December 2016 | Issue 38

CelebrateLifeFor Home Parenteral and Tube Feeding Patients

Knowledge is Power

2 | Celebrate Life | December 2016 | Issue 38

December 2016 | Issue 38

Celebrate Life Coram’s Magazine for Home Parenteral and Tube Feeding Patients

Celebrate Life Staff Karen Hamilton, MS, RD, LD, CNSC, Clinical Editor Alison Davis, Senior Editor Darlene Rollins, Graphic Designer

Contributing Writers Judith Maggi, MSN, RNEzra Steiger, MD, FACS, FASPEN, AGAFMark DeLegge, MDKaren Hamilton, MS, RD, LD, CNSCMichael Medwar

Celebrate Life is provided as a free service to parenteral and enteral consumers. Opinions expressed by contributing authors and sources are not necessarily those of the publisher. Information contained in this magazine is for educational purposes only and is not intended as a substitute for medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting a qualified physician. Please consult your physician before starting any course of treatment or supplementation, particularly if you are currently under medical care. Never disregard medical advice or delay in seeking it because of something you have read in this publication.

© 2016 Coram LLC. All rights reserved. No part of this publication may be distributed, reprinted or photocopied without prior written permission of copyright owner. All service marks, trademarks and trade names presented or referred to in this magazine are the property of their respective owners. COR09007-1216

Contents

Advocacy CornerMichael Medwar, Coram Patient Advocate, shares ideas on how you can come to terms with a catheter or feeding tube and still pursue your dreams.

We welcome your comments, stories and suggestions. Please send all correspondence to: Coram CVS SpecialtyTM Infusion Services Celebrate Life Magazine 555 17th Street, Suite 1500 Denver, CO 80202

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Little Ms. Speedy… One Consumer’s Journey with Feeding Tube PlacementRead about one patient’s challenges and experiences adapting to the “new normal” of tube feeding.

7 Keeping Your CVAD SafeLearn about steps you can take to prevent CVAD complications and handle such problems if they arise. Having this “need-to-know” information can help reduce your risk of injury.

11 Enteral Access – Proper Choice and Associated ComplicationsFeeding tubes allow enteral patients to meet their diet and nutritional needs. Learn about different types and how to manage common tube feeding complications.

The Right CVAD for YouVarious types of central venous access devices (CVADs) are explained to help you make an informed decision about which device is right for you.

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Having accurate, complete knowledge is critical in healthcare as medical professionals and caregivers work together with patients to ensure quality of life and safety. Studies have found that patient participation can improve the decision-making process and the care of patients with chronic illness.1

This issue of Celebrate Life focuses on vital aspects of care associated with home infusion therapy and enteral nutrition. The articles are meant to build upon your knowledge and help you manage your care. In the first article by Dr. Ezra Steiger, the various types of central venous access devices (CVADs) are explained. Knowing the difference between a port, an implanted CVAD, or a peripherally inserted central catheter (PICC) line can help you to be a partner with your doctor in making an informed decision about which device is right for you.

In the next article, Dr. Pankaj Vashi outlines steps you can take to prevent CVAD complications and handle such problems if they arise. Knowing how to tell if your device is blocked or what to do if you have an infection are just a few examples of critical information shared. Having this “need-to-know” information can help reduce your risk of injury.

Feeding tubes are also covered in this issue. Feeding tubes are the access devices that allow patients to meet their diet and nutritional needs. Dr. Mark DeLegge, Coram’s Medical Director, and Cynthia Reddick, RD, Coram’s National

Tube Feeding Manager share their knowledge on feeding tube differences. They also discuss how to manage the most common tube feeding complications, such as your tube clogging or leaking.

And finally, even though you have the “knowledge,” it still may not be easy to deal with all the changes happening to you. Having any type of device inserted into your body changes how you live. Karen Hamilton, Coram’s Senior Nutrition Advisor, shares one patient’s experience adapting to the “new normal” of tube feeding.

Michael Medwar is a Coram Patient Advocate who truly understands the struggles of living a new normal life. In this issue’s Advocacy Corner, he shares his ideas on how you can come to terms with a catheter or feeding tube and still pursue your dreams.

In Celebrate Life, our clinical authors offer you knowledge that can make a difference. Knowledge can help protect your health and empower you to live your life to its fullest. We want to be there with you as your partner through your journey.

In gratitude,

Judith Maggi, MSN, RN

A Note from Our Guest Editor

In 1597, Sir Francis Bacon said “Knowledge is Power.” That statement is still true today!

Reference1. Longtin Y, Sax H, Leape L, et al. Patient Participation: current knowledge and applicability to patient safety. Mayo Clin Proc. 2010 Jan; 85(1): 53–62.

doi: 10.4065/mcp.2009.0248.

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The RightCVAD for You By Ezra Steiger MD, FACS, FASPEN, AGAF

Consultant Digestive Disease Institute and Professor of Surgery, Cleveland Clinic Lerner College of Medicine Founder and member of the Nutrition Support Team, Home Parenteral Nutrition Program and Intestinal Rehab Program at Cleveland Clinic

There are three main types of central venous access devices (CVADs). CVADs are used for fluid or medication administration directly into the blood. They are designed to be used in the outpatient setting for long periods of time. It is important for you to know that there are risks in placing the devices, but these risks are usually minimal. Each type of CVAD can also have potential complications. But there are steps you can take to help prevent these. (For more on preventing complications, see Dr. Vashi’s article, Keeping your CVAD Safe, on page 7).

Your doctor will guide you in making the correct choice of CVAD to meet your particular needs.

Central Venous Access Devices

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Types of CVADs

A tunneled cuffed catheter comes with 1, 2 or 3 channels (also called lumens*). The number of lumens will depend on the types of fluids and medications that are needed for your treatment. These catheters have a small Dacron® fabric cuff around part of the device. This cuff lies under the skin just above the exit site on the chest wall. Scar tissue grows into the cuff, and this firmly anchors the catheter in place. The tip of the catheter is placed in the lower part of the major central vein (superior vena cava) just above the heart. Some examples of brand-names for these types of catheters include Hickman®, Broviac®, Leonard® or Groshong®.

Ports are hollowed-out chambers with a rubber-like top that lies on the chest wall under the skin. A tube attached to the port is inserted into a vein at the base of the neck or under the collarbone. The tip of the catheter is placed in the lower part of the major central vein (superior vena cava) just above the heart.

A special right-angle needle, called a Huber needle, is inserted through the skin and the rubber-like covering of the hollow chamber. Fluids or medication will be infused through this needle.

A peripherally inserted central catheter (PICC) is a soft flexible catheter that is inserted into a vein at or above the bend in your elbow area. These may have 1, 2 or 3 lumens depending on the types of fluids and medications you use. The tip of the catheter is placed in the lower part of the major central vein (superior vena cava) just above the heart.

All CVADs are placed under sterile conditions. This is done in either the X-ray department or in the operating room by specially trained radiologists or surgeons. PICCs may also be placed at the bedside by trained nurses. A combination of local anesthesia and relaxing medication is used to make the procedure comfortable.

1. Tunneled Cuffed Catheter

2. Chest Ports

3. Peripherally Inserted Central Catheters (PICCs)

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Q. How long will you need intravenous (IV) treatment? If your treatment will be for months or years, a tunneled cuffed catheter or chest port are the most durable. If treatment is just needed for weeks or a month or two, then a PICC can also be used.

Q. How often will the device be used? If the device is needed every day or many days during the week, then a tunneled cuffed catheter or PICC would be the easiest to use. The chest port requires weekly needle changes and sticking the new needle through the skin into the chest port. If the device will just be needed once a week or once a month a port might be most appropriate.

Q. How active are you?If you are very active or like to participate in activities like swimming, a chest port may be helpful as your skin provides a barrier.

Q. Who will be caring for the CVAD? To most easily care for a device yourself, you will need to be able to use two hands. Tunneled cuffed catheters or chest posts will allow you to have both hands free. PICC lines exit through an arm, so only one hand can be used. If a family member is caring for the device, any of the CVADs may be appropriate. If expert nursing care is not available, you or a family member will have to change the needle that goes into the chest port weekly.

Q. What does my doctor recommend? Your doctor and home care clinicians may have specific recommendations based on your medical condition and based on the expertise of local surgeons and radiologists. Always consider their experience and advice.

Your CVAD is a very important part of your medical support program. There are many different types of devices or lines that can be successfully used. The right device for you depends on:

• the length of time it is needed

• how easy it is to use

• medical considerations

• your personal preference

• the experience of the clinician placing the line

Things to Consider When Selecting the Right CVAD for You

*Glossary

Lumen – The bore or hollow of a tube or catheter through which medication or nutrition can be infused.

Keeping Your Central Venous Access Device (CVAD) SafeBy Pankaj Vashi, MD

Chair, Department of Medicine, CTCA Medical Director, Gastroenterology/Nutrition and Metabolic Support, MRMC Cancer Treatment Centers of America®

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What is a (CVAD)?

A central venous access device (CVAD), also known as central line, is placed either through a vein in the arm, called a peripherally inserted central catheter (PICC), or through the neck or the chest (called a port or a tunneled cuffed catheter) into the large vein that goes to the heart. These devices can have one to up to three lumens*.

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A CVAD is used to infuse medicines, blood products, nutrients or fluids right into your blood. It is made of a material that is gentle on the veins, for example, silicone, which means it can be left in place for several weeks or months. Many different kinds of CVADs are available and each has a different use. (For more information on which catheter may be the best fit for you, see Dr. Steiger’s article on page 4.)

What is a CVAD used for?A CVAD is used to:

• give medicines over a long period of time, such as antibiotics or chemotherapy

• give more than one drug at a time

• give parenteral nutrition (PN)*

• give blood or blood products

• take frequent blood samples for testing

What are the benefits of using a CVAD?

The benefits of CVAD are to:

• reduce your risk of being admitted to hospital for infusion of different products

• enable the medication to be given to you without the need for repeated needle sticks

• allow you to have your treatment at home, long-term

What are the risks of using a CVAD? The risks of CVAD are:

Infection: Infection may develop at the place in the skin that’s cut or punctured to put in the CVAD. More serious bloodstream infections can also happen. The risk is usually between 1 and 3 in 100, but can be higher depending on many other factors, such as your diagnosis or treatment. You may need to be on antibiotics to treat the infection if it is around the CVAD site. The CVAD may also need to be removed.

Blood Clot: Sometimes a blood clot forms around the catheter. This can cause swelling in your arm, shoulder, neck or head. This occurs in fewer than 3 of every 100 patients (depending on your diagnosis, treatment or if you have had a clot before). You may need to take blood thinning medication. If the blood clot does not respond to the medication, the CVAD may need to be removed.

Blockage: The CVAD may become blocked; if this occurs, your health professional may be unable to administer medicines. This can usually be unblocked by the nursing staff by infusing anti-clotting factors into the device. However, if it cannot be unblocked, the CVAD will have to be removed.

Dislodgement: The catheter can shift, move, or become twisted in the vein. If this happens, it may need to be repositioned or removed.

Fluid leak: A hole or break in the CVAD may lead to a fluid leak. If you notice leaking, clamp the tubing between your body and the leak and call your support team right away.

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What should you do to care for your CVAD? Your nurses will teach you and your caregiver(s) how to care for your CVAD. The type of care you need will depend on your type of CVAD. In general, you will be taught about the following aspects of care:

• overall care of your CVAD device per your needs

• activity restrictions as necessary

• signs and symptoms to monitor and report if present

• contact details of health professionals, 24 hours a day, if you have concerns

To help avoid complications, follow these tips to care for your CVAD:

• Always wash your hands with soap and water before touching your CVAD. Washing your hands helps prevent infection. Remind everyone who cares for your CVAD to wash their hands.

• Try to keep the dressing dry. This can help prevent infection. When you shower, cover the site with waterproof material. Be sure you cover both the dressing and the cap(s). Your doctor or Coram team can suggest special covers to keep your site dry.

• Tape the tube(s) to your body to help keep from pulling on it. Do not bend or crimp the tubing.

• It is not wise to wear jewelry, necklaces or beads around your neck, as these may catch on your CVAD.

• Know what you need and keep enough supplies on hand to care for your catheter.

• Always be sure to have extra dressing change kits in case the dressing gets wet or comes off.

What potential problems should you be aware of?The area where your CVAD was placed must be checked daily for signs of infection and other problems. Please call your healthcare professional if any of these occur:

• redness, pain, swelling or oozing from around where the CVAD enters the skin

• if you feel unwell, such as fever, dizziness, chills or a temperature

• breathlessness, pain over your shoulder across the chest and into the neck and arm

If your catheter appears to have moved out of position or has been cracked or cut, immediately contact your home infusion nurse or physician or the clinic that placed the device. You may have to return to have it repaired or replaced.

SummaryAlthough there are risks associated with CVADs, the benefits of these devices usually outweigh the risks. You should be aware of the possible complications, recognize the signs and symptoms early, and bring these to the attention of your healthcare provider. The complications usually can be treated successfully. It is very important that you or your caregiver have all the educational information needed to feel comfortable being independent when you go home.

*Glossary

Parenteral Nutrition (PN) – A method of nutrition in which a special liquid food mixture is given into the blood through an intravenous (IV) catheter. The digestive system is not used. Also known as total parenteral nutrition, or “TPN.”

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Enteral Access – Proper Choice and Associated Complications

Gastrostomy TubeBy Mark H. DeLegge, MD and Cynthia Reddick, RD

Continued on next page.

Treatment Plan

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Enteral nutrition (tube feeding) requires the use of a feeding tube to deliver the liquid formulas or blenderized food*. Feeding tubes are placed into the stomach (called gastric feeding) or into the small intestine (called jejunal feeding).

In the hospital setting, feeding tubes may be passed through the nose into the stomach or into the small intestine. Generally, these tubes are not used in homecare because they can cause discomfort (nose, ear and facial pain) and can accidentally fall out. For the home setting, feeding tubes are placed through the abdominal wall into the stomach or small intestine. This can be done by a gastroenterologist (GI doctor), by a surgeon or by a radiologist.

Tubes placed into the stomach are generally known as gastrostomy tubes (or “G-tubes”). Those placed into the small bowel are known as jejunostomy tubes (or “J-tubes”). A decision to place a tube into the stomach or small bowel is made based on a few factors.

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The stomach is a natural place for a feeding tube. It is the most common location for feeding tube placement. It is the organ that we normally fill when eating by mouth; the stomach sends signals to us when we are full. Once full of food, it slowly releases the food into the small intestine where the nutrients are absorbed. This happens through muscle contractions within the stomach that squeeze the contents of the stomach into the small intestine. Stomach acid also helps to “break down” the food we chew and swallow.

A person receiving a G-tube must have a stomach or enough stomach to allow a feeding tube to be placed within it. Patients who have had most or all of their stomach removed would not be able to receive a G-tube. People

who have a muscle contraction problem of the stomach (such as gastroparesis*) would not be able to receive a G-tube, as the tube feeding delivered into the stomach would not be pushed downstream into the small intestine. This would lead to pain, nausea and vomiting. If there is a blockage of the stomach stopping tube feeding from passing from the stomach into the small intestine, a G-tube should not be placed.

Because the stomach is used to receiving large amount of food at once, a relatively large amount of formula (bolus feeding*) can be delivered. Or continuous feeding* can easily be done by the use of a tube feeding pump.

Gastrostomy Tube

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A J-tube is placed into the jejunum (one part of the small intestine). J-tubes are usually smaller in size than a G-tube. They are usually placed in people who cannot have a G-tube. Because the small bowel is smaller in diameter than the stomach, a large volume of tube feeding over a short period of time will not work. People with J-tubes usually receive their tube feeding slowly by the use of a mechanical pump.

Enough small bowel must be present in order for tube feeding to be absorbed. For example, people with short bowel syndrome (inadequate

amounts of small bowel to adequately absorb food and nutrients) would not be candidates for a J-tube. People with lack of muscle contractions in the small bowel should not have a J-tube. In these cases, tube feeding delivered into the small intestine would not be pushed forward into the remaining small bowel and would cause nausea, vomiting and abdominal pain. A blockage or obstruction of the small intestine would also be a reason not to receive a J-tube.

Jejunostomy Tube

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At times, patients need both a tube into the stomach and into the small intestine. A good example of this is a patient who has poor muscle contractions in the stomach and also has nausea and vomiting, but still needs to be fed. In these cases, a feeding tube may be placed into the stomach and another into the small intestine. The feeding tube in the stomach would not be used for feeding. Instead, it could be used to drain the contents of the stomach to reduce nausea and vomiting. At the same time, the patient could be fed into the small bowel. There are commercially available combination tube systems known as G/J tubes. They are placed into the stomach with

a smaller extension of the tube being placed into the small intestine. These tube systems allow both draining of the stomach and feeding into the small intestine at the same time. In many cases the gastrostomy drain tube is hooked up to a drainage bag. The small intestine feeding tube would deliver tube feeding to the jejunum by the use of a pump.

Once your tube is placed, how do you know if your tube feeding tube site is normal? It is important to know that your tube site should not normally hurt, ooze, or leak. Following are three possible tube site complications, how to avoid them, and what to do if you experience them.

Gastro-Jejunal Feeding Tubes

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One of the most common complications seen in patients who tube feed at home is called hypergranulation. This is thickened tissue at the stoma site. The stoma is the surgical opening in your stomach where the tube comes out; it has very tender tissue which can easily get irritated. This is also sometimes called hypergranuloma or “proud flesh.”

Hypergranulation can look like a spongy or smooth fragile mass of tissue around the tube site. It can be filled with tiny blood vessels and can bleed easily. It is often uncomfortable or painful. This thickened tissue may appear as a range of very small lumps or bumps of flesh. You may barely be able to see this unless you take a really close look underneath the feeding tube external bolster*. Or the thickened tissue may be very large and obvious.

Hypergranulation can come with or without a gooey discharge. Sometimes that gooey discharge is mistaken for a bacterial infection. So it is important for you and your healthcare provider to look closely at a tube site to figure out what is really going on so that the right action can be taken to fix the problem.

The causes of hypergranulation generally include one or more of the following:

• Excessive movement of the tube

• Excessive or daily use of hydrogen peroxide for cleaning

• In more rare cases, it can develop simply as the body’s own response to the presence of the tube

One example of tube movement is side-to-side movement, where a dangling tube is pulled or flops from one side to the other throughout the day. If the external bolster (not all tubes have these) is not set close to the abdomen, the tube can slide in and out of the abdominal wound. The friction of the tube sliding in and out across the flesh of the stoma can stimulate cell growth which, over time, can result in hypergranulation. People who have low-profile tubes, also called buttons, can also develop hypergranulation. This usually occurs when the button is not fitted properly and is too big for the stoma, which allows for excessive movement in and out of the stoma.

The best way to prevent hypergranulation is to make sure that your tube fits properly. This is true for both standard and low-profile tubes. Standard G-tubes and J-tubes should be secured by an external bolster that is set near the abdominal wall and/or with the use of medical tape. Secondly, use only soap and water for daily cleaning of your tube site. Hydrogen peroxide should not be used for daily cleaning; it should only be used rarely when soap and water does not remove crusting around the tube.

A good first step in the treatment of hypergranulation is to talk with your doctor. You may need to use hydrocortisone cream for a prescribed period of time on the proud flesh. If the hypergranulation does not respond to this after two or three weeks, then your doctor may choose to use other ways to remove the lump of tissue.

Hypergranulation

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Yeast Infection

Yeast infection at the tube site is another possible complication. This is usually related to excessive moisture at the tube site from a leaky tube. It may also be a result from bleeding or oozing from hypergranulation. Yeast infection can cause a red, inflamed, and irritated appearance at the tube site, which is usually painful. It should be treated with an antifungal medication (topical cream or powder usually works well) as soon as it is identified by your doctor. Yeast infection can be prevented by making sure you keep the tube site dry. Also make sure to resolve any issues that lead to leaking, oozing, or bleeding. If you have a leaky tube or any other moisture at the tube site, you should protect your skin with barrier cream to help prevent skin irritation or a yeast infection from forming. Barrier cream can be purchased over the counter and is the same as diaper rash cream, like Desitin®. It creates a barrier on the skin that protects it from too much moisture. It is important to also identify and fix the problem that is leading to the excessive moisture at the tube site.

Leaky and Poorly Fitting TubeLeaky and poorly fitting tubes can lead to problems like the one described above. It also makes life with a feeding tube more difficult than it needs to be. If your tube is leaking, something needs to be done so that it fits better and the tube site can stay dry and clean without constant use of gauze or dressing. Work with your doctor to improve the fit of your feeding tube if it is too big, too tight, or leaking daily.

*Glossary

• Blenderized food – Whole foods that include vegetables, fruits, meat and dairy, blended to thin consistency and are fed via a feeding tube.

• Gastroparesis – A condition where the stomach empties too slowly.• Bolus feeding – A large volume of tube feeding over a short period of time (for example,

300 cc every 4–6 hours).• Bolster – The crossbar on a feeding tube that keeps the tube in place.• Continuous feeding – A smaller volume of tube feeding delivered over time (for example, 50 cc

of tube feeding every hour). This is easily done by the use of a tube feeding pump.

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By Karen Hamilton, MS, RD, LDN, CNSC

Speedy…Ms.

One Consumer’s Journeywith Feeding Tube Placement

The first fact I learned about Donna Speed is that she has received home tube feeding for the past seven years because she can’t swallow. It’s been that way since she had surgery for a type of head and neck cancer called soft palate cancer. During our interview, the second fact I learned was that her middle name is Mae. But the only time she uses her middle name is on her driver’s license. So, in her home state of California, “Donna Mae Speed” is her official name!

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Donna’s attitude can be summed up as “life-is- short-so-have-fun.”It’s exactly this attitude that resulted in her decision to find a feeding tube that worked best for her active lifestyle. After her cancer surgery, while hospitalized at UC Davis, her doctors placed her first feeding device. It was a gastronomy tube (or “G-tube”).* The doctors told her she would need to use this tube to supply her nutrition for the rest of her life. Armed with this knowledge, she went home and began to try to live a “new normal” life. She tried to adapt to feeding herself via bolus* feeds several times a day. During the first five years on home tube feeding, she sometimes experienced leakage around the tube; her stoma* site would become red and raw. She treated her skin with cream and attempted to keep the site as dry as possible. Her doctors replaced the tube every three months to make sure that the fit of the tube was right for her stoma size.

Despite adapting to her new normal, Donna didn’t feel that her G-tube was quite right for her. She didn’t like how it hung loose and would stick out of her skirt or pants. It could get caught on things if she wasn’t careful. She simply wanted to move along in her life without feeling restricted.

One day she saw an ad by a feeding tube manufacturer about another type of “low-profile” tube. This type of tube, also called a “button,” would be level with her skin. It would require an extension set, which is an additional piece of tubing that connects to the tube and then attaches to either a pump or a syringe for bolus feeding. This was it! This could relieve her from the floppy tube and all its issues.

Being true to her nature, Donna didn’t waste any time. She immediately contacted her doctor to see how she could have this new tube placed. Her doctor agreed this would be a great option for her because her stoma site was well healed.

She scheduled an appointment right away to have her G-Tube replaced with a button tube.

Eventually she no longer needed her doctor’s help to replace her button tube every three months. Now she replaces them herself easily. This has saved her time from scheduling, traveling and waiting. She couldn’t be happier… Little Ms. Speedy has better things to do!Donna has had her low-profile button feeding tube for a few years now. She feels that it has been a blessing and has improved her quality of life. She still sometimes has leakage around the tube site, but has learned to feed herself a bit more slowly. She also now uses a formula with more nutrients, which means she can feed herself less. She also continues to take good care of her skin at the stoma site, so any redness doesn’t last long.

When asked what wisdom she’d like to share with other consumers, Donna said simply, “Though it’s not something we thought we’d ever experience, it is what it is. So make the best of it and enjoy your life to the fullest... button, tube or ‘real’ eating.” And then she was off to enjoy her day!

For more information about feeding tubes and resources for consumers, check out: coramhc.com/patients/resources.aspx

*Glossary

• G-Tube – Gastrostomy feeding tube• Bolus – Fluid or medication given at a

controlled, fast rate• Stoma – The surgical opening in the stomach

where the feeding tube comes out

Embracing the Lifeline in Your MirrorBy Michael Medwar, Nutrition Patient Advocate

I saw the lump in my chest in the mirror nearly every day for 17 years. The lump was my port*.I never really became comfortable with the sight of it. But the longer I had it, the more natural it felt as a part of my body. And because it played a key role in my health, I embraced it from the first day and guarded it closely.

Many long-term home parenteral nutrition (PN) consumers probably feel the same way about their central lines. It’s there—under your skin or sticking out from your arm or chest. And you don’t particularly like how it looks, but it’s part of you, and you do everything you can to protect it. After all, it’s your lifeline.

The port wasn’t my first central line. The first was a Broviac®*. It was implanted when I was age 14, in 1984. I remember the doctor explaining that there was also a type of catheter called a Hickman®. The devices are similar, but Broviacs are smaller and usually implanted in younger people. So there wasn’t a choice. The important thing was, I needed to do PN at home for the foreseeable future. Until then I only had experience with PN while in the hospital being treated for Crohn’s disease.

My mom, who had a nursing background, changed my dressings, but I learned how to do everything else. I injected vitamins into the IV bag. I fit the cassette into the large IMED 960 pump and primed

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Advocacy Program

At Coram, you are always a Very Important Patient to us! Your Coram Patient Advocate, Michael Medwar, can help connect you with resources and provide additional support. Michael is always there for YOU – as your champion, supporter and spokesperson to help ensure you are satisfied with your care and help you on your path to better health.

Michael Medwar

Patient Advocate, Nutrition Support Program

c 508.254.3638 | f 949.462.8584

AdvocacyCorner

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the tubing. I even learned to hook up the nightly feedings and flush the line with saline and heparin in the morning.

But there were other things to learn.I remember using my arms to protect the Broviac while walking through the halls in high school. There were hyped-up teens everywhere. You never knew if a classmate would literally crash into you in crowded halls. I also worried that even though it was taped to my chest under my shirt, the line would get yanked. Luckily, that never happened, although I did fall down a few stairs once while carrying something into a relative’s basement. My dad rushed over, and I quickly assured him, “The line is OK!”

In late 1985, I had surgery to remove diseased bowel, and the Broviac was removed. When I got home, I remember jumping around. I felt free. No line sticking out of me, no PN. Unfortunately, the disease returned, and by the spring of 1987, it was recommended I go back on PN.

By that time, I found out about ports. I knew right away I wanted one. The port would be entirely under the skin. I would need to get comfortable with sticking a needle into the device every night using sterile technique. (Note: Most doctors today recommend leaving a needle in a port for up to one week). During the day, I would remove the needle and be able to take showers, swim, and sweat without worrying about dressings and infections. I was going to off to college soon, and all of this sounded good to me.

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The ports served me well through college and beyond. In the ‘90s I started playing softball and tried martial arts briefly, which led to cardio-kickboxing. I always protected my chest. I was glad I had a port.

According to my medical notes, I had several ports from 1987–2004. Some lasted years, some lasted only months. Some ports were lost because they became clogged. I lost a couple to blood clots. In fact, by 1991 my veins were already so poor that I had open-heart surgery to place the catheter in the right atrium of my heart. After that, when a line had to come out, it was replaced over a wire and remained threaded into my heart.

I lost one port to infection, in 1999. When I hooked up and immediately felt chills, I knew it was bad news. At the hospital my fever reached 105 degrees. Once again, the port was replaced. For that hospitalization, my notes read, “seventh and last port.”

In September 2001, after years of improving health and advances in diet and hydration that I took to heart, I was able to finally wean off PN. But considering the type of serious open-heart surgery that was done to place the port, there was no rush to remove it, neither on my doctor’s part nor mine. I flushed the port with heparin once a month for the next three years so it could be ready to go just in case it was needed.

The day my port-a-cath was removed for good was November 22, 2004, the 10th anniversary of my grandmother’s passing. I felt she was with me in a small way, and it brought me comfort. She loved the Boston Red Sox, and she was one of the reasons I became a big fan. In the fall of 2004, Sox fans like me were still rejoicing in winning our first championship in 86 years. To me, anything seemed possible–including living without PN and the lump in my chest. When it came out, I ran my hand over where the port had been. I felt like there was no going back.

But that’s not quite the end of the story. In 2013 I had another surgery to remove more diseased intestine. There were some complications, and bowel rest and PN were needed for a short time. The technicians somehow found a large vein in my arm that was usable and a peripherally inserted central catheter (PICC) line was placed.

My intestine had a leak, and I couldn’t eat. I knew I had better take care of this line. I’m left-handed, so the PICC was in my right arm. I didn’t use that arm much. My mom helped cover the line before I showered. A Coram nurse changed the dressings. The PICC did the job for a month.

I know a Coram consumer who has been on PN for 41 years; he has told the story of having the same PICC line for 12 years. That’s highly unusual. I can’t imagine having a PICC for that long. But that line worked for him. For me, the ports worked. I never gave a thought to trying something different.

That’s the key for long-term PN consumers: What kind of line works best for you?

If you can find the answer to that question, it will be easier to look in the mirror and embrace the fact that it’s your lifeline.

*Glossary

• Port – A catheter that is implanted under the skin and is accessed with a needle.

• Broviac – A type of tunneled central venous catheter, often used in children.

• Crohn’s disease – A type of inflammatory bowel disease (IBD) that may affect any part of the gastrointestinal tract.

• PICC line – A peripherally inserted central catheter, usually inserted in the upper arm.

Consumer Connect Call Series 2017Join other nutrition consumers for Coram’s free Consumer Connect Call Series. It’s a great way to learn — from the comfort of your home or office — about key topics from leading clinical and advocacy experts. The conference calls give you an opportunity to share, listen and learn about topics that are relevant to you.

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Date Call Topic

Thursday, January 12, 2017

Journeying with Joy: How to Manage Stress in the New Year

Thursday, February 9, 2017

Tips to Help Successfully Manage Your Feeding Tube

Thursday, June 15, 2017

Travel and Insurance

Thursday, August 10, 2017

Tips to Help Successfully Manage Your Central Access Device

Thursday, November 9, 2017

Advocating for Yourself While in the Hospital

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