So I went to the new nephrologist today(kidney doctor). Overall I would say it went well.
When the doctor walked into the room and introduced himself the first thing he said was
1971 huh? That's the year I was born. We're the same age!"
I was shocked. My other nephrologist is much, much(much) older than he is.
I instantly felt a connection with him. I felt like there was somewhat of a generation gap between myself and my other nephrologist at times. I often felt as though he didn't "get" me.
This doctor "got" me.
So he starts of with the usual health related questions, going over the health history form I had filled out in the waiting room. I can't tell you how many doctors I have seen that don't do this! They give a cursory glance at the form, and then barge right into the exam.
Not this doctor. He took the time to go over the answers I had provided, asking me additional information along the way.
He didn't have all of my records from the other doctor, just my latest test results, so he asked me what the other nephrologist had told me regarding my condition.
I told him the type of kidney disease I had been diagnosed with, and small amount of information that I had been provided with.
It is an Auto-immune disease
It is degenerative. Over time my kidney function will decrease until they shut down completely, requiring Dialysis, and eventually a kidney transplant.
There is no treatment.
There is no cure.
He agreed with most of what I said.
And this is a HUGE but.
He feels that possibly I have more than one type of disease going on. One that us treatable.
He said often IGA masks the symptoms of other types of kidney disease and people will go untreated for the other disease because they think it is IGA and there is nothing that can be done.
The reason he feels this is because my body had such a positive reaction to the Prednisone.
He said that IGA is highly unlikely to respond to steroids. In fact, he said the chances were only about 1% and that he had never seen someone with IGA respond to that type of treatment at all.
My other doctor seemed quite shocked that the Prednisone had worked, but he never once questioned why. He never looked for an underlying reason. He just accepted it for what it was, and never thought twice about it.
This doctor is not happy with the results of my urine tests. The same results that my doctor said were "fine".
I currently have 2 grams of protein in my urine. He said that was not acceptable. He gave me some odds.
If I have 2 grams of protein in my urine, the chances that I will need a transplant in 7-10 years is roughly 60-70%.
If we can get the level of protein down to 1 gram, the percentage drops to 40-50% in 10-15 years.
If the protein level goes down to .5 grams(or less), the chances drop to 20-30% in 15-20 years.
Of course these are all estimates.
But I personally prefer those last set of numbers. He can't understand why my doctor would be okay with me having 2 grams of protein in my urine.
He looked at me and said "Do you want me to be honest with you?"
I chuckled nervously and said "I don't know. Ummm..I mean, Yes."
"I want to be proactive and try an extremely aggressive approach for your disease."
I almost burst into tears right there. Seriously. I wanted to hug the man.
Up until this point I have been told "We have done all we can do. There is nothing more to be done. Now we just have to wait and see what your body decides to do."
I don't know if you know this about me, but I'm not a "wait and see" kind of person. Especially when you are talking about organ failure. MY organ failure.
I told him Yes, of course, I will do whatever you want me to, whatever it takes.
He sent me right over to the imaging center for a renal ultrasound. That same day.
I go in next week for a complete lab workup(which they do right there in the office-love that), then in 2 weeks when the results come in we sit down and go over the game plan.
He wants me to have another kidney biopsy.
Am I thrilled about it? No. It is an uncomfortable procedure.
But I will happily do it if it will help him come up with a plan to delay organ failure as long as humanly possible.
I left his office feeling ecstatic.
After the ultrasound though, as I got into my car I became very emotional. I sat there in my car, leaning over the steering wheel and cried.
I didn't even know why I was crying. But once I started I couldn't stop.
I cried great, heaving sobs until I was spent. Then I called Joe and told him the news.
I had a strange feeling inside the entire way home. I couldn't quite put my finger on it.
Then as I pulled into the parking garage at my apartment, I realized what it was.
It was Hope. For the first time in a very long time regarding this crappy disease, I felt Hope.
And it feels good.