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ITP and Kidney Stones

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15 years 3 months ago #5663 by Erin
ITP and Kidney Stones was created by Erin
I just found out today that I have a kidney stone that requires surgery. The procedure is called lithotripsy. Bleeding around the kidney is possible since the treatment uses shock waves directed at my kidney to break up the stone. I had this surgery in the past with no problems; however, that was before I had ITP. I am a lot more worried this time because of the ITP.

My platelet count has been holding steady in the 30's for the last several months. My Urologist said he would work with my Hematologist before the surgery to get my count to a safe level. I am assuming that I will be put back on prednisone (Yuck) to increase my count.

Has anyone else with ITP had lithotripsy? If yes, any problems with bleeding after the procedure? Any idea what a safe count would be for this procedure?
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15 years 3 months ago #5672 by Michelle
Replied by Michelle on topic Re:ITP and Kidney Stones
I've never had that done before - but my Hemo wouldn't even approve regular dental work until I got to 100. That's incredibly conservative in my opinion - I am sure you're going to get a bunch of different responses.
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15 years 3 months ago #5675 by Ann
Replied by Ann on topic Re:ITP and Kidney Stones
If pred works quickly for you, you could just take it for a week or so. You could then do a very fast taper over the following week or even get away without a taper.

I've had kidney stones twice since I've had ITP but have passed them myself. Ouch. I sympathise with you.
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15 years 3 months ago #5941 by Erin
Replied by Erin on topic Re:ITP and Kidney Stones
I found out that they are going to increase my platelet count for lithotripsy by using IVIG. I am currently on Plaquinil for UCTD (Undifferentiated Connective Tissue Disease) -- not sure if this will have any affect on the IVIG.

I haven't had IVIG before. Any advice?
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15 years 3 months ago #5976 by CindyL
Replied by CindyL on topic Re:ITP and Kidney Stones
Erin, make sure you get pre-treated, usually it's Tylenol, Benadryl and Solumedrol. Some say to keep hydrated during the infusion too. I just started taking a large bottle of water with me. I usually take Gravol for a couple of days afterwards, too.

When are you having the lithotripsy done? And what is it? If you don't mind me asking, that is! :) Good luck.
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15 years 3 months ago #5996 by Erin
Replied by Erin on topic Re:ITP and Kidney Stones
CindyL,

Lithotripsy is a treatment that uses shock waves to break the stone into smaller pieces. I will be under general anesthesia while they blast the stone.

I am still waiting for the lithotripsy to be scheduled. One doctor at the kidney center has examined my chart but has requested a second opinion from another doctor before deciding how to proceed. It sounds like they are a bit nervous because of the ITP (last week's count was 34). I hope to have more information tomorrow.

Thank you for the advice about IVIG! I will remember to drink plenty of water before & during treatment. :)
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15 years 1 month ago #8050 by Erin
Replied by Erin on topic Re:ITP and Kidney Stones
I finally had the surgery last month. My hematologist said 75 was a safe count for lithotripsy. The kidney center wanted a count of at least 100. The kidney center was very nervous about the ITP -- They even did a clotting time test right before the procedure.

I was put on 60mg/day of prednisone. My count went from 41 to 180 in a week! The surgery went well with no complications. I finished my taper off the prednisone last week. I would be very happy if I never have to go back on that drug again!!
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15 years 1 month ago #8084 by Rhiannon
Replied by Rhiannon on topic Re:ITP and Kidney Stones
Since the splenectomy I have only ever had IVIG - a 5 day course which yes I took a few days to respond but did respond in the end. Plus I find IVIG to be a breeze. Everyone is different of course but really I would say relax with IVIG and steroids. Its not long term for you by the sounds of it. Hopefully it will work for you. And yes by working hard with my diet and Steroids I have managed to maintain! I had to work at it and didn't loose anything but I did maintain. I can't be too different to everyone else surely?
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