My right kidney had to be fully removed by the time its VHL tumors were discovered. Two surgeries to remove VHL tumors from my left kidney took it down to about 70% of full size, but all of that has still been fully functional and not diseased. Since then, it's grown back to about 75% of full size.
I assume that extra 5% is also fully functional, because my average creatinine level has dropped over that same period from 2.0 or higher to staying kind of stable at 1.9 to 1.7.
I've never required dialysis.
Since that first surgery to remove my right kidney in Dec. 1995, no one told me until about a year ago that the gadolinium contrast dye that's been used during all my MRI's is considered unsafe for the kidneys when one's creatinine is beyond a certain level.
It was the radiologist who was giving me an MRI at the time who had told me. My creatinine level at the time might have been 1.9, but I think it was 1.7. In any case, he said that I was right at the line and he didn't like giving it to me but he did anyway since I've been getting gado almost every six months since 1995, and my doc's MRI order had requested it.
When I mentioned that I've never felt any strange reactions to it, he said that the problem is that it can be cumulative. And when I mentioned CT scans as an option, he said the contrast with that was even less safe.
Not only have I been getting gado with my MRI's during every six-month checkup, but I've been getting it TWICE during each checkup. On one day I'll get gado during a combination of an abdominal MRI and a brain (with IACs) MRI. After letting that dye flush out over night, the next day I'll get it again during a full spinal MRI.
I don't know if the radiologist's sudden concern is due to a change in the version of gado, or a new policy for its use, or just stronger enforcement or concern for a policy that already existed.
On reflection since then, it wouldn't surprise me if that policy was mainly made because of the sensitivity of DISEASED kidneys to gado. I doubt very many other patients with high creatinine levels who get MRI's there (or anywhere) have a fully healthy kidney (though a partial one) that is NOT diseased.
At least I've been able to convince my doctors that I only need each type of MRI once a year rather than every six months. That will cut the gado use in half.
But I was thinking of dropping gado completely until any tumor that happened to be present had reached "surgery" size or symptoms appeared. The reason I've been considering that is because all of the needles that have been put into me have created many spots of scar tissue that are often causing needles to miss. This has been a real problem especially with IV needles (such as gado requires) for years. One person took five tries to insert the IV for gado (and almost always it takes at least 2 tries). And I hate to leave it in overnight for the next day's MRI, but it does mean one less insertion attempt.
So I have two questions:
(1) Should I be concerned about gado possibly being unsafe, given my creatinine & partial-kidney condition?
(2) Would a yearly MRI of each type withOUT gado be good enough to at least find & monitor a tumor? So that I could hold off on getting gado (and the needles) until tumor size or symptoms indicated that surgery time was near?
Phew! I do tend to get winded when I make a post. LOL
Nelson
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