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elebrateLife
For Home TPN and Tube Feeding Patients
Ways to Keep
Your Liver Healthy
Strong Bones, Strong Body
Clean, Safe Catheters
Five Ways to Decrease
Home TPN Dependence
Anemia Answers
Summer 2009
A publication of
Contents
Summer 2009
4 Ways to Keep your Liver Healthy
TPN can be a life sustaining therapy. Although, as with nearly every therapy, there are potential
associated complications that both clinicians and consumers should be aware of.
7Celebration of Life Circle Award: Bob and Bernice Ellens
Bob and Bernice Ellens are an inspiring example of how to overcome the
unexpected, stay positive, and live life to its fullest.
8Strong Bones, Strong Body
Over 25 million Americans are currently diagnosed with osteoporosis.
Find out what the associated risks are for long-term TPN consumers.
10 Clean, Safe Catheters
It is important to recognize the signs and symptoms of complications
associated with the insertion and use of TPN central venous catheters in
order to minimize them.
12 Five Ways to Decrease Home TPN Dependence
For a majority of those on long-term TPN, there is typically an element of
malabsorption which requires the need for on-going nutrition support.
Learn what you can do to help improve absorption and decrease your
TPN dependence.
16 Anemia Answers
Tired blood. Low blood. Iron poor blood. These are all familiar descriptions
for the condition known as anemia. Although anemia cannot be treated
without medical intervention, there are certain steps you can take to
keep it under control.
19 Advocacy Corner
19 Coram Consumer Conference Call Series
2 | Celebrate Life
Celebrate Life
The Quarterly Newsletter for Home TPN
and Tube Feeding Patients
Celebrate Life Staff
Carlota Bentley, Managing Editor
Karen Hamilton, Clinical Editor
Piper Peteet-Kilgore, Senior Editor
Nancy Geiger Wooten, Design and Layout
Contributing Writers
Therese Austin, MS, RD, LD, CNSD
Mark DeLegge, MD
Heather Gifford, RD, CNSD
Linda Gravenstein, Coram Partner
Maryann King, MPH, RD, CNSD, LDN
Melissa Leone, RN, BSN
Anar Shah, MS, RD, CNSD
Mr. and Mrs. Ellens, TPN Consumers
Celebrate Life is published quarterly and 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 newsletter 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 newsletter.
© 2009 Coram, Inc. 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 newsletter are the property of their
respective owners.
We welcome your comments, stories and suggestions.
Please send all correspondence to:
Coram, Inc.
Celebrate Life
1675 Broadway, Suite 900
Denver, CO 80202
COR09007-0609
Guest Editor Letter
Hello All,
I am very excited to introduce the summer issue of Celebrate Life. First, I would like to tell you a little
about myself. I have been a Certified Nutrition Support Dietitian for 12 years and joined the Coram team
in the Cleveland, Ohio area a little over a year ago. Being a Certified Nutrition Support Dietitian means
I have additional certification and expertise in caring for individuals receiving parenteral and enteral
nutrition. I am very proud to be a part of Coram and I have been impressed with the many talented
clinicians with whom I work including pharmacists, nurses, and other dietitians.
My particular area of interest for the last several years has been in home nutrition support. I am pleased
to be taking a leading part in the prevention of complications associated with long-term TPN and tube
feeding, and being a proponent of the roles that you, as a consumer, can play in preventing these
complications. Home nutrition support — as opposed to short-term hospital based nutrition support
— is unique, and the issues faced by consumers are very different.
This issue of Celebrate Life contains an article that I authored on preventing TPN-related liver disease.
There is also an informative article on assessing Vitamin D status and treatment for metabolic bone
disease. In addition, we included a great piece on the different types of anemia that can occur, and
how each can be treated. You can also learn what a consumer can do to prevent complications that can
occur with central venous catheters. Lastly, be sure to take a look at the article that discusses ways to
potentially help improve absorption and minimize your TPN dependence.
I hope you find the information in this issue as valuable and informative as I do. Please let us know what
you think!
Sincerely,
Therese Austin MS, RD, LD, CNSD
Infusion Nutrition Support Dietitian, Coram
Summer 2009 | 3
Ways to Keep Your
Your Liver Healthy
By Therese Austin, MS, RD, LD, CNSD
4 | Celebrate Life
Total Parenteral Nutrition (TPN) can be a life
sustaining therapy. However, as with nearly
every therapy, there are potential associated
complications that both clinicians and
consumers should be aware of. By identifying
the patient’s risk for complication development,
you can establish actions to reduce or even
prevent the complication.
Parenteral nutrition associated liver disease
(PNALD) is one such therapy-related
complication that can occur in both children
and adults. This condition is much easier to
prevent than it is to treat — and that is where the
Coram Home Nutrition Support Team (HNST)
takes an active role in evaluating your home
nutrition prescription.
Common predisposing factors for PNALD are
listed in Table 1. Crohn’s disease, cancer, and
short bowel syndrome are commonly associated
with abnormal liver function tests. These tests
can indicate that liver stress and injury is present
which can predispose a patient to PNALD.
Risk Factors Associated with PNALD
Crohn’s disease
Short bowel syndrome
Nothing by mouth, no oral or tube
feeding intake
Infants
Long-term TPN use
Frequent sepsis from catheter or
small bowel bacterial overgrowth
Short bowel syndrome and pseudo-obstruction
can also occasionally lead to small bowel
bacterial overgrowth. When bacteria normally in
the intestine are present in excess, organisms are
able to produce substances that can be toxic to
the liver.
Individuals unable to tolerate an oral diet or tube
feeding are at risk for developing PNALD as well,
due to an increased risk of developing gallstones
from lack of gallbladder stimulation. Infants are
also at risk due to the immaturity of their GI tract,
frequent surgeries, and infections. Lastly, people
who require TPN for a prolonged period of time
have an increased risk of developing PNALD.
Every individual on TPN receives routine lab tests
and the Coram HNST closely evaluates them.
Included in the blood work are liver enzymes
such as AST, ALT, and alkaline phosphates. Serum
bilirubin levels, albumin and prothrombin time
are also a measure of liver function. Minor
elevations are common with TPN infusions and
levels may be elevated for reasons that do not
specifically correlate to TPN. Consistent and
significant elevations however, will prompt the
Coram HNST to have a discussion with your
physician regarding possible causes of the
elevation. Your physician may order a work up
including a review of your current medications,
an ultrasound of your liver or biliary system, and
additional blood work. Evaluation of your TPN
prescription is an ongoing activity that ensures
you receive adequate nutrition without
overburdening your liver.
continued on page 6
Table 1
Summer 2009 | 5
The following is a list of items that you can monitor and discuss with your Home Nutrition Support
Team and physician to help minimize your risk of TPN related liver disease. Remember to consult with
these individuals prior to making any changes to your therapy plan.
Know Your Numbers
Cycle TPN
Stay aware of your lab results including AST,
ALT, alkaline phosphatase, and bilirubin levels. If
any levels are elevated, monitor the trend for an
increase or decrease.
Cycling the TPN over a period of typically 12–16
hours each day allows a period of fasting and
gives the liver a “break” from metabolizing the
nutrients in the TPN.
Establish a Goal Weight
Monitor Trace Element Levels
Determine a comfortable weight. It is necessary
to avoid excessive calories, especially from the
dextrose and lipid components of TPN. These
nutrients can be reduced in the TPN if you would
like to lose weight. This can be discussed with
your physician and nutrition support team.
Copper, chromium, selenium, manganese, and
zinc levels should be monitored periodically
based on an individual’s condition. Copper and
manganese are excreted by the liver and may
need to be temporarily removed from the TPN if
bilirubin levels are significantly elevated.
Take an Oral Diet as Tolerated
Prevent Catheter Infections
Eating even a small amount can stimulate
gallbladder contractions, reducing the risk of
developing gallbladder sludge and gallstones.
Eating also maintains healthy gut integrity.
Recurrent catheter sepsis may cause liver
dysfunction. Maintaining meticulous catheter
care can prevent infections from occurring.
Monitor for Signs
of Bacterial Overgrowth
Report new symptoms of abdominal pain,
distension, diarrhea, or excessive flatulence
to your physician. A course of antibiotics may
be prescribed to treat possible small bowel
bacterial overgrowth.
Update Your Medication List
Keep the HNST updated on any new medications
that you are taking. Certain drugs can be
discontinued with persistent liver enzyme
elevations. Conversely, other drugs may be added
to promote bile flow and healthy liver function.
6 | Celebrate Life
Transplantation
Some individuals who develop ongoing or lifethreatening liver failure should be evaluated
for intestinal transplant with or without a
liver transplant.
Evaluating your risk for liver disease and
interpreting your lab values is part of the usual
standard of care that your Home Nutrition
Support Team provides on a regular basis. If you
have any questions about your therapy or risks
involved, do not hesitate to contact your Coram
pharmacist, dietitian, or your physician.
References
1. Hamilton C, Austin T. Liver disease in long term parenteral nutrition. Support Line.
2006;28(1)10-18.
2. Lee V. Liver dysfunction associated with parenteral nutrition: what are the options?
Practical Gastroenterology. 2006;45:49-50,52,55-58,60-64,66-68.
3. Buchman A. Complications of long term home total parenteral nutrition. Their
identification, prevention and treatment. Digest Dis Sci. 2001;46:1-18.
Celebration
of
Celebration of Life Circle Award
Circle
Bob and Bernice Ellens
Bob and Bernice Ellens were married in 1949 and have raised five children. They also have 20
grandchildren and 12 great-grandchildren! Despite working and managing a busy household, both Bob
and Bernice actively pursued a life-long avocation of mission work. Over a period of more than 20 years,
they worked on projects in Mexico, Peru, and Myanmar. As a result of their mission involvement, their
children have all volunteered for, or visited, the foreign mission field; as have many of their grandchildren.
The Ellens’ also opened their hearts and home to
numerous college students, and to missionaries
home on furlough. Over the years, they’ve hosted
people from 40 different countries; some for a
couple of meals, others for weeks and some for
months at a time.
In May 1971, the Ellens were faced with their
biggest challenge — Bernice was diagnosed with
ovarian cancer and given only 18 months to live.
After undergoing chemotherapy and radiation
treatments, 38 years later she remains active
and vibrant. Unfortunately, as a result of the
radiation treatment, strictures later occurred in
her small bowel resulting in surgery and ileostomy
placement. The extent of the resection left her
body unable to absorb the necessary nutrition
and fluids needed. As a result, she has received a
TPN feeding for 12 hours every night for the past
five years.
Although Bob and Bernice no longer travel across
the globe, they do remain involved from their
home by phone, mail, and email. Their experiences
have given them the rare opportunity to know
people around the world, and they enjoy staying
in touch with all of them.
Bob and Bernice Ellens have dedicated their life to mission
work, working on projects in Mexico, Peru, and Myanmar.
The Celebration of Life Circle Award recognizes
nutrition consumers and caregivers for their
commitment towards living an independent and
full life.
To nominate someone you know for the
Celebration of Life Circle Award, please send an
email to CelebrateLife @coramhc.com.
Summer 2009 | 7
Strong Bones
Strong Body
By Maryann King, MPH, RD, CNSD, LDN
Nutritional factors
can play a role in
metaolic bone disease
Over 25 million Americans are currently
diagnosed with osteoporosis; it is the most
common form of metabolic bone disease and
the most prevalent bone disease in the world.
Osteoporosis is defined as a loss of bone mass
and deterioration of the skeleton leading to
increased risk of fractures.1 The standard
technique for diagnosing osteoporosis is a dual
energy x-ray absorptiometry (DEXA Scan) and
the diagnosis is based on bone mineral density
measurements. Other terms often used to
describe bone abnormalities are osteopenia
(reduced bone mass) and osteomalacia (softening
of the bones due to impaired mineralization).
8 | Celebrate Life
The prevalence and incidence of TPN-associated
metabolic bone disease is unknown; however,
there is concern that patients on long-term
TPN are at risk of developing osteoporosis.
Osteoporosis was reported in 41 percent of
patients after six months of being on home TPN
in one group2, and in 67 percent of patients on
long-term TPN due to intestinal failure.3
The underlying causes of metabolic bone
disease in long-term TPN consumers is also
unknown. Many believe the causes are
multifaceted and are associated with many
disease states, conditions, and medications (see
Tables 1 and 2).
Diseases or Conditions Associated with Bone Loss
Postmenopausal
osteoporosis
Endocrine diseases
Hyperthyroidism
Short bowel syndrome
Multiple myeloma
Spinal cord injuries
Immobilization
Gastric bypass surgery
Long-term TPN
Hyperparathyroidism
Crohn’s disease
Malabsorption
Leukemia
Prolonged bed rest
Alcohol abuse
Cystic fibrosis
Medications that Can Affect Bone Loss
Corticosteroids
Warfarin
Phenobarbital
Leuprolide
Heparin
Phenytoin
Methotrexate
Orlistat (weight reduction
medications)
Questran
Table 2
Table 1
There are many nutritional factors that also
play a role in metabolic bone disease. Calcium,
vitamin D, phosphorus, and magnesium are all
necessary to maintain bone integrity and work
by decreasing bone turnover and slowing bone
loss. The “sunshine vitamin,” vitamin D (which is
actually a hormone), plays a very important part
in maintaining normal blood levels of calcium
and phosphorus. Vitamin D also increases
the efficiency of calcium absorption from the
small intestines and helps in the formation
and mobilization of calcium to form bone.
Throughout the world, the major source of
vitamin D is sunlight4, but in nature, very few
foods contain vitamin D. Some of these include:
fish liver oils, the flesh of fatty fish, the liver and
fat from aquatic mammals such as seals and
polar bears, and eggs from hens that have been
fed vitamin D.
Coram provides an interdisciplinary team focus
which helps reduce the likelihood of patients
developing metabolic bone disease. Your
Home Nutrition Support Team is aware of the
risk factors and helps ensure that the TPN
support you receive is appropriate.
Here are a few things you can do to help
protect yourself:
• Talk to your doctor about getting a bone
DEXA scan to establish your baseline.
Scans should be done yearly or as needed
thereafter.
• Have your vitamin D level checked (25 OH
vitamin D).
• Unless contraindicated, get some sunshine
for 10-20 minutes (two to three times per
week) during the spring, summer, and fall.
• Make sure that you are getting adequate
calcium.
• Talk to your doctor regarding weightbearing exercises.
• Avoid alcohol, excessive caffeine
and smoking.
Your nutrition support team at Coram is
committed to providing you with the best
clinical care possible. Please feel free to contact
your local branch and speak to your pharmacist
or dietitian if you have any questions or concerns
about metabolic bone disease.
continued on page 19
Summer 2009 | 9
Clean, Safe Catheters
by Mark H. DeLegge, MD, Coram Medical Director, Professor of Medicine,
Medical University of South Carolina
We have come a long way with the safety of parenteral nutrition (TPN) use in the home over
the past 30 years. However, the safe use of TPN depends on obtaining and maintaining safe,
prolonged vascular access (a catheter in a large vein for TPN infusion). The complications
associated with obtaining and maintaining vascular access are the leading causes of
hospitalization in TPN patients.1,2 These vascular access devices are commonly referred to as
central venous catheters, or CVCs.
It is important to recognize the signs and
symptoms of complications associated with
the insertion and use of TPN CVCs in order to
minimize them. It is also important to know what
you, as a patient or a clinician, can do to minimize
the development of CVC complications.
third of the subclavian vein before it enters the
heart). Use of the femoral vein (large groin vein)
with CVC placement for TPN infusion is usually
discouraged because of associated infection
complications, but may be used as an access site
when others fail.5
Obtaining Access
Complications related to vascular access
device insertion can be life threatening.
Cardiac arrhythmia (abnormal heart rhythm)
can occur during insertion of the catheter
and usually indicates that the catheter tip has
been advanced too far (such as into the right
atrium or ventricle). Pulling the catheter back
into the superior vena cava usually relieves the
arrhythmia. Pneumothorax (collapse of a lung),
occurs approximately 1 percent of the time.
Treatment with an immediate chest tube (a tube
placed through the ribs directly into the chest)
is often required. A small pneumothorax, less
than 15 percent of the lung volume in size can
be followed without the need for a chest tube.
In these cases, daily chest x-rays should be
performed to ensure that the pnuemothorax
is improving.
Vascular access devices can be inserted through
the skin into a major (large) vein by interventional
radiology or surgically in the operating room.
Ultrasonic-directed CVC placement in the
radiology suite under sterile conditions is safe,
convenient, and economical. The subclavian
vein (a large central vein in the chest) is the most
common place to position a CVC for TPN delivery.
The incidence of catheter infection is lower with a
subclavian CVC as compared to other locations.3
However, placing a CVC into the subclavian vein
is associated with complications; most worrisome
is an increased incidence of pneumothorax4 (a
punctured lung). After placement of a subclavian
CVC, an X-ray of the chest is taken to make sure
there is no damage to the lung and that the tip
of the catheter is in the proper location (the last
10 | Celebrate Life
Complications of Prolonged Venous
Access Catheters Long-term complications of TPN and CVC include
infection, thrombosis (clotting), and catheter
occlusion (blockage). Catheter infections are
either local (at the skin level) or systemic. Local
infections can be at the catheter skin entry
site or in the tract (tunnel). Symptoms of local
infections are redness, tenderness, and swelling.
Pus may also be present. If the exit site alone is
involved, the infection can usually be managed
with antibiotics and local wound care without
having to remove the catheter. However, if the
port site (if the CVC is a port) or the subcutaneous
tunnel (if there is a tunneled CVC) is involved,
the CVC usually should be removed to prevent
worsening of the infection.
Catheter infections are most likely produced by
bacteria that live in a filmy layer on the inner
portion of the catheter or its hub (outer insertion
point of the catheter).5 A fungus can also cause
catheter or blood infections. Patients usually
develop fever, chills, nausea, and weakness.
Patients at home with a CVC who develop
fever without an obvious cause (such as an
upper respiratory tract infection) should be
hospitalized. Blood cultures should be drawn
both peripherally (in an arm or hand vein) and
through the catheter.6 The CVC should be used
only for administration of antibiotics (the TPN
is held) while other causes of infection are
excluded.
The most frequent bacteria causing CVC
infections is Staphylococcus epidermidis and it
can usually be treated with antibiotics without
having to remove the catheter. Catheter
infections caused by a fungus, such as Candida,
usually requires removal of the CVC to be
properly treated. Endocarditis (infection of the
heart), osteomyelitis (infection of the bones),
and kidney failure can also result from CVC
infection.7
Steps that can reduce the incidence of CVC infections include the use of occlusive sterile dressings or plastic membranes over the catheter
exit site, regular, proper hand washing, avoiding
touch contamination (especially of the hub),
and providing good patient training.6 Chlorhexedine has been shown to be an excellent
cleanser for the skin site when dressing changes
are
performed,
and the combination of alcohol and
One of the
povidone
iodine
(betadine) has been
most important
shown to be equally
concepts for
effective.
Other
measures, such as
patients to become
the use of prophylactic antibiotics and
comfortable with
routine changing
of catheters, have
is self-advocacy.
not been shown to
decrease infection
rates.8
A potentially beneficial bacterial infection
prevention mechanism involves the “locking” of
an antibiotic within the central venous catheter
after flushing to “sterilize” the catheter.9 There
have been successful reports of preventing catheter infections with this technique although no
large study has been performed.
One of the most important concepts for patients
to become comfortable with is self-advocacy.
Whenever you see a healthcare worker (nurse,
physician) accessing your CVC, watch for their
continued on page 18
Summer 2009 | 11
5
Ways to Decrease
Home TPN
Dependence
By Heather Gifford, RD, CNSD
12 | Celebrate Life
Chances are if you are on long-term TPN, you would probably love to take a day or two off of therapy.
There are many different reasons why consumers receive TPN but for a majority of those on long-term
TPN, there is typically an element of malabsorption which requires the need for on-going nutrition
support. Often there are things that you can do to help improve absorption and decrease your TPN
dependence. Of course, consult your Home Nutrition Support Team (HNST) and your physician
before making any changes to your therapy plan.
1
Here are the “top five” ways you can attempt to decrease your TPN dependence.
Eat!
There may be some instances when your doctor
may not want you to eat anything, but often
food is allowed and encouraged. Did you know
the entire gastrointestinal tract (GI) is about 25
feet long? Our GI tract is made up of the mouth,
esophagus, stomach, small and large intestine,
rectum, and anus. Each portion of the GI tract
has a very specific purpose when it comes to
breaking down food, absorbing nutrients, and
excreting waste products. If you have had
any part of your small intestine removed, you
probably have realized that you can experience
diarrhea and/or increased ostomy output
shortly after eating. This may discourage you
from wanting to eat again. However, our GI tract
is comprised of muscle and we need to “use it
or lose it” just like any other muscle in our body.
By eating, (even if you have diarrhea or high
ostomy output) you are providing nutrients to
the remaining GI tract and stimulating normal
digestive enzymes. Over time, the remaining
bowel will adapt and begin to work better and
absorb more nutrients.
2
Adherence to a Specialized Diet
Specialized diets will often be used depending
on your particular diagnosis. A specialized diet
is designed to help decrease fluid and stool
output. This will help your body retain as many
of the foods, fluid, and nutrients that it is capable
of. Eating foods that are not appropriate for you
may cause increased output. It is best to work
closely with your physician and Home Nutrition
Support Team (HNST) to determine the best diet
modifications for your individual needs. Below
are some common recommendations:
Eat small, frequent meals: If you eat too much
food at one time, it will push the food to move
too quickly through your GI tract. This will cause
you to lose a portion of the fluid and nutrients
you have consumed. Plan on eating five to six
small meals daily.
Be aware of foods and beverages that may
cause diarrhea: Certain foods and beverages
can make stool output worse. Below are some
potential foods which can increase nutrient and
stool output:
• Fat: Foods high in fat may be difficult to
digest in large portions and may increase
stool and nutrient output. It may be best
to consume a moderate fat diet to help
improve digestion and absorption.
• Sugar: Foods and beverages high in
sugar may cause increased stool output
by pulling water into the intestine. This
means it will not be used as fluid for
the rest of the body. Foods containing
sugar alcohols such as “sorbitol” are not
absorbed in the GI tract and may cause
increased stool output.
Summer 2009 | 13
• Lactose: Some people may have difficulty
3
4
with foods and beverages containing
lactose (milk sugar). If you love lactosecontaining products but notice increased
stool output, ask your home nutrition
support team about products designed to
help you digest lactose.
Consume Adequate Fluid Intake
(and the right types of fluids!)
In order to decrease TPN dependence, you must
be able to take in and absorb enough fluid to
prevent dehydration. Signs and symptoms of
dehydration are extreme thirst, dry mouth,
decreased urine output, or dark colored urine.
When diarrhea occurs, not only are you losing
food and nutrients, but also fluid that is vital to
maintain adequate hydration. It is very important
to take in not only enough fluid, but also the
right kind of fluid.
Sip fluids continuously throughout the day:
Your goal should be to drink at least eight cups of
fluid per day (64 oz). Depending on the amount
of output you have, you may need more. Your
HNST will be able to let you know how much
fluid you need to prevent dehydration. It is best
to drink between meals instead of during meals.
Be cautious with caffeinated and sugary fluids as
both can increase output.
Oral rehydration solutions (ORS): Oral
Rehydration Solutions may be necessary if
you have an ileostomy and/or if stool output is
greater than one liter/day. ORS help pull water
into the body from the intestine. This means you
will retain more of the fluid you drink vs. losing it
in the form of diarrhea. There are many different
types of ORS recipes available. Your HNST can
provide you with copies of recipes best tailored
to your taste. Please note: Sports drinks do not
count as ORS and could make diarrhea worse.
14 | Celebrate Life
Your HNST can tell you how much ORS you may
need daily to prevent dehydration.
Careful Documentation of
Nutritional Intake and Outputs
Food and Symptom Diary: If malabsorption is an
issue, you may find that you need to eat two to
four times the amount that you normally would
just to maintain your weight. As mentioned
previously, there are often “trigger” foods that
increase stool output. It is often helpful to keep
a diet log of all fluids/food consumed. This will
help identify problematic foods and help your
HNST determine if any modifications and/or
medications may be indicated to help decrease
output.
Documentation of “ins vs. outs”: It is very
important to keep track of not just the types of
foods and fluids you are consuming, but also
documentation of stool and urine output. This
helps your HNST determine if the food/fluids
consumed exceed stool and urine output. It is
also helpful to keep track of your daily weight as
this will be a good indicator of healthy weight
gain; it will also tell us if you are getting the right
amount of fluid per day.
5
Stay Positive!
When you first started on home TPN, it may
have seemed impossible that you could ever
decrease TPN dependence. However, it may be
entirely possible, even if it is just one day off a
week. It is important to set realistic goals and
work closely with your home nutrition support
team. Your HNST is available to help you achieve
your goals and will work with your individual
needs. Although it may not happen right away,
with the right approach and the right attitude
you could be one day closer to decreasing TPN
dependence.
Oral Rehydration Solutions
World Health Organization Recipe
Ingredients:
½ tsp salt
•
• ½ tsp potassium chloride
(salt substitute such as Nu-Salt)
• 8 tsp sugar
• ½ tsp sodium bicarbonate
(baking soda)
• 1 liter water (4 ½ cups)
Directions:
Combine all ingredients and stir until
dissolved. You can also flavor with Crystal
Light® to taste.
Contains: 90 mEq Sodium, 20 mEq Potassium,
80 mEq Chloride, 30 mEq Citrate, 200 mOsm,
20 gm Glucose
Homemade Recipe
Ingredients:
½ tsp salt
•
• ½ tsp baking soda
• 8 tsp sugar
• 1 cup orange juice (unsweetened)
• 1 liter water (4 ½ cups)
Directions:
Combine all ingredients and stir until
completely dissolved.
Annual Oley Consumer/Clinician
Conference 2009
On June 29–July 2, the Oley Foundation is
hosting their 24th Annual Oley Consumer/
Clinician Conference. Held at the TradeWinds
Island Grand Beach Resort in St. Petersburg,
Fla., this year’s theme is “Finding the Perfect
Balance.” Coram is once again continuing its
support of the conference as a major sponsor
and exhibitor.
The Oley Foundation is a national,
independent non-profit organization that
provides information and psychosocial
support to consumers of home parenteral
and enteral nutrition, helping them live
fuller and richer lives. The Foundation also
serves as a resource for consumer’s families,
clinicians and industry representatives and
other interested parties.
Coram is proud to be a Gold Medallion Level
Partner in 2009; to be the partner of choice
to provide 24-hour, on-call and emergency
service to Oley conference attendees; and to
have donated over one million dollars to the
Oley Foundation over the years.
To find out more about the Oley Foundation,
visit www.oley.org.
Contains: 90 mEq Sodium, 13 mEq Potassium,
80 mEq Chloride, 30 mEq Citrate, 235 mOsm,
20 gm Glucose
Summer 2009 | 15
Anemia Answers
By Anar Shah, MS, RD, CNSD
Tired blood. Low blood. Iron poor blood.
These are all familiar descriptions for the condition known as anemia. Anemia
is a common blood disorder caused by an insufficient number of red blood
cells (RBCs) or an insufficient amount of hemoglobin contained in RBCs.
Hemoglobin, which gives blood its red color, is an
iron rich protein produced in your bone marrow
that carries oxygen from the lungs to the rest of
the body. Oxygenated blood is needed to give
your body energy.
Fatigue is the most common symptom of
anemia. Someone who is anemic may experience
weakness, pale skin, irregular heartbeat,
shortness of breath, chest pain, dizziness,
cognitive problems, numbness in the extremities,
and headache.
Anemia is classified as either chronic or acute.
While chronic anemia occurs over a long period
of time, acute anemia occurs quickly. We can
divide the main causes of anemia into three
broad groups: blood loss, lack of RBC production,
or a high rate of RBC destruction.
Iron deficiency anemia, which is caused by not
having enough of the mineral iron in your body,
is the most common type of anemia and the
most common form of nutritional deficiency
worldwide. Without adequate iron, your body
cannot produce enough hemoglobin. Vitamin
deficiency anemia is caused by insufficient
folate or vitamin B12, two nutrients needed for
adequate production of RBCs. Without these
nutrients, the body produces large, abnormal
16 | Celebrate Life
RBCs. B12 absorption can be impaired due to
lack of intrinsic factor in gastric secretions; this is
called pernicious anemia.
Crohn’s disease and other chronic inflammatory
diseases can cause chronic anemia by interfering
with RBC production. Erythropoietin, a hormone
produced by the kidneys, stimulates your
bone marrow to produce RBCs. A shortage
of this hormone caused by kidney failure and
chemotherapy can also lead to anemia. There
are several other types of anemia that include
aplastic, hemolytic, and sickle-cell anemia.
People who are at risk of developing anemia
include those with a diet poor in iron, protein,
and vitamins. Young children, vegetarians, and
menstruating women are generally at higher risk
of deficiency as well. In adults, the major cause
of iron deficiency is chronic gastrointestinal
blood loss. People with intestinal disorders such
as Crohn’s or celiac disease, or those who have
undergone intestinal surgical resections, are at
higher risk due to the potential of poor absorption
of nutrients in their small intestines due to a
reduced absorptive area. Other risk factors
include chronic diseases such as cancer or liver
failure, family history, infection, blood diseases,
certain medications, and alcohol dependence.
If you experience unexplained fatigue and are at
risk of anemia, you should consult your doctor.
Usually the first step in diagnosis is a complete
blood count, which among other values will
measure your RBC and hemoglobin levels.
Additional tests your doctor may order include
stool hemoglobin test, peripheral blood smear,
iron, transferrin (an iron transfer protein), TIBC (a
measurement of the blood’s capacity to bind iron
with transferrin), ferritin (the main cellular iron
storage protein), folate, B12, bilirubin and lead
levels, and a bone marrow biopsy. Your doctor
will also complete a physical exam and review
your medical history.
Some practitioners recommend that people
on long-term TPN should have iron studies
completed every three months during the first
year on TPN. If no issues are noted, yearly testing
is adequate. If deficiency is noted, treatment
should be initiated and testing should be done
every three to six months thereafter.
Treatment for anemia depends on the cause
of the deficiency. Iron deficiency anemia is
generally treated with oral supplementation. A
daily multivitamin containing iron or iron tablets
such as ferrous sulfate are generally prescribed,
depending on the degree of deficiency.
Management of iron deficiency for the TPN
population can be safely administered using
intravenous (IV) iron. Prior to the initial delivery
of iron, a test dose is generally administered in a
controlled setting (hospital, clinical, or infusion
suite) due to the potential of an adverse reaction
such as anaphylaxis. Because the addition of iron
to a lipid containing TPN solution can cause a
breakdown of the formula, iron is combined with
a lipid-free solution of TPN in the form of iron
dextran. Since routine provision of iron can lead
to iron overload, the common practice is to add
regular small doses, such as weekly injections, to
the TPN formula. Thus, it is common for someone
on TPN who requires iron supplementation
to have a regimen such as six days of a lipid
containing TPN (also known as a 3:1 formula)
followed by one day of a non-lipid containing
formula (also known as a 2:1 formula) with
supplemental iron dextran on day seven.
If blood loss is the underlying cause of iron
deficiency, then surgery may be required to
identify the source and correct the bleeding.
Pernicious anemia is treated with lifetime
monthly injections of vitamin B12 while
folic acid deficiency is treated with daily oral
supplementation. For those who receive TPN,
both of these nutrients can be added directly
to the TPN bag in the form of your daily multivitamin injection. People suffering with anemia
of chronic disease may require blood transfusions
or injections of synthetic erythropoietin.
Although anemia cannot be treated without
medical intervention, there are certain steps you
can take to keep it under control. These steps
include taking your prescribed medications
such as iron or vitamin supplements as directed
and following through with your treatments.
Although iron tablets are best absorbed on
an empty stomach, this may lead to stomach
upset and therefore it is typically taken with
food. It is also recommended to take an oral
iron supplement with a food containing vitamin
C such as orange juice or with a vitamin C
supplement for increased absorption. You should
also take it two hours before, or four hours after
any antacids, which can interfere with absorption.
Additionally, following a healthy and varied diet
that includes foods rich in folate, B12, and iron
and limiting alcohol use can prevent common
forms of anemia to occur. Foods that are rich in
iron, B12, and folate include red meat, poultry,
pork, seafood, eggs, iron-fortified cereals, breads
and pasta, beans, dark-green leafy vegetables,
nuts and seeds, and dried fruits.
Summer 2009 | 17
Clean, Safe Catheters (continued from page 11)
“aseptic technique.” Do not be afraid to correct
them if you see that their aseptic technique is
abnormal. This could be in the home, office, or
hospital setting. You are the best advocate for
the proper care and maintenance of your CVC.
during TPN hook-up, disconnect, and during
dressing changes; thorough hand washing; and
vigilance in monitoring healthcare professionals
who may also need to access your catheter,
assuring they follow aseptic procedures.
Thrombosis
References
Another frequent complication of CVCs is
occlusion (blockage). This is most commonly a
result of a thrombus (clot) within the catheter.
The flow rate through the catheter steadily
diminishes, and eventually fluid cannot be
infused and blood cannot be withdrawn
from the catheter.10 To treat CVC occlusion
the catheter should be flushed with saline or
heparin. If this does not relieve the occlusion,
then a tissue plasminogen activator (tPA) (a clot
buster drug) can be instilled and left to dwell
in the catheter for 30 to 120 minutes, however,
some protocols may call for tPA to dwell up to 12
hours. If the CVC blockage is due to medication
that had been infused through it, or precipitated
mineral salts or lipids from the TPN, then sodium
hydroxide, hydrochloric acid, or alcohol may
restore patency.11 Catheter-associated venous
thrombosis is more likely to occur when the
catheter tip is poorly positioned, such as in the
upper part of the superior vena cava.12
Conclusion
An increasing number of patients receive
TPN and require appropriate, safe prolonged
vascular access. Short-term complications
(during catheter insertion) are infrequent but
can be life threatening. Long-term complications
occur more often and can also be life threatening.
Good techniques during vascular access
insertion and proper care at home can help
reduce the incidence of complications. These
include aseptic management of the catheter
18 | Celebrate Life
1. Howard L, Hassan N. Home parenteral nutrition. 25 years later. Gastroenterol
Clin North Am, 1998; 27(2):481—512.
2. Steiger E. Home parenteral nutrition. Components, application, and
complications. Postgrad Med, 1984; 75(6):95—102.
3. Williams D, Rehm S, Tice A, Bradley J, Kind A, Craig W. Practice guidelines
for community-based parenteral anti-infective therapy. Clin Infect Dis, 1997;
25(4):787—801.
4. Plewa M, Ledrick D, Sferra JJ. Delayed tension pneumothorax complicating
central venous catheterization and positive pressure ventilation. Amer J Emerg
Med, 1995; 13(5):532—535.
5. de Jonge R, Polderman K, Gemke R. Central venous catheter use in the pediatric
patient: mechanical and infectious complications. Ped Crit Care Med, 2005;
6(3):329—339.
6. BCSH guidelines on the insertion and management of central venous lines. Brit
J Haematol, 1997;98(4):1041—1047.
7. Shah S, Smith M, Zaoutis T. Device-related infections in children. Ped Clin No
Amer, 2005;52(4):1189—1208.
8. Pearson M. Guidelines for prevention of intravascular device-related
complications. Hospital infection control practices advisory committee. Infect
Control Hospit Epidemiol, 1996:17(7):438—473.
9. Segarra-Newnham M, Martin-Cooper EM. Antibiotic lock technique: a review of
the literature. Ann Pharmacother 2005:39(2):311-318.
10. Dollery C, Sullivan I, Bauraind O, Bull C, Milla P. Thrombosis and embolism
in long term central venous access for parenteral nutrition. Lancet,
1994;344(8929):1043—1045.
11. Kerner, J. Treatment of Catheter Occlusion in Pediatric Patients. J Parent Entl
Nutr, 2006;30(1 Suppl):S1—S9.
12. Petersen J, Delaney J, Brakstad M, Rowbotham R, Bagley C. Silicone venous
access devices positioned with their tips high in the superior vena cava are more
likely to malfunction. Amer J Surge,
1999;178:38—41.
Strong Bones, Strong Body (continued from page 9)
Additional information regarding foods that are high in
calcium and vitamin D can be found at:
• http://ods.od.nih.gov/fact sheets/vitamind.asp
• www.niams.nih.gov/bone
• www.fda.gov
• www.eatright.org
For questions regarding medications, you can contact the
Food and Drug Administration at 888.INFO.FDA.
References
1. Consensus development conference: diagnosis, prophylaxis and treatment of osteoporosis. Am J Med.
1994; 94:646-650
2. Pironi L, Labate AM et al. Prevalence of bone disease in patients on home parenteral nutrition. Clin
Nutr. 2002; 21:289-296.
3. Cohen- Solal M, et al. Osteoporosis in patients on long-term home parenteral nutrition: a longitudinal
study. J Bone Mineral Res. 2003; 18: 1989-1994.
4. Holick MF. Vitamin D deficiency. N Engl J Med. Jul 19 2007; 357 (3): 266-81.
Nourish Summer/Fall Consumer
Conference Call Series
The Nourish Consumer Conference Call Series is a great way
to share, listen and learn about topics that affect TPN and tube
feeding nutrition consumers. You never have to leave your
home, and there is never a charge for participating. All calls are
held on the third Tuesday of each month at 7:00 p.m., Eastern.
To participate, simply follow these steps:
Call toll-free 866.418.5399, approximately five minutes
before the call begins
•
• Enter the access code 3036728726 when prompted
JUL 21
Good Hydration Knows No Season
Facts and tips on staying hydrated
through the summer and beyond
AUG 18
Small Steps to Big Steps –
Let’s Get Moving!
Developing your strength
and mobility
SEP 15
Small Steps to Big Steps –
Occupational Empowerment
Tips on successfully returning to
work, school, or volunteering
OCT 20
Small Steps to Big Steps –
Taking Control of Your Pain
A Q&A on controlling your pain
and related symptoms
Corner
By Linda Gravenstein, Coram Partner
Welcome to the first edition of the Advocacy
Corner. I have come to realize that most of what
I know about home TPN and tube feeding has
come from consumers much like you! Please
join me in sharing your tips, skills, ideas, and
successes that have helped you or your loved one
avoid therapy related complications. This is your
magazine and your experiences and thoughts
are welcome! To get things rolling, I will start with
a few of my own tips:
• Utilize the Oley Foundation and all of
their programs!
All of the services are free for consumers.
Visit www.oley.org or call 800.777.OLEY.
• Pay attention to your insurance benefits
and be proactive in resolving claims.
Often, miscommunication between the
provider and the insurance company can
cost you. If your claim does not look right,
then investigate. Your Coram team can
assist you in determining the infusion
claims that have been made.
• Keep track of your supplies.
Try keeping your oldest supplies in the
front; this can keep your costs down
by not having to discard out-of-date
supplies.
NOV 17
Small Steps to Big Steps –
Enjoying the Holidays
Social and emotional coping skills
for the holiday season
Now it is your turn to share your tips with us.
Email me at [email protected] or
call me toll-free at 866.446.6373. You may also
reach me at 281.376.9468.
Summer 2009 | 19
Consumer Contacts
Celebrate Life
877.WeNourish (877.936.6874)
To submit stories, comments and
suggestions for Celebrate Life:
To speak to a TPN or tube feeding
representative.
Email [email protected]
WeNourish.com
• General information about the Nourish
•
•
•
•
Nutrition Support Program™
Online narrated tutorials
and downloadable patient
education tools
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teleconferences
Consumer blog
Online archive of Celebrate
Life magazine
Consumer resource links
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• Local Coram branch maps and information
Coram Partner
To reach your dedicated consumer advocate:
Linda Gravenstein, Coram Partner
Toll-free 866.446.6373
Cell 281.376.9468
Email [email protected]
Conference Call Series
For questions regarding call times, topics, etc.:
Linda Gravenstein, Coram Partner
Toll-free 866.446.6373
Cell 281.376.9468
Email [email protected]
elebrateLife
For Home TPN and Tube Feeding Patients
1675 Broadway, Suite 900, Denver, Colorado 80202
© 2009 Coram, Inc. • Celebrate LIfe is a publication of Coram, Inc.