Randy Travis Gets an LVAD

 Recently, country music star Randy Travis was hospitalized with viral cardiomyopathy. Unlike reported previously, he did not undergo heart surgery. Randy received the Impella pump, a left ventricular assist device-LVAD. The Impella comes in several models, all of which are inserted percutaneously or minimally invasively through various arteries into the left ventricle.

The device is temporary, however, and is meant to allow the heart to rest and recover.

Theoretically, if the heart continues to worsen, the next step would be to receive a larger LV pump, which can be permanent or temporary, serving as a bridge to heart transplantation.

Viral cardiomyopathy is an episode of heart failure caused by the same viruses responsible for upper respiratory tract infection, gastrointestinal distress, and other common conditions.

About 40% of people with viral cardiomyopathy will experience spontaneous recovery," said Clyde Yancy, MD, chief of cardiology at Northwestern University in Chicago and a former president of the American Heart Association.

The rest of the July 10^th article can be found at this address Randy Travis LVAD

What's new in 2013

Hi everyone,
your faithful blog-master asking for any news or plans for the new year. Even past stories from 2012 would be of merit. Please send information for posting, including pictures, to transplant_foundation@yahoo.com.

Dash for Donation 2011

I have been a part of the Transplant Buddies group since 2007 but this is the first year I have been able to join in the fun that is the annual Dash for Donation. This is something I would recommend for anyone who would like to get a little exercise, fresh air and a great brunch. The other benefit is the money goes to help the ongoing campaign to raise awareness about organ donation. Here are some pics of the crew of others from our team. I missed getting pictures of many who were there. I think we should make it a goal to have our own team next year. Transplant Buddies represent!

Transportation Instructions for Filming

Attention Group Members and Teachers


We are moving our Education/ Support group to the Research Administration Building also known as the RAB building. This will be the new location for the next 13 groups beginning May 5, 2011. It will be for the purpose of filming and once that project is completed we will move back to our regular room. It is close to the Hospital but there is no parking near. You will need to valet park and catch the yellow campus van. It stops directly across from the hospital at 8:40 AM and 9AM. The valet parking staff will be happy to show you the stop. Thanks to the kindness of transportation services they will also make a separate trip to pick us up at 11:30AM.

This room is a lighter room with better acoustics and we were fortunate to get it. The door will close at 9:40 AM and the door will be marked “Filming in progress”. We will try to have some bottled water handy. This is very exciting as we hope to have the May filming on the blog at the end of May and add the new ones each month. Editing permitting.



See you in the movies!!!!! Susan

One Down, 14 To GO!

About 4 years ago, a patient waiting for a heart transplant decided to get into the Transplant Buddy process to see what it was all about. After attending the series and enjoying the education and fellowship a blog was born. The education sessions and other events have been posted to be available to those who could not attend. As time passed , it became obvious that the value of being "in the room" compared to the education materials alone. He uttered quietly "we should record these sessions and put them on the web." That has been set aside for a while as many other great developments have taken place but secretly, that utterance has put many wheels in motion. Susan has done the biggest part by working to get a budget and a service provider in place. We all know that nothing happens without a budget and Susan, after speaking with the tech support provider on campus and getting an estimate of what would be required, went to bat. Her first attempt put us a little tight with any edits or eventualities potential. Back to the well she went and returned with 2 and 1/2 times the original budget thanx to Christine Miller and the transplant department. This puts us in a very good position to produce a great series of presentations. Release forms have been passed and signed over the last 3 weeks as we inched ever closer to the big day. Last week, on 3/3/11, the recording began. To be there in Salt Lake City with that room full of patients, care-givers and educators was the realization of a dream. Lots of work ahead as we have many sessions to get recorded but having that first one in the can is awesome. Over the next 6 to 10 months, we will work to get the rest of the sessions recorded and then posted so they can be accessed by anyone in the world. This is the milestone I have anticipated for 3 years and I KNOW it is just the beginning.

Be good to each other,

 Tin Man

Friends of the Foundation

Hi all,
 You may have noticed that there is a new section down the right side of the blog. That is the Friends of the Foundation section. I created this to support those who have made donations to the help raise funds for the Transplant Buddy Foundation. The group so far is a collection of very talented and generous artisans who donated their works. Keep an eye out for new members as the friend list grows!!!!
 Be good to each other,
      Tin Man

Oh WHat a Day

Not only does prince William get engaged, but the video camera came today. Now we can proceed with the plan to get our sessions on the web. WOOHOO!!!!
   Tin Man

Craft Bazaar in Boise

SuperValu home office in Boise Idaho recently (10/25 -10/29) held a craft bazaar. The Transplant Buddy Foundation jumped on the opportunity to fundraise and displayed many of the craft items volunteers have donated over the past 2 years. Items included Christmas ornaments knitted and crocheted items and even a few quilts. (pictures below) Not the screaming success we had hoped for but we did raise $240 in the 8.5 hours of selling time during the week. Another fair is being held this coming weekend. A 1 day sale for 6 hours in Boise. We plan on displaying again in hopes of adding to that $240!!!! Wish me luck!
 Be good to each other,
   Tin Man

Somewhere in Atlanta…

Do you know where your transplant social worker is? Well, if it's Susan Gleason or Connie Jo Campbell then the answer is somewhere in Atlanta, Georgia. The pair are attending the 25th Annual International Conference of the Society for Transplant Social Workers. Susan and Connie Jo will be presenting our Transplant Buddy process to the conference, sharing our exceptional methods so others may benefit from what we, and those before us, have developed. We should all send prayers and good thoughts their way on Thursday morning- 11am Eastern time. That is when they will be presenting. More to come after they get back!!!!!!!


Be good to each other,

Tin Man

Concerts and Quilts

Keeping Miracles Alive!!!


That is the motto of the Transplant Buddy Foundation. On September 25th the foundation held this year's premier event, Concerts and Quilts, at Libby Gardner Hall. It was a great success as over 100 students and teachers from the Utah Music Teachers Association were able to perform at this beautiful venue. Students brought family and friends to the event as supporters and proudly took the stage to rousing ovations. Ticket sales brought in a great deal of money for the foundation. A great deal of thanks goes to Mary and Kirk Baggaley. Their efforts played a critical role in the organization of the concert. Additional thanks go out to all the members of the Utah Music Teachers Association for a wonderful day of music.

Meanwhile, out in the lobby, several volunteers arrived well before the event to set up and display the many quilts and other donated items for silent auction. Also available were door prizes including theater tickets and ski passes which would be won by lucky patrons who donated $1 per chance. Intermountain Donor Services was present to raise awareness and help get folks registered as organ donors. Browsing was brisk between performances and many items were sold by the end of the evening.

The evening performances featured some professional musicians. Rosalie Macmillan, an internationally acclaimed violinist, played with a collection of local players named the Salt Lake Soloists. It was a captivating performance that was enjoyed by all that remained. Following Rosalie was a local composer and pianist named Michael Hicks. His brother joined him for one of his songs on the oboe. Also a very enjoyable performance. The Foundation would like to thank all of the performers who donated their time and shared their wonderful talents to assist in our fundraising efforts.

Below are a slide show of some photos I took and links to some videos of Rosalie at the event. Hopefully there will be many more pics to come from parents and families.

http://www.youtube.com/watch?v=ESkx-3RNyHI&feature=related

http://www.youtube.com/watch?v=Jg3_TIQSoOU&videos=Cdkm2_SnW7Q&feature=BF

http://www.youtube.com/watch?v=Jg3_TIQSoOU&feature=related

More videos of Rosalie can be found at youtube.

News and Notes

Hi all,
 It's been a while since I have written more than a new class schedule. Tons of things have been going on this summer and since fall is here, we should get caught up.

Let's see... the blog is under a current remodeling. Per request of some of the users, the education session recaps have been placed in their own pages. Since they are repetitive by nature, there is no need to re post over and over. Now, click on the name of the session listed across the top of the home page, and you will be taken to a "page" dedicated to the specific topic. Updates will be done as materials change.

Our wonderful support program "THE TRANSPLANT BUDDY PROGRAM" will be presented at the National Conference of Transplant Social Workers (I think) in October by our own Susan Gleason and Connie Jo Campbell. Susan and Connie put together information and slides throughout the summer months. The final version was sent to Atlanta just last week. They both are very excited to have this opportunity to share a great program, which they and others have been developing over the years, with peers all across the country. Many thanks go out to all volunteers and professionals who have brought us to this point. Make us proud in Atlanta Susan and Connie!!!

Transplant Buddy Foundation- Lots happening here too. Concerts and Quilts event at Libby Gardner Hall is tomorrow, 9/25/10. Volunteers and others have been gathering quilts and other handmade goods for auction and sale at the event. We have a full schedule of 5 recitals starting at 10am and lasting all day. More to come post event when the proceeds have been counted. Thanx to all involved.

More later...
Be good to each other,
  Tin Man

It is with the greatest of sorrow...

We have lost one of our flock. Emily Roosevelt, post heart transplant patient from Park City, UT, has passed away. May we take solace in the great person she was, the spirit she carried and the privilege of having known her and her family. Please find detail at this link.
http://heart2heart4emily.blogspot.com/

Cardiac Transplant Gala

Cardiac Transplant Gala 2010

It was a packed house at the Little America Hotel in Downtown Salt Lake City on Saturday nite, 3/6/10. The reason, The Cardiac Transplant 25th Anniversary Gala. Patients, families, doctors, nurses and other important health care staff from the area hospitals mingled and reconnected. Stories were shared over a well prepared meal, new friends were made and several presentations were given. Among the highlites; nurses were recognized for their immense contribution to the transplant program, recipients were recognized including the first recipient transplanted in Utah and a moment of silence was observed for the donors. A great event for all involved and special thanks to our U of U coordinators, Shirley and Leann who were very involved in the organization and execution of the wonderful event.

The Transplant Fund

The Transplant Buddy Group has added a new purpose to its mission. Fundraising! A "Transplant Fund", for lack of a better name, has been created as part of the University Hospital Foundation. Money raised will be applied to this account and granted to transplant patients/families who may be in need of additional funding to defray the many costs associated with the process. This could be for Meds, travel/lodging or a myriad of other obligations. The goal is to never have to turn a patient away due to lack of funds or insurance coverage.

Dickens Festival
Come one, Come all to the Annual Dickens Festival/Craft Fair!!
Why? The Transplant Buddy Group will have a booth offering many different home-made items for sale for TWO DAYS ONLY (11/20-11/21). All proceeds will go to the Transplant Fund in the University Hospital Foundation.
Where: Utah State Fairgrounds
When: 11/20 and 11/21

**If you can't make the festival but would like to make a direct donation, please do so with a check written to the University Hospital Foundation with "Solid Organ Transplant" in the memo space. Send to Michelle McCardell at the University Medical Center.

Celebration Luncheon

On 9-3 a celebration luncheon was held for the transplant buddy group . It was a catered affair with a good turnout. Plenty of pre and post transplant buddies were in attendanc along with the professionals and volunteers who provide the education and care to the group. The celebration was a chance to thank the educators and volunteers as well as aknowledging the progress that has been made by the group as a whole. Certificates, plaques and Buddy thumbdrives were awarded to some of the volunteers and professioinals who have been instrumental in the groups development and new ventures in the works.

The results of the gathering were good fellowship, good food and good collaboration regarding our special projects team. This team is in the process of planning two fundraising events in the coming year. The money will be reserved for specific use in a transplant fund. As this is further developed, information will be made available here in the blog.

Pictures from the event are above. Enjoy.

Healthy Brunch Spring 09

April 9th marked the sping version of our semi-annual brunch. As it was close to Easter this year, the decoration theme was just that. These included a lavender table cloth, some yellow feathers, metallic eggs containing surprises and a few Easter baskets for centerpieces. Don't tell Priya, but we smuggled in some candy in the eggs and baskets, oh yeah she was there! Everyone there had a great time and shared some good food and stories with new friends and old.
Pics from the event are in the slideshow below.

\\\\\\\\\\\\\\\\\\\\\\\\\\\\\ Updates and News \\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\
-->Jean D is well enough to go back home to the ranch. We will miss her around here but we are also glad she is doing so well.
-->Emily has survived the biopsy trials and can look forward to non-invasive testing going foward.
-->The new schedule is out and posted in the sidebar on the right.
-->We have a new addition to the volunteer staff. Please help us welcome Monika to the team.
-->A feature section will be added in the near future to relay some of our stories.

Goodbye to a dear friend

It is with a heavy heart that I write this posting. This week, we lost a dear friend to the transplant buddie group. Annette Johnson, Jerry's wife and partner at House of Hope Healing, passed away after a long battle with cancer. The obituary is below and can be found In the Salt Lake Trib from today (2/25)

Annette Jane Gifford Johnson
Annette Jane Gifford Johnson 1964 ~ 2009 Surrounded by her loving family, Annette Jane Gifford Johnson died peacefully at home Sunday night, February 22, 2009, after a courageous 10 year battle with a brain tumor. She was born to Wayne and Bonnie Hunter Gifford, September 8, 1964 in Nyssa, Oregon. Shortly after her birth, the family moved to California, where she was diagnosed with a significant hearing loss. At the age of three she began attending the John Tracy Clinic - a school for the deaf in California. The family moved to Boise, Idaho in 1970 where Annette attended public school and graduated from Capital High School in 1983. She married Thurmond "Jerry" Johnson Jr. on June 11, 1990, in Boise, Idaho. Jerry and Annette moved to Michigan in 1991 so that Jerry could attend the University of Michigan to study medicine. Annette worked as a preschool teacher and home daycare provider as well as being a student at Eastern Michigan University. She helped the family through numerous major medical illnesses and faced all of these obstacles with courage and determination. She was diagnosed with a brain tumor in June of 1999 and had surgery and radiation at that time. The tumor was in remission until 2006 when it unfortunately reoccurred. Since that time, Annette faced many daily challenges. Even during the time of her own illness, she helped over 400 families in the past five years, providing medical housing and emotional support at The House of Hope and Healing, in Sandy, Utah that Jerry and Annette established together. Annette is survived by her husband, Thurmond "Jerry" Johnson Jr., MD, step-daughter Victoria (21), daughters Adrianna (19), and Cassandra (17), her mother and step-father, Lawrence and Bonnie Molt, her father and step-mother, Wayne and Melinda Gifford, sisters Connie Chimonas and Sherry (Ken) Fawcett, her brother Don Gifford (Cathy), step-sister Leanna Davis, step-brother Jon Molt (Lisa), grandparents, Gene and Olla Jane Rutan, and Norma Gifford as well as numerous uncles, aunts, cousins, nieces and nephews. She was preceded in death by her brother David, grandparents, Eldon Hunter, William Gifford, and Arthur and Marie Molt. A memorial service will be held Saturday, February 28, 2009, 2 p.m., at Hilltop United Methodist Church, 985 E. 10600 S., Sandy, UT. In her memory, donations may be made to the Annette Johnson Memorial Fund at any US Bank location to help with medical and funeral expenses.

Excercise and Transplant

Today's support meeting had a presentation on exercise and transplant by the wonderful folks at Pulmonary Rehab. The handout that was given is below. Feel free to send any follow up questions or concerns to my email and I willl work to get the answers.
Thanx again to Bill and his staff for taking the time to educate and help us.

Exercise and Chronic Lung and Heart Disease

The primary aim of exercise training is dependent on the individual’s goals. Common health and fitness benefits include:
· Increased muscle mass and/or tone
· Improvement in cardio-respiratory endurance
· Improvement in muscular strength and endurance
· Improvement in the immune system
· Reduction in risk of cardiovascular disease
· Reduction in risk of osteoporosis
· Increase in life expectancy
· Increased sense of well being

For the individual awaiting heart or lung transplantation, exercise training will improve functional capacity and help get through the surgery and onto the road to recovery optimally. Muscles that are “in shape” will allow you to get back on your feet after surgery.

The question is often asked, “Which is the best type of exercise?” The answer is fairly simple: Remember the goal is for exercise to be both safe and effective. So, pick an activity of the proper intensity and duration that you enjoy enough to perform regularly. Many activities in which we engage are stop-and-go in nature: yard work, gardening, housework, occupational activities, shopping, etc. Activities like bowling and golf, while recreational in nature, also fall into this category. While it is true that one can get fatigued from these types of activities, they are not a good choice for therapeutic exercise. You are encouraged to participate in all types of physical activity, but these low intensity stop-and-go activities should not be substituted for your regular exercise sessions of moderate to somewhat hard intensity.

The type of exercise that is most effective for most adults, especially those with chronic health issues, are activities such as walking, jogging, swimming, cycling, cross country skiing, in-line skating, stair stepping, aerobics classes, etc. These activities are aerobic in that they are continuous and the pace is one that is easily maintained for at least 20 to 30 minutes. One must choose the activities that are most appropriate, considering the level of exertion and the risk of injury that accompanies those activities. Sports we engage in as kids and young adults (football, basketball, soccer, tennis, etc.) are anaerobic. That is, they are stop-and-go in nature, but are of high intensity and therefore subject us to pushing our heart and muscles too hard.

Strength training with weights or Therabands can also be helpful in increasing metabolic rate (assisting with weight loss) in addition to strength.

A cardiopulmonary exercise test is the most accurate method of determining an exercise prescription. This is the amount of exercise that is both safe and effective for your needs. A target heart rate can then be determined according to that individual’s cardiopulmonary capacity and any drug side effects. An individual who undergoes heart transplantation will not have a target heart rate prescription because of the blunted heart rate response after transplant.

* Whether or not it is appropriate for you to exercise as you await transplantation should be determined by your physician.

Aerobic Exercise Prescription
Warm-up: _______________ for 3-5 minutes at an easy pace – one at which you feel you could go on indefinitely. (RPE of 1-2)

Conditioning: _______________ for _______ minutes. Exercise at a level which you consider to be moderate to somewhat hard (RPE of 3-4); healthier, more motivated individuals may even push to a level of hard (RPE of 5). It is reasonable to expect some shortness of breath, muscle fatigue, and even perspiration. Your target heart rate has been established as a range of _______ to _______ beats per minute. You may increase your duration by ____ min.(s) every ____ session(s) until you reach a goal of _______ min.(s)

Cool-down: _______________ at a very easy pace for 3-5 minutes before stopping.

The frequency of exercise needs to be a minimum of 3 times a week to be effective. A goal of 5-6 times a week is even more productive.

Fortunately, it’s not necessary to check your heart rate every time you exercise. Once you have experienced exercise at your target heart rate range, you can rely on your feelings of perceived exertion to determine exercise intensity. Simply ask the question, “How hard am I working?” on a scale of 1-10. Heart transplant patients will use this method to adhere to an exercise intensity that is appropriate.

Rating of Perceived Exertion
0 Nothing at all (Resting)
0.5 Very, very easy
1 Very easy
2 Easy
3 Moderate
4 Somewhat hard
5 Hard
6
7 Very hard
8
9
10 Very, very hard
Maximal