Low GFR...help?

[millie]

Hello

I was due to donate my kidney to my 9 year old son on the 20th April, only to be cancelled 5 days before the operation, I was devastated.  Two years ago I did all my testing and passed and had a GFR of 120 then I just did the test again and it came back at 90, I have mild Crohnes disease and that week of the test I had a very bad flare up (which is very rare for me) and my Nephrologist wants me to repeat the GRF in two months time as he thinks it was because I had inflammation going on in my stomach.  Can GFR fluctuate, could it improve or has this happened to anybody else?  I am in great health my creatinine is always in the normal range, I just do not get it, I have had every test even a kidney biopsy just to make sure I have two normal healthy kidneys now this....I don't get it?

Thanks so much for your help.

Milena.

[sherri]

Milena,

I am so sorry that your plans to donate to your son have been put on hold. I can only imagine how devastating that can be. When I was testing to donate to my brother I kept thinking about the possibility of having one of my children need a kidney and how I would say, please take both, I will go on dialysis instead. Of course, it doesn't work that way. The doctors really need to make sure they are not creating a new patient in need of a transplant when approving a donor for your son. Given your history of Crohns disease I am sure this is of great concern. How will having one kidney effect your body's ability to deal with Crohns flare ups as you age is a concern. Being able to manage the high dose of steroids often given to Crohns patients needs to be examined given a lone kidney status. Stress often cause flare ups and taking care of a sick child can certainly be stressful. So even though you have 2 healthy kidneys according to your biopsy, leaving you with one kidney and a chronic inflammatory disease is of great ethical and medical concern to your physicians.

Your son needs a strong mom to care for him once he does get a new kidney so it is really important for you to be healthy. GFR can fluctuate and sometimes dehydration, exercise or other reasons like your Crohns may influence. It is wise for your nephrolgist to keep your health in mind since you are his/her patient. Perhaps you can discuss with your GI doctor or have a meeting with the nephrologist and GI and talk about the risks to your health. In the meantime, try putting out the word to family, friends, community, church or synagogue members to see if there are others who are willing to test to become a living donor. There may be another donor out there who does not even know of your need. Given your son's age, he may need another kidney as an adult and perhaps as more time passes you can see how your health unfolds.You may be able to donate to him at a later time if needed. Children are also given a higher priority on the deceased donor list, so maybe he will even be fortunate to get a deceased donation sooner.

Wish you and your family the best and hope your son has a good outcome with a healthy donor kidney soon.

Sherri