Wow Andrea ... that is a dream of mine, to have my PICC removed. I have had it for almost 2 years now, in the same location, however, without a single infection since I only used the soft antibiotic coated PICC. I used to have it changed every +/- 3 months. The process to exchanging it is pretty easy. They refer to it as "fishing". They run a thin rod into my old PCC and fish it out, then run a new one into it. The process takes a few minutes and is painless. This is one of my lessons learned = Always request a soft antibiotic coated PICC if you need one. I am hoping that once my blood counts are up again, I will have mine removed (hopefully). What a cool day that will be ... as you said, real real showers, swimming, excercising ... Ah ... that will be the day :) - Sami

Andrea,

The day that they took out my Hickmann was more emotional for me than getting the transplant itself. Every time I come back to Sloan-Kettering, when I check in I am asked if I have a LINE. I love to say NO! Just love it. Always thinking of you, but then again you know that already. Lots of love.

Cliff

I figured since I needed a triple lumen for transplant, why bother keeping the foreign object in? I have great veins, so no big deal getting lines started if needed. The other thing that put me over the edge was the infusion company charging me a $20 copay every day for supplies even though I flushed the line myself and the clinic changed my dressing. I reported them to my insurance company and am reporting it to the insurance commission. I told them to charge me for durable goods only (saline filled syringe), but they worked out a coding claim to actually get reimbursed for me doing their job. Infuriating.
So I am heading downtown to get a quick look draw. Potassium was 3.9 and study group wants 4.0. So, a 45 minute ride in rush hour for a two minute blood draw.

Question, have any of you been restricted from driving?

Andrea

Hi Andrea,
Newbie with the FLT 3 also
Prayers and thoughts are with you
I driving all the time wiht no restrictions my body tells me what I can do there are days when I cannot go behind the wheel.
Planxty x

I flush mine every other day and my wife changes the dressing every 7 days. I have no restrictions on driving. It all depends how I am feeling. After getting blood products, I usually skip driving since I am given Benadryl. :) otherwise, I drive. - - when the time comes for your triple lumen, don't forget to ask for a soft antibiotic coated one. Anxiously awaiting the good news when you start AC220!!!!

Andrea,

A potassium of 3.9 is in the normal range. I don't understand why they are making you get your bloods drawn (inconveniently). Eat a banana, drink orange juice. They cannot keep making you get blood tested for low normal numbers. UGH

Cliff

Every one of my docs agrees with younCliff. My potassium is normal, but the lab in California collecting data needs to see 4.0 sustained for the clinical trial. Ughhh is right, $13.00 Parking fee for 20 minute blood draw, down side to city hospital.
AB

Andrea,
The charge for your work IS infuriating. What a scam. Was good to hear that you have good veins, nothing to be underestimated in this treatment process.

I was restricted from driving inasmuch as they said don't drive until you can conentrate on reading a book for 30 minutes. Didn't become an issue for me since I was so sick anyways. Worked out that the time I felt good enough to read, I was almost ready to drive.

$13 for parking? Crazy! We were always able to get our parking tickets stamped and paid fifty cents. Yeesh. I'm feeling your frustration with that.

Therese

Andrea, I am very happy you qualified for the trial. This medication will definitely be better for you than another induction, because it is targeted to FLT3 which causes problems. I hope that everything will work smoothly for you. Maybe use some salt substitute before your next lab? It has a lot of potassium. Good luck with everything.

Potassium at 4.5, guess what? I do not need supplement anymore.

Now for the interesting part. Study is supposed to begin Monday morning along with Hurricane Sandy complications, power outages, severe flooding, etc. we have just been issued warnings in our township.

I don't have a generator. I am a little nervous. I am usually the one to handle things on the home front and I get creative with cooking etc.

This one has me nervous. During the last big storm, I lost power for three days and at one point leashed the dog and was prepared to run into basement with supplies when the tornado warning was issued.
I feel vulnerable this time.

Thoughts?

Andrea

Andrea,

I am panicking myself. We can't even use the toilets if we have a power outage and around here, all you have to do is look at a power line funny and your power is off.

There was no parking at Sloan Kettering today. The garage was full. So I had to park in a private lot and then waited 2 hours to get my shot of denosumab for my osteoporosis. That took 5 min. By the time I got my car, I owed $43 dollars. I did not tip the garage guy. I already did!

Andrea, remember with regard to your potassium...all vegetables have some and bananas and citrus fruits are full of it.

Good luck with the trial. I hope that you can start and that the weather doesn't pull a fast one on all of us.

Cliff

Andrea,

My sister just graduated from Temple last Spring. Small world. Oh for the hurricane, we are in preparing mode too. Could you get a small battery operated fridge or a small generator so you can plug in something. Then your meds could at least be refrigerated. Also talk to your doctors if you do lose power, maybe you can even go into the hospital, would suck, but they have back up generators. Insurance companies are horrible. Hate them. Have had trouble with them a lot.

Abby

Andrea,

Glad to hear about the trial. I know you will do great.

I never thought about hospitals charging for parking. Our hospitals at home don't charge and when I go to Vanderbilt they have free valet parking. I'll add free parking to my blessings list.

I agree with turning the company into the insurance commissioner. I've never done durable medical coding but I can't imagine a code that allows a charge for a patient to do the work. I have a coding program saved on my computer if you need a details on a specific code.

I will definately be thinking and praying for all of you over the next several days I've never been in a hurricane but in western Kentucky we have a lot of storms. During my treatment we had tornado warnings and we do not have a basement, I was to sick to disagree and somehow I let my husband talk me into wearing his motorcycle helmet and sitting in the bathtub. Had I needed to be rescued I hope someone would remove the helmet before snapping photos. We lost power once for 11 days during an ice storm and nothing is fun about losing power.

Trish

Trish, first of all, you had me hysterical. I can imagine my husband at some point insisting I wear my son's hockey helmet. I suppose we are lucky that our men worry about us this much, though if he tells me to wash my hands or be careful one more time.............

Cliff, my mom has that same issue with toilets. I have three bathrooms and luckily, unless storm drains become an issue, I should be good to go. I have the guys picking up extra water and ready to eat canned food.
I did get word, we may postpone the start of the trial. My opinion is safety first and I expressed that opinion. The University is a ride for me and I don't want anyone in harms way, as it helps no one. $43 for parking, ok, I take back my complaint.

Abby , yes, small world. My daughter is transferring to Temple! So my backup plan if I lose power is to head to my daughter's apt in Manayunk, though that may entail me dancing on tables at a bar since this is the off-site campus for Temple students........

I am keeping my fingers crossed. I have been asking for this generator for two years now. We lose power a lot. I have nothing but trees surrounding my home, lovely, but dangerous. Maybe he will get me one tomorrow after the hockey game........we'll see.

Be safe all. Our Light the Night Walk is tonight. I know my husband will be mentioning every one of your names, as everyone in this group has become a household name. As if you are all long time friends.
Be blessed!
Andrea B.

You all made my day! I cannot get the picure of sitting in the bathtub with a motorcycle helmet out of my head. I needed the laugh today, thank you! Andrea, so happy that you have been accepted for the trial. I know a little hurricane won't stop you, maybe delay things a little. I like what Sami writes "In God's Grip", I imagine God holding you in his hand, keeping you and your family safe.
Take Care,
Suzanne