Let's just say it was a LOOOOOONG day. We left the house around 5:45am...we were trying to coordinate my clinical trial study visit with my follow-up visit, and it wasn't easy. I had to collect my first morning urine from Thursday in a sample cup, then collect my 24-hr from Thursday/Friday. Fasting, of course, is never easy for me, but I had to since we wanted to do a lipid panel. So we went to the research center at 7:45, dropped off my urine from Thursday morning, drew labs for my clinical trial study AND for my follow-up labs.
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| Luckily (I guess), since it was so early, we were the only ones there, so Izzy and Joacim came back and had a seat with me while the nurse did her thing) |
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| I'm glad that, after all these years, I can still smile through this. |
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| And then Izzy got a hold of my phone and decided to take some photos. |
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| Izzy received LOTS of compliments this day...on her shoes, her outfit...her smile....and she WAS fantastic this day. |
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| After the blood draw, I dropped my 24-hr urine off and we headed to Mac's for breakfast. OMG...I love this place. After that, we headed to Barnes and Noble (which is becoming an expensive tradition) but not before stopping to play in the fountain outside. |
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| My appt with Dr. Fervenza wasn't until 2:30pm...so we had a stupid amount of time to kill. After ambling around the shopping areas, we finally headed up to the 19th floor and found a spot to rest. SOME of us got a better rest than others (I did get a foot rub out of it before he drifted off though :) |
Let's get down to business, because I'm pretty freakin tired right now, and I have to get up at 5:00am for work (so this will be VERY abbreviated).
Bad news:
protein is up (no surprise there) to 7857g.
triglycerides up to 279 (from 225 in March)
HDL up to 85 (from 64 in March)
LDL up to 328 (from 204 in March)
BUN up to 38 (from 24 in March)
Cholesterol at 467 (from 323 in March and 423 3 weeks ago)
creatinine up to 1.7 (from 1.2 in March)
Good news:
albumin is holding steady at 2.1 (up from 2.0 in April)
Since I'm at therapeutic doses of Acthar, and my protein is not decreasing, we're going to finish off the last 2 vials that I have (weaning off of them). We're increasing my Prograf to 5mg 2x/day, because my trough value is only at 3.6, and he's hoping for something around 7 or so (I told him I have the Prograf metabolism of a bull :). He gave me Ambien to help me through the insomnia, but it should also subside once I'm off the Acthar.
I've noticed that I'm MUCH more tired this week than I've ever been. I'm getting sleep (although I'm not sure if it's quality sleep...we've got a little individual that keeps sneaking in..plus Joacim says that I snore), but it's not enough. It's never, ever enough.
I asked my doctor again about plasmapheresis, but he explained to me that, because it's so aggressive, if you don't hit FSGS at first with everything you have, then it's unlikely to work later (especially after all of the years of treatment I've had). At this point, I'm thinking we'll keep on with the Prograf, but when I go back in October, we'll eventually be off of that and then I'll be right back at the waiting game. I'm not being negative....just realistic.
I had a great talk with my friend Emily tonight, and it was good to get some of this stuff out that's floating around in my head. I'll eventually put thought to paper, but it'll have to wait for a time when I have more energy. Good night all, and thanks for caring :)
Glad you have folks that you can talk through this stuff with, I truly believe it makes all the difference!
ReplyDeleteI am going to ignore all of your stats and say how much fun it is when a kid gets a camera! It's really different to see things from their (lower) perspective! Good times. :)
I have been reading your blog for awhile. Your situation is very similar to mine. I resisted every drug and could not get my protein loss down. I was always between 20 and 35 extra pounds of water. My kidneys went from 90% function to 20% in 2 years and this year in Feb. they failed. I have been doing Peritoneal Dialysis at home. The FSGS still causes major protein loss but my life is really close to normal. Everyday I feel good, work full time, take care of 3 kids, and have a very active lifestyle. I was unable to do a lot of this when I was swollen and felt crappy everyday because of drug side effects.I don't swell anymore because I remove the fluid everyday that begins building up in the abdomen...once it is removed it doesn't spread to the legs, face, anything. I would have never thought that this path was positive for FSGS patients, but I now think it is. The only drugs I have to take are phosphorus binders and renal vitamins. Our doctors don't explain this path to us...I hated the drugs and having a crappy quality of life. I was also fearful that the drugs would take a toll on other parts of my body. My PD nurses say that primary kidney disease patients can live a fairly normal life (and longer time on PD) than people in end stage renal failure because of diabetes or something else primary to kidney disease. If I were you (now that I have this perspective) I would get educated on dialysis...even transplant is still higher risk for us until they know how to block FSGS reoccurance. I NEVER would have thought a year ago that I would be advocating PD.
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