Discussion Board

I hope you do well! It's important to understand, though, that once kidney numbers go up, much of the kidney has been destroyed. Unlike the liver (under some circumstances), the kidneys cannot regenerate. This WOE may be able to slow the deterioration down--that's what we're all hoping for for you! But you cannot repair the kidneys--it's not possible, unfortunately.

That is just what my doctors tell me, but I will continue to be hopeful. People in china repair their kidneys. I have read the studies. It is possible. It just isn't possible in our country. They do not know why my kidneys have failed. They do not even know how much damage has been done. They don't know why my creatinine has gone from 5.3 to 3.0. They think the biopsy was done incorrectly, but they cannot risk another due to the damage it could cause me.

There are so many unknowns that I have to continue to be positive and have the hope of being able to turn things around. I do understand the likelihood of my kidneys getting better. They have been telling me for over a year that it is "impossible" "unlikely" and so on. However, they have also been telling me that I would have been on dialysis long before now, that there is no way I can continue to function like this with 10% of my kidney function and that I should be much sicker than I am. I am hopeful because they have been wrong on so many things. I am not in denial however. I have gone through the necessary steps to be ready for dialysis. I am going through the necessary steps to be considered for transplant. I will jump their hoops, but I will remain hopeful until they stick that dialysis needle in my arm. Anything is possible.

I am happy to see that you are staying positive and I pray everything will improve for you. Yes, Dr's are often wrong. Are you young? Just wondering. Pretty scarey something could happen to you so quickly without warning.

I am 44. I was diagnosed when I was 43. I thought, at the time of my diagnosis, it was without warning. I just didn't know how sick I was, but looking back ~ I was in denial. Sick had become the normal and I had been feeling sick so long that I didn't know what well felt like.

There is no clear indication from my doctors as to what caused my failure. They will not say it is diet. I have attempted to discuss it a few times. However, there is a link between Celiac, Crohns and Renal Failure. I may have had Celiac for quite some time without even realizing. I just ignored the symptoms. It is quite possible that the Celiac and/or Crohns contributed to the renal failure. It is also possible that my tendency to fad diet was a contributing factor. (Atkins) My doctors, knowing all these facts, say 'no' but I have a hard time believing that.

That is where my hope comes in. They are not sure how much of my kidneys are damaged versus inflammed. Originally they said that there was about 80% inflammation and 10% damage. Now they are reversing those numbers based on blood work ~ however not all of my labs match up with that. Most of my labs actually point towards the first set of numbers. They are stumped. They continue to just shake their heads that I am not much sicker than I am right now. According to some numbers, my kidneys are functioning at a little less than 10%. According to my health ... they are functioning rather normally. It is a mystery!

Well, it sounds as though if you are mainly inflammed with only 10% damage that should be good. Also i think being young may work to your advantage. I certainly hope so and wish you the best.

I wish you the best, too, Pacificfords.

And I am impressed with your ability to balance a realistic perspective with maintaining your hope! Hope is so very important.

Thank you for the nice comments.

I appreciate the support.

I had an interesting set of labs yesterday. I posted about that in my regular journal, but I wanted to add a portion of it in this journal.

My creatinine was 3.3... fairly typical for where it has been resting this past few months. However, my BUN was normal. That is a first. It is usually in the 50's. Yesterday it was in the 20's. Interestingly enough, I can find no information online that suggests why that might happen. BUN and creatinine usually rise together and fall together. I am taking it as a good sign for now... BUN is an indication of how the kidneys are functioning. However, I don't really know if it is anything to get excited about quite yet. I will wait and see what my nephrologist says next week.

Sending good wishes your way.
I am hoping you get all good news .
again I think people do not really understand the healing power of vegetables and fruit.

and how much the gluten affects you if you are celiac.

I had an appointment with my nephrologist today. What an interesting talk we had. He is someone new to me. My previous doctor left the practice, so they moved me over to him. That was a bit nerve wracking at first, but it turned out great. He was happy with my labs. He commented on the numbers going up, rather than down. We did talk diet (first doctor that has ever wanted to talk diet). He said "vegan is good, keep doing what you are doing." He seemed to be impressed with my ability to figure out how to get off of one of my medications by cutting diary completely out of my diet. I no longer have to take a phosphorus binder. He made some connections between my Crohn's and Celiac and allergy issues with my kidney function.

I have to lose 50 pounds before I can do a transplant assessment. He is certain that is the next step for me, but could honestly not tell me what the future holds because he said my numbers have been going up instead of down, and that isn't typical. He said it could go either way at this point, because they do not know what is causing my kidney failure, they have no idea what might finish my kidneys off or how long it could take. (comforting) He mentioned that I could be fine today, but if I were to get a virus, a kidney infection, or take the wrong medication or eat the wrong food - it could all change rapidly. Again... he said "keep doing what you are doing."

I felt great about the whole appointment. It really kept me focused on eating healthy because that is not going to be the ONE thing that happens to push me to dialysis or transplant - if I have anything to say about it.

Sounds very encouraging. Let's see if 2012 brings more improvement!
f1jim

editing accident. See next post for what I meant to say.

That sounds great - How nice to have a doctor supportive of your diet!

I agree with Jim- let's see what 2012 brings.

Good for you, PF. You show em.

Yay for a good doctor and yay for great labs.

Keep up the good work and I bet 2012 numbers are even better.

Thanks for the positive words

One of the stories my new doctor shared with me today was about a woman that was a patient. She was at a GFR of 14 and was expected to be on dialysis very soon. She had monthly appointments, then those turned to appointments every three months (at which point he added - "just like we have done with you"). Then she started coming in twice a year. She continued with a GFR of 14... for FOURTEEN years before she proceeded to dialysis! That was outstanding. He didn't share the how or why... I think often they don't even know. But he gave me hope and I sure love when doctors give me hope.

He also discussed the trajectory of my last year... and how it should be going at an angle - downward... yet I am moving in the opposite direction, even if only slightly. I actually hit a low of 9 for a GFR several months ago and now I am back up to 17 - the highest number since my diagnosis, which started at 11.

One of my favorite things about my appointment was that he is looking for a link between an allergic reaction / protein / Crohn's / Celiac / and interstitial nephritis. He was very interested to study more on that after I mentioned the possibility of an allergy to protein. All other doctors have just ignored me when I brought that up and brushed it off. He took it very seriously and said he will be studying my case. I was thrilled.