I'm sorry that you are suffering. God bless that woman for finding a way to make the treatment plan tolerable. Is there any way you could use one of the battery-operated, portable IV pumps?

I'm so sorry you are having so much difficultly with Tricare etc. Really surprised to hear you are having a PICC line. My oncologist and chemotherapy nurses very much discourage PICC lines as they say it is a direct entry point into your body for all sorts of evils. Since you are looking at antibiotic infusions for the rest of your life, are there other complications preventing the insertion of a PowerPort or similar central line device? They are much safer from the stand point of germ entry, but do require some minimal care when not being used regularly (at least once every 4 weeks). My central line has made a huge improvement in my quality of life as it allows all my various caregivers access with out "hunting" for a vein that is still accessible. I'm happy to answer any other questions you may have.

Anglophilia, Bless your heart you go thru a LOT. You obviously are a woman of great inner strength. Than to have to travel back and forth throughout the day and night for your infusions not to mention the time it takes to do the infusion. May God grant you even more strength in the comming weeks.

A few years ago my son Michael went to the local ER for pain in his lung area, he has no known pulmonary issues. They rushed him in for an emergency Thoracentesis, they removed more than a liter of fluid. Several days later he was released after we were told this probably won't happen again and they found no cause. He was 40 yo but I brought him home to watch him awhile. 6 days later after a night that he ccouldn't sleep he finially fell asleep on the recliner in the early morning so I covered him and let him be. Early after noon I could see his eyes open following me...I KNEW something was wrong, I ask him Michael what's wrong, he whispered mom I'm going to die taking deep breaths between each word. I called an ambulance. He was taken to the local ER where again they did a Thoracentesis and again more than a liter of fluid. He was transported to Presby hospital in Pittsburgh where he was rushed again for emergency procedure. This time a chest tube. For days we watched it pump fluids from his lung. Test after test and no known cause. They also found 7 blood clots in his lungs so he was started on blood thinners. The doctor told us at one point 24 hours and if the fluid is still building up we have to open his chest. Suddenly it stopped. 3&1/2 weeks later he was released to come home. He is 6foot 7 200 pounds normally, he lost 57 pounds that month. They found no known cause for the fluid and no cause for the clots. He was sent home with a Picc line to start 30 days of antibotic infusion. I did all the infusions but a nurse had to come to care for the line. I think each infusion took roughly an hour every 8 hours....so I'm thinking Anglophillia..all the travel time back and forth another hour at least for infusion + beginning and end flush....geesh should we all pack sleeping bags and camp out with you in the hospital parking lot.

I wish you well. I admire the strength you have shown all those years that you have dealt with this condition. I hope that some schedule can be worked out so that you can get what you need and still be able to maintain time for you and your family.

I am infuriated for you! Because of some stupid insurance company wanting to cut pennies worth of costs, this has happened to you!! And now the cost to you in inconvenience, discomfort, and possibly much worse (pseudomonas is no walk in the park) is so very high. Unbelievably short sited. I do agree with Idstarr about the port, though. I know you can keep those in for months and months and not worry as much about the introduction of other yuckies into your bloodstream.

I stated on your compliance post that I was healthy and took no meds. I guess that's true right now, and I guess I'm maybe not as compliant as I said and this post reminded me of that. I do have asthma. I have been taking a corticosteroid inhaler for over 20 years, flovent. I started out with 2 puffs twice a day, but over the years I have weaned myself to 1 puff a day. I can do what I want, even run, without getting wheezy. My health insurance covers preventative meds, so for the last year this drug was free for me. In December I started getting notices that the price would rise. So in January when I went to refill it, they wanted 350.00!! I called Medica, and they told me they had "reclassified" the drug now calling it a maintenance drug and not preventative. And this is why people hate insurance companies. Semantics. They gave me a list of other drugs I could use, which would entail a doctors visit. So far, I just went off the drug and am doing fine. Hope this doesn't come back to bite me in the butt with an unexpected asthma attack. Your post reminded me I better make that doctor's appt.

I just can't imagine what you are going through, Anglophilia, but I too am infuriated for you over your insurance company's actions.

Good lord! There must be a better way to deal with getting these infusions. How much 'savings' can there be for the insurance company if you're out-patient in a hospital twice a day? Would they like to pay for your care in a skilled nursing facility?

This is all ridiculous. Americans have to struggle to pay for health insurance...then the insurance is useless? You are an intelligent woman, but many people are not capable of fighting back. Talk about 'death panels'!

I'm so sorry for your health situation -- and the need to 'do battle' with insurance. Will you have to miss this lovely trip? (No trip insurance? Would the airline refund your fare with a letter from your MD?)

BTW, you are trying your best to be compliant. It's your insurance company that's keeping your from doing what the doctor ordered.

Sleeperblues, my 8 year old was on Flovent after trying others that never made any positive impact with his asthma, the Flovent did help. It cut back needing the nebulizer every 2to 4 hours round the clock to 3 times in 24 hours...that is huge. Than about a year ago insurance sent me a letter that the Flovent will no longer be covered. Pulmonary tried but insurance wouldn't budge even though the Flovent decreased hospital admissions..crazy. last month pulmonary called me to say the insurance was once again going to cover Flovent so he's been back on it 3 weeks now. Again just in the past 5 days his rescue meds have decreased.

Anglophilla is a prime example of how messed up things have become. Her life is in jeopardy. I go thru crap with the insurance co all the time with my daughter.

Insurance: No Mrs Xxxx we will not reconsider and pay for another MRI. since there's no cure for your daughter regardless of the MRI findings.

Me: You will see me on the news. Click

And they have.

Didn't make a bit of difference.

Now I'm fighting to *go out of network* so Amiee can see the only Doctors that understand this very rare condition at Boston Childrens Hospital..I'm getting a big FAT NO. But they have no problem paying 17, 000 $$$ for a custom built wheelchair as she's out growing her 15, 000 chair..yes she needs it but we would settle for a basic one hundred dollar chair in exchange for them p aying the doctors in Boston....

Insurance: No Mrs xxx we do not play games like this.

Me: you will see me on the news with my discrimination attorney..click.

mamapink, you put my problems i perspective. They are NOTHING compared with the problems in a child. Why don't you try calling the Patient Ombudsman at Children's in Boston. They may have some suggestions for you - they're pretty powerful.

Thank you all for listening to my "rant" last night. It had been a horrid day and I was VERY low. I don't usually indulge in "pity parties" but did last night!

Got my PICC line put in today - great doctor did it - put one in before. We have much in common - he grew up in St Louis and both his sons have gone to college there. SO nice! He agreed with me about seeing doctors in academic medicine. He said that as a radiologist, if he were in academic medicine, he would read 25% of the radiographs he now reads on a daily basis. We all know that that serves patients far better.

Nurses doing the IV where their usual slow, clueless selves who are just never in a rush to do anything. Will someone tell me why health care workers think they sound "friendlier" if they speak in a high, irritating "chirpy" voice? AGGGHHHH!!! Like fingernails on a blackboard for me. Twice weekly for 14 days will drive me to drink. Hey - that's an idea!

I just hope the IV works and there are no side effects.

I know that I've always been a strong, independent woman - it's just who I am. But occasionally (like now), I'd like to be not so strong and have my husband here to help and support me. I have managed as a widow quite well for nearly 12 years, but it's times like this that I especially miss him - he loved taking care of me and it was nice to not always have to be so independent. He was a lovely man and I miss him SO much.

This too shall pass.... Again, thanks, and mamapink, you and your child will be in my prayers.

Nurses doing the IV where their usual slow, clueless selves who are just never in a rush to do anything.

I hope you are describing the actual staff and not making a generalization. But sometimes taking the time to do something carefully and correctly is a positive attribute.

I hope for the best, this seems like so much for you to have to go through. My prayers are with you.

Not nurses in general, nurses at this hospital in a few depts.. This is the south and no one is ever in much of a rush about anything except at our one Level 1 Trauma Center. In this dept, there's a lot of just standing around visiting. I've been here before.