Home Unit?

[twinieten]

Cross your fingers, pray, send good vibes, whatever you do, send them our way so we get our home unit fast and without hassles!

After a week of school, I visited the dermatologist and told him "we need a home unit". He said that they usually don't prescribe them until the p has cleared. I pointed out that his feet have cleared, so why not his hand? I pointed out that if I have to wait until it's cleared and we are on maintenence, then what's the point? And we NEED a home unit!! I don't think he likes me anymore, ever since the towel and leaky sippy cup incident.

Our day. Monday and Wednesday, pack bag with CD player, flip flops, psoralin, sippy cups, snacks and juice boxes, crayons, coloring books and paper, and Leap Pad books. Actually, the "activity" bag lives in my car now. I still have to pack everything else. Get 2 year old and 4 year old in the car, dressed and clean. There's a challenge! Pick Gabe up from school. Pull over to the side of the road. Have Gabe remove socks and shoes, apply psoralin, put on flip flops. 30-40 minute drive to dermatologist. By now the 2 and 4 year olds have fallen asleep so we all go in to the office tired and grumpy. PUVA treatment. 40-45 minute drive home. Homework, dinner, baths, clean up, play and relax time.... All before 8PM. I tell ya', it's a real PITA!!

Plus the cost, $45 per week, not including gas.... Fridays we go in the morning which involves the same packing and dragging of children. Two year old is usually placed from bed in to the car, half asleep. Arrive late to school no matter what we do to get there on time..... We NEED a home unit.

So I submitted the request today. I asked for a UVA and NBUVB combonation unit and the dermatologist (thankfully) did not specify that I could only get a UVA unit. Now I just hope I don't have to go through the insurence declining the order and have to go through that process. The sooner we get the thing at home, the happier we will all be!

Wheels are in motion!

Drea

[khela718]

Yea... i c ur situation and yea u do need a home phototherapy unit. I built mine and the doctor prescribed the light bulbs .. I saved about $1,600. I simply got a 2ft by 4 ft plywood, a timer, light fixtures, and foil paper. Then got my 4 UVB bulbs in the mail..derm recommended me to built.. Ive looked over the prices on the net and compared to them I payed approx $400 for my home phototherapy. S0o try considering that =) tc...

[twinieten]

Yea... i c ur situation and yea u do need a home phototherapy unit. I built mine and the doctor prescribed the light bulbs .. I saved about $1,600. I simply got a 2ft by 4 ft plywood, a timer, light fixtures, and foil paper. Then got my 4 UVB bulbs in the mail..derm recommended me to built.. Ive looked over the prices on the net and compared to them I payed approx $400 for my home phototherapy. S0o try considering that =) tc...

Hopefully I won't have to consider buying my own...I"m not sure my doc would approve anyways. I'd have to find one who would. If I do, you'll be hearing from me!

Drea

[Geffy]

PITA is an understatement! They had better give it to you. You need it. Granted, I don't really understand why it is such a big deal that they won't let people have them except for the cost. I don't get that either. Maintenance? Huh? I hope you don't have to go to an 8 hour job too. You time is precious and so is your childrens education.

I'm sending you major "get that lamp approved" vibes!!

[SuzanneT]

Drea, doesn't have have PPPP just on hands and feet? What about a small unit that can be used just on those areas? I just bought the Derma Pal unit from Daavlin - $468. The nice thing about those units is that you can direct the treatment to just a small area, like the heel or palm. See my thread on Derma Pal NB UVB progress for a picture of the unit. And if you bought two pairs of the glasses ($9), you and Gabe could do the treatments together
Sue

[twinieten]

Drea, doesn't have have PPPP just on hands and feet? What about a small unit that can be used just on those areas? I just bought the Derma Pal unit from Daavlin - $468. The nice thing about those units is that you can direct the treatment to just a small area, like the heel or palm. See my thread on Derma Pal NB UVB progress for a picture of the unit. And if you bought two pairs of the glasses ($9), you and Gabe could do the treatments together
Sue

If you don't mind posting a link for your progress post, I'd appreciate it. I did a search but I didn't find it.

Gabe was diagnosed with guttate p, but I don't think it's guttate. I think it's plaque. I'm pretty sure it's not pppp, thankfully. If I had to choose a p, I would not choose that one! It sounds miserable! He just has it bad on his hand and feet, and it doesnt' heal.

What we are getting is the hand/foot unit. I jsut got off the phone with the company that will be delivering it to us. They're ordering it today, and we should have it in about 10 days. Happy Dance!! I'll be really annoying and call this afternoon to make sure the order has been placed.

I was thinking a hand held would be a good thing to have as he has stubborn plaques on his legs that just aren't responding to creams, and he still gets the occasional scalp p. But since Gabe is only 7 and it effects both feet and one hand, a hand/foot unit is the better way to go for us. We can set him up while he's watching TV, and do both feet at one time, and then the one hand next. The hand held might be too long with 3 bad areas to cover, plus it's hand held. I just don't think it would be very practical. If i had to use it, it would probably be just fine. But since he's so young, not so much.

At least it's a good option if we ever need to buy anything outright cash for the other p areas. Thanks for the suggestion! I might just bring that up to the derm the next time we go in.

Drea

[twinieten]

PITA is an understatement! They had better give it to you. You need it. Granted, I don't really understand why it is such a big deal that they won't let people have them except for the cost. I don't get that either. Maintenance? Huh? I hope you don't have to go to an 8 hour job too. You time is precious and so is your childrens education.

I'm sending you major "get that lamp approved" vibes!!

I don't know what I'd do if I had to juggle work too. The only day they have early morning hours is on Friday and they don't have evening hours. I work at night and on weekends, so I don't have to juggle my job with the treatments, and DH doesn't either. Unfortunatly, it can be very draining if I've had a particularly long shift the night before.

Order will be placed TODAY!!

[Geffy]

Glad you aren't a 9 to 5er, but still!

YAY!!! Now it better come fast!

[twinieten]

Forgive me while I gripe.

It could not have gone any smoother. We're talking perfection. It's 10PM at night and I get a knock on my door. Six days after I order the home unit, the guy is standing at my door! I submit the order on Friday. My Monday it's sent out to fill the order. Seven to ten business days, they tell me. Not an issue with insurence, no wait, no hassle, and on the 6th day, there's the guy standing at my door! Can it get any better? I can't tell you how excited I was!! It was like Santa Claus just visited and I could hardly wait until morning for Gabe to see it!

We get the thing inside and its' big and heavy. We unpack it. We look at it, we admire it. Then DH notices, it's a NBUVB unit.Disappointment and frustration takes over. If you remember, I had ordered a combonation unit. We are using PUVA now, so I need PUVA. I wanted the combo becuase I don't want to do PUVA long term, the doctor didn't specify, so I'm thinking, "cool"!

So before the guy leaves, he's in the driveway in his truck, we're packing the mo-fo back up.

I called and thankfully they have after hours business hours. I'm waiting for them to call back. So another 7-10 days? Crap! IF there are no issues. The big IF. Another two weeks? And Monday is a holiday? I just want to scream!!

I guess someone called the guy who delivered the unit. They said that they sent the NBUVB unit because the prescription didn't specify and they didn't know what to send. Didn't know what to send? And they said that the UVA needs to be special ordered (duh?) Since they had the NB on hand, that's what they sent. WTF??

So when I called and asked for the NB/UVA combo, and when I called again to verify that it was the NB/UVA combo that was ordered, and when they said "yes" that is what they ordered, and it was confirmed more than once, so when that all happened, they didn't understand? Is that it? Could I have been any clearer? I sent photos off the internet! I sent a letter saying I wanted NBUVB and PUVA combonation! Yet they didn't know what to send? They have my phone number, and they couldn't call me becuase they were confused?

What a let down!

<sigh> Well, I guess we've waited this long, so what's another 7-10 business days?

Drea

[SuzanneT]

Drea,
Was this Daavlin? They were VERY specific with me, and even made my Dr. re-write the prescription as it was not clear whether it was NB or BB! I had to fill out two forms besides the Rx stating which one it was!
Sue

[twinieten]

Drea,
Was this Daavlin? They were VERY specific with me, and even made my Dr. re-write the prescription as it was not clear whether it was NB or BB! I had to fill out two forms besides the Rx stating which one it was!
Sue

No. I had to go through Apria since they are contracted with my insurence. If they don't have what is needed, they go through other companies. Supposedly, they went through National Biological.

Somewhere along the way, something just got messed up. But it sounds to me like it wasn't a matter of not knowing what to send so they sent "anything". It was just a little mix up, but it's hard to tell at what step the UVA-part got dropped from the order. Unfortunatly it adds up to more time waiting, but they are working to get the whole thing fixed quickly so we don't have to wait any longer than necessary. National Biological has the unit we need, so they're going to rush it to get it to us right away.

It's funny how when things like this happen, and the more you want something to get to your home faster, it falls on a holiday weekend!! <G>

I'm always greatful when companies are willing to get things sorted out without making people jump through hoops. Considering the things other people have had to do to get their equipment whether it's insurence, or the manufacturers or whoever, I've had it easy.

Apria has been fabulous about everything, and everyone I have worked with has been very nice! They wasted no time getting the original order submitted last week, and they are wasting no time correcting the error and getting the new unit to ordered and sent to me. Even Cigna has been wonderful, approving the home unit without hassle.

Drea

[Geffy]

What a darned bummer! I'll hope along with you that it comes quickly and correct this time.

[twinieten]

Worst case scenario, we'll have it by TUESDAY!! Yipee!! Happy Dance!!

That's worst case, and considering the 3 day weekend and how people try to escape work early on Friday before a 3 day weekend, I expect this "worst case". I'm not complaining! They went beyond my expectations, solved the problem and fixed it FAST!!

Drea

[twinieten]

Our home phototherepy unit arrived this evening! Woo Hoo! Not without yet another glitch, but at least this one is minimal. They put in BBUVB bulbs instead of NBUVB bulbs, but at least we can use the unit while we wait for whatever to happen. A more detailed post is at the living with P and PA forum, so if anyone has any experience with a home unit, please check it out. Maybe you have some answeres to my questions.

http://www.psoriasis.org/forum/showthread.php?t=21362

Drea