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Isa continues to amaze me!

I'm sorry, but this just makes me angry. I have no problem with you asking questions, doing a paper etc. But honestly, a little bit of research before asking for help. What has got my panties in a wad? This, "If someone does answer this, could you tell me how long you have been living with...

Caitlin, in case you didn't' know, "dry run" in transplant (tx) terms, means that the tx was not a go for what ever reason. I think what cftransplant was getting at was the cost of a charter or air ambulance and insurance in the event that you got your call, you get half way there, all the way...

Thank you Caitlin and Aboveallislove.

Hi Caitlin, We set up a private charter jet as a back up for our daughter when she was double listed. Although our insurance was going to cover an air ambulance from her town, we needed to have one set up in the even she was called while we waited for the insurance co. to approve the flight, she...

Tonya, thank you! It's been a rough weekend for me. Even though Anna's anniversary isn't until next week, Easter still marks the anniversary of her death. Rachel is doing pretty well. She has been married for a year and a half almost. Rough year last year with multiple hospitalizations but has...

TonyaH, How are they considering the administration of the Amphotericin B? My oldest daughter was post transplant 7 mo. when she tested + for aspergillus. Which we thought extremely odd because it was in the dead of winter in NE. Anyhow, he team put her on Amph. B, inhaled. It did the job...

You could wear a N95 mask and follow the distance rule.

It's been almost a month since I was last on here, how are things going with the O2 for your son? Were you able to find a place that supplies liquid O2. Trying to think of the company we used.... Apria, I believe is the name of the supplier we used for O2, liquid too. I would think that your...

Those are the most common non portable type for daily home use. The other options, I believe are tanks that require filling but depending on how much O2 he's on, you're going to have numerous tanks, big ones too. You might ask about liquid O2 and if it's a feasible option for his needs. We did...

I'm so sorry for the loss of your son. I know what you are going through and it is so very difficult. My daughter was 24. There are no words to console your broken heart, just know that there are those that know your pain and pray for some peace to your heart. Hugs from one mom to another.

There is someone on here that was transplanted at CC. Have you been evaluated there yet? The director and the team are amazing people! We have absolutely no complaints with CC as a whole, every one is super nice, friendly and so very helpful. The temporary lodging they have is not the most...

There is a difference between SSI and SSDI. My Rachel has never worked so was not eligible for SSDI. She applied for SSI, was told she qualified but then was turned down for any SSI because her A1C husband apparently makes too much money because they (Social Security powers that be) counted...

Hi Autumn, I just wanted to say good luck on your move to San Antonio! Do you presently go to UNMC (well NMC)?

Yes, that's how it's done.

Hmmm, I'm going to have to tell my daughter about that... and ask my husband as well. Thanks. OH! What do you do, just open the capsule and dissolve the powder in the saline solution or does it come in a different form?

Wow, I'd never heard of that. I'd heard of using Tobra mixed in with the sinus rinse. Hmmm, what is it supposed to do? Benefits? My daughter takes Budesonide for her Crohn's, so I was just wondering what the ENT's thought process was in using it for a sinus rinse.

Genentech is the pharmaceutical company that makes Pulmozyme. There is not a generic equivalent of Pulmozyme (Dornase Alfa). You would not get the medication directly from them. Target is a store that has a pharmacy in it. There are mail order pharmacies that you can get it from as well. A mail...

I had that same issue with them once. They tried to convince me that it had just come in when the box was not in the least bit cool. I declined that particular order and requested they reorder it but because this was the last straw with them, for me, I wrote down the lot number. I didn't trust...

My daughters would only do home IV for the times when the convenience was needed, like classes or something special coming up. Otherwise they felt they got a better result when being in hospital. Really good CPT 4xday was one of their big reasons. My oldest did home IV once in her senior yr of...