Posts Tagged ‘autoimmune diesease testing’

I have stayed somewhat silent on this because I was waiting for test results. But today was a “Good News/Bad News” kind of day and the news was the same whether I picked good or bad.

I have had gross hematuria since January of 2011. In laymen’s terms, that is visible blood in the urine. Yes, it is as freaky as it sounds. And probably TMI. But – if I can help someone else going through something even remotely similar, then TMI is not too much information. Except – I don’t know that I can encourage anyone after today.

Back up: the last time I saw my urologist, he said he couldn’t help me anymore. It is not a kidney stone grinding away at the flesh of my kidney. It’s not a bladder infection or cancer. It is very, very visible. He said he was baffled, but he had pursued the matter as far as he could and he had no more bright ideas. He wanted to refer me to a kidney specialist (or, rather, a group of kidney specialists).

I took the first doctor available at the clinic he recommended. The clinic is located in one of Portland’s largest hospitals, right across the street from where I work. Convenient.

My new doctor, a Thoracic surgeon, is a tall, slender woman with mousy brown hair like my own. She keeps hers cut at her shoulder; mine is long and stringy with age. She is serious, but good-humored, and very thorough. I spent about half an hour with her in the first meeting, and most of that was answering questions and waiting for her to enter the data into the computer. She ordered several blood tests and a UA, all of which I could do at St. Vincent’s Hospital before I left that evening. 8 vials of blood and one UA later, I drove home.

And waited. Prayed. I wanted – no, I needed – an answer to this puzzling question of red blood in my urine.

Today was the follow-up. And she presented it as Good News/Bad News.

They know nothing. The majority of the test results showed nothing. One test result showed a high ANA (Antinuclear antibodies, a possible sign of a disease that attacks the body’s own tissues). One, out of eight. It could be a false alarm. It could mean there is a small infection.

So: good news = nothing. Bad news = nothing. NOTHING. I feel like a hypochondriac searching for a deadly disease with a 6-month survival rate, only I have a very real symptom (visible blood in the urine, including clots) and I don’t want to have a 6-month survival rate.

But I do have a game plan, and I think that is what I really wanted. Some sort of plan that helps me think we are on top of this… this “whatever”.

Game plan: kidney biopsy. Don’t google it. It sounds horrid and painful on the InterWebs. Basically, they numb my back and insert a needle into my kidney (there are no nerve receptors in the kidneys) and withdraw a small portion of the kidney to see if there is a presence of an autoimmune disease attacking my kidneys. The sample goes to the lab, the lab gets back to the doctor, there’s a follow-up and a new plan.

No hurry – I’m certainly not on death’s door. So I can do this at my leisure. Day surgery.

*IF* the biopsy comes up inconclusive, we just monitor my kidney function. As of today, my kidney function is great. There’s really no reason to panic. Ignore the blood.

*IF* the biopsy comes back with something, it will most likely be the *early* stage of some autoimmune disease. As of today, my kidney function is great. There’s really no reason to panic. Ignore the blood.

And we will monitor my kidney function, either way. If it is the latter, then we monitor the disease’s progress and administer the horrific drugs *if* it gets worse. It could just go into remission all on it’s own.

It remains a mystery. I am not going to die of it any time soon. I just need to learn to look away from the toilet.

Sorry if that was TMI. I’m just sort of frustrated – and relieved.

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