Will have my first visit with Nephrologist in three days

[gorwell1984]

Hello to all,
With the insurance coverage I have they won't pay for me to be referring to a Nephrologist from my PCP until my GFR reaches 30. My last doctor visit in late January my GFR was 33. I will see my doctor on Monday  and Nephrologist for the first time the same day.
I don't know what to expect. I am scared to death. As each day draws closer I sleep less, worry more. It's getting to the point where an hour doesn't pass without me dropping in deep depression due to my concern of the unknown of going on dialysis.

When I was first diagnosed with CKD last April 2007 I spend every spare minute on the internet researching CKD and dialysis. It got to the point after about 6 months that started becoming so depressed everytime I would go on a website doing my research that I became extremely frightened, so I stopped doing so much research.

At 56 years old, type II diabetic since 2000 and recently diagnosed with diastolic heart failure I'm not even sure I will be advised to go on dialysis? My Nephrologist may tell me that with all of my other chronic Illnesses It won't be worth it to go on dialysis. My mom died of Renal failure at 56 years old. When she was diagnosed they told her that it would not help her to go on dialysis and she was not offered any solutions to keep her alive. She died 2 months later. She was also diagnosed with colon cancer. I'm so affraid the same fate will be mine.

I hope my GFR has not fallen so far over the past three months that there is no hope in placing me on dialysis. I was originally told when I was first diagnosed with CKD that I could expect approx. a GFR decline of around 1% every 90 days to a year. Well that was really way off. After 90 days my GFR had fallen from 52 to 47, next 90 days to 42, next 90 days to 33! It was 33 last January. It has dropped very quickly since I was first diagnosed in April 2007 with GFR of 52 to GFR of 33 in January of 2008. At that rate It would be 24 now. Is a GFR of 24, Creatinine last January was 2.01, B.U.N. was 53, Hematocrit was 31.5 two weeks ago when I went in for my last Procrit injection.

Can someone give me their best guess as to what I can expect when I see my Nephrologist in 3 more days? I would really appreciate it if I had some Idea what to expect when I see my Nephrologist for the first time considering the indicies and other chronic Illnesses I have provided above.

I am so scared I haven't had more than 2 hours sleep in months. I fall asleep easily but wake up 2 hours later and just lay awake the rest of the night staring at the ceiling for 3 or 4 more hours trying to get back to sleep but can't so I just get up around 4am and watch the news for a couple of hours, get ready and go into work 2 hours earlier than my start time. By lunch time I am so tired I try to take a nap which usually I can sleep during my lunch hour due to being so exhusted.

Thank you in advance for any insight, or information anyone can at least give your best guess as to what I can expect in the next couple of months.

Rick

[Ang]

hey  rick,

good  luck  with  your  neph  visit, remember  ask  questions  information  is  power  to  you.
 the  sleep  thing  is  a  result  of  your  renal  failure.

[gorwell1984]

hey  rick,

good  luck  with  your  neph  visit, remember  ask  questions  information  is  power  to  you.
 the  sleep  thing  is  a  result  of  your  renal  failure.

Thanks for the reply ANG. Do your sleeping patterns imporove once you start dialysis?

Rick

[Sluff]

I can't answer your question but I do know most people on dialysis have many sleepless nights. They can give you medication to help with your sleep. Many have said that after all the nervousness that they actually felt better initially after starting dialysis. Everyone is different but I wish you luck. 

[twirl]

my first visit like that my doc told me I had 50% of my kidney function left and I would be on dialysis when it got to 10% which is what happened but it took me a couple of years and my visits to him increased
maybe there have been advances since the time or year of your mother's death
when my mother got her kidney she was 69, had had cancer and was on dialysis and very sick
she died shortly after the transplant
I can't remember why she died
I hope a doc does not tell you no use to go on dialysis and if he does find another doc
dialysis is no picnic but you deserve that right
Good Luck and try to get some sleep

[lola]

If you don't understand something the DR says don't be afraid to tell them that. My husband has been having MANY sleepless night's as his gfr has gone down, ask lots of ?'s regarding the diffrent types of dialysis KNOWLEDGE IS POWER. Good luck and let us know how it went.

[annabanana]

Gorwell, my husband's GFR went from 33 to 26 in just a few weeks then leveled off. Will know his latest next week. That was a bit scary. The docs are just as calm as can be about this, but we were really scared. My husband doesn't sleep, either.  He's tried the Benadryl sleep aids and even Lortab but it doesn't work very well. Some nights are ok but most aren't. It's so hard being scared plus no sleep. The research is scary but sometimes it's good. Try to focus on the good stuff. I actually had to force myself to focus on the good stuff.

[paris]

I think we can all relate to your fear.  You are facing so many difficulties.  Go to the nephrologist with a list of questions. Write things out so you won't forget.  I now hand my list to the neph and he goes over everything.  If you aren't comfortable with the choice of doctor, see if there is another choice.  So much depends on good communication between the two of you.   Not being able to sleep seems to be part of renal failure.  Ask for something to help you.   Also, if you feel depression is becoming an overwhelming problem, be honest with your doctor.  I hesitated too long to ask for help, but now take something for sleep and depression and it has helped with my outlook.  I am at 15% with creatinine of 3.2. Been holding at that level for months now--still not on dialysis.  But, I don't have the heart problems you have.   I will keep you in my thoughts this week  and pray you get the answers you need.  If you don't understand things the neph tells you, post and maybe we can help.   You aren't alone---we are all here for you

[oleboy]

Hang tuff, your Neph. is a specialist and can help you al ot it took a couple of years for my GFR to get to 22, thats when my Neph. visits got more frequent. I likr you are 56 type II diabetic with a slight Cardiac problem due to High B/P over the years. Dialysis won't cure you but it sure does help. Good Luck, and keep us updated.

[paddbear0000]

I too am diabetic (type 1 tho). My kidney function is at 20% and has remained at this level for the last 2-3 years. Your decline in kidney function could stay stable for a long time. You're still a far way from dialysis. To protect your kidneys and slow the progression, your doctor should put you on a blood pressure pill called an ACE Inhibitor, if your family doc hasn't already. They have been proven to slow the progression of diabetic kidney disease, as well as lowering BP. High blood pressure damages the kidneys even more. You should also cut your consumption of protein way down. The kidneys have a hard time processing protein and this can cause more damage to them.

Relax! You could be years away from dialysis. Plus, you could also try to get a transplant before you get to that point. That's what I'm going to do.

[aharris2]

...At 56 years old, type II diabetic since 2000 and recently diagnosed with diastolic heart failure I'm not even sure I will be advised to go on dialysis? My Nephrologist may tell me that with all of my other chronic Illnesses It won't be worth it to go on dialysis. My mom died of Renal failure at 56 years old. When she was diagnosed they told her that it would not help her to go on dialysis and she was not offered any solutions to keep her alive. She died 2 months later. She was also diagnosed with colon cancer. I'm so affraid the same fate will be mine...

Rick

What happened to your mother happened about 20 years ago I would think. Things have come a long way in that time. I cannot imagine someone in your age group being denied dialysis and have never heard of it. Has anyone else?

Best of luck at your appointment.

[gorwell1984]

I wish to thank of you who replied to my questions. I saw my PCP today, they took blood and postponed my initial visit to a Nephrologist until my blood indicies come back, probably next week sometime.
I should have made it more clear about my mom; She was given less than a year to live due to colon cancer, her kidneys failed while on outragous doses of chemo and radiation therapy for her cancer. The Oncologist told us that she had kidney problems for over a year though but was never diagnosed with CKD. Most likely that's why they didn't place her on dialysis.

After all of the research It looks like nocturnal hemodyalysis seems like a good choice but I have no idea like most of you do.

Again thanks for all the information and kind thoughts.

1/30/08 GFR 33
Creatinine 2.09
B.U.N 53
Type II diabetic 2000
Diastolic insufficiency (diastolic heart failure 07/2008)
56 y.o. 200 lbs 6'
HBP since 1974

[flip]

I see a big disparity between your creatinine and your BUN. Have you done the 24 hr. creatinine clearance test lately?

[gorwell1984]

I see a big disparity between your creatinine and your BUN. Have you done the 24 hr. creatinine clearance test lately?

No I haven't had one at all.
I guess (hope) my Nephrologist will do one?
Thanks,
Rick

[paddbear0000]

There's an easy way to make sure they do one. Take it with you! Just find a gallon container with a screw on lid and wash and rinse it out thoroughly. Void your first urine of the day, then collect all of your urine up to and including the first time you go the next morning. Make sure you do this collection no sooner than 24 hours before the day of your appointment. Keep the container in the fridge until your appointment, then when you get there, when you see the doc, tell him you've brought it with you. They can either take it themselves, or have you take it with a lab request form to an outside lab.

[G]

Afternoon '84',
You might see if you can get a referal for a dietary consult. As everyone has stated: knowledge is power. Become a sponge! Welcome to the crew.