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blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 7/27/2011 9:42 AM (GMT -6)   
Well, my wound vac just came and I'm set up to get it "installed" on Fri morning (this is for my perineal, i.e. butt, wound that has not healed after five months).

I asked my gi doc if I could go off of coumadin six weeks early to make things a bit more comfortable w/the wound vac (my periods are horrendous on coumadin), and he said yes!!! That means I'll be taking no pills at all except for vitamins, can't remember when I last had that. (The coumadin was for a blood clot found on a CT for something else a week after my surgery)

I'll be eating a lot of leafy greens the next few days to counteract the coumadin and get back to normal as fast as I can (greens = vitamin K, K stands for coagulate in German).

Fingers crossed that the wound vac works, because otherwise it's more surgery.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 7/27/2011 10:22 AM (GMT -6)   
best of luck to you!
DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 433
   Posted 7/27/2011 10:29 AM (GMT -6)   
Good luck!! The wound is pretty small, right? Does it still bleed or have discharge?

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 7/27/2011 11:15 AM (GMT -6)   
Thanks! Yes, the wound is fairly small -- 2-3 cm deep now. It has discharge and blood, but I think that's because I'm packing it w/mesalt to keep it clean; when the packing falls out, the gauze is pretty clean.

I am so frustrated now, trying to figure out how much this thing is going to cost. The company yesterday said I had to pay 30% and the list price was $4000 per month, but they had a negotiated rate w/the insurance company, and I had to call the insurance company. So I did that, and they said that I had to call the wound vac company. So I called them back and they said ask the insurance company.

Really??? If they've negotiated a rate, shouldn't both parties know what it is? I asked the wound vac person to call the insurance company and figure it out and get back to me, and she is putting in a request for someone else to do that today.

They both kept telling me 30% -- sheesh, 30% OF WHAT???? They also said that when I got a bill when it was done, I'd find out the rate (gee, that's helpful!)

I'm not sure it's even useful to ask others how much it cost them; it's like the airlines, many different prices for the same thing. Sigh.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 433
   Posted 7/27/2011 12:26 PM (GMT -6)   
I believe my insurance company was billed for about $4000 per month. I have decent insurance and my deductible was met so I didn't have to pay anything out of pocket.
Although I did have a problem with one so they were going to send one out. The guy came to drop off a new one and he was extremely rude to me because I asked him how to turn it on properly. Apparently the delivery people are just that, delivery people and have no idea how to use it or who to contact for questions. He ended up running to his car when I went to get the bad one and give it back. He left squealing tires and all.
Then the company tried to charge me for 2!! lol
Anyway I talked to the nurse that packs me today and she said recently they have come out with so many new dressing other than the foam. I guess they have one with litocane so it actually numbs the wound so it's not painful.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 710
   Posted 7/27/2011 7:03 PM (GMT -6)   
I had to pay 20% and my insurance covered 80%. This came to $23 a day for my portion, and I had it for a little over 6 weeks making my cost around $1000. Plus the home health nurse visited 3 times a week to change the dressing. Each of these visits cost me $29, which was my 20% portion. My bill for nurse visits was around $600. It is a pricey little contraption. Thank goodness for payment plans! It is going to take me a while to pay off my wound vac bill, but it was worth it.

The company for the wound vac I had was KCI.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 710
   Posted 7/27/2011 7:09 PM (GMT -6)   
I never heard about the dressings with Lidocaine, but that would have been nice. My dressings (black sponge variety) were very painful to change, so my surgeon prescribed me liquid lidocaine. My nurse had me insert it into the wound vac hose 20 minutes before the change with an irrigation syringe so that it saturated the sponge and numbed the wound. Once numb, pulling the sponge out of my wound was painless. Before that, dressing changes made me yelp out loud.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Post Edited (Blueheron) : 7/27/2011 7:17:24 PM (GMT-6)


Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 433
   Posted 7/27/2011 7:43 PM (GMT -6)   
I also used KCI.
The nurse who came to do my packing today(who isn't my usual nurse) told me about it. She said it's really knew. Probably came out sometime this year. I really don't know too much about it.
I used to have the black sponge too. It would actually bond to the tissue and get stuck, so I would have to pull really hard until it broke loose and gushed blood for 5 minutes. The nurse had me taking vicodin but I don't think it does anything for that kind of wound. It was still extremely painful.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 7/27/2011 7:56 PM (GMT -6)   
My company is KCI also, and they sent the black sponges. I will ask about the lidocaine, thanks for the tip. I'm not sure whether mine will be better since my wound is smaller.... maybe not if sticking is the issue. Brian, that sounds awful, and have to wonder how much worse it'd be if I were still on coumadin, which causes more bleeding....

No one ever called me back today, so I will investigate costs again tomorrow. I have not yet sent back the form that I'm supposed to send back immediately to authorize billing insurance..... seems reasonable to me that I should know how much I'll be charged first (although, of course, if they don't bill insurance, they bill me.....). Tomorrow I will ask for supervisors. That'll be fun..... (at least I'm not sick while doing this).

I think I've reached some kind of cap with the ostomy supplies.... I used to have to pay 30% on them, now I pay nothing.... hoping that cap will apply to the vac too. I asked my nurse, and she thought most of her patients didn't pay at all for the vac.

In any case, thanks for the $$ info, helpful to know. Glad it was worth it to you, Blueheron. I had a visiting nurse every day for weeks at first to pack my wound, and I didn't have to pay at all for that.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 710
   Posted 7/27/2011 8:26 PM (GMT -6)   
Brian- I had the same thing happen with the tissue healing into the sponge and then having it bleed when they pulled it out. I guess it is pretty normal, but my nurse said most people don't find it that painful. I guess you and I are anomalies:)

I was so bummed when my incision reopened after the first of the year, requiring a third surgery and the wound vac. Had it had happened within the same year that I had my ileostomy and my UC hospitalization, I wouldn't have had to pay a dime as I had already met my maximum out-of-pocket for 2010 . Unfortunately, everything starts over with the new year.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 572
   Posted 7/27/2011 11:48 PM (GMT -6)   
Hi...I too had the wound vac for 3 weeks prior to discharge.  On blood thinners, it did occassionally bleed, and gosh I still remember how painful it was and how I yelled at the WOCN to take it easy.  Was told to press the pump for an hour prior to her arrival, but most times she just came unannounced.  When I got home, I was authorized through KCI, the vac arrived 2 weeks later.  I was also on coumadin.  Using other wound care supplies and I was healing well, I just remained on those and denied the vac.  My insurance was to be billed $3600/month.  Hope you get it soon and you start to finally heal...wishing you the best!!!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 7/29/2011 11:17 AM (GMT -6)   
I got the wound vac put in a bit ago. My sugeon and my nurse were very pleased to see that the wound is only half as deep as it was last time they saw it -- guess vacation relaxation or dry air or something helped. My surgeon said she was almost tempted to just stitch it up, but she thought the wound vac would be faster for healing. They both seem very confident that this is going to work, and they think in two weeks or less. I go back next week to see them again, and I have a visiting nurse on MWF to change dressing.

I asked about pain, but they thought that since my wound is small and chronic, not acute, that it's different tissue and it shouldn't hurt that much.

One thing I'm wondering is how long the charge lasts. Appreciate it if anyone can tell me.

I am hopeful that this won't be as bad as I feared. I think the worst part will be having to rely on sponge baths most of the time in the August heat, but whatever, not that big a deal.

I was telling my nurse about this list, how much you learn from people who are living w/the same thing 24/7..... she has a boyfriend w/an ostomy..... they actually met online, it was pure coincidence.... she was saying how seeing what he deals with has really bumped her up a level of empathy for her patients (and she was quite empathetic to start with....)

I can't help it, but I'm already wanting to call this thing, "Mr Coffee."

Thanks for all your help.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 433
   Posted 7/29/2011 11:57 AM (GMT -6)   
So good to hear! I hope it does heal up in a few weeks for you.
As far as the charge goes I know i've had it unplugged for more than 12 hours before the battery got low. You shouldn't really have to worry about it as long as you have it plugged in during the night.
I would just take all the dressing out before the nurse gets there and take a shower then.
You can also take a shower if you just unplug the drain tube. Just reconnect it and turn the machine back on when you get out. I've patted the tape try and it always still stuck.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 7/29/2011 1:15 PM (GMT -6)   
Thanks Brian, appreciate the info and good wishes. Any new developments on your wound?
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 433
   Posted 7/30/2011 2:03 AM (GMT -6)   
As far as my wound goes it's still the same. BUT, i did start using that Microcyn solution I was telling you about. Everything I looked up online makes it seem like a miracle solution so I am hoping it works as well on me as it does everyone else. It debrides the wound and then brings oxygen to it and forms new tissue and there are no known side effects. It also kills just about any bacteria, even MRSA. A lot of people say their wounds heal within 6 weeks. Man would that be awesome!

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 710
   Posted 7/30/2011 11:44 AM (GMT -6)   
Glad to hear your wound vac is all hooked up and that you may be healed in as little as two weeks... and that your wound got smaller beforehand too. That is such great news!

My wound vac charge held all day without having to plug it in. I usually plugged the machine in as I slept. One night I accidentally forgot to turn on the power strip that I had plugged it into. I woke up around 2 a.m. only to discover that my vac had run out of juice. I had no idea how long it had been off (and the limit is two hours), so I had to call the wound care nurse in the middle of the night to change the dressing. I felt so stupid!

It does sound just like a coffee percolator. I was taking mindfullness mediation classes during the time I was on the wound vac. At my first class, I left it on and after the meditation, all the students were asking what that weird noise in the room was. I had to fess up:) After that, I turned it off during the meditation portions of the class as it was just too annoying. My nurse had said it wasn't a problem to turn it off for 30 minutes here and there.

I took showers while on the wound vac. Like Brian, I just unhooked the hose and turned off the machine. The plastic they use to stick the sponge to your skin is waterproof so nothing could get into the wound.

One of the other slightly annoying thing about the wound vac was just that I would spring air leaks now and then and the alarm would go off. I got very good at patching them up though.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 7/30/2011 8:07 PM (GMT -6)   
Brian, I'm so glad you finally got the microcyn in hand, and are starting to use it. Fingers crossed. Really hope it works as advertised so you can leave this nightmare behind you. It would be awesome. Keep us posted.

It is very interesting to hear that you both took showers. I will check w/my nurse to be sure, as she was clear on that point. I took a sponge bath today, first time in a while, and it wasn't bad .... when I was taking sponge baths before, it was right after surgery, and I had all kinds of mobility, strength, and stamina issues that made it hard (or made me need help). Washing my hair in the sink was actually kind of refreshing.

I am surprised that this thing isn't as bad as I thought. So far, no issues w/disconnecting it, and I had my first time forgetting it was there; my partner had to stop me from tripping as I walked across the room w/the vac on the floor.

I was thinking of going to yoga this week. I go to this really gentle restorative class, and I also do stretching at home. There was only one pose that I regularly do that I couldn't do because of the vac (of course, I was already modified, due to the wound).

Did you find that the visiting nurses had different degrees of skill in putting on the dressing? I certainly found that w/packing the wound. I feel like my nurse did such a good job of angling the "bridge" so that the cord is not that obtrusive .... I kind of want to leave it on so the next nurse can see how she did it.... or do they all just know how to do it? I had about 15 different visiting nurses at first after surgery, and even in packing the wound there was such a difference in how well they did it..... this time is only MWF, so hopefully I won't have such variety!
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 710
   Posted 7/30/2011 8:28 PM (GMT -6)   
Interesting that your nurse said no shower. Mine said it was fine as long as I disconnected the hose and turned the machine off. I also taped a piece of Glad Press and Seal wrap over the dressing just to keep it extra dry.

I had a few different nurses change the dressing, but mostly I had the same nurse as she was assigned to patients in my area of town. They all did it a bit differently, but equally effectively. If you like the way the hose is angled, you can mention it to the next nurse. That is what I did when I happened to have a different person. I think most home health nurses have a lot of experience with wound vacs. At least mine did. She actually brought some nurses-in-training along a few times to show them how to do it.

The first day I had the wound vac, I sat it on the counter when I was brushing my teeth. I totally forgot about it and turned around to briskly walk out of the room. The thing flew off the counter, yanking on my belly as it became airborne. Fortunately the machine landed in a soft pile of clothes. It hurt, but fortunately the suction was enough that the hose didn't get pulled from my belly. Never did that again.

People will be curious about it at yoga I am sure. Just another chance to talk about surgery:)
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 8/1/2011 1:15 PM (GMT -6)   
Well, sigh, the visiting nurse did the dressing a lot differently, and less comfortably. She complained a lot about not having enough foam, and ordered me the medium size for next time, even though it's a very small wound (but it needs a big bridge). She made the "bridge" thicker, so it's very ropy across my butt, and the tube is lower (she said to only sit on the other butt cheek until wed). She also put drape under the bridge, because she said my skin was irritated from having the foam there last time, so I just have a ton of plastic on my butt..... I am really cranky about it all today. Just feels weird at this point to have someone taking my vitals and asking to see my stoma (I said no, not going to take off the pouch, no reason to). I had to do another intake again

The fun part was when she got out a pen to list my meds, and I'm not on ANY!

Also she said it was 4.2 cm deep, which made me worried -- biggest number in a while, but she called my nurse, who wasn't worried, said the numbers have varied a lot, depends on who is measuring, plus they might have opened it up some on Fri (love how seeing the doc often makes the wound worse....)

That is kind of funny w/the wound vac on the counter..... I've been keeping mine on the floor mostly, don't trust myself.

I'm not sure about yoga. This nurse didn't see confident that the vac would stay in place, and the location is more bothersome than before.... course, I especially need the yoga w/how stressed I'm letting myself get over all of it.... sigh.

I think I'm having a different nurse on Wed, and I will be able to tell her more of how I want her to do it....

I did check in about the shower, and my nurse thinks due to the location it's a bad idea. I did start my shower w/the dressing on today, and it was pretty easy to pull off in the shower. Nice to have a shower, though, that's for sure.

I was surprised at how awful the dressing smelled when I took it off. Wasn't prepared for that....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Post Edited (blueglass) : 8/1/2011 12:23:55 PM (GMT-6)


Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 710
   Posted 8/1/2011 3:05 PM (GMT -6)   
I had forgotten about the smell. It was awful. Thank goodness it only smelled when the dressing was removed and otherwise it was locked in!
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 8/4/2011 5:42 PM (GMT -6)   
Well fortunately the nurse on Wed did a lot better job -- I was kind of miserable before that, with the wound vac leaking every time I went to the bathroom or moved the wrong way. Fortunately the nurse from Wed is my new regular visiting nurse, so I hope this will be OK. The angle of the bridge makes a huge difference.

Here's something kind of funny -- I was concerned because after more than 24 hours there was no fluid at all in the tube or canister, and then today I got a massage, and when I got up, the fluid was running..... my massage person was not surprised at all, but I was.....

The wound has measured 4 cm deep on both Mon and Wed..... pretty discouraging, as it was less than 3 on Friday..... guess my surgeon or nurse opened it up a bit poking around, and the wound vac has not been on long enough to reverse....

The wound vac reminds me of IV's in the hospital.... attached almost 24/7, you learn to maneuver with them, and how well they are attached makes a huge difference in quality of life (and you often have no say in who does the attaching)....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

hoghead
New Member


Date Joined Dec 2012
Total Posts : 1
   Posted 12/6/2012 9:09 PM (GMT -6)   
My wound vac arrived today for treatment of an open wound resulting from surgery to remove tailbone. The vac lasted about three hours before it started leaking, called home health they came out and sealed it. about five minutes later it started leaking again. I called my surgeon and we decided that it wont work for me. It simply wont seal up because it is in literally a crack, this wound has been treated by a series of clowns and thus far the folks at wound care cut three stitches out along with an artery that required three trips to er to stop the bleeding and after my teling them that a wound vac ain't gonna stay sealed unless there is some kind of flexibility to the drape. needless to say they pushed until I got the darn thing and like I've stated earlier it wouldn't seal. I'm seriously considering firing the whole lot of supposed health care professionals and just pack and bandage the wound myself. I have absolutely no faith in the health care system.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 12/9/2012 3:52 PM (GMT -6)   
Hoghead, so sorry -- sounds very frustrating. It would be best if you could get better health care professionals, rather than having do do things yourself. Do you have a WOC (wound ostomy continence nurse)? Mine did eventually figure out how to do the dressing, and then took photos and wrote notes for the visiting nurse.

In my case, the wound vac did nothing, as I had a problem that had to be fixed surgically ... but they do help a lot of people.

Hope you can work something out. Don't forget to keep eating protein -- critical in wound healing.

Welcome.
50 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound Sept 2011. All healed up now. Healthier than I ever expected to be again...
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