at 6% function

[Sydnee]

Went to Dialysis Clinic with Ed today. Ed is doing great. But my labs have gotten much worse. I went from a 5.3 creatinine to a a 7.2 in one and a half months. I am now at 6% kidney function. We are retesting at the end of the month if it has not improved I will be scheduled for PD catheter placement. Not really ready for this.

I know Ed is doing fine, I just have this dread about this. Maybe it's family history but I'm scared I'm going to die soon after I start dialysis.

[galvo]

I can relate to the "not really ready for this feeling", Sydnee! I hung out to 6%, before submitting to HD and, three and a half years later, I'm so glad I did. My only regret is that I waited untill my GFR was so low.

I don't know your family history, but dialysis is more likely to give you extended life rather than death.

Good luck. Keep us up to date with your continuing adventure!

[cassandra]

Good luck, girl, I'll be rooting for you

Love, Cas

[Angiepkd]

Good luck, Sydnee!  The scariest part is during the time right before you start D (or it was for me).  I had myself so worked up!  After the first treatment, I was so mad at myself for worrying so much. Since you are dealing with this along with your hubby, maybe some of that anxiety is lessened?  I don't have any experience with PD, but I did feel much better after getting a few treatments under my belt.  Now it's just part of my routine, and I feel almost like a normal person!  You have so much to deal with, I truly feel for you. You are one tough cookie!  Sending you prayers and strength!  People live a long time on D now.  Don't let the family history worry you.  Every year there are great improvements made in the treatment of ESRD.  You can do this!  xoxo

[Grumpy-1]

Hang in there Sydnee.  You wrote "Maybe it's family history but I'm scared I'm going to die soon after I start dialysis."  Don't know your family history, but with today's medical developments, it not likely you will die soon after dialysis.  Or course unless you are hit by a truck     I know that just prior to going on dialysis is very stressful, but you can get through it.   Don't forget to come here often and share your thoughts and concerns.  It always helps to take the stress off if you share your feelings with others that understand.   Grumpy

[obsidianom]

You are making a mistake in waiting. Dialysis is a new life but SO much better than feeling sick from poor kindney function. Waiting just makes you sicker and more likely to have adverse outcome. Do it sooner and once over the initial hump you will have a more healthy better life than with poor kidney function. We in the U. S. wait too long to start dialysis and suffer for it needlessly. It is a big change but well worth it .
My wife started earlier as I pushed her nephrologist. They wanted to wait while she got weaker and sicker. The day we started she felt better and has never looked back. WE do Nxstage at home and she feels like a new person. She is up to 23 minutes walking on the treadmill a day now.
I saw a woman the other day who is now 13 years on hemo dialysis and diabetic but still doing well . So a long life is possible on dialysis.
Go for it!!

[PatDowns]

Sydnee - I included this link on another thread, but feel you might gain some insight from it as well.

http://www.rsnhope.org/programs/kidneytimes-library/article-index/living-long-and-well-on-dialysis/

[okarol]

Went to Dialysis Clinic with Ed today. Ed is doing great. But my labs have gotten much worse. I went from a 5.3 creatinine to a a 7.2 in one and a half months. I am now at 6% kidney function. We are retesting at the end of the month if it has not improved I will be scheduled for PD catheter placement. Not really ready for this.

I know Ed is doing fine, I just have this dread about this. Maybe it's family history but I'm scared I'm going to die soon after I start dialysis.

Do you have any symptoms related to your low GFR?

[Sydnee]

Thank you Everyone for the encouragement.
My aunt only lasted 3 years on dialysis. She wasted away, the continued to get infections in her grafts. She died just a few years ago (Evey was a toddler). I have quite a few others stories too.
I also have problems with infections, every time I go the the hospital I get one. After vein mapping they determined that I would need to go with a graft in my dominate arm. So we decided my best bet is PD.

As for symptoms I'm tired quite often and don't have as much energy as I used to.

Just scared for the kids. With both parents on dialysis. Gehlan just got his drivers license on Wednesday, only has a part time job and he isn't done with highschool yet. He'll be a senior in fall. He got a good enough ACT that he can get a scholarship to UW in 2014. Ali is just starting 10th, Johnny and Evey aren't every through elementary school yet. What will happen....

[okarol]

I have friends that have been on dialysis a long time. Hopefully you'll have a much better experience. My daughter starts PD training in 2 weeks. Her GFR is 13.
Is there any chance you can get a transplant?

[Sydnee]

Yes I'm hoping to get a transplant. Been on the list for 2 1/2 years. Not sure how the change to the list allocation guidelines will affect my position on the list. It was a 6 + years wait at the beginning. Trying to find a live donor but have no family to ask so friends and strangers. And talking about the need is really hard. Plus the media doesn't seem to care here. You would think a husband and wife needing kidneys would be news worthy (at least on slow days).

[obsidianom]

Before you give up on a fistula , consider a second opinion on the veins. At the bigger medical centers/teaching hospitals the vascular surgeons can do wonders with small veins to form fistulas , where at local smaller hospitals the vascular surgeons fail.
My wife went to our local vascular surgeon here in a mid sized hospital and the vein mapping was bad. The guy really didnt think he could do a fistula and was very negative. My wife is tiny and has very small veins. We went to a larger teaching hospital a 100 miles away where the vascular surgeon is the guy all the nephrologists use in the teaching hospital. He created a fistula in her WRIST area saving the upper arm for later if needed. He wasnt sure if one surgery would do it but started with it. After a few months it worked but was slow. So he went back and put a natural tissue patch on it to widen it about 50%. It works very well now . WE have 2 nicely functioning buttonholes. This is in her wrist area so we have the option later if needed to go up the arm.
The point is, the skill of the vein mapper and vascular surgeon is the key. Get a secon d opinion ALWAYS.
If PD works for you great. But consider getting a second opinion on a fistula so it could be ready if needed later. Otherwise you might be on a catheter a while and if prone to infections that is dangerous. The fistula could be saved and not used for years, but it will be ready .