Don’t forget the pharmacy can help troubleshoot pump problems. I had to call the nurse at accredo a lot in the beginning. They were having cartridges issues, but they got them fixed. The pharmacy rents you the pump and knows what to do. Also, if you do what they say and it doesn’t work, they can tell you your next step. Most times it’s go to the ER. The first time they sent me to the ER, the staff in the ER had to google the medication. My husband and I just chuckled. They did have experience with the pump and Hickman line, just not the medication. I guess the majority of people with Hickman lines and pumps use them for cancer chemotherapy.

Here are links:

Lauren’s hope:

https://www.laurenshope.com/

Stashbandz
https://www.stashbandz.com/

Poppy pocket:
https://poppypocket.net

Pocketed chlothing can be found on Amazon. Most pockets are for phones, so be careful to make sure they are big enough for the pump. Usually they have big enough pockets in the larger sizes. So, I wear them as undershirts. I really like the shirts below.

CADMUS Women 3 Pack Dry Fit Workout Tank Top for Yoga Running Shirts

I also use pocketed shorts under dresses or on there own in the summer. The pocketed underwear are okay: however the pump sometimes sits in an awkward position, so I’m not a fan. Also with the underwear if the pocket is too big the pump turns sideways: very annoying.

I will say the advantage to the shirt and stashbandz is in the bathroom. You don’t have to pull them off to use the restroom. So, you don’t have to leave as much slack in the line. That’s why now I almost always use the stashbandz or the shirt.

Some people love a fanny pack or crossbody bag under or over chlothes. I did not. I know a lot of people use the poppy pocket, but I have never tried it. Again. I like the stashbandz and yoga shirts.

I suggest you try a couple ways and see what is most comfortable and convenient for you.

Happy life hacking as I call it.

If your interested I also came up with a way to create IV change kits for all the supplies to change the cartridge and the aren’t plastic bags. So, they don’t look so medical. They hang anywhere and are great for travel. I can link a video, if you like.

Lauren’s Hope | Medical ID Bracelets and Alert Jewelry

https://www.laurenshope.com/

StashBandz Fanny Packs | StashBandz®

https://www.stashbandz.com/

PoppyPocket: The Safe, Discreet Way to Transport Infusion Pumps

https://poppypocket.net

Great suggeations about the bracelet and Id card. It was recommended to me by my PAH doc (who is an hour away) that I find a hospital that has a Lung condition specialists with docs/nurses trained in PAH issues. Ask your diagnosing doctor to figure out your closest hospital. It helps if the staff is familiar with the pump. You’d thing every hospital would have someone but surprisingly they dont. I’m going to Buffalo next week amd they have like 10 hospitals (there’s a medical school nearby) so I called my doc and they did the legwork to let me know which hospital I should go to if I have pump probs while i’m up there. knock on wood i’ve never had to go to the hospital yet with a pump issue but u know that goes. it will happen at the MOST incovenient time or place. ugh

Yes links to those sites would be great. I did buy a cross body bag but it didn’t fit great. I just lengthens the straps and now I either wear it around my neck or like a purse. I’m just still atruggling to get used to it. Im guessing soon it’ll become second nature. That’s kinda funny about the dogs. I mean not really but it did make me chuckle. i’m visiting my mom soon amd she has 2 little dogs. Might try the under the shirt method.

It wouldn’t let me put this all in one message.
Part2:

My PH center that treats my PAH is about 3 hours away. I only go to the local ER for emergencies. I have been there once when the line was leaking. (It was early on on my journey and I was inexperienced and didn’t understand what was an adapter and what was the Hickman line itself. So, I had two adapters on and that doesn’t work) I’ve also had to go twice when the old adapter wouldn’t come off. I tried everything the nurse at the speciality pharmacy said to do. The ER used a speciality clamp, which they said had to be thrown away. They threw it out into my purse. So now I can get it off with the tool. However, I haven’t needed to because I changed adapters and the new kind don’t stick so hard.

To feel more comfortable with my PH center so far away, I do three things.

1). My primary care doctor and my PH center have fax numbers for each other. My PCP is willing to put in orders for test wanted by the PH center. So, I can get my bloodwork, echos and the like here. The PCP office then faxes the results to the PH center.

2). I wear a emergency health bracelet. I love it. I got it from Lauren’s hope. It’s so pretty. The bracelet has emergency info for any EMTs (my name, pulmonary hypt., IV pump, no nitrates, see wallet card and ICE phone number). The wallet card has all the medications I’m on and the phone number for the on call doctor at my PH center. This way the ER doctor can call them for more information.

3). I have a local cardiologist that I see, yearly. This was because my PCP wanted someone here with some understanding and knowledge to help in case of any emergencies. She is the one who referred me to the PH center, so I just continue to see her.

Stay the course. I know it’s overwhelming, scary and down right unfair to have to deal with this. However, it’s not impossible. It can be done.

I’m starting Winrevair as soon as it’s approved by insurance and that has me nervous again, but I’ve heard such great things.

Part 1:

Sorry I’m long winded.

At the beginning and still even now, I also forget the pump is there. I have tried to walk off without it a couple times. So, your definitely not alone there.🙂 I was nervous too and I asked my doctor about it. My doctor told me with the Hickman line I have, it would require quite a bit of force to pull it out. This is not to say it can’t happen, but it would require a very strong pull. So, if your really nervous, ask your healthcare team. Don’t forget, your specialty pharmacy is also part of that team. Accredo has a nurse you can call 24 hours a day. I’m not sure about CVS.

Don’t be scared to ask them. We were all new to this once. It will get easier and become second nature, it just takes time.

I also don’t like the tubing hanging by my side because my dogs have gotten tangled in the tubing and that’s a big problem. So, now I’ve gotten use to putting the pump on my body under clothes even when just sitting on the couch. The only time the pump won’t move with me and isn’t covered is when I sleep. Then I put in on a nightstand next to my bed. Otherwise it’s in the pocket of my stashband or my yoga shirt. I hated the fanny pack. They also make pocketed underwear that the pump will fit it. Sometimes, I might use a closely fitted crossbody bag to hold the pump too. These are much better than the fanny pack. Let me know I can send links to these items. Finding a comfortable way to carry the pump makes life so much easier.