Finally maybe some relief..Good news for me..

[Smokey2014]

Hi everyone!

Just a little update on my condition and new plans after my 6 month treatment..

I went to the nephrologist on November 7th.

He said some of my labs improved slightly but i'm GFR is still only 16..

My creatine is 3.2 and my BUN is 75..

Large amount amounts of blood in my urine..

The protein in my urine is high but dropping a little...

Still anemic..but acceptable....around 9.3..

My nephrologist said there was a lot of damage to my filtering system in both kidneys..He can try and get maybe some function back and get me in remission but he's not sure how long it will last..

At this point he said dialysis will probably be in the future..

He believes the best way to go is to put me on the kidney transplant list in February after I finish this round of Prednisone and Chemotherapy..

This treatment ends in February..

If he trys another chemotherapy therapy treatment he said it is much more difficult to tolerate..

He also said since I am O Negative blood it will be much harder to find a match..

I will probably be on the waiting list for about 6 years if I can't find a family member to match and donate a kidney..

Plus I'm not getting any younger..

He said I'm at a good age to start this process for a kidney transplant.

I'm only 58 years old.

I agreed..

If a new kidney will help..

Go for it..

So as of February I will be on the list for a donor kidney.

Wish me luck..

Can't wait to get it and hopefully feel normal again..

Finish line is coming soon..

[Bunkin]

Hi , sounds like we’re in the same boat! Only my GFR is 8. But I’ve been on transplant list over a year now. They said it could be 6 years . I’m 57. Dialysis is looming. I have an appointment today. Prayers for you. God can do anything😀

[Smokey2014 in reply to Bunkin]

Thank you for responding back..

I know the waiting list is about 6 years for me through a donor list.

He's trying to hold off as long as possible for dialysis.

I still have 16% function which is fluctuating every week between 12and 16..

My BUN is 75...

My creatine is holding at about 3.2

He doesn't want it to go past 4..

Protein started to drop but not by much and there is very large amounts of blood in my urine..

He said the severe scarring from acute kidney injury and nephrotic syndrome with with diffuse membranous glomerulonephritis and crescentic attachment to it..

Said the scarring is not repairable..

Right now he wants me a little stronger and try to get a little more kidney function back so I'm strong enough for the transplant..

I will continue to fight to the end..

I Know there is a finish line waiting for me.

I do plan on reaching that goal and finally be well again .

My nephrologist finally put me on Klonopin for severe leg and arm and hand muscle cramping which cripples me..

The severe swelling in both legs,feet and ankles finally went down from the lasix.

The konopin actually is calming my my anxiety down too which I so badly needed..

I don't sleep ever from mass doses of Prednisone..

Hopefully my brother can donate his kidney to me..

He's the same blood type as me O Negative but we don't know if any tissues match yet..

Hopefully the end of the tunnel will come soon...

I will pray for you.

Please continue to keep me in your prayers..

God bless you always.

.

[Bunkin in reply to Smokey2014]

Great numbers! Mine are ok except creatinine continues to climb. It’s 5.71 now. He gave me a new thing to lower potassium. Continued prayers 😀

[Bassetmommer NKF Ambassador]

Your positive attitude is wonderful. Best of luck and health

[steve680]

Hey Smokey,

Good to hear from ya. We're about the same age. I see a transplant doctor at the end of this month to get on the list (one's GFR needs to be <= 20 to qualify ). My GFR hovers around 14; I haven't started dialysis due to lack of symptoms, though some days I feel tired if I don't get enough sleep. Some days I feel really good; some days I feel like I have CKD (which I do). You can lower your BUN by eating more of a vegetarian diet; in general, I feel better when I eat vegetarian. I tend to eat out a lot, so "vegetarian" for me means eating Greek, Mediterranean, Thai or Indian food. My last labs showed my hemoglobin at 12.5 (normal for a man is 13.5 and above), so my nephrologist said it "wasn't bad" and didn't do anything, but I wish he would order a lab for my iron. Avoid the "acidic" foods - red meat, processed meat, fried foods, fast food, alcohol, coffee, soda - you know - all the good stuff. Or at least try to limit them, easier said than done.

[athenat]

I admire your courage. My gfr is 57 (I have PKD) and I was having a hard time coping. People like you keep me upbeat and help me along my journey. Please keep us posted on any news that comes through for you. And blessings to you.

[Ladybug_05]

Hello! I'm glad to have come across your update! Your levels look great too! I hope that you can find a match with someone sooner rather than later. Best of luck!

[KidneyCoach NKF Ambassador]

I'm happy for you that your doc is working with you. Once he refers you for a transplant evaluation it is a somewhat long process of testings. Some places complete them all in 1-2 days while others take a few months or more. Type O people wait longer because they are the Universal donor so those who donate and are O can go to anyone who is waiting. Please remember not all who are referred for transplant list are approved. They will check the heart, lungs, mammogram and gyno for women, prostate for men and so on. Sadly for kidney transplants (the only one) the patients are expected to be in the best of health to be listed. Please keep us updated. We will all be thrilled to know you're on the transplant list and even more happy to hear of you getting a transplant. Best of luck and Blessings

[Patricia7048]

I wish you lots of luck. I suggest you yry a chiroprator but only a very good one. They realign the nerves in your body to wotk optimally. My gfr went ftom 21 to 30 !!! Amazed and delighted! Not that I feel any better tbh as I am permenantly exhausted. Anything is worth a try.

Before more meds or ops!!!!!

Best of luck x