A little bit about what we learn and how we share that knowledge.
2011 Meeting Notes
July 10, 2011 Merle is still recouping from her extended stay in the hospital so Janice was gracious enough to run the meeting. Welcome and confidentiality statement was read and a moment of silence was held for those in the PH community who now have their wings.
Introduction of clinicians and those from industry. A thank you to LungRx for providing lunch for the day.
July 10, 2011 Merle is still recouping from her extended stay in the hospital so Janice was gracious enough to run the meeting. Welcome and confidentiality statement was read and a moment of silence was held for those in the PH community who now have their wings.
Introduction of clinicians and those from industry. A thank you to LungRx for providing lunch for the day.
Announcements:
- On the Road – June 11th in Pittsburgh, was a great success and I’m so glad many of you were able to attend.
- Rick had his double lung transplant in May and is doing well
- Tickets are now available for the Afghan of Hope $3 each 2 $5 – 6 for $10 If you can get phriends and phamily and write their name down on a piece of paper for the drawing in Nov (if I don’t make the meeting with the tickets)
- Walk for Ellie raised almost $32,000. Leah raised about $5000. in memory of her Mom, Amy, who was a member of our group. Leah and Jon spoke at our last meeting.
- On August 16th, UT will sponsor a dinner meeting from 6:30 to 8:30 at the Blue Canyon Kitchen and Tavern (The Lodge) 8960 Wilcox Dr., Twinsburg, OH 44087 Complimentary valet parking is available. Space is limit so make your reservation early. Call Jennifer Roe at 866-495-5053
- 5th Annual Walk & Roll this September 10th - to raise funds for Research/Awareness. Save your loose change and put it in a jar or a dollar or two a week. Ask a friend/phriend for a donation. Ask10 people for $10 = $100 or 20 friends for $5. = $100
- Our September meeting which was scheduled for the 24th had to be cancelled because of a commitment the Library has. It is rescheduled for October 8th
- The November meeting at the Cleveland Clinic Summit will be November 6th thru the 8th, at this time I’m not sure which day is scheduled for patients.
- The PH Research and Education Act of 2011 is now out in both the Senate as S 775 and in the House as HR 1810 (the HR bill was introduced on May 10th) Please call your Senators and Congress folks to co-sponsor these bills
· Our next meeting – note date and time: October 8th, back on Saturday and at 1 p.m.
Janice introduced Nancy Bair a ph nurse specialist at the Cleveland Clinic
CAREGIVER: Novice to Expert
Nancy D. Bair, RN, CNS-BC
Cleveland Clinic – Respiratory Institute
Understanding your role
Not everyone is a nurse
Role reversal
Determine who is taking care of what and whom
Recognize that these roles may change in time
Take the ball and run with it
Recognizing Signs of Stress
Fatigue
Feeling overwhelmed and irritable
Feeling sad, resentful
Physical signs—weight loss, change in sleep habits
Losing interest in activities you used to enjoy
Anxiety and Depression
In PH patients: 35% of PH patients are in this category
Nearly 16% have major depressive disorders
Over 10% have panic attacks
Less than 25% of patients are treated
Mental and Emotional Effects of Caregiving
Depression appears to be the most common psychological disorders
20% to 50% of caregivers report depressive disorder or symptoms
The higher levels of depression are mostly attributed to people caring for individual with dementia
Studies show that 30% to 40% of dementia caregivers suffer from depression and emotional stress
Selected Caregiver Statistics – http://www.caregiver.org/caregiver
Normal Reaction
Don’t be ashamed of your feelings
Don’t feel as if you have to do everything
Don’t be too hard on yourself
Think what you have accomplished – not what you haven’t
Support
Accept help
Information is a valuable tool
Be proactive
Join support group
Stay connected
PCP/Counselor – talk with them
Talk to your loved one’s physicians/ph nurse
Journaling – can be a comfort
Do Something for “YOU”
Tell Yourself: There will be better days
Celebrate – however you can
Bask in the sunshine
Think of beautiful places
Build a sandcastle
Take a walk with a friend
Marvel at the miracles in front of us everyday
Questions and answers followed along with our chat and snack time.
Do to a conflict with the Library the September was cancelled -- and renovations during October cancelled that meeting
DON'T FORGET THE CCF SUMMIT 11-6-11 ~~~ SEE YOU DECEMBER 1ST in Twinsburg
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May meeting notes to come
May meeting notes to come
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March 12, 2011- Cleveland Area PH Support Group Meeting
Welcome by Merle, the confidentiality statement was read; and a moment of silence was held for those who now have their wings.
Introduction of clinicians and those in industry. A thank you to United Therapeutics for providing lunch.
Announcements:
April 9, 2011 the Ellie Godina Memorial Walk 10 a.m. Euclid High School – a fund raiser
May 15, 2011 Running Phor Amy – her daughter and son and others – a fund raiser
June 4, 2011 – HEART Ballet at the Byham Theater in PGH – a fund raiser
June 11, 2011 – PHA On the Road; a mini conference – it’s free; at PGH Airport, registration required. Go to PHAssociation.org to register
Envelope of Hope Questionnaire was handed out to be returned to PHA
Tickets available for the Lapghan of Hope
5th Annual Walk & Roll September 10th at Akron State Park
FDA has approved a new drug for Lupus – Bealysta
HR 1030 did not pass; as soon as a new bill is out we will need to start again contacting our Reps
Next meeting: May 14, 2011 with Dr. Robert Schilz – PH, Asthma or Both…
Merle introduced Dr. Michaela Aldred who is an Assistant Professor in the Genomic Medicine Institute, an Assistant Professor in the Department of Genetics at Case Western Reserve University School of Medicine and a member of the Taussig Cancer Center. Her research interests are in pulmonary hypertension and cancer.
PH and Genetics – What’s the Connection and What’s New
DNA is in all the cells of our bodies except the red blood cells. We can see chromosomes but can’t see the DNA. Chromosomes are how DNA is organized or the genetic code for DNA is organized into chromosomes – 46 total or 23 from each parent
The DNA code is made up of 4 letters (A, G, T and C) that are read in groups of 3 such as AGC, CTC, TTC, GAT etc – together, these 3-letter “words” make up the instructions for a protein. And each set of instructions is called a gene.
Genome – the Book of Life; is a recipe book of instructions to make the protein our bodies need. Chromosomes are like a chapter of a book. Genes are the recipe for one protein. DNA – the letters on the page, each group of three letters makes a “word”.
A mutation is a mistake in the genetic code. There are 3 ways it may occur.
1.A letter may be changed (spelling error). The end result is when you cook you end up with a product but it isn’t the same and as if you use a different ingredient: ie if you use malt for salt; or pea for tea – only one letter is changed but they are very different AGC, CTC, TTC, GAT mutated to AGC, TCT, TCG, AT
A letter may be changed (spelling error). The end result is when you cook you end up with a product but it isn’t the same and as if you use a different ingredient: ie if you use malt for salt; or pea for tea – only one letter is changed but they are very different AGC, CTC, TTC, GAT mutated to AGC, TCT, TCG, AT2.A letter may be lost or missing (nonsense). It wouldn’t make any sense so it doesn’t know what to do. Such as the directions say “mix egg and milk then add to flour” and it’s changed to “mix ega ndm ilkt hena ddt of lour”.
A letter may be lost or missing (nonsense). It wouldn’t make any sense so it doesn’t know what to do. Such as the directions say “mix egg and milk then add to flour” and it’s changed to “mix ega ndm ilkt hena ddt of lour”.3.There are no letters – the whole gene is missing. It is like a page fell out of the recipe book or the dog ate that recipe. So you have nothing to follow and you make the wrong thing. No gene – no protein.
There are no letters – the whole gene is missing. It is like a page fell out of the recipe book or the dog ate that recipe. So you have nothing to follow and you make the wrong thing. No gene – no protein.Familial PH
•In a small proportion of cases, more than one member of a family has PH.
In a small proportion of cases, more than one member of a family has PH.•Genetic studies of PH families identified two genes: BMPR2 and SMAD9
Genetic studies of PH families identified two genes: BMPR2 and SMAD9•In families where PH occurs with another rare disease – hereditary hemorrhagic telangiectasia (HHT) – the genes ALK1 or endoglin are altered
In families where PH occurs with another rare disease – hereditary hemorrhagic telangiectasia (HHT) – the genes ALK1 or endoglin are alteredThey (Chromosome 2 BMPR2 and SMAD9 Chromosome 13) are like members of a relay team
•They receive a signal (the baton), then pass it on within the cell or to the next member.
They receive a signal (the baton), then pass it on within the cell or to the next member.•The end result is that the cell knows whether or not to proliferate.
The end result is that the cell knows whether or not to proliferate.•If a member of the team is injured (a mutation) this process stalls, leading to changes in the lung vessels. Possibly lung cell growth is too fast in PH.
If a member of the team is injured (a mutation) this process stalls, leading to changes in the lung vessels. Possibly lung cell growth is too fast in PH. Non - inherited genetic changes.
Now studying genetic changes in lung cells of patients who have had a lung transplant; those that do and do not have PH. They are finding there are some genetic changes that are not inherited but occur only in the lungs. They are finding changes happen in 1 of 3 cases and are looking to see how this might contribute to PH.
Questions and Answers followed
Endothelial cells are wider in PH patients – touch blood in vessel
Someone may not have PH but have changes in their lungs that are leading up to PH.
She showed the chromosomes of a patient who had lost chromosome 13 and 20% of those cells had lost chromosome 13 completely.
Dr. Aldred showed another patient’s chromosomes where the middle of chromosome 13 was lost so it was shorter in length. It still had the end parts but the middle was lower and was omitted and the two end parts were joined together.
It was noted that woman are more likely to get PH than men and it is not understood why at this time. BMPR2 mutations are identified in up to one fourth (25%) of idiopathic cases.
Each child has a 50% chance of inheriting the mutation. If they do have the mutation, their chance of developing PH averages about 20%. If they didn’t inherit the mutation, their risk of getting PH is the same as the general population (i.e. very low).
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2010 Meeting Notes
The meeting for Decenber 4, 2010 ~ Merle read the confidentiality statement and a moment of silence was held for those who are no longer suffering. She read all those who have passed on this past year: December of last year: Beverly Staltari; in January: Marlene Kersman; in June: Daniel Terriaco; July: Cheryl Arnett and in September: Mary Saum. Yesterday, Dave Stamp called to let her know that Amy passed away this past Wednesday. Amy and her daughter Leah were at our summer meeting – she has been in the hospital most of this school year. Amy was a biology teacher and about 18 months ago she received her Masters degree. Dave mentioned he would ask Amy to slow down some and finally realized she needed to keep on going. Dave mentioned donations can be made in her name to PHA
Introduction of clinicians and pharmaceutical reps and a thank you to CuraScript for sponsoring our luncheon of the day.
Introduction of clinicians and pharmaceutical reps and a thank you to CuraScript for sponsoring our luncheon of the day.
Announcements: Les Pollack is still in the nursing home; PHA has a new name for their Help Line -- now called the PHA Support Line 1 800 748-7274. The Support Line volunteers provide information; contact point of a nearby PH clinician or support group, they really want patients and caregivers to know that a Phriend is only a phone call away. • On November 19th, CCF had their 6th Annual Summit, A practical approach to evaluation and management ~~ Zahi Kakish won the afghan • And Dorothy gave me a good pointer – she has one of those life alarms (around your neck or wrist) she also wears a coaches whistle… for at home, when at the other end of the house if you should fall and you have a caregiver/spouse – restaurant etc. •It was mentioned that HR 1030 and S 2803 may not make it this time around :o(
At our September meeting Dr. Thomas Gildea spoke to us on: “Lung Transplantation: the process –> the procedure – the Why, When and How”
There are several criteria that determine the need to consider lung transplants.
The transplant patient must be sick enough to require a transplant but well enough to survive one. Notes to be posted soon.
Our presentation for the day:
There are several criteria that determine the need to consider lung transplants.
The transplant patient must be sick enough to require a transplant but well enough to survive one. Notes to be posted soon.
Our presentation for the day:
What do our doctors expect from us?
Dr. Robert Schilz ~ Medical Director of Lung and Pulmonary Vascular Disease - University Hospitals Case Med
Dr. Robert Schilz ~ Medical Director of Lung and Pulmonary Vascular Disease - University Hospitals Case Med
ical Center – told us what our doctors expect.
Many of us know what we want to ask or expect from our doctors ~
What do they expect from us?
What do they expect from us?
• It’s not always what we think the doctors or nurses want to know or hear from us, it’s also how we feel. Those “numbers” are important but how we feel is more important
o Have an honest communication – tell the doctor (health care team) what is going on not necessarily what we think they want to hear
o What are our expectations
o Are there challenges – ask and tell
o Trust and needs go both ways – Beliefs, Ethical Standards, Trust and Expectations
We need to trust our health care team – they also need to be able to trust us
• In 1990 a law called the Self Determination Act influenced how doctors could act. This act gave patients the right to turn down care, participate in a plan for their healthcare, and determine in advance health care directives (i.e. Life support). This has led to increased consumerism and increasing insurance involvement.
• There is increasing pressure on physicians to make decisions about time spent with patients as it influences the amount the doctor is reimbursed per hour.
• There are national guidelines for doctors.
o Have an honest communication – tell the doctor (health care team) what is going on not necessarily what we think they want to hearo What are our expectationso Are there challenges – ask and tello Trust and needs go both ways – Beliefs, Ethical Standards, Trust and Expectations We need to trust our health care team – they also need to be able to trust us• In 1990 a law called the Self Determination Act influenced how doctors could act. This act gave patients the right to turn down care, participate in a plan for their healthcare, and determine in advance health care directives (i.e. Life support). This has led to increased consumerism and increasing insurance involvement.
• There is increasing pressure on physicians to make decisions about time spent with patients as it influences the amount the doctor is reimbursed per hour.
• There are national guidelines for doctors.
Outcome
o Are we satisfied, do we trust the interaction between the doctor and the patiento Are we both adhering to the programLegal Issues
o Access to medical informationo What if any restrictions applyo Blood tests and others (echo, PFT’s) – prior to appointment• Self determination of healthcare
o Increasing consumerism – is it creating a problemo Increasing insurance involvement – managed health careo Increasing pressure on physicians and reimbursement to themo Increasing physician distrust – sensctioclization of medical errorsWhat involvement do we each expect?
• What physician involvement do you expecto Who makes the decisions – do you have a parent/child relationshipo Who has/is the authority figure Years ago the doctor told you – you did it• Remember those TV Drs. Kildare, Ben Casey and Marcus Welby• Now think about Grey’s Anatomy and HOUSE• These were all portrayed differently as time evolved to represent how patient physician relationships have as well. We were dictated by our physicians• Collaborative relationship ~ preferred by most doctors
o Now the patient knows more – asks more – is involved moreo The patient and the doctor listen to and are talking to each othero Sometimes the doctor needs to “re-phrase” to understand what the patient is saying and v/vSoooo, we are expected to show up at our appointments with
o Honest reporting of how we are ~ honest communication
o We need to be involved with our health care
o Let the doctor/nurse know if our medicine isn’t working as expected
o Families need to be involved with your care and be familiar with the health care team.
o Utilize the health care team to assist in reaching your goals to obtain optimal health care
o Are we willing to help with research and are we eligible
o Do we smoke and if so how much – and we all know we shouldn’t
o Are we having any side effects ~ we might need to keep a journal
o Too much fluid retention
Is our fluid intake restricted
o Are we following a low sodium diet
o Too large a meal (holiday) – could we, should we use smaller plate size
It might take an extra day or two to lose those extra holiday pounds
o Are we taking our medicines according to plan ~ adherence to therapy – follow advice given
o Could the kidneys, heart or ph be compromised
o Did we have our pre-testings before doctors appointment
o Ask what the tests are for and what are the results
o Do you understand the test results and do you know why you are having them
o Call and ask for results if the doctor doesn’t call you (phone works both ways)
o Some doctors do not use email – again phone works both ways
o We need to tell about other medical problems and other medicines
o Bring a complete list of all meds, dosage, times taken, frequency
o Know what you are taking and what it is for
Do not refer to medications as “that little yellow pill”
o Do we need to have other doctors involved – pap smear, colonoscopy, etc.
o Ability to work with ancillary physicians
Cardiologist; Rheumatologist; PCP for colds, flu, shots
o Be sure to ask questions
o The doctor sets the course we are to follow
o Tell the doctor when something changes – do not wait for the next appointment
o Let the ph team be the judge of how serious your symptoms/questions are
o Ask the doctor if he/she uses email – and the phone works both ways
oBring a list of questions to the appointment and wait for answers
o Are we willing to be involved
o Education – we need to learn as much as possible about PAH
o Appointment – be prepared – have a complete list of medicines
Any needed refills required
o Honest reporting of how we are ~ honest communication
o We need to be involved with our health careo Let the doctor/nurse know if our medicine isn’t working as expectedo Families need to be involved with your care and be familiar with the health care team. o Utilize the health care team to assist in reaching your goals to obtain optimal health careo Are we willing to help with research and are we eligibleo Do we smoke and if so how much – and we all know we shouldn’to Are we having any side effects ~ we might need to keep a journal
o Too much fluid retention Is our fluid intake restrictedo Are we following a low sodium dieto Too large a meal (holiday) – could we, should we use smaller plate size It might take an extra day or two to lose those extra holiday poundso Are we taking our medicines according to plan ~ adherence to therapy – follow advice given
o Could the kidneys, heart or ph be compromisedo Did we have our pre-testings before doctors appointment
o Ask what the tests are for and what are the resultso Do you understand the test results and do you know why you are having themo Call and ask for results if the doctor doesn’t call you (phone works both ways)o Some doctors do not use email – again phone works both wayso We need to tell about other medical problems and other medicines
o Bring a complete list of all meds, dosage, times taken, frequencyo Know what you are taking and what it is for Do not refer to medications as “that little yellow pill”o Do we need to have other doctors involved – pap smear, colonoscopy, etc.
o Ability to work with ancillary physiciansCardiologist; Rheumatologist; PCP for colds, flu, shotso Be sure to ask questions
o The doctor sets the course we are to followo Tell the doctor when something changes – do not wait for the next appointmento Let the ph team be the judge of how serious your symptoms/questions areo Ask the doctor if he/she uses email – and the phone works both waysoBring a list of questions to the appointment and wait for answerso Are we willing to be involved
o Education – we need to learn as much as possible about PAHo Appointment – be prepared – have a complete list of medicines Any needed refills requiredAre you will to help with research if you are eligibleo Mirror the kind of relationship you wish to establish with your PAH team
o Report all – have honest communication
Do you understand what the doctor is saying – does the doctor or nurse understand what you are saying. This is where it becomes a two way communication. Are we sending and receiving the same message
Talking to your health care providers will
o Provide information -- not only to the doctor but also to the patient
o Make sure you let the doctor/nurse know of any major event or problem
oDo not wait until next appoint and don’t make it an “oh by the way”o Be sure to ask questions
o Take the information home with you
o Best to bring someone along with you to appointmentso Follow up if needed
o Interaction can be by phone and between visitso Report symptoms or problems in a timely mannero The phone works both ways – you do not always have to wait for the doctor to call youo Mirror the kind of relationship you wish to establish with your health care team
o What do you expect from themo What do they expect from youAfter the presentation Merle had additional announcements: This Holiday Season remember Red, Green and Gold – about foods - red foods (strawberries, raspberries, tomatoes, pomegranates contain antioxidants), green foods (also contain antioxidants-help immune system and both help blood flow) , and golden (nuts which are brain and mood food).
UT has a trial for those who are NOT on IV meds. The Freedom Study. To let you know about the recent launch of www.pahstudy.com/advocacy , an online resource for patients with pulmonary arterial hypertension (PAH).
She also read her poem -- The Dastardly Disease which she hopes to make into a mini book.
Thanks to Janice, Roberta and Merle for these notes.
Our next meeting is March 12, 2011 ~ HAPPY HOLIDAYS everyone -- see you all next year
Talking to your health care providers will
o Provide information -- not only to the doctor but also to the patient
o Make sure you let the doctor/nurse know of any major event or problem
oDo not wait until next appoint and don’t make it an “oh by the way”o Be sure to ask questions
o Take the information home with you
o Best to bring someone along with you to appointmentso Follow up if needed
o Interaction can be by phone and between visitso Report symptoms or problems in a timely mannero The phone works both ways – you do not always have to wait for the doctor to call youo Mirror the kind of relationship you wish to establish with your health care team
o What do you expect from themo What do they expect from youAfter the presentation Merle had additional announcements: This Holiday Season remember Red, Green and Gold – about foods - red foods (strawberries, raspberries, tomatoes, pomegranates contain antioxidants), green foods (also contain antioxidants-help immune system and both help blood flow) , and golden (nuts which are brain and mood food).
UT has a trial for those who are NOT on IV meds. The Freedom Study. To let you know about the recent launch of www.pahstudy.com/advocacy , an online resource for patients with pulmonary arterial hypertension (PAH).
She also read her poem -- The Dastardly Disease which she hopes to make into a mini book.
Thanks to Janice, Roberta and Merle for these notes.
Our next meeting is March 12, 2011 ~ HAPPY HOLIDAYS everyone -- see you all next year
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The meeting for September 11, 2010 opened with Merle welcoming all, reading the confidentiaity statement and having a moment of silence for those who have passed on. Since the last meeting Daniel Terriaco, Cheryl Arnett, and Mary Saum are now breathing easier. Merle also had a moment for those who lost their lives 9 years ago on 9/11 in NYC, western PA and Washington DC
An introduction of all clinicians and those pharmaceutical representatives present with a special thank you to United Therapeutics for providing the luncheon for the day.
Announcements: 4th Annual Walk & Roll is next weekend. *PHA has a new Support Line (formerly the Help Line) it does have the same phone number and it is still a patient to patient call 1800 748-7274 -*Blue Lips Campaign will be now thru October to raise awareness and make a Guiness World Record -- * November 19th will be the Cleveland Clinic Summit, A practical approach to evaluation and management -- *Merle mentioned the donut hole rebae of $250. -- *Don't forget your flu shot, it's that time of year once again.
Merle mentioned how she spoke briefly before the UAW in May about PAH and also requested co-sponsorship for HR 1030 and S 2803. With that speech she was able to mail letters to 5 Congresspeople and 200 signatures to each Sen. Voinovich and Sen Brown -- time is running out so don't forget to call and ask friends and family to call or write.
Out next meeting will be December 4th when Dr. Robert Schilz will be our guest speaker
Prior to the speaker, Roger Towle, a member of the PHA Board of Directors made a special presentation. Roger became involved volunteering with PHA when his daughter Jocelyn was diagnosed with PH in 2002. He has served on the PHA Board of Directors since 2003 and as the PHA Treasurer since 2004. He and his wife Deb live in Grove City, PA and are a country mile or so neighbors of Merle. He says his real job is the Vice President for Financial Affairs at Grove City College. Roger was gracious enough to accept the Outstanding PH CItizen Award for Merle this past June while at the 9th International Conference in Garden Grove, CA. Merle was unable to attend. She asked Roger to say upon that acceptance: There is hopr and remember to smile, it's contagious.
Lung Transplantation: Why, When and How
Speaker for the day, Dr. Thomas Gildea a member of the transplant team of the Cleveland Clinic, where his clinical interests span the realm of advanced lung diseases, including lung volume reduction, lung transplantation, pulmonary hypertension and he is focused on advanced diagnostic and therapeutic bronchoscopy. Dr. Gildea was the first American doctor to do an electromagnetic navigational bronchoscopy. This new technology uses images from a CT scan of a patient to feed into a computer. This information dictates where electrode sensors should be attached to the patient’s chest wall. A bronchoscopy is then done with the ability to navigate the sensors to biopsy lung cancer.
He explained the reason we may need a lung transplant, when it would be necessary and the process involved. There are several criteria that determine the need to consider lung transplantation.
1. Declining 6 minute walk test results
2. Failing therapy with intravenous Flolan or equivalent (failing quality of life)
3. Lower extremity edema
4. Cardiac index <2 liters/minutes/square meter
5. Right arterial pressure > 15 mmHg
And there is the old transplant window – you must be sick enough to need a transplant and healthy enough to survive. The policy has changed within the last 3 or 4 years about who qualifies for a transplant. About 1/3 die while on the waiting list for a transplant.
Disease Die Waiting
Emphysema 13.8%
PH 33%
PPH 30%
Cystic Fibrosis 2%
1. Declining 6 minute walk test results
2. Failing therapy with intravenous Flolan or equivalent (failing quality of life)
3. Lower extremity edema
4. Cardiac index <2 liters/minutes/square meter
5. Right arterial pressure > 15 mmHg
And there is the old transplant window – you must be sick enough to need a transplant and healthy enough to survive. The policy has changed within the last 3 or 4 years about who qualifies for a transplant. About 1/3 die while on the waiting list for a transplant.
Disease Die Waiting
Emphysema 13.8%
PH 33%
PPH 30%
Cystic Fibrosis 2%
The Lung Allocation Score (LAS) is important – criteria noted on the web site www.OPTN.transplant.hrsa.gov (Organ Procurement and Transplant Network)
Now they accept donors who were not considered previously as there is a shortage. There has been an increase in using marginal donors and also lung volume reduction surgery for COPD. So, sicker patients and risker organs.
Donors need not to have smoked or used illegal drugs within 6 months or active malignancy within the past 2 years with the exception of basal cell carcinoma or squamous cell of the skin with EFS of 5 years. The higher the LAS score, the higher you are on the transplant list. Factors for the score include height, blood type and region of the country. The Cleveland Clinic patients have a better chance as The Clinic have a jet that will go 2000 miles to retrieve organs.
Patients are living longer due to much better therapy so there is not always a need for transplant until later in life. Shut off for transplant use to be 65 now it is well into the mid to upper 70’s.
Survival rate for those with Idiopathic Pulmonary Hypertension are:
1 year 71%
2 years 60%
3 years 51%
4 years 44%
5 years 32%
Dr. Gildea also mentioned a patient survived 18 years
Doctors have learned two lungs are better for transplants as one lung or the new lung overworks as it is in better condition. Heart and lung transplants are uncommon as many types of heart problems or the right ventricle can repair itself after a lung transplant.
More than 80% have no problems after the first year of transplantation. Rejection is common and 40% is treatable. Anti-rejection medication is necessary. Pre-surgical counseling motivates every patient to take these necessary medications. Infection is a more serious problem and one type of possible infection is pneumonia. Other types of physical problems appear after transplantation. One half have high blood pressure after one year and renal dysfunction is another type. The risks are mentioned in pre-surgical counseling.
Transplantation is harder in the United States as we have many nationalities so our bodies are more diverse.
Questions and answers followed:
Living donors are not considered as there is too much long term risk for the donor. California had done one though. The donor could need a lung themselves later in life as a result of organ failure or a bad infection.
If someone is on a ventilator, the Clinic will still do heart or lung transplants.
A patient can be on more than one list. Michigan and Boston are popular one...
Sometimes heart surgery is needed at the time of lung surgery, such as tightening a valve. Not all hospitals do that but Duke and the Clinic can.
Lungs don’t repair themselves so stem cells are not being studied much for lungs. There is no money for stem cell research.
The typical cutoff age for 2 lungs is 60 years. One lung is 65 years. The Clinic did a transplant on a 75 year old man. Pittsburgh did a transplant on an 81 year old man.
Scarring will always be there but inflammation in lungs can improve.
The average wait time for lungs at the Clinic is 90 days.
Body Mass Index is an important consideration. The upper limit is a BMI of 30 and if an adult is less than 100 pounds they would not be considered.
It is difficult for Pulmonary Hypertension patients to reduce their body mass index as they
can’t exercise to lose weight- they have to control their diet.
Pulmonary hypertension patients can donate eyes, kidneys, and their liver, assuming they are not damaged. Donors and patients are typed for many types of diagnoses. Hepatitis C donors may donate organs for Hepatitis C patients if that patient is close to death as there are variations of Hepatitis C. They are also talking about giving HIV patients organs now as their life span has increased.
Now they accept donors who were not considered previously as there is a shortage. There has been an increase in using marginal donors and also lung volume reduction surgery for COPD. So, sicker patients and risker organs.
Donors need not to have smoked or used illegal drugs within 6 months or active malignancy within the past 2 years with the exception of basal cell carcinoma or squamous cell of the skin with EFS of 5 years. The higher the LAS score, the higher you are on the transplant list. Factors for the score include height, blood type and region of the country. The Cleveland Clinic patients have a better chance as The Clinic have a jet that will go 2000 miles to retrieve organs.
Patients are living longer due to much better therapy so there is not always a need for transplant until later in life. Shut off for transplant use to be 65 now it is well into the mid to upper 70’s.
Survival rate for those with Idiopathic Pulmonary Hypertension are:
1 year 71%
2 years 60%
3 years 51%
4 years 44%
5 years 32%
Dr. Gildea also mentioned a patient survived 18 years
Doctors have learned two lungs are better for transplants as one lung or the new lung overworks as it is in better condition. Heart and lung transplants are uncommon as many types of heart problems or the right ventricle can repair itself after a lung transplant.
More than 80% have no problems after the first year of transplantation. Rejection is common and 40% is treatable. Anti-rejection medication is necessary. Pre-surgical counseling motivates every patient to take these necessary medications. Infection is a more serious problem and one type of possible infection is pneumonia. Other types of physical problems appear after transplantation. One half have high blood pressure after one year and renal dysfunction is another type. The risks are mentioned in pre-surgical counseling.
Transplantation is harder in the United States as we have many nationalities so our bodies are more diverse.
Questions and answers followed:
Living donors are not considered as there is too much long term risk for the donor. California had done one though. The donor could need a lung themselves later in life as a result of organ failure or a bad infection.
If someone is on a ventilator, the Clinic will still do heart or lung transplants.
A patient can be on more than one list. Michigan and Boston are popular one...
Sometimes heart surgery is needed at the time of lung surgery, such as tightening a valve. Not all hospitals do that but Duke and the Clinic can.
Lungs don’t repair themselves so stem cells are not being studied much for lungs. There is no money for stem cell research.
The typical cutoff age for 2 lungs is 60 years. One lung is 65 years. The Clinic did a transplant on a 75 year old man. Pittsburgh did a transplant on an 81 year old man.
Scarring will always be there but inflammation in lungs can improve.
The average wait time for lungs at the Clinic is 90 days.
Body Mass Index is an important consideration. The upper limit is a BMI of 30 and if an adult is less than 100 pounds they would not be considered.
It is difficult for Pulmonary Hypertension patients to reduce their body mass index as they
can’t exercise to lose weight- they have to control their diet.
Pulmonary hypertension patients can donate eyes, kidneys, and their liver, assuming they are not damaged. Donors and patients are typed for many types of diagnoses. Hepatitis C donors may donate organs for Hepatitis C patients if that patient is close to death as there are variations of Hepatitis C. They are also talking about giving HIV patients organs now as their life span has increased.
A DONOR SHOULD TELL THEIR FAMILY OF THEIR WISHES AND HAVE IT NOTED ON THEIR LICENSE.
Thank you Roberta and Janice for taking notes of the presentation
Remember our next meeting is December 4th
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The meeting for June 13th 2010 started a little late - a quick setup was required
The confidentiality statement was read and a moment of silence for those who are no longer suffering.
Introduction of clinicians and pharmaceutical reps and a thank you to United Therapeutics for sponsoring our luncheon of the day.
Announcements included:
• A Woo Hoo moment – PHA has notified Merle she is the recipient for the Outstanding PH Citizen Award **see below
• Afghan – any more tickets needed – any tickets or funds to turn in
• Envelope of Hope for new comers – on the table up front – PHA will mail an info packet
• The PHA 9th Annual Biennial International Conference ~ in Garden Grove, CA this coming June 25th thru the 27th 2010 “Riding the Wave to a Cure” **The OUTSTANDING PH CITIZEN award (a national recognition) will be presented at the conference. Merle will be unable to attend; a member of the PHA Board of Directors will accept it on her behalf.
• Our 4th Annual Walk & Roll has been changed to September 18th - to raise funds for Research and Awareness – links are now on the site for donations and registration
• As of right now, November 19th will be a one day event for the CCF Summit
• Starting this week the health reform law gradually phases out the doughnut hole. This year, people who enter the coverage gap will receive the one-time $250 rebate check. Beginning next year, consumers in the doughnut hole will receive a 50 percent discount on brand-name drugs and a 7 percent discount on generics. The share consumers pay for both brand-name and generic drugs will decrease until the gap is eliminated in 2020, when consumers will pay the standard 25 percent of the costs for drugs while in the doughnut hole.
• Don't forget HR 1030 and S 2803 we need to call our politicians to co-sponsor these bills
• Afghan – any more tickets needed – any tickets or funds to turn in
• Envelope of Hope for new comers – on the table up front – PHA will mail an info packet
• The PHA 9th Annual Biennial International Conference ~ in Garden Grove, CA this coming June 25th thru the 27th 2010 “Riding the Wave to a Cure” **The OUTSTANDING PH CITIZEN award (a national recognition) will be presented at the conference. Merle will be unable to attend; a member of the PHA Board of Directors will accept it on her behalf.
• Our 4th Annual Walk & Roll has been changed to September 18th - to raise funds for Research and Awareness – links are now on the site for donations and registration
• As of right now, November 19th will be a one day event for the CCF Summit
• Starting this week the health reform law gradually phases out the doughnut hole. This year, people who enter the coverage gap will receive the one-time $250 rebate check. Beginning next year, consumers in the doughnut hole will receive a 50 percent discount on brand-name drugs and a 7 percent discount on generics. The share consumers pay for both brand-name and generic drugs will decrease until the gap is eliminated in 2020, when consumers will pay the standard 25 percent of the costs for drugs while in the doughnut hole.
• Don't forget HR 1030 and S 2803 we need to call our politicians to co-sponsor these bills
• Our next meeting will be September 11th back to Saturdays and Dr. Gilda will speak to us about
"Lung Transplantation ~ Why, When and How."
Our presentation for the day: Dr. Richard Krasuski, Director of Adult Congenital Heart Disease Services, a staff cardiologist in the Department of Cardiovascular Medicine at the Cleveland Clinic also an Assistant Professor of Medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University and is certified by the American Board of Internal Medicine as Diplomat in Cardiovascular Disease. Dr. Krasuski received his medical degree from Harvard Medical School and completed a residency in internal medicine at Brigham & Women’s Hospital in Boston, Massachusetts and a fellowship in cardiology at Duke University Medical Center in Durham, North Carolina, where he received additional subspecialty training in adult congenital heart disease and pulmonary hypertension.
In 2004 Dr. Krasuski was voted Researcher of the Year at Wilford Hall Air Force Medical Center in San Antonio, Texas and in 2005 he was the youngest finalist ever for the “Gold Cane Award” for academic, clinical and research excellence. In the fall of 2005 he joined the Cleveland Clinic and has since orchestrated a multidisciplinary program in adult congenital heart disease and collaborated on a multidisciplinary program in pulmonary hypertension.
Pulmonary arterial hypertension (PAH) commonly arises in patients with congenital heart disease (CHD) and greater numbers of patients with PAH associated with CHD (PAH-CHD) are now surviving into adulthood, many with increasingly complex cardiac defects. Let’s learn more when Dr. Krasuski will explain:
Pulmonary arterial hypertension (PAH) commonly arises in patients with congenital heart disease (CHD) and greater numbers of patients with PAH associated with CHD (PAH-CHD) are now surviving into adulthood, many with increasingly complex cardiac defects. Let’s learn more when Dr. Krasuski will explain:
"Congenital Heart Disease and Pulmonary Hypertension ~ Plumbing and Beyond."
Pulmonary arterial hypertension (PAH) commonly arises in patients with congenital heart disease (CHD) and greater numbers of patients with PAH associated with CHD (PAH-CHD) are now surviving into adulthood, many with increasingly complex cardiac defects.
Complications at birth:
Atrial Septal Defects
Tetralogy of Fallot
Atrial Septal Defects
Tetralogy of Fallot
8/1,000 are complicated by heart disease, not including Atrial valve and mitral valve prolapsed.
800,000 adults with CHD are reported in the US and this increases ~ by 9,000 each year due to children surviving.
800,000 adults with CHD are reported in the US and this increases ~ by 9,000 each year due to children surviving.
Objectives:
1) Recognized and be treated
2) Newly diagnosed as adults are mostly with Atrial Septal Defects
Majority face a life time of problems such as:
Rhythm disturbances
Heart failure
Need for re-operation
Adults think they are cured after surgery, as palliative methods can cause problems.
RV (right ventricle) and TV (tricuspid valve) are ill equipped to handle systemic pressures. Shunt holes can result in Pulmonary Hypertension years later.
1) Recognized and be treated
2) Newly diagnosed as adults are mostly with Atrial Septal Defects
Majority face a life time of problems such as:
Rhythm disturbances
Heart failure
Need for re-operation
Adults think they are cured after surgery, as palliative methods can cause problems.
RV (right ventricle) and TV (tricuspid valve) are ill equipped to handle systemic pressures. Shunt holes can result in Pulmonary Hypertension years later.
Right ventricle – Holy Grail of adult congenital heart disease.
It is shaped ellipsoidal- pyramid – crescent shaped- prism shaped – like a baseball mitt
It is shaped ellipsoidal- pyramid – crescent shaped- prism shaped – like a baseball mitt
Left ventricle is oblong shaped – like a football.
Right ventricle can have problems with volume as associated with atrial septal defects- tetralogy of fallot – known as “Blue Baby”. Tetralogy of Fallot is classified as a cyanotic heart defect because the condition causes low oxygen levels in the blood, which leads to cyanosis (a bluish-purple coloration to the skin).
Ventricular septal defect (hole between the right and left ventricles) as the valve leaks right ventricle becomes enlarged and volume issue and questionable to replace.
Narrowing of the pulmonary outflow tract (tube that connects the heart with lungs)
as a hole is present and narrowing under pulmonic valve.
as a hole is present and narrowing under pulmonic valve.
Patients with Pulmonary Hypertension - 14% congenital population with congenital heart disease.
Patent Ductus Arteriosis: a vascular structure between the pulmonary artery and the aorta that normally closes shortly after birth, if it remains open will cause decrease in blood oxygenation; blood bypasses lungs – mixes with aorta and causes low saturations.
Eisenmenger syndrome (usually in infants and young children) is a left to right heart shunt caused by ventricular septal defect (a hole in the heart) and can lead to kidney failure, erythrocytosis (an abnormal increase in the number of circulating red blood cells), proteinuria (an excess of serum proteins in the urine) and elevated uric acid. This hole in your heart causes blood to flow or circulate abnormally in your heart. Oxygen-carrying blood (red blood) mixes with oxygen-poor blood (blue blood). The blood then returns to your lungs instead of going to the rest of your body, causing high blood pressure in your lungs. High blood pressure in your lungs (pulmonary hypertension), when significant, can cause serious medical conditions. Symptoms increase with increased pressures. 25% of children use to die at 5 years, now the median survival is 37 or longer.
Catherization in Congenital Heart Disease patients outweighs the risk.
Two cases were discussed and reviewed. One case involved an 85 yr old male with a history of Atrial fibrillation and moderate PAH. He had reactive pulmonary vasculature. A plug was implanted across the patent ductus. His functional capacity improved from WHO III to a WHO I to II with great improvement.
Diuretics are used to assist to decrease the load on the right ventricle. There are now several medications used to treat PH.
Cardiac catherization measures the cardiac index which is the amount of blood the left ventricle is ejecting out into the body which is a measure of the heart function.
Questions and answers followed the presentation.
We then had our door prize drawing and our chat and snack time for sharing our thoughts, concerns and helpful hints.
% % % % % % % % %
The meeting for May 15, 2010 opened approximately 1:00 pm. The confidentiality statement was read and Merle welcomed all. A moment of silence was held for those who were no longer suffering.
A thank you to United Therapeutics for providing the lunch for the day
Presentation on March 13, 2010 was given by Erin Dweik, a licensed dietician with a BS in Dietetics and MEd in Nutrition. Getting the Most Out of Your Food: Eating for Pulmonary Hypertension notes posted below on the web site.
Any Birthdays, Anniversaries (wedding or PH) any other special event. - Les and Marion Pollock celebrated 62 years of wedded bliss.
• Afghan – any more tickets needed – any tickets or funds to turn in
• Envelope of Hope for new comers – on the table up front – an info packet will be mailed out by PHA
• The PHA 9th Annual Biennial International Conference ~ in Garden Grove, CA this coming June 25th thru the 27th 2010 “Riding the Wave to a Cure” forms/cards available
• Our 4th Annual Walk & Roll has been changed to September 18th - to raise funds for Research and Awareness. Same place Sand Run Park in Akron.
• As of right now, November 19th will be the one day event for the CCF Summit
• Pfizer acquired from Ergonex Pharma a new Phase 2 trial for the treatment of PAH. Terguride is an oral, potent antagonist of 5-HT2B and 5-HT2A (serotonin) receptors. Due to the potential anti-proliferative and anti-fibrotic activity of terguride, this potential medicine could offer the hope of achieving reversal of pulmonary artery vascular remodeling and attenuation of disease progression
• Copies of letters to be mailed to your politicians, Federal Representatives and Congressman regarding the HR 1030 – The Tom Lantos Pulmonary Hypertension Research and Education Act of 2009 are available.
Merle asked that we each call our Senators this week asking them for co-sponsorship
• Our next meeting has been changed from July to Sunday, June 13 at 1:00 PM due to cut backs at the Library.
A thank you to United Therapeutics for providing the lunch for the day
Presentation on March 13, 2010 was given by Erin Dweik, a licensed dietician with a BS in Dietetics and MEd in Nutrition. Getting the Most Out of Your Food: Eating for Pulmonary Hypertension notes posted below on the web site.
Any Birthdays, Anniversaries (wedding or PH) any other special event. - Les and Marion Pollock celebrated 62 years of wedded bliss.
• Afghan – any more tickets needed – any tickets or funds to turn in
• Envelope of Hope for new comers – on the table up front – an info packet will be mailed out by PHA
• The PHA 9th Annual Biennial International Conference ~ in Garden Grove, CA this coming June 25th thru the 27th 2010 “Riding the Wave to a Cure” forms/cards available
• Our 4th Annual Walk & Roll has been changed to September 18th - to raise funds for Research and Awareness. Same place Sand Run Park in Akron.
• As of right now, November 19th will be the one day event for the CCF Summit
• Pfizer acquired from Ergonex Pharma a new Phase 2 trial for the treatment of PAH. Terguride is an oral, potent antagonist of 5-HT2B and 5-HT2A (serotonin) receptors. Due to the potential anti-proliferative and anti-fibrotic activity of terguride, this potential medicine could offer the hope of achieving reversal of pulmonary artery vascular remodeling and attenuation of disease progression
• Copies of letters to be mailed to your politicians, Federal Representatives and Congressman regarding the HR 1030 – The Tom Lantos Pulmonary Hypertension Research and Education Act of 2009 are available.
Merle asked that we each call our Senators this week asking them for co-sponsorship
• Our next meeting has been changed from July to Sunday, June 13 at 1:00 PM due to cut backs at the Library.
Presentation of the day: Dr. Stefani Parrisbalogun from the Department of Psychiatry at University Hospitals Case Medical Center will help us to understand and how to deal with acceptance.
“How to deal with acceptance of living with a chronic disease”
Ever say: I do not have a life threatening disease, I can still do as I want. Or: I just have a cold, I’ll be better soon. Or maybe you’ve said I’m a little out of shape (sound familiar)…. You are not alone in those thoughts. Living and accepting having a chronic disease can be a challenge.
Pulmonary Hypertension fits into the definition of chronic illness of a lifelong progressive disease. Psychosocial aspects of wellness and family are all involved. The person & illness lose sense of self and become the illness. The difficulties of conquering the ability to cope with the illness and implications of other areas ones life were discussed as well as the perception both objective & subjective are different with male, female, age, and past experiences with the illness and whether or not one has had a good relationship with their physician. The cause of PAH as it labels one with the disease, cause, duration, consequences and controlled it is as well as how you deal with symptoms. Coping in a healthy way is very important in dealing with the changes that occur day to day. The overall psychosocial and support systems need to be addressed by the treating MD as well as the patient being honest and expressing the problems he/she is encountering in all aspects of their life. A person may have a sense of relief in having a diagnosis but is not sure how it will affect them personally. Some may lose their sense of self.
Emotions of anxiety, anger, fear, guilt, denial, shame, envy are all encountered by everyone the patient and family with PH. Anger and acceptance. Look at underlying reasons behind anger at yourself or the world. One’s personality has a great deal of how coping with PH is managed. All have different emotions at different times and many have problems dealing with the emotions and are unable to move into a healthier level of acceptance. Personality is a big factor in dealing with the illness. Underlying issues of abandonment, loss of control, loss of love, attractiveness, less loved and being a burden on the family are a few of those felt.
Different coping skills were discussed as individuals fall back on how they have dealt with problems in the past. Untreated symptoms of anxiety/depression needs taken care of and seeking support may be needed. Individual support from a therapist will help one to maintain a sense of self, productivity, need to continue. Re-examine priorities, health and family/friends. Try stress management techniques, meditation, breathing exercises, and yoga all decrease the levels of stress hormones. Try humor and laughter as a positive coping mechanism. Try pulmonary rehabilitation to improve your muscle strength, decrease anxiety, depression and distress.
Caregivers need to take care of themselves so they will maintain their health and sanity to be able to help the affected family/friend with PH. Learn your coping skill and keep doing it to maintain a positive energy, concentration. Talk with your family member/friend the importance of maintaining a positive attitude and strengthen your relationship. Acceptance takes time. If there is anger or denial, look for a reason why.
MUSIC THEARPY -- Erika Svitak of Hospice of the Western Reserve talked about the different services provided. Different areas of services offered by Palliative services were discussed as well a packet listing summer 2010 community support groups & activities. Palliative care has a goal of keeping the patient out of the hospital.
Virginia Kallay, Music therapist discussed the history of music therapy. Research has shown that music therapy increases IGA in saliva which is very good for the immune system. We should have a song library of music for our different moods. Music carries memories- possibly of smells and taste when you hear a song. Restaurants and elevators use music to stimulate the mood. Songs can and are played hopefully to relax the patient - different people interpret various songs differently. So listen to music you enjoy…choosing a song we enjoy gives us a sense of some control.
Music is used to stimulate exercise, gait training in individuals with Parkinson’s disease; individuals who stutter are able to not stutter with singing. Music is used to calm breathing, reduce pain, anxiety, and a variety of disorders. Ginny also mentioned how drawing can also help with our mood changes; art is also relaxing. Guided imagery, songwriting, keeping a journal may help.
A few examples of songs were played on the guitar to demonstrate the use of music in reducing breathing and stress and a ballad created by two boys for their Mom.
After the presentation; the meeting was opened up by Merle for any questions or concerns. We then had our door prize drawing and the meeting was adjourned.
Thank you Janice for taking these notes, also a thank you to Roberta
“How to deal with acceptance of living with a chronic disease”
Ever say: I do not have a life threatening disease, I can still do as I want. Or: I just have a cold, I’ll be better soon. Or maybe you’ve said I’m a little out of shape (sound familiar)…. You are not alone in those thoughts. Living and accepting having a chronic disease can be a challenge.
Pulmonary Hypertension fits into the definition of chronic illness of a lifelong progressive disease. Psychosocial aspects of wellness and family are all involved. The person & illness lose sense of self and become the illness. The difficulties of conquering the ability to cope with the illness and implications of other areas ones life were discussed as well as the perception both objective & subjective are different with male, female, age, and past experiences with the illness and whether or not one has had a good relationship with their physician. The cause of PAH as it labels one with the disease, cause, duration, consequences and controlled it is as well as how you deal with symptoms. Coping in a healthy way is very important in dealing with the changes that occur day to day. The overall psychosocial and support systems need to be addressed by the treating MD as well as the patient being honest and expressing the problems he/she is encountering in all aspects of their life. A person may have a sense of relief in having a diagnosis but is not sure how it will affect them personally. Some may lose their sense of self.
Emotions of anxiety, anger, fear, guilt, denial, shame, envy are all encountered by everyone the patient and family with PH. Anger and acceptance. Look at underlying reasons behind anger at yourself or the world. One’s personality has a great deal of how coping with PH is managed. All have different emotions at different times and many have problems dealing with the emotions and are unable to move into a healthier level of acceptance. Personality is a big factor in dealing with the illness. Underlying issues of abandonment, loss of control, loss of love, attractiveness, less loved and being a burden on the family are a few of those felt.
Different coping skills were discussed as individuals fall back on how they have dealt with problems in the past. Untreated symptoms of anxiety/depression needs taken care of and seeking support may be needed. Individual support from a therapist will help one to maintain a sense of self, productivity, need to continue. Re-examine priorities, health and family/friends. Try stress management techniques, meditation, breathing exercises, and yoga all decrease the levels of stress hormones. Try humor and laughter as a positive coping mechanism. Try pulmonary rehabilitation to improve your muscle strength, decrease anxiety, depression and distress.
Caregivers need to take care of themselves so they will maintain their health and sanity to be able to help the affected family/friend with PH. Learn your coping skill and keep doing it to maintain a positive energy, concentration. Talk with your family member/friend the importance of maintaining a positive attitude and strengthen your relationship. Acceptance takes time. If there is anger or denial, look for a reason why.
MUSIC THEARPY -- Erika Svitak of Hospice of the Western Reserve talked about the different services provided. Different areas of services offered by Palliative services were discussed as well a packet listing summer 2010 community support groups & activities. Palliative care has a goal of keeping the patient out of the hospital.
Virginia Kallay, Music therapist discussed the history of music therapy. Research has shown that music therapy increases IGA in saliva which is very good for the immune system. We should have a song library of music for our different moods. Music carries memories- possibly of smells and taste when you hear a song. Restaurants and elevators use music to stimulate the mood. Songs can and are played hopefully to relax the patient - different people interpret various songs differently. So listen to music you enjoy…choosing a song we enjoy gives us a sense of some control.
Music is used to stimulate exercise, gait training in individuals with Parkinson’s disease; individuals who stutter are able to not stutter with singing. Music is used to calm breathing, reduce pain, anxiety, and a variety of disorders. Ginny also mentioned how drawing can also help with our mood changes; art is also relaxing. Guided imagery, songwriting, keeping a journal may help.
A few examples of songs were played on the guitar to demonstrate the use of music in reducing breathing and stress and a ballad created by two boys for their Mom.
After the presentation; the meeting was opened up by Merle for any questions or concerns. We then had our door prize drawing and the meeting was adjourned.
Thank you Janice for taking these notes, also a thank you to Roberta
+ + + + + + + + + + + + + +
March 13, 2010 Merle opened the meeting with a welcome and greetings to all after such a long winter. She hoped the holidays were bright and cherry and wished all a Happy New Year, a Happy Ground Hog Day, A Happy Valentine’s Day and a soon to be Happy St. Patrick’s Day – most importantly, a happy new decade and all it will bring; like the CENSUS.
A moment of silence to remember those who have departed this life, those who are breathing easier and are no longer suffering. Marlene Kersman died this past January
An introduction of all clinicians and those pharmaceutical representatives; with a special thank you to United Therapeutics for the feast of the day.
Announcements: Birthdays, Anniversaries (wedding or PH) any other special event.
•Updates on the web site.
Updates on the web site. •Unity Walk – the donations from the afghan were used toward this event ~
Unity Walk – the donations from the afghan were used toward this event ~ •On January 29th Pittsburgh had a Unity Walk and a tour of AGH’s PH Research Dept. Merle explained that Dr. Benza (AGH) and Franz (Mayo) and PA Lazar (AGH) climbed Mt. Kilimanjaro to raise awareness and funds for PAH.
On January 29th Pittsburgh had a Unity Walk and a tour of AGH’s PH Research Dept. Merle explained that Dr. Benza (AGH) and Franz (Mayo) and PA Lazar (AGH) climbed Mt. Kilimanjaro to raise awareness and funds for PAH.•HEART ~ Function vs Emotion. A ballet on February 19th and 20th Bayham Theater sponsored by UPMC. 4 heart tx patients and 2 ph patients Merle and Holly
HEART ~ Function vs Emotion. A ballet on February 19th and 20th Bayham Theater sponsored by UPMC. 4 heart tx patients and 2 ph patients Merle and Holly•Envelope of Hope for new comers – on the table up front – an info packet will be mailed out
Envelope of Hope for new comers – on the table up front – an info packet will be mailed out•The PHA 9th Annual Biennial International Conference ~ in Garden Grove, CA this coming June 25th thru the 27th 2010 “Riding the Wave to a Cure” forms/cards available
The PHA 9th Annual Biennial International Conference ~ in Garden Grove, CA this coming June 25th thru the 27th 2010 “Riding the Wave to a Cure” forms/cards available•Tickets passed out for the Afghan of Hope the Kersman family has donated
Tickets passed out for the Afghan of Hope the Kersman family has donated•Our 4th Annual Walk & Roll this September 25th - to raise funds for R/A
Our 4th Annual Walk & Roll this September 25th - to raise funds for R/A•As of right now, November 19th will be the one day event for the CCF Summit
As of right now, November 19th will be the one day event for the CCF Summit•Don’t forget the time change tonight… that must be a sign of spring
Don’t forget the time change tonight… that must be a sign of springHR 1030 - The Tom Lantos Pulmonary Hypertension Research and Education Act of 2009, we can have hope. Letters available to be mailed and also copies of the bill. Please be sure to contact your Federal Representative your Congressperson and ask him or her to co-sponsor this bill. Congressman Tim Ryan (17th) , Congressman Charlie Wilson (6th) and Congressman Stephen LaTourette (14th); have co-sponsored that leaves 15 more from Ohio.
•On November 19, 2009 Senator Robert Casey (PA) introduced into the Senate
On November 19, 2009 Senator Robert Casey (PA) introduced into the Senate S 2803. Now we need to write and call our Senators and ask them to co-sponsor this bill. •Contact friends and relatives in other states and ask for their support in doing this
Contact friends and relatives in other states and ask for their support in doing this•You can call, stop in, mail or e-mail your Congressperson or Senator; asking them for co-sponsorship. If you mail anything, mail to their local office
You can call, stop in, mail or e-mail your Congressperson or Senator; asking them for co-sponsorship. If you mail anything, mail to their local office •Remember, they don’t always know about these bills, especially if they are not on that respective committee.
Remember, they don’t always know about these bills, especially if they are not on that respective committee.•Merle has a list if you’re not sure who your Congressperson is. Politicians are also listed in the Government pages of your phone book or look on the site – zip code needed
Merle has a list if you’re not sure who your Congressperson is. Politicians are also listed in the Government pages of your phone book or look on the site – zip code needed•Sen. George Voinovich (R-OH) 1240 East Ninth Street, Room 3061
Sen. George Voinovich (R-OH) 1240 East Ninth Street, Room 3061Cleveland, Ohio 44199 Phone: (216) 522-7095
•Sen. Sherrod Brown (D-OH) 1301 East Ninth Street, Suite 1710
Sen. Sherrod Brown (D-OH) 1301 East Ninth Street, Suite 1710Cleveland, Ohio 44114 Phone: (216) 522-7272
•Please email or call Merle if you need help in doing this.
Please email or call Merle if you need help in doing this. Our presentation for the day: Erin Dweik, a registered and licensed dietitian who has a BS in Dietetics and a MEd in Nutrition, both from the University of Cincinnati. Erin also pursued a PhD in Nutrition from Virginia Tech and an MPH in Nutrition from New York Medical College. She has worked in hospitals as a dietitian since 1986. Her primary interest is diabetes, weight control/obesity and public health nutrition as well as pulmonary hypertension. She has contributed to a book chapter on dietary aspects of pulmonary hypertension. Erin will guide us to learning how to eat a healthy and nutritious snack or meal.
Getting the Most Out of Your Food: Eating for Pulmonary HypertensionA quick review of the five food groups were stated to be: Protein, Carbohydrate, Fat, Water, and Minerals.
A hand out with the following questions was given and completed by each attendee as well as discussion for each response.
Your relationship with food.Your worst food habit.One thing you need to do.Your relationship with exercise.What is stopping you?Your motivation.Part 2 ~ Eating for Pulmonary Hypertension.
General Recommendations
Weight Control Mirror the economySodium Restriction: Choose with sodium in mind – read those labelsSupplements: See: Vitamin E, Vitamin C, and beta-cryptoxanthinAvoid these supplements: garlic (if you are on coumadin) ginkgo biboa, ginger (interferes with anticoagulation), feverfew (increase potency of anti-coagulants), aloe vera (increases K) loss/diuretics, African/Caribbean tea-Papilionacea crotalaria – linked to development of Pulmonary Hypertension.
Frequently asked about Supplements ~ always check with your doctor
Omega – 3 Fatty AcidsL-CarnitineResveratrolCollagen SupplementsGenseng (green tea extracts)Chromium, ZincCoenxyme Q10L-arginineSupport Systems with Healthy Eating.
After the presentation, the meeting was opened up by Merle for any questions and discussion. We then had our door prize drawing. Thank you Janice for helping with these notes.
* * * * * * * * * * * * * * *
Merle Reeseman ~ Support Group Leader
