New (and in need of answers please)

[Diane310]

Hello everyone,

My father was diagnosed with kidney failure and will be starting dialysis soon.  Two months ago I offered one of my kidneys and registered to donate.  I went through a battery of tests and the final test was being injected with radioactive dye and having my urine output monitored.  A week later I was told that my own kidney function was 88% ("not enough" I was told) and that I would be needing my own and that they would be refusing me.  I'm utterly heartbroken and cry every time I think about having come that far only to be told no.  They told me not to be concerned and that at my age (40) it's perfectly normal.

So my question is why is 88% not enough?  I don't understand, what is considered "enough" then?  Any answers or help is so greatly appreciated.  
Thank you and God Bless.

[ohtobeahayes]

Hi, and welcome!
Of all the people on here, I am probably the least well versed as far as the actual medical-ness of donation. As you've probably seen though, we have some BRILLIANT people here who will be along shortly to help you get some better idea of what might be going on.

It sounds to me like you are badly in need of having a conversation with your transplant coordinator/nurse.  You deserve to have absolute clarity regarding where that number came from, how it was calculated, what it means for you, and what number would have been "acceptable". 
I am SO sorry for the heart ache you are feeling.  If you can find it in you in a moment of peace, consider that perhaps this was the only way that you would have received this information regarding your own kidneys.  That is a stretch, I know, especially in such an emotionally geared situation.

Have you experienced good care from the transplant clinic so far?  Are your calls or emails returned promptly? Please put this at the top of your list of "important" things to do asap.  You deserve this information, your heart deserves this information.....never give up!

XO
Nicki

[Fr Pat]

Dear Diane,
     I'm sorry to hear about your disappointment.
     I'm not a medical professional, but here is what I understand from what I read so far: When they measure how well your kidneys are functioning, they then have to calculate how well you will do after losing HALF of your total kidney mass by donating one kidney. The remaining kidney will work harder to try to do the whole job, and may increase in size a bit. But if with both your kidneys functioning it is just enough, the worry is that one kidney will not be enough for you. Likewise the one donated kidney may not be strong enough to do the full job for the recipient. They also have to take into account that everyone's kidney function tends to decline with age. So even if your remaining kidney were sufficient for you at present, it might become insufficient later in life. The doctors do not want you to donate a kidney now and then end up on a transplant waiting list yourself later. Nor do they want to transplant a kidney into your dad if it looks like that sole kidney will not be able to do double its work.
     It can be a difficult decision, especially if the numbers are "borderline".
     It would be good to make sure that other relatives, and your dad's friends, co-workers, church/club members, old alumni, neighbors, etc. know about his need and about the possibility of living donation. There may be other potential donors around, including people of his same age, who are not aware of his need.
     best wishes,
        Fr. Pat

[sherri]

Diane,

Sorry to hear that you were not medically suitable to become a living kidney donor at this time. When end stage renal disease is diagnosed, there are many ways to help a kidney patient. One that most people think of is transplant. But like medical management, diet, and dialysis, transplant is not a cure just another treatment. Granted it is often chosen because it keeps patients off dialysis but some patients do very well on dialysis and opt for that treatment if they can have a good quality of life. You can still help your father by helping with his dialysis treatments, doctor visits, maintaining a good diet and exercise. You can certainly advocate for him by letting others know his need for a transplant and then maybe someone else would like to think about becoming a living donor. I assume your father is in his 60's or above, as you said you were 40. If so, some transplant centers have programs for older recipients willing to take a healthy deceased donation >age 65. You can discuss options with his physicians with him.

This is also a good time for you to speak with your family physician or nephrologist about your kidney function and see what steps you should take to keep your kidneys from declining rapidly. Living donors, who donate to family members often start to be more conscience of their own health as they know that kidney disease is in their family medical history. This certainly has given me an opportunity to be more vigilant about diet, exercise, watching my salt intake, keeping my weight and blood pressure under control.

Wish you and your family good luck.

Sherri

[PhilHoover]

If your kidneys are only functioning at 88% total, I'd have a talk with your primary care physician. There may be some medical issues (and again, there may not be) that you are not aware of....that need your attention.

[lawphi]

I would not worry about the 88%, but be sure to be proactive with annual blood work, your weight and diet.

I am a short, skinny 29 year old woman, who has been approved as a donor at two centers.  Both centers were surprised to find that my renal function was out of the 80's.  It is not uncommon for little woman to have lower function.   

Renal function does decline as you age.