Good news, my kidneys are getting better

[ICLori]

Got the creatinine test done today as well as the creatinine clearance test (had to save my pee for 24 hours, and keep it in the fridge in-between additions, ugh) and got good news! Dr. T was kind enough to call me with the results. He is the most wonderful doctor ever. I always either love or hate my doctors, never anything in-between.

Anyway, my creatinine is now 2.4 (down from the previous high of 3.3), and my creatinine clearance is 32.1. (Normal should be 90-140).

My GFR is 23, which still places me in the stage 4 (severe) kidney disease category, but I am in the top half of that category now instead of the bottom half, and that is great news! Oh, and I learned GFR can also be thought of as "percentage of your kidneys that are still working." So for instance if someone had a GFR of 90 or above, they pretty much have 100% functioning kidneys. Someone with a GFR of 50, has 50% function left. Someone with a GFR of 23, has 23% capacity left. That's still better than the GFR of 16 I had just a week or so ago!

Also, there was no protein in my urine, which is also good news.

The bad news is that I am having IC pain again on this lower dose. I am really bummed out by that. You guys know how it is, sigh.

I edited my letter to Dr. J. to just tell him the bad reaction I had to the beta-blocker, so he would know I had to go off it, and to ask if I might learn the results of the tests as I was very curious which direction my kidneys would go in. And since I was having IC pain again, I communicated my wishes to decline dialysis if it did become necessary, and asked instead for hospice care in that eventuality. Of course, my kidneys are getting better, so it's a moot point.

Anyway, didn't blast him or anything.

Blessings,
Lori

[leelee88]

Thats great news Lori!!
I hope they continue to get better..Its a bummer you had to lower your dose of meds..The one thing working for you and now you have to watch how much you take...Well I hope you the best and you will still be on my prayer list...(((((((((((hugs)))))))))))))

[waterflow]

Lori, that's great! Glad the doc called you early to let you know about the test. It can be hard waiting for them.

[Trishann]

Lori, that is great that things are looking up. I hope you continue to get better but I am sadden that now you are having IC pain again. I was hoping that the lower dose will still give you comfort.

Lori I am really sorry you are going through all of these things. Lori sometimes we do our best, and try whatever is out there to make it better, and you have definitely done everything, but sometimes it still fail us. Now I just think we have to continue to pray and say Lord it is in your hand, you are the one that can do the impossible. I am not trying to sound religion but sometimes we have to lean on our Lord Jesus, because the burden will be to heavy on us.

Love you, Lori :pray:

[SandyRN]

That really is great news! I hope your labs continue to get better!

[dancemomof2]

Great news Lori, I will continue to pray that things get even better

[vm]

Awesome, awesome news, Lori. :)

[Sarojini]

So glad to hear your kidney function has improved!! :)

[ICNDonna]

That's the best news I've read all day. I hope you continue to improve.

Warm hugs,
Donna

[ICLori]

Thanks, you guys! I was amazed that it improved so quickly. I think it will be back to normal by the end of another month, I'll bet. Maybe the doctor can try me on some dose halfway between what I am on now (not effective) and what I was on before (effective but hard on the kidneys.) Maybe there is some medium ground that will work. Or maybe my doctor will finally believe that I'm actually in pain (yeah, right, I can always dream) now that I've told him I'd rather be on dialysis than have IC pain. Or maybe not. Probably not. This is the doctor who won't prescribe me Ultram, after all. Because you know, Ultram is so bad for people. Apparently pain doesn't harm anyone, but Ultram is a real bad thing. All doctors think this way. I hate that about doctors.

Blessings,
Lori

[izazen]

Good for you, Lori. Almost every time I sign on here you are here lending your advice and support to us all. Thank you and the best of good luck to you.

[sweetangel2080]

glad to hear your kidneys are better. are they going to keep monitoring it and have they found the cause??

I really would advise against anything that would be taxing to the kidneys so that your kidneys have the best chance
Dialysis is real tough on the person -I know as my mum was on it for years but it was the daily option.

hope you get the best care so that you can get your kidneys working better again!!:)

[ICLori]

Hi, Sweetangel, thanks! My temporary renal failure was due to too high of a Cyclosporine-A dose (Neoral.) It was too high for my kidneys to handle.

Now that they have reduced the dose of Neoral, my kidneys are getting better by the day.

Today my creatinine results were 2.2 which is MUCH better than the 3.3 they started out as!

My GFR at this point is 26, which is still Stage 4 (severe) kidney disease, but it's at the very top of the Stage 4, meaning maybe by next week, if I continue to improve this much, I might be back to Stage 3. Stage 3 is good, because a person can stay at stage 3 for a very long time (years and decades even) and never need dialysis.

There is no chance of me getting better than Stage 3, however, because my baseline creatinine was 1.3, which (I didn't realize it until recently) is actually Stage 3 kidney disease (moderate kidney disease.)

At Stage 3, you get some symptoms like water retention, high blood pressure, and anemia. I have had all of these symptoms for about a decade - as long as I've had Stage 3 kidney disease, in fact, LOL.

Anyway, good news. I hope by next week my creatinine will be even lower! I hope it will go back to 1.3. If I can just keep my kidneys at 1.3 for a long long time, perhaps I will never need dialysis!

Blessings, and hope everyone else is having a good day,
Lori

[SandyRN]

Lori,

While I hate to hear that you will always have Kidney Disease I am happy that your labs are getting better. You are truly an inspiration because of the way you have handled yourself throughout all of this. You NEVER settled and went for a new treatment that can only help many, many more IC patients in the future. You gave us hope on this board. It doesn't matter if you have a few rotten days thrown in, you are a trooper. I don't think I would have handled this situation as well as you have!!

Glad you're doing better!!

:grouphug: Sandy

[SharonA]

I also am very glad you are doing better. Stay strong, Lori. :)

[Bessie]

I am glad that your lab results are better. I know that has to be a great relief. Stay stong and please keep us posted. We all care about you :angel:

[Briza]

That's great news, Lori!! I'm so happy to hear things are looking up for you!:)

[ICLori]

Thanks, everyone!

Thank you Sandy especially for the kind words. :) I don't think I handled things so great, LOL - my pastors at church were worried about me, and Dr. G. (who works with my doctor, and to whom I'm sure he spoke - I was also a patient of Dr. G. so it's okay) walked past me the day I was volunteering at the hospital (Thursday) and just shook his head, LOL. Oh, well, crazy lady here. Well, this IC stuff can make anyone crazy!

I haven't had too much pain, either, really. My pain is mostly just at night. Hardly ever during the day. So if I have Ultram to help me sleep at night, I really am doing very very well.

Blessings,
Lori

[green_the_fish]

Hey Lori. I've been following the story of your kidney trouble, but never knew what to say. I can relate on a basic level, having suffered from chronic pain, but this is beyond my scope of experience. I've been thinking about you and wondering how you might feel. And I still don't know what to say.

I'm curious though: is bladder removal still, hypothetically, an option? Or, would that put more strain on your kidneys? I'm not quite sure how that works, but, if you could do it, is seems worth keeping in mind.

Well, I hope your test results keep coming back better and better. I will keep thinking of you and hoping that you can find a dose of CyA that works for you.

:grouphug: :grouphug: :grouphug:

[Kara29]

Lori,

It's so good to hear that your kidneys are getting better! It's also good to hear you upbeat and hopeful. I hope things continue to improve for you as you move foward.

Well Wishes,

Kara:angel:

[maryla]

:woohoo: :woohoo: :woohoo:

I pray you continue to heal.....


:grouphug:,

[windwalker]

Glad to see your kidneys are getting better! Hope you are feeling alright :)

[Babs RN]

Lori.
I am so glad things are better.

Hugs,
Barb:smile tee

[waterflow]

Lori, THat is sooooooo great!!!!:woohoo: :woohoo: I was wondering how you made out. Glad you are doing well. :woohoo:

[Briza]

Hi Lori
I hope you're continuing to get better! :pray:

[ICLori]

Hi, everyone, just an update! I'm still in Stage 4, unfortunately (Severe kidney disease) but I am getting better, very slowly. My GFR is now 27 (meaning I have about 27% of my kidneys working) and I hope to continue to get better each week.

Blessings,
Lori

[SandyRN]

I'm so glad things aren't any worse. How's your IC pain lately?

[ICLori]

Hi, Sandy, thanks! My IC pain lately has actually been nonexistant. Haven't had to use a pain pill for a couple of weeks actually. Don't know if my body is just getting used to the lower dose, or if I had pain because it was my period, but we will see I guess!

Blessings,
Lori

[Kara29]

Lori,

I am thinking of you. I hope you continue to improve and get better each day!

HUGS!

Kara

[ICLori]

Thanks! :)

The good news is, my kidneys are a lot better now - my GFR is 32 (my kidneys are working at 32% capacity now) and so I'm in stage 3 again, not the bad stage 4! So that means I'm "safe" so to speak.

Sorry I haven't been on in a week - my computer's hard drive died and it took this long to get another one and get the computer working again.

Oh, the bad news is, I had a mammogram done on Thursday, and it turns out I have to have a breast biopsy done. They think from the shape of it it's just a fibroadenoma (benign) but it's growing, so they want to make absolutely sure. So I will call the surgery clinic on Tuesday and see when they can fit me in to have the thing taken out. Shouldn't be a really bad surgery or anything. No big deal.

Blessings,
Lori

[SharonA]

Lori...I have been wondering about you. Glad to hear that things are getting better with your kidneys. Sorry to hear about the biopsy. :kissing:

[ICLori]

Thanks! The biopsy shouldn't be bad or anything. I don't even think it will leave a big scar or anything. And they are pretty sure it is benign, so I'm not worried that way either. It's just one of those things. Shrug.

Blessings,

Lori

[verdicries]

Has anyone heard from Lori? I think about her a lot...Lori if you're out there, give a shout!

[massagedoula]

I wonder about Lori too. I would love to hear from her.

PS Verdicries...I would also love to be on House too! My husband said that if he was a real doctor we would pay to have me go see him and somehow find out that I didn't have IC but some super rare thing that he would be able to cure me from forever!

[calypsogirl]

I guess I have a question pertaining to this. I was involved in the cell cept study and my GFR was 65 I read that it shoule b 90 or above, and questioned my dr, and said it was not of concern. Of note I go to a uro who is chief of urology at a major hospital and IC specialist. No creatine in my urine, and all other kidney related tests were fine.