Update

So, I haven't been on here in a while, but I haven't had any new news to report until now. Saw the doc today. It was two weeks earlier than my regularly scheduled appointment, but just because my creatinine was very high, due to having the flu for 2 weeks. I was brought into the ER for IV fluids and potassium on Friday. Now, my creatinine is back to the upper 3 range, which is a lot better, but still not good. We talked about dialysis again. He asked me, frankly, if I wanted dialysis. I felt like saying "Of course not! But you keep pushing me, you *beep*", but I need him as a nephrologist, at least until I move this summer. I'm having more blood work and other tests done, as usual. If they look good, I can cancel my appointment with him for two weeks from now, and not see him for a month.

I'm doing something unusual with this update and going off script for just a bit. I'd like to dedicate this post to my good friend, Michael Lucart, who lost his mother earlier today. May she rest in peace.

Good news!

So, yesterday, I went to the doctor. Both he and I were very pleased with the blood test results. My creatinine is at 3.6 (down a bit). My proteinuria level is decreased, my blood pressure is normalizing AND...AND...AND...I lost 14 pounds, which brings me down to about 170. We did talk about the possibility of dialysis in the future, but, right now, I feel like standing outside the dialysis center, holding up a sign saying "Don't want dialysis? Call me!"

I did visit the dialysis center a few weeks ago, and, if you can avoid it, please do. Not to take anything away from the people who work there, but, I'm beginning to understand why several people have told me that they know people who have started dialysis and then decided it isn't for them.

I'm still doing bimonthly blood tests, but I won't have to see the doctor again until next month. I'm sure I'll have something to post about before then, though.

Toby

I Don't Know What To Call This Post, So..."Humorous Title"

So, over the weekend, I started my new detox program. The first night was hell. Sweats, nausea, headache. After about a day, I started feeling better. I noticed a change, immediately, in the swelling of my legs as well. They had been the size of tree trunks, and now, they're nice and skinny again.

The unfortunate thing about this is, I had friends come in from San Francisco who wanted to take me out. I felt good enough to go, but only after resting up a lot. I think we all had a very nice time catching up.

I've started, as well, doing the lemonade juice cleanse, and would recommend this to anyone, healthy or sick. My recipe goes.

10 oz. water (I use spring water, never tap)
2 tbsp agave (amber--the original recipe calls for B grade maple syrup, but that's just too expensive for me)
1 tsp grated fresh ginger
1 tsp cayenne

It's like a spicy lemonade. I've also started drinking raw carrot juice daily. I'm also more watchful of what I eat. When I first started dealing with amyloidosis, I discovered all the foods I shouldn't eat and thought "Oh, well. If I don't eat those, I'll be fine." What an ego! Now, I'm learning what foods I should eat and adjusting my diet accordingly. It's funny, I went into a fast food restaurant and asked if they had a chicken sandwich that wasn't breaded. They did, but you should have seen the look I got.

Had a blood draw today, too. I'm impatient about the results of this first "post-detox" blood draw, but I'll have to wait until next month to see my doctor.

Will post again soon
Toby

Doctor's visit

Just got back from the nephrologist's office. My creatinine and blood acidity levels are holding steady, which is good news. The creatinine, which is one indicator of kidney function, is at 2.8. Ideally, it should be 1.0 or below. Because of this, he's decided to wean me off of Prednisone (yay!) and put me on another medication. I also no longer have to do weekly blood draws, but rather bimonthly.

Received some herbal supplements in the mail today and will start taking those tomorrow. I've also begun doing a variation of the Master (Lemon Juice) Cleanse.

I don't have to see the nephrologist again for a month, but, if something else crops up, I will be updating this blog in the meantime.

Very excitedly happy,
Toby

Blood tests and a surprise Dr.s appointment

So, this afternoon, I went for my usual blood test. I get them weekly, to make sure that my blood doesn't become too acidic and to check for kidney function, etc. I also found out today that I have to go in to see my nephrologist tomorrow, a week earlier than expected. I was a bit upset about it, because no one had told me beforehand that they changed the schedule. When I went in to give blood, I told them I had "angry blood" today. Ha. I've been doing herbal therapies for kidney and blood cleansing for a few weeks now. I'm noticing a slight change in my vitality (for the better) and hoping the blood tests will show good news. I guess I'll know tomorrow.

If anyone has any stories they would like to share about amyloidosis, I would love to hear from you. I know the course of treatment I am pursuing is not to everyone's liking, so please try to be non-judgemental in your posts.

Thanks

Toby

Introductions

Hi! My name is Toby. I'm in my 30's and, about two or three months ago, I was diagnosed with secondary amyloidosis. According to the medical dictionary, amyloidosis is  "a progressive, incurable, metabolic disease characterized by abnormal deposits of protein in one or more organs or body systems." In my case, it affects my kidneys, causing the filters to not work properly. I've been seen by a nephrologist for this entire time. He suggests dialysis as a last resort. However, I don't know how I will take dialysis and I'm skeptical about the whole thing

The purpose of this blog will be, hopefully, to chronicle my journey with this disease, and possibly offer hope and a platform for others like me, or others who have loved ones with amyloidosis.