Search found 262 matches

by nycpetit
Sat Nov 21, 2015 3:52 am
Forum: The KPG Forum
Topic: Alport Syndrome
Replies: 2
Views: 4671

Alport Syndrome

Been a loong time since I posted here. Had my tx August 12 2004. This summer I finally found an eye doctor who could diagnose my vision issues. I have been everywhere and always told "this is the best we can do" No glasses, contacts hard or soft or scleral worked. It was the latter that were suppose...
by nycpetit
Sun Aug 03, 2014 12:05 pm
Forum: The KPG Forum
Topic: 10 years 8/12 and related question
Replies: 3
Views: 4755

10 years 8/12 and related question

Hi everyone! I am an oldie here. Last posts were eons ago. I am nearing my 10th transplantversary on August 12th! Unbelievable. This is a question regarding post-transplant meds. I take only cellcept and prograf and levels of prograf are kept at around 5.5 at the 12 hour trough level. I have been ve...
by nycpetit
Sun Apr 20, 2008 7:41 pm
Forum: The KPG Forum
Topic: Question for those taking Tacrolimus
Replies: 40
Views: 21435

Prograf

The amount of prograf you take is variable because of one's weight, the desired level of prograf in the blood trough, and your metabolism. I believe it also has something to do with genetics/race/ethnicity. The hospital I went to at first, that refused to do my transplant, said they only used progra...
by nycpetit
Fri Aug 24, 2007 8:53 pm
Forum: The KPG Forum
Topic: Transplants and Alcohol
Replies: 14
Views: 14431

Drinking

Hi Hal! Yea, I know, long time no hear from. :) I never asked per se if I could have alcohal, but as far as I know, it's not a problem. I have a drink here and there, sometimes even two or three, and haven't had an issue. (knock on wood). I just make sure I stay hydrated, and especially drink water ...
by nycpetit
Sun Apr 22, 2007 3:06 am
Forum: The KPG Forum
Topic: Albumin levels
Replies: 3
Views: 4451

I am on MMF, and will be all the time. I take that and Tacromilius. I am now nearly 3 years out from my transplant. Can't believe it! I take 500mg twice a day. I can look up my levels for you as soon as I find the papers. I don't understand your numbers (I am in the US) so it's rather confusing for ...
by nycpetit
Sun Apr 22, 2007 3:04 am
Forum: The KPG Forum
Topic: Helen's had her transplant
Replies: 42
Views: 26897

Great news! Best to both of you! What a wonderful gift your brother has given you!
by nycpetit
Sun Apr 22, 2007 2:59 am
Forum: The KPG Forum
Topic: HAPPY TRANSPLANTIVERSARY PAM - !!!!!!!!!!30 YEARS!!!!!!!!
Replies: 26
Views: 12943

Wow

That is super fantastic! Congratulations. How is the bean doing? I know that last year the creatinine was slowly rising. Has that stopped? Stabilized, gone down? I too have not been on much lately. I live on South Beach now (FL) and work as a pilates instructor! So I am not on the computer, or near ...
by nycpetit
Sat Apr 07, 2007 11:02 pm
Forum: The KPG Forum
Topic: night sweats
Replies: 15
Views: 9924

Prograf

The burning sensations ARE from the Prograf/tacromilius. That I was told explicitly when immediately post-transplant. It lessens over time, and with the adjustment to it, but it does still affect me from time to time. I am about 2.5 years out now from my transplant. I still get the burning hands, fe...
by nycpetit
Tue Nov 28, 2006 3:09 am
Forum: The KPG Forum
Topic: and the news so far ...
Replies: 25
Views: 13765

Yea!

I have been thinking nonstop of Hal and his brother. Thought of them going in on Sunday, and that he was "under" when I thought of him yesterday. I am thrilled and thrilled for you guys!
by nycpetit
Sat Jul 29, 2006 3:02 am
Forum: The KPG Forum
Topic: all clear!!
Replies: 11
Views: 7262

yea!

What a relief. I had a scare of my own, due to transplant meds and immunosuppression a couple weeks ago. So far, not cancer. I know the relief you are feeling!
by nycpetit
Sat Jul 08, 2006 5:19 pm
Forum: The KPG Forum
Topic: Blood pressure
Replies: 15
Views: 20056

Blood pressure

The new numbers in the States are as someone here mentioned about 110/60-70. But your numbers are NOT bad. And the fact that it is sometimes under 120 (top one) is a good sign. As Amanda said, try to be sure you are as hydrated as possible. That can affect bp. If it is more consistently above or aro...
by nycpetit
Sat Jul 08, 2006 5:16 pm
Forum: The KPG Forum
Topic: home dialysis
Replies: 9
Views: 7373

Good luck

Good luck. I think you'll find that being able to have some control over your health, and being able to dialysize more often, will in the end be a gift that only being able to attend a clinic cannot offer. As Monkey said (and I hope it went well Monkey!) they won't leave you on your own even after t...
by nycpetit
Sat Jul 08, 2006 5:10 pm
Forum: The KPG Forum
Topic: How do you cope?
Replies: 6
Views: 5620

Loss

I don't think there is any specific way to get over loss. Like with anything that requires coping, it takes that magic word, "time." Remember how hard it was to deal with illness, realizing we'd never be "okay" and facing things most people (well, who is to say most, but you know what I mean) don't ...
by nycpetit
Sat Jul 08, 2006 12:44 am
Forum: The KPG Forum
Topic: Hey everyone I am still alive!
Replies: 3
Views: 3371

Hey everyone I am still alive!

I am fine! Sorry I didn't respond to a few things here. Things are very busy. Newly married, and trying to get around to see everyone. There's been some family drama going on, and I had to cancel our celebration. It's a shame but it's also created a lot of stress for me. My mother and stepdad, donor...
by nycpetit
Sat Jun 10, 2006 7:37 pm
Forum: The KPG Forum
Topic: metal taste help please
Replies: 12
Views: 31317

metal

I always felt like I had a metal bar in my mouth. Things I loved (as others have mentioned) before I began to dislike. I needed very intense flavors, like super hot cinnamon gum. :lol: Coffee and chocolate, and soda, and many other things just tasted sour. And others mentioned that my breath had a s...