kidney damage

[Lovinglife]

Hello all,
It has been awhile since I have logged in.  I've been in a lot of emotional pain this week.  I have been positive for 23 years, my t-cells are currently 274 viral load less than 48.  I am resistant to almost all the meds out there currently taking norvir, aptivus, viread and DDI, along with tricor, and marinol.  It seems I have some kidney damage from the meds, mainly DDI, which my docs have decreased the dose but still want me to take it.  I go in for a ultra sound of my kidneys tomorrow and will see a kidney specialist on Tuesday.  The past couple of days I have just cried like a baby.  I have a great support system, so my phone has not stopped ringing and no one wants to let me feel sad.  Damn it, sometimes I just want to cry and let it go.  Crying, for me, can be a form of soul cleansing, feeling the pain, understanding it, grieving and then moving forward.  There was a time in my past that I didn't feel anything, too busy trying to hide from my pain.  But today is different and I am grateful for that.

I know that whatever changes I need to make in my diet in order to protect my kidneys I can do, it might not be easy, but I will try.  Most of my support system are "neggies" so they can only understand to a certain level and those that are positive just do not have the time that I have or the issue.  But everyone is very supportive.  I was wondering if any other long term survivors have had experience in this area and might be willing to give me some strength and hope.

Thanks for being here!

[BT65]

Loving, though I haven't yet experienced kidney damage, I just want you to know I'm sending lots of thoughts and positive energy your way.  Please hang in there and let us know how you're doing.  Oh, and go ahead and cry, baby.  Let it out.
  Luv,
Betty

[Lovinglife]

Betty,
Thank you for responding.  Your kind words are appreciated.  I feel a whole lot better.  Sometimes it is good to be a baby  . . . then I have to grow up again.  The longer we live the more challenges we must face and I am grateful that there are others who are caring, compassionate, and understand the difficulties of this journey.  Have a wonderful weekend.

Lovinglife

[AlanBama]

So sorry you are going through this.   Kidney damage is a very serious consequence from some of these toxic meds we all take.

When I am emotional about something, and I feel the need to cry, I allow myself to.   Not sure if that is good or bad, but I feel better after letting it out a little.

I'll be keeping you in my prayers.

Love,
Alan

[aztecan]

Hey Loving,

While not having had permanent damage to my kidneys, I have dealt with kidney problems caused by my meds - Crixivan as it happens.

I did the ultrasound and found I had "sludge" (their term) caused by Crixivan crystals forming in my kidneys. It wasn't quite as painful as a full-fledged stone, but certainly wasn't fun.

I now drink at least a half-gallon of water a day, usually more. I don't know if that will help you, but you might ask your doc.

I believe Viread also can cause kidney problems. Has your doc mentioned changing your meds out to something else, maybe one of the new drugs like Isentress or Selzentry? That way you could dump the DDI and maybe even the Viread.

Keep your chin up and keep us posted on how things go.

BIG HUGS,

Mark

[beaubrent]

I would be most interested to know what they recommend for your kidneys. I'm always curious how to cleanse the liver/kidneys and the new reports on the ineffectiveness of water intake (http://news.yahoo.com/s/nm/20080402/hl_nm/water_health_dc_2) don't make me sure.

You mention diet. Can a certain diet help "cleanse" your kidneys from the effects of meds?

[pozniceguy]

I recently went through a weeks stay in the Hospital because of severe Kidney issues ( acute kidney failure actually )   the Dr's say that a combination of the meds ( had Crixivan for 14 yrs) and a significant dehydration caused them to just shut down...the only  real  "cure" was several rounds of dialysis...I really don't reccommend this... which got me back to about 60% functionality  a few weeks of antibiotics brought some more functionality  and in two weeks I will be tested again to see if any improvement.......  so "cleansing" kidneys doesn't seem to be an easy issue to confront and if you reach the stage I did then you are in for a round of Dialysis...

sounds pretty harsh I know but it knocked me out for more than a week....

Nick

[Lovinglife]

Thanks everyone for sharing info with me and thanks for your support.  I went to the kidney doctor on Wed. and he turned out to be a real jerk but he did tell me that the ultra sound showed that my kidneys have shrunk.  He explained that it was due to having HIV for so long; so my kidneys are working harder and there is damage from the meds.  He did say that dialysis was probably down the road.  He wanted to put me on tekturna which he said would help slow the damage process.  I found out it is a medication that reduces blood pressure.  I already have very low blood pressure so I don't want to be passing out all the time.  I am going to find a different doc since I wasn't comfortable with him - we'll see what he/she says.  Regarding changing my meds I see my primary next Thursday, but due to the fact that I am resistant to most the meds out there; it might be difficult to change them.

The longer we live the more challenges we face.  Thanks for being here.

[BT65]

Loving, good luck with finding a new urologist and please keep us updated.

[allanq]

I'm sorry to hear of the pain that you're going through.

Several years ago, my creatinine level suddenly starting increasing. Normal is below 1.3; mine was at 2.2. At the time I was taking Aptivus/Norvir, Fuzeon, Sustiva, Truvada, and Tricor. I was referred to a nephrologist (kidney specialist) and he had me stop the Viread (a component of Truvada). My creatinine level went down, but not enough. Then he had me stop Tricor, and that did the trick. My creatinine level returned to normal.

So it may not be the Videx, but rather the Viread and/or Tricor that are causing your kidney problems. Or it might be all three.

You mentioned that you have extensive drug resistance, but I hope that if you do have to stop the Videx or the Viread, you'll be able to use one of the newer drugs, like Isentress.

I hope this helps.

Good luck to you.

Allan