Question around GFR

[bpop]

Hi, i have been following posts on this group for some time now. I wanted to see if I could get few opinions from you guys. My son 22 years old is at end stage. This is due to urinate obstruction from birth. He is very fit, 183 cm tall and 85 kg. With each year his creatinine levels were slowly increasing. As of today he is at 730 ( or I believe it is around 8 in other units). He absolutely has no symptoms. I am approved to be his kidney donor, and we need to schedule a surgery. We are hesitant to schedule it yet, as he is feeling fine for now. But not sure how long to wait. Thats our first dilemma. Second, they tell us his eGFR is 8%. But when we enter his creatinine level into formula that is taking his height and weight, we get more like 17%. So there is a big difference. His electrolytes are all normal values. And third, he did 24 hour urine collection, and value for creatinine 24 hour urine is some value that is in the normal range... we don’t know what it means... we still need to see a doctor, as we only saw those results online today. Appreciate your thoughts. Thanks Belma

[Bassetmommer NKF Ambassador]

Dear Bpop.

You get the mother of the year award. I hate when such young people have to face this disease. We do not diagnose here on this site and I would be hard pressed to help you figure out the lab values. I can only suggest that you have a frank discussion with his health team.

There is also a sister site her on healthunlocked for people in dialysis which might be a help to you. Best of luck to both of you.

healthunlocked.com/nkf-dial...

[bpop in reply to Bassetmommer]

Thanks... I am really not asking for diagnoses... and I know I can talk to his doctors :). Point of my question is to get other people’s experiences especially if there are younger people Here. Stats are skewed towards older people who also had other conditions contributing to their condition.

[PittBos]

Hey BPop -

Your son's situation actually sounds kind of similar to mine.

I was born with a Urinary Obstruction as well, which permanently damaged my kidneys. Most of my life, my Creatinine stayed around 2.0-3.0, but once I got into my early 30's, it began to creep higher.

I felt pretty similar to your son, too. Even as my Creatinine reached ~ 5.0-6.0, I had no symptoms. Felt healthy, was generally fit, etc. I would get bloodwork, see my Creatinine levels, and use online equations to try and determine my GFR. I would always get numbers like 12, 15, or 17 - but my doctors would somehow calculate it at 9-10. I deferred to my doctors, and took their readings as more accurate.

It felt odd to be 32 years old, healthy, and active, and to be preparing for a kidney transplant. But my doctor assured me that it was the right thing to do because if we did not correct the kidney problem, I could have some additional health issues from this, particularly around excess potassium, phosphorus, and calcium floating around in my bloodstream that my weakened kidneys simply could not process. (In my bloodwork, Phosphorus and Calcium readings were both elevated.)

Not wanting to turn one problem into two, I went ahead and got the transplant. My sister was my donor. 16 months out from the surgery, I am glad I did it. While no one wants to get a transplant early (it's smart to avoid immunosuppression as long as possible, especially when you start them young and will need to be on them for 30, 40, 50 years), going into the operation healthy made a huge difference in my recovery and, I would assume, my outcomes.

It's definitely a scary thing, but I think having the conversation about these tradeoffs with your son's doctor makes sense. It's helpful to find out if there's there any such thing as acting TOO early on this, and even if you don't do the transplant right away, it's good to be prepared with all the screenings, matching, social work, emotional preparation, etc.

I hope this helps!

[bpop in reply to PittBos]

Thank you so much. This helps. And definitely your situation is very similar. I went through all the testing, and I am approved for donation. The next step is just schedule a surgery. It looks it could be early May. What was your creatinine before you went into surgery? Thanks again and I wish you all the health with the new kidney.

[PittBos in reply to bpop]

Of course! And thank you for the well-wishes, too.

That's excellent you're approved for donation - it's such an incredible, albeit at times challenging, experience to go through, both from the donor and recipient side.

The last bloodwork I have record of pre-transplant, my Creatinine was 5.85, but some other key metrics my doctor looked at were:

- Parathyroid Hormone, which was at 416 (waaaaay above the normal range)

- Phosphorus, which was at 5.1 (slightly above the normal range)

Best of luck to you and your son!

[Carillon]

Pre-emptive kidney transplants have the best results as well when donor and recipient have similar genetics the aftercare is easier, fewer anti-rejection drugs. This is a perfect situation. Don’t wait.

[bpop in reply to Carillon]

Thanks!

[WYOAnne NKF Ambassador]

It would be to your son's advantage to do the transplant sooner rather than later. Most centers like to do living donor transplants prior to the recipient starting on dialysis. The recipient is not as sick and less likely to have a lot of post transplant problems.

I had a transplant from a deceased donor but had only started hemo dialysis for a couple of weeks. Being healthy for this surgery is a big plus and for your son's care after with his immunosuppressant drugs is a BIG PLUS!

Your doctor is your expert and should be able to give you his opinion on when the time is right for transplantation.

Best of luck and let us know.

[bpop in reply to WYOAnne]

Thanks!

[bpop]

We live in Canada. All urunary problems were Fixed in two First years of life. unfortunately this type of obstruction damaged his kidneys even before he was born.

[Bet117 NKF Ambassador]

Hi bpop,

You are an inspiration to all who have a child born with a problem and both you and your son an example of strength to those who need a transplant.

I am sure that the journey behind you and that which lies ahead could not have been and can't be simple.

It is the acceptance, courage and positive thinking that get you through.

Your inquiries and asking for support are what we are here for.

I am glad that you reached out and that both PittBos and WYOAnne responded with support and experiences.

I haven't experienced what you have but send you all of my warmest thoughts and prayers.

Please reach back when you are up to it.

You both are thought and cared about.

Bet

[bpop in reply to Bet117]

Thank you for your nice and Supportive words. And grateful for responses. When life deals you cards, you need to play them the best you can. If other parents need to chat, I am here to support too. 🙏🏻

[Bet117 NKF Ambassador]

No thanks ever needed!

Just to let you and your son know that I am in your corner; cheering for you!

You are exactly right; be it health, family, unemployment or anything else, " You play the cards that you are delt." ( and get up every morning and turn the page.

Thoughts are with you!

B...