let me tell you as soon as it hit my belly it worked.  So they brought in a potty chair and before Joe, nurses and anyone else who came in well it wasn't a pretty sight!  For about an hour that went on.  They have to watch your heart because at any time I could have had a heart attack - either while the potassium was so high or while they were bringing it down.  So I'm hooked up on heart monitors and also given a breathing treatment because the albuterol in the treatment meds pushed the potassium into your system so you can absorb it.They we had to wait because you have to stay under observation overnight.  It was 1:30 this morning before I got in a room and from then on it was one person after the other.  Today I saw 7 different doctors but the blood pressure is back to normal and the potassium has come down to normal and knowing me by Friday when I have to go back to the doctor it will be too low because that's where it usually stays.  Talk about a fun day.
Anyway, I'm home.  Feeling okay and the weird thing is I never felt bad with the exception of Sunday I was dizzy, nauseous and had an upset stomach which I now find out are symptoms of high potassium.  It lasted about 4 hours and I had the best day I've had in a long time on Monday.  And on top of all that I find out my right lung has a wheezing in it and I have a urinary tract infection which may be coming from my kidney and had to start an antibiotic for that. 
I guess this is just going to be a way of life from now on!  Keep praying!

Sunday, February 6, 2011

Snow, Snow and more Winter weather

Well, nothing new to report on my health other than - great blodd pressure news.  We've probably hit the right medication because my bp is holding around 123/68.  Not bad for someone who has been running 200/104,  Didn't make it to the doctor to have my potassium level checked.  Gonna try to do it tomorrow if the weather holds. 

We've lots and lots of snow and winter weather this week.  Kids were out of school for 4 days.  That just means they will have to go longer this summer.  We are suppose to have 5 more inches by Wednesday.  Our street is still in bad shape but the main roads were pretty clear this afternoon.  We got out just to run to Office Depot for printer color ink.  Thankfully Office Depot is only about 2 blocks from the house.

I've been working on my Hawaii scrapbook and it takes a lot of ink to print pictures.  Probably will just take my disk to Walgreens and print them off.  But Joe's going to have to help me with where they were taken.  The scentery all looks the same - BEAUTIFUL!

I will see Dr. Alam this comint Saturday for my first trip since I was in St. Louis.  He'll probably run all new kidney tests to see where I am.  Will keep you posted.

Stay warm and happy and healthy!

Tuesday, January 25, 2011

St. Louis Doctor Trip

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.

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.

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......

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 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.