[LibertyRocks]

UPDATE 2/18 AFTERNOON -- DOCTOR CALLED, INSURANCE WON'T APPROVE LIQUID MEDS - MAY NEED TO BE READMITTED FOR IV MEDS

Again, I wrote this update over at FB first, so I will copy and paste so I don't have to write this out again... Thank you so much to all my FRiends here at FR! I'm lucky to have such a wonderful "family" here - especially in times of need! Much love to all of you! ~ LR

UPDATE 3:00 PM - POSSIBLE IV MEDS NEEDED?

Amanda's I.D. doctor called me personally a little while ago...

Our Prescription Insurance will NOT approve Amanda's liquid medication - the doctor said it would approve the generic, but I guess the generic isn't quite the same as the brand-name suspension liquid, either. So, she will be staying on the pills (which she is happy about because the liquid tastes really bad).

Her doctor and I however aren't too happy about this. It's really hard to tell if the pills are working frankly - the liquid can be absorbed readily by the body, but she may not be getting enough med through her pills. She says she feels pretty good, and the edema in the lower part of her leg (her ankle) has gone away, but she has been really good at keeping it really elevated all the time, too -- so, we don't know if it's the meds working, or if it's just because it's elevated... Of course, the swelling in her ankle and lower calf going down also makes the lump that much more prominent, so it's hard to know if it's gotten bigger still, or if it's the same and just looks/feels better since the tissue around it isn't retaining water anymore!

She is still doing well on her pain meds as long as her leg is elevated. If not, she gets achy pain, with occasional shooting pain all down her leg (the mass is most likely pressing against the nerve that goes down her leg).

Plus, now we also have to keep a close eye on her liver functioning.

What all this means is that her doctor is on the fence right now as to whether to re-admit her to the hospital for the IV medication - he's kind of regretting letting her go home before they were sure they had a handle on the infection, but then she's been doing pretty well at home, so he thinks that for her mental well-being it's a good thing... If ANYTHING changes (more pain, another fever, feeling more tired, more bruising, etc...), or the mass doesn't go down within the next few days though she will be re-admitted. Same with the blood tests tomorrow morning -- if her liver numbers are higher, he will have her re-admitted. It sounded like he was on the verge of just going ahead and doing that even today, so when my husband gets home I'm going to have him look at her leg too, and get his opinion as to whether it's gotten bigger or not...

The most frustrating thing is the insurance problems -- it's rather silly in some ways. The liquid meds she should be on are $800.00/mo. and the insurance won't approve it. However, the "back-up" medication is the IV meds which are $3000.00/mo.! If she needs the IV meds it will be at LEAST a few days-a week in the hospital, and then they will need to teach me how to administer it at home, if possible. The insurance will cover the hospitalization, and the IV meds (THOUSANDS & THOUSANDS of dollars...), but not the suspension! Kind of crazy if you ask me! I just wish we were well-off enough to pay for her meds out of pocket - it's more than even our rent payment though, and there's no way we can pay that for 6-9 months! I'm praying really hard right now that the pills are working and that her liver was just "acting up" the other day. [The doctor informed me they went back and re-tested the blood from when she was first in the hospital and her liver enzymes were normal then... He also said that if the pills ARE working the higher numbers could indicate the fungus being killed off and the liver working to get rid of it, but it's a little early to be seeing that happen, especially since she's on the pill form...]

Please pray she'll be able to stay home, but that if she really should be in the hospital God will give a little nudge to her doctor, or that something minor will happen that gives us a "sign" of exactly how things are going in regards to the meds working!

The doctor also mentioned that if the meds didn't work right away we are starting to get really close to her needing surgery to remove the mass in her leg as well, which they were already considering when she was in the hospital. If it doesn't start going down on its own VERY soon, they will need to go in and take out the mass.

Sorry for such a long update that only contains a smidgen more info. than the last... The worries never end it seems. If it's not one thing it's another lately! My cold seems much better than just this morning so I'm thanking God for small miracles, now I just need my nerves to calm down! I'm not going as crazy as I was before we knew the diagnosis of course so that's good, but I can't exactly relax as all is not better yet... It's a strange place to be - not wanting to worry, but not wanting to become complacent at all! [Plus, I'm guess according to her sisters, I'm bugging Amanda too much asking too often how she's feeling! LOL]

[LibertyRocks]

Sorry to ping you all twice in one day!

NEW UPDATE - 2/18 - 3:00 pm
Amanda’s doctor called and we spoke for a while this afternoon. There is a new update with the details at Post #237 (the one from earlier today is at #220 in case anyone missed that).

We now got word back re: the insurance for her meds (denied), and discussed some of the doctor’s worries at this point (re: readmission for IV meds, and possible surgery).

Thank you so much, everyone - and like I mentioned earlier, if you are getting double-pinged, let me know so I can take off the second listing of your name. Or, if you’d like off this temp. list, please let me know...

[trisham]

Amanda’s doctor sounds like a very caring and concerned man. I’m sorry that things aren’t going more smoothly, but the important thing is that her doctor is involved and on top of the situation.

Thanks for the update. Hang in there, FRiend.

Continuing prayers.

[reaganaut]

still praying here. HUGS.

[roamer_1]

Dunno if this is possible for y'all LR, but my boy has had long term kidney problems requiring IV anti-biotics - The docs let him come home with the pic line in place, and we got his antibiotics in these little ball-shaped pre-measured doses, which were easy to administer...

With the exception of office calls (at the hospital) weekly to maintain the pic line, It was a far less invasive method than leaving him in the hospital for weeks... And our insurance company at the time accepted it rather than the higher cost of hospitalization - while still being technically "hospitalized"...

Perhaps something like that could be worked out for you...

[GailA]

This is typical of ins companies. I'm fighting with Tricare for Life, to cover my Synthroid, and it's less than $22.00 a month. The generics cause mouth ulcers and your hair to fall out! They are not absorbed as well, don't come in as many dosage strengths, and have different fillers from lab to lab. They require more frequenting testing to be sure they are working. And the generics are NOT A rated, which the name brand is.

Endocrinologist WON'T prescribe the generics for this reason. Cost more in the long run to use the generics. All to 'save' a measly few cents per tablet. Generic is $14 per month.

[boatbums]

I am praying for you all that God does exceedingly, abundantly, amazingly, ABOVE all that you ask or think about this. Also, resting in the Lord and having a “peace that passes all understanding” is quite different from becoming complacent. You’re a Mom...it’s not in your genetics! :o)

[azishot]

Continuing prayers for Amanda.

[SuziQ]

Thanks for the update. Amanda’s on our Parish Prayer List this week for prayers for her full recovery!

[amom]

Thank you so much for the lengthy updates...I like having lots of information. It’s great to see Amanda’s doctors are keeping on top of this like they are. Silly thing about the medicine and the insurance comapny...one has to wonder about how those decisions are made but leave it to them to make it complex. Prayers up for Amanda’s bump to go down by itself and the liver to settle down and keep on doing what it’s suppose to do. And prayers for you to keep up your strength and stamina...I completely understand about not being able to completely rest. Eventually things will calm down I can assure you. HUGS to all of you.