January & February 2006
Meeting Notices
Support Meetings:
-Weekly Mondays at 11:00 a.m. (no day meeting) on first Monday of month.
Evening meeting only at 7:00 p.m. on the first Monday of each month.
March 6th evening meeting, Kathleen from Home Spirometry
April 3rd evening meeting, Mark Johnson from LifeSource,
Caregivers Support Group:
-First Monday of the month at 6:00 p.m. prior to the regular support group.
Support Group Sioux Falls:
-Contact Jo Brouwer at or June Schnieder at
605-339-3067
IMPORTANT: The information provided in this newsletter is for educational purposes only, and it is not nor implied to be a substitute for professional medical advice. Always consult your own physician or healthcare provider with any questions you may have regarding a medical condition.
Transplants
We ended up with 42 transplants for the year 2005
Transplants for 2006
Steve Blake – d/l transplanted1/3/06
d/ transplant 1/9/06
d/l transplant 1/10/06
Michael Schmidt – d/l transplant 1/29/06
d/l transplant 1/30/06
Bobbi Ingram – s/l transplant 2/14/06
Bridget Schafer – s/l transplant 2/18/06
Hanna Olson – s/l transplant 2/18/06
Susan Stephenson – d/l transplant 2/22/06
d/l transplant 2/26/05
To-date there have been 10 lung transplants
Hope Chest News Mission Statement
To support and educate FairviewUniversityMedicalCenter patients and their families as they progress through the process of lung transplantation
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Website for newly-diagnosed IPF patients.
Congratulations To All
If there is not a number next to your name, please let us know and we can update your button. Some of the more recent transplants we do no have a number for. If you know the number of your transplant please let us know.
Marget cannot tell us due to privacy laws. If you don’t know, you can ask Marget. If you have had your transplant this year and are not listed below, please let us know and we will add you to the list. Thank you.
Bill Greising – or # 651-738-2954
Be sure to keep us informed of any changes in your address, your e-mail or lung status. Remember the hospital is not allowed to share with us any information about you. Also, for recent transplants, if you know your transplant number we can put that on your heart button. You need to get number from Marget.
If you have a story to share or questions, information etc., please contact Bill and Kathy Greising, editors of the HOPE CHEST NEWS.
Thank You For Your Support
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If you are hospitalized remember Marget cannot let us know. If you verbally tell her she still cannot tell us. It has to be in writing. If you are hospitalized or would like to let the support group know about your status, please call Bill or Kathy Greising at (651-738-2954).
NOTE:
Remember Marget has short-term parking passes for the group meetings if there is a financial problem paying for the parking. We don’t want you to stay away from the group meetings because of financial reasons.
NOTE:_____I do not wish to receive the newsletter
Bill Greising, 2000 Margaret St., St. Paul, MN 55119 - 651-738-2954
If you have any information from your state regarding prescriptions, insurance, travel, or any issues associated with transplantation that may be helpful to people in our group, please let us know so we can put it in the newsletter
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Caringbridge.org website is a free online service to keep friends and family – your caring community – in touch and informed during important life events, including medical treatment, childbirth or adoption.
Web site for Transplant Book:
Information on Allocation for Lung recipients can go the website doc
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New Lung Allocation Score Calculator:
Accessed at the "Resources" tab, there is a drop-down menu, select "LAS Calculator" from the drop down.
Assistance Available
Hope Chest News is dedicated to providing emergency financial assistance to FUMC Lung Transplant waiters and recipients and their families as a consequence of their medical conditions.
Our resources are limited. Marget Schmidtke (the lung transplant social worker) is the contact person for this fund. Persons requiring assistance should contact Marget at 612-273-5796 or1-800-478-5864.
Donations
Any donations made to Hope Chest News will be used to either defray the costs of producing and mailing the newsletter or will be used to provide financial assistance to other FUMC lung transplant patients and waiters. Proceeds from the sale of the cookbook and other items will also be used in this manner. Hope Chest News is a 501(c)(3) charitable organization and all donations are tax deductible.
Please keep us in mind when you are making Honorariums, Memorials, or wish to make a tax deductible charitable donation. All donations should be made out to Hope Chest News and mailed to: Judy Vermeulen, 796 Regent Drive, Shakopee, MN 55379-8261.
Fund Raiser Items For Sale
Cookbooks are available at a cost of $15.00 each ($10.00 is tax deductible). They contain many great recipes from your transplant friends. Please contact Judy Vermeulen for cookbook orders.
We are also selling the following items which are decorated with our logo:
Tote bags - $15.00Jackets - $35.00Water bottles - $8.00.
Let Ray or Eileen Vierow know if you are interested in purchasing any of these items. Their phone number is 651-483-3146 or email them at . All money collected for these items goes directly to Hope Chest News.
Board Meetings
The Hope Chest News board meets the third Monday of the month in the 8th floor conference room in the luncheon area from 12:30 to 3:00. This is the “Bridges” Conference room. Anyone is welcome to join us.
If you have any suggestions you would like to make to improve our organization or services to you, please contact any of your board members listed below or come to one of our board meetings.
Board Members
Harriette Wock, PresidentKip Peterson, Vice President
Barb Peterson, Secretary
Judy Vermeulen, Treasurer
Kathy Greising, Co-Editor, Newsletter
Bill Greising, Co-Editor, Newsletter
Jan Ankeny
Gary Broberg
Hinda Litman / 651-439-1808
952-431-8442
952-431-8442
952-445-2497
651-738-2854
651-738-2854
612-868-6482 /
Frank Vermeulen / 952-445-2497 /
Eileen Vierow / 651-483-3146 /
Ray Vierow / 651-483-3146 /
ANNUAL BOARD MEETING
The Annual Board Meeting will be heldJuly 17, 2006, 1:15 pm in the Bridges Conference Room, 8thFloorUniversityMedCenter, Fairview.
We encourage all to attend.
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Our Website: please visit our new Website at
News from the Board
Congratulations and Thank you to Gary Broberg for volunteering to assume the board position which was recently left vacant.
Discussions continue regarding fund raising activities. Anyone who would like to become active and volunteer some time “brain storming” should contact Hinda Litman or one of the other board members. If you can’t make it to a meeting, send us an email at . We need some activity which will call attention to our needs and mission. We would like to do more for patients in need, but are constrained financially. The hope would be to have an annual event that would raise awareness and funds for our organization.
Judy Vermeulen has suggested that we begin a “mentorship” program for new evaluees/transplant recipients. Kick off for this program is slated for late spring/early summer. If you are interested in becoming a “mentor” or feel like you could use some “mentoring”, please send an email to or contact Judy Vermeulen. Mentors will be requested to stay in contact with their “mentoree”, and be a resource for the new patient, hopefully providing insight into the transplant experience and tips on staying healthy after transplant.
The following article originally appeared in the current issue of The Pulmonary Paper. It was submitted by Kip Peterson. To subscribe to The Pulmonary Paper which is printed bi-monthly, or to view more information on this non-profit, please visit their website at
New to Oxygen
SUPPLEMENTAL OXYGENHow to deal with it, what equipment is available, what your rights are, what your provider won’t tell you, and helpful hints: a patient’s viewpoint.
If your doctor recommends that you have supplemental oxygen, it is not the end of the world, it is a new beginning. ‘On oxygen,’ you will feel better and will be able to do things that previously left you breathless and exhausted. ‘Oxygen Bars’ are the latest craze, with people flocking to them for expensive hits of the miracle air to cure everything from fatigue to hangovers, so try to think of it as having your own personal Oxygen Bar or, as a doctor once told me, ‘The price you pay for living in paradise’
It is natural to feel nervous and upset when entering this new way of life, which often occurs at a time when you feel the least able to cope with it. Suddenly your home is full of potentially explosive devices, plastic tubing, cannulas, a whole new vocabulary you have to learn, and you’re facing ‘life on a leash’ life on the tether--and who wouldn’t panic. I know I did.
In retrospect, as I enter my fifth year on oxygen, one of the most helpful pieces of advice I received came from a nurse in Grand Junction, who told me, ‘It isn’t rocket science. If your oxygen levels are low, turn it up. If they’re high, turn it down.’ It is important to learn the basics about oxygen, and to demystify the equipment by finding out as much about it as quickly as you can absorb the information, and then to take it a step farther by finding out what else is available and how to get it.
THE BASIC EQUIPMENT
The concentrator. This is a machine that runs on electricity and manufactures oxygen out of the air. This is the instrument of choice of your oxygen providers because it is virtually maintenance-free and the oxygen is free. The advantage for you is that the concentrator will run forever as long as there isn’t a (disadvantage) power shortage. For car travel, smaller models are available that plug into cigarette lighters. The disadvantage is that if you go out and about you will be dependent on heavy, short-lasting metal tanks of compressed oxygen for your portable tanks. Another disadvantage is that the concentrator is noisy - put it on towels and enclose it in a closet or bathroom. If you are only on oxygen at night, the concentrator is a good option, but if you need oxygen all the time and are active or work, it’s a bad option.
Compressed oxygen. This comes in metal canisters of varying sizes, resembling propane gas tanks. The canisters are operated by a gauge that regulates the amount of flow. An advantage is that these tanks are reliable, and you can accurately tell how much oxygen you have left. The disadvantages are that the tanks are heavy and last only a short time. If you are on a concentrator at home, you will be supplied with these tanks; otherwise, you will only need them for travel.
Liquid oxygen. Liquid oxygen, or LOX, is rapidly becoming the delivery system of choice for patients, though it is a thorn in the side of the oxygen providers because it is more expensive for them and they have to refill the tanks every week or two. The advantages of LOX are that the tanks are silent, and you have many more options for portable units, which you fill from the mother tank in your home. A disadvantage is that liquid oxygen ‘leaks.’ If you fill a portable tank in the morning, and turn it off when it’s half-full, it will be empty the next day, whereas when tanks of compressed oxygen are turned off, they’re off. The biggest advantage is that the portable liquid oxygen tanks are lighter and last longer. To get liquid oxygen, your doctor must specifically prescribe it. Portable tanks come in two sizes, lasting 3 to 6 hours at 2LPM; they are equivalent in weight and cumbersomeness to the compressed air tanks, and are less reliable, but they last longer.
HELIOS. I don’t pretend not to be prejudiced about Helios, because it dramatically changed my life. This is a liquid oxygen delivery unit that weighs 2.5 pounds full and lasts for 10 hours at 2LPM. You can carry it like a purse, wear it in their optional hip pack, or buy a backpack (the Camelbak Blowfish backpack fits it perfectly and is well-ventilated) for it. It can be filled from any liquid oxygen mother tank. A disadvantage is that since this is an intermittent flow system that only releases oxygen on the inhale (which is why it lasts so long), it makes an audible puffing sound whenever you breathe in. Another disadvantage is that Helios units are often not covered by insurance and, being still in the developmental stage, are somewhat unpredictable, and take several weeks for repairs, so you should buy two of them, one for backup. But if you’re going to be on oxygen for a long time or for ‘the duration,’ you should sell your grandmother’s pearls to get Helios - it’s worth it.
When I got out of the hospital, I was a mental and physical dishrag, and, thanks to the foresight of my doctor, came home to both a concentrator and a large liquid oxygen tank, so I had the best of both worlds, but didn’t know a thing about either one of them. It is not intentional omission, but more a matter of everyone assuming, including you, that you have been properly ‘educated.’ When asked if you have any questions, you don’t know that there is anything else to find out.
As an example, I had been left with a large, unwieldy ‘portable’ tank to be filled from my liquid oxygen tank. At this point I was barely able to totter to appointments with doctors and the hospital. My first encounter with this tank came when I naively thought that since I was only going to be gone for an hour for a short medical visit, I only needed to put a small amount of oxygen into the tank. The ensuing Episode; running out of gas in the doctor’s waiting room, nurses scrambling to locate an oxygen canister, I in a panic ’taught me my first lesson the hard way: always completely fill the tank.
For several months I carried that tank around with a strap that cut into my shoulder and one day, up at the hospital for tests, I was bitching about it and someone said, ‘Why aren’t you using your cart’’ Cart’ What cart’ I called my oxygen suppliers, who said, ‘You didn’t get a cart’’ and promptly delivered a lightweight cart designed to hold the tank.
I dragged the cart around for the next year and one day, when my oxygen supplier was filling my mother LOX tanks (by then I had two), I was bitching about the cart, which snagged on EVERY thing, and he said, ‘They do make backpacks for these tanks. Your insurance won’t cover it, but I could get you a used one for 40 bucks.’ ‘Bring it on,’ I said, and again, my life improved. A few weeks later he asked how I was liking the backpack and I said it was light years better than the cart, but I wished they made smaller, lighter tanks. ‘They do ‘there’s one half this size, but it only lasts for three hours.’ Three hours, as it happened, was perfect for my situation. I was then working two hours each morning and afternoon, with a two-hour lie-down at my home five minutes away. I got the little tank and thought that life couldn’t get much better until Helios, which was just getting off the drawing board and into the market place, radically changed my life.
Still, the learning process goes on. It was only a few months ago that I found out that cannulas (the plastic bridles with prongs up your nose) come in both 4’ and 7’ lengths I had only been supplied with the 7’ models. Since I am 5’ tall, the plastic connectors between the 7’ cannulas and the tubing to my mother tank had ample opportunity to snag themselves on various obstacles in my house, primarily the corner of my refrigerator. The simple substitution of a 4’ cannula eliminated a four-year hassle.
OTHER EQUIPMENT
Connectors. Speaking of those plastic connectors, oxygen patients need to know that while there probably a 25c difference in the cost, there is a world of difference between connectors that swivel and connectors that don’t. If you have ‘solid’ connectors, your tubing will tie itself up in knots, requiring daily unraveling and, untended, can compromise your oxygen flows. Always ask for swivels.
Pulse Oximeters. When I relapsed and was flown back to the hospital for another three expensive weeks, my insurance company decided that it would be in their best interest for me to have an oximeter on hand. Oximeters are devices which measure your oxygen level and heart rate when you put a finger into them are relatively new on the market and four years ago cost over $1,000. *AlphaNet Inc.* has one available for $199) Mine is clumsy and already antiquated, but trim models are now available on the internet (go to Google, enter ‘pulse oximeter’) at less than half that price, and every oxygen patient should have one. It is short-sighted of insurance companies not to insist upon it, since they’d save more by eliminating emergency room visits and flights for life than they would spend on oximeters. There is nothing so reassuring, when feeling ‘weird,’ as putting your finger into an oximeter and getting a reading in the 90’s, where it’s supposed to be. WHEW! And if you’re in the low 80’s, you’ll know to call for help instead of waiting until you land in the hospital in the 60’s.