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Remodulin

Here is an overview of the site:

Coping

An often overlooked yet important concern is the emotional well-being of chronically ill patients, caregivers and friends. PHCentral addresses this issue by providing our visitors with support resources on the site, on the Internet and in their own community. We also try to connect people online through email lists, diaries, message boards and chat sessions.

Our Support System Includes:

Support Group Listings
List or find a PH support group near you.
Patient / Caregiver Diaries
Journals written by PH patients and caregivers who wish to share their lives with others
PH Friends Photo Album
This page is filled with old and new PH friends. We’ll be happy to add your photo to our album.
Tips & Tricks
Information and tips for making your life a little easier; a place to share practical and useful tips with others.
Tidbits
Things you should know but probably don't.
Features
Articles on many subjects written expressly for PHCentral.
Travel
Travel tips and information for patients on supplemental oxygen.
Memorials
Photos and stories of friends we’ve lost.
Creative Corner
A showcase of arts and crafts by PH friends.
Pet Corner
Patients share their stories and photos of the furry, feathered and scaly pets that enrich their lives and give them comfort.
Books
Publications we think you might want to check out organized in three groupings: coping, medical and financial. If you would like to add a good read to our list, please write to us.
Links
Here you will find links to other websites and organizations we think you might find useful. If you find a site you think would be a good addition to PHCentral, drop us a line.

Medical

PHCentral's medical section is provided to explain the basics about pulmonary hypertension, the diagnostic process and available treatments. . Although we do try to keep current, the information you find here may be incomplete. We strongly urge site visitors seeking the latest medical advice and treatment options for PH and any of the diseases associated with PH to gather information from a variety of reputable sources.

Financial

Insurance Matters (formerly under Action Central)
We have compiled a list of useful resources you will want to investigate if you have questions about private or government medical insurance coverage. We cover health insurance basics as well as U.S. government sponsored health insurance plans. You will also find a number of articles written by our resident guru Alan Harder on the social security / disability system and several others written expressly for PHCentral.
Assistance Programs (formerly called Financial Topics under Action Central)
Discussions and help navigating the disability system in the U.S. Other resources to help those in need of financial assistance.
Books
Links

News – Current and Archives

Our newsroom is open Monday through Friday, rain or shine to bring you the latest in PH news and other health matters of interest to you. You will also find relevant news items at the bottom of medical, action and financial pages.

Connect

One of the hardest things about living with chronic illness in general and Pulmonary Hypertension in particular, is the isolation. You will find many ways to meet and share with others here including:

Message Board
Sign up for our private ListServe email forum moderated by a team of dedicated PHC volunteers to become part of a vibrant, online community..
Chat
On any day or evening of the week, you just might find someone in chat looking for a kindred spirit. The door is always open. A chat schedule is available and will be announced on PHFriends and the public message board so you’ll want to check there too.
Contact Us
We are a small, grass-roots organization and we do respond to emails promptly. Tell us what you think – what works and what doesn’t. Please share with us what you like about the site and ways to improve it. This site is for you.

Action

There are things you can do to help yourself, your community and the furthering of PH research. This section contains:

Intro to section
Learn why you benefit by becoming involved.
Legislation You Should Know About
From time to time, we bring to your attention a bill that is before Congress or the Senate and ask you to write to your Representatives or Senators to take a position.
Social Security & Disability
If you’re trying to decide how to proceed with social security and/or disability, you’ll find a wealth of information here.
Patient Advocacy
Learn why it’s important to choose a PH specialist for your care and how to get the most out of your doctor visits.
Contact the Action Desk
You’ll find FAQs here on social security / disability issues and email links to our experts for personal attention.
Volunteer
Contribute

Links

You will find links to many other online resources on the following topics:

Keeping for More Than 14 Days

Remodulin can now be kept for more than 14 days. When you get down to the bottom of the bottle there still may be a bit left in the bottle. How can you get it out when you have to start with a new bottle. Pull back the syringe and squirt your air into your older bottle. Draw out all of the medicine that you can, then draw the syringe back more, then squirt that air into the new bottle, not the remodulin from the old bottle - just the air. Then draw out the med to make it up to the number you use, like our syringes go to three. I could not figure out how to do this until someone explained.

Submitted by -- Celeste

Pump

Hiding the pump isn't hard at all. I find wearing a shirt that covers the waistband of the pants or skirt does the trick in covering the little annoyance. And in the summer, a nice sundress when on the beach or lounging around the house with the AC on.

Submitted by -- Aries

Pump Pouch

I ordered a soft waist pouch for my Remodulin pump to wear under a nightgown or under dresses. There are a variety of pump cases and accessories available, including a waterproof case for swimming. They can be ordered from the MiniMed site.

Submitted by -- Lynn Schaeffer

Site Infection

If by chance you do get a site infection, there are many creams that can help, one is a prescription called Bactroban, when administered correctly the effects of the infection go away in days. If you don't have that cream, any pain relieving cream such as Unguentine or Neosporin will do. Just don't ever get it into the site hole itself, that hurts!

Submitted by -- Aries

Site Pain

Here is a technique that was given to me by another Remodulin user. For her it has stopped her site pain all together. I do do this and some sites there is no pain. Other sites I do still have some pain but not nearly as bad as I use to. Maybe it can help someone else too.

After priming the pump and putting the needle in the soft serter you need to clean it again with an alcohol swab. Clean the needle and the soft serter and the prongs. You want to make sure that you dont have any of the Remodulin dripping from the needle or on the soft serter. Lay your pump lower than the injection site. This is so while you are doing the shot that no Remodulin drips from the tip of the needle. I lay mine on the floor. I only do my stomach area. The Remodulin is what is causing the site pain. By not getting any Remodulin on the skin while doing a shot can help to get rid of the site pain. Some of my sites it gets rid of all of the pain then there are other sites that I still have some pain but not as bad.

Submitted by -- Lora

Having site pain? Not to worry, a nice warm (not hot) bath will do the trick most times, it will also relax you. If baths aren't your thing, you could always use a heating pad or something to that degree to ease the ache.

Submitted by -- Aries

For site pain, I use Solarcaine Aloe Burn Gel (green stuff, available at most drug stores for about $3.50) for rubbing on the skin of the old site. It contains lidocaine, a good topical anesthetic, and the aloe helps with itching.

Submitted by -- Lynn Schaeffer

Site Protection

Keep the activities that involve stretching the arm or the stomach (depending where it is on you) to a minimum. The site can and will fall out (happened to me on several occasions).

Submitted by -- Aries

Sites

Changing the site time is important. Never leave a single site in more than a week. You risk infection and bad pain when doing that. Though it's annoying, it's a necessity =).

Submitted by -- Aries

Alternate site areas are always helpful especially when the stomach is tender and you can't find a place that isn't hurting. Using the arm as an alternate is always good, anywhere between the elbow and shoulder, a few centimeters to the right of the bone should work just fine.

Submitted by -- Aries

When choosing a site for the Remodulin (or Ut-15) always press your finger over it before insertion to make sure that it does not throb or present some kind of a heartbeat, that usually means there is a vein or capillary there, and you don't want to hit those.

Submitted by -- Aries

Swimming

When swimming with the pump, always make sure it's in the waterproof case, and that the tape over the site is secure. Again, it can easily come undone and fall out if it's not on correctly, and as for the pump, well, we all don't have 6,000 dollars to get a new one with.

Submitted by -- Aries

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