for all who do home instills

[icjen]

I'm having a difficult time trying to get my instills done by my doctor. He wanted to do 1 every week for six weeks of the rescue instill type mix. Insurance doesn't cover the hospitals my uro works with, he doesn't have the supplies or any way to get them in his office, along with no time for them to do in the office. My only option at this point is to go back to the uro who I recently switched from, to get the instills done, which I definetly don't want to do. He's going to be like...I didn't order this! (I never officially called him to say I'm switching. I only canceled my appt and had my uro call for the records).

So, I asked for another visit to his office to discuss any other way we can do the instills (he's not going to charge me for the visit which was nice). I know alot of you do home instills once a week to several times daily. So, what is the best mix I could ask for if I want to go that route? Do I continue to do home instills forever, or until I find my remission? :pray: Is it something you only do for a limited time, like the once a week for 6 weeks kinda deal? I want to learn more about this before I see him on Thursday so I can offer some info to him. Any advice is welcome and thanks alot!!

Thanks,
Jen

[Katrina]

I started at once a week...went up two twice for a bit and than went down to when needed.
I don't know the best rescue installtion ....I've only ever used lidocaine and Heparin....but I suspect that some are harder to get than others.

I really think you may want to start installations with a doctor and than go to home installtions.

Hope you get all the info you need!! Good luck!

[icjen]

I'm hoping that I can have him show me how to mix it and all, and then just do them at home. I wish my own Uro could do them, but my insurance is horrible when it comes to having anything done locally. I have to travel at least 45 minutes just for the nearest hospital covered, and my uro doesn't go to that hospital. Plus, my insurance doesn't cover home health nursing either, so I can't have them help me. I'm really getting tired of waiting months for treatment because of complications of insurance coverage.

So, now that I'm done ranting...how many times did you have your uro do it before you moved on to home instills?

[Romans8:28]

I do mine at home every 4-5days. It really does help if someone can show you first. I use preservative free marcaine/lidocaine/sodium bicarb and solu cortef. They help a lot! Actually I am the first of my URO's patients to do it at home most don't need it quite so often. I actually had them done in the office over a year first!
Good luck I hope you find a way to try them!

[Kimchi]

I do mine daily and use 10 ml Lidocaine, 5 ml Sodium Bicarb and 2 Elmiron Tablets (crushed up fine). I get my lidocain and sod bicarb from a compounding pharmacy and I get my catheters and syringes from a home health place. The Elmiron comes from my regular pharmacy and I have to tell you, the daily treatments have made a world of difference for me. I function pretty well most days, although I still take pain meds everyday, but before the treatments, I was in soooo much pain and had so much urgency and burning. I still have flares and on those days, I can do the instills up to 3 times a day. Oh, I use a 5 French cath which is a pediatric cath, very small for less irritation. Here is a site from the ICN that is helpful. I would take this w/ you to your appt.
http://www.ic-network.com/handbook/rescueinstillations.html

[IcyAngel23]

Kimchi-
The link you posted doesn't have the up to date cocktail so I thought I would post it. i'm a patient of Parsons and things are always changing. That cocktail from Parsons has changed twice since then. It is heparin 4cc (10,000 units per mL) lidocaine 4% solution 4cc (some still use the 2% solution and 8cc) (Parsons has seen better results with the 4% or so I'm told by his nurse) and 4cc 0f 8.4% sodium bi-carb. Hope this helps. I travel to San Diego from Chicago a few times a year to see Dr. Parsons. I'm very lucky that my parents are able to afford the trip. So for those of you who are't able to I just wanted to post the new stuff. Hope this helps.
Kristin

[jpwilkinson]

I recently started doing this at home and use marcaine only. It really does relieve the pain and burning almost instantly. I am presently only having to instill once a day. I am concerned about getting a UTI from the caths but will cross that bridge when I get to it.

[Dixiefireball]

i do mine at home four times a day. my installments is of heparin marcaine and a mixer of water. I mix my own at home.

in the beginning i started off doing them two and three times a week until a RN showed a new study that said it was safe to do them at home three times a day if needed. I talked to the dr about this and he agree if i wanted to try it he would let me since there was a study showing it was safe. I was the first in his office two maybe three years ago to try this.
since then and i also went into remission more and more patients are doing these at my uro's office and having a great success with it.
after a while of doing these three times a day and remission then me leaving remission i ask my uro about four times a day and he approve it. (i only do these under my dr. orders. Never do these without your dr. permission.)
they give me a great deal of relief. I hope and pray i will go back into remission soon.
I have had a great deal of uti's even tho. i make sure everything is clean before use i only use a new cath with each installment, but still a risk of infection is there with each installment. if you do them at the dr. office they can test you before each treatment to make sure you don't have one. I on the other hand will continue my installments threw out an infection for relief when others can't.
I highly believe in these treatments, but sadly they don't work for everyone.
keep your head up high talk to your dr. be open and honest with him about everything the more he knows about you the better he/she can help you on your road to recovery.
Rhonda