Team PHenomenal Hope

Who Are they

Team PHenomenal Hope is a nonprofit 501(c)3 based organization right here in Pittsburgh, Pennsylvania. The organization was founded in 2012 and started out as just 4 friends cycling to raise funds and awareness of Pulmonary Hypertension. Their first race was the race of their lives in the ~ Race Across America in 2014. These four amazing women rode their bikes 3,000 miles, through 12 States. The entire race was to take 9 days to finish. They completed it in 7 days 💜💪

Since that time, the team has grown from these 4 women to 100 athletes and 3 Teams which are located in Mexico, Germany and Brasil, with our 4th just getting ready to launch in South Africa. Every single racer is a volunteer helping to bring awareness to this disease and raise money throughout each calendar year to go towards further research of finding a cure for PH.

Through the organization, Athletes are paired up with a patient from the PH Community and they race together to raise awareness and funds. The athletes no longer just Bike, they now Run, Hike, Swim, and Ski.  They do Marathons, Tri-Athlons and even do Iron Man Races. All to help the PH Community phight for a cure.  Did I mention all of the Athletes are Volunteers!?

As a patient myself, I have teamed up with Team PH over the last 2 years helping to bring awareness by taking part in the Let Me Be Your Lungs Campaign. This year will be my 3rd and I look forward to meeting my new Athlete(s) 😊  This is where we need the help of YOU, the patient. We need more patients to team up with the athletes, and get our voices heard on this disease.  The Athletes do all the leg work, we just tell our stories and get to know the Athlete. Forming a bond that will last a lifetime, because they are in a race for OUR LIVES!

Here are my two Athletes from last year, Yvonne Taylor, Mother of 2, Fitness Trainer, and now a personal friend, which we became after being paired for this campaign.     Michael Bauer, worked in Research and is a Personal Coach along with Anne-Marie (one of our original athletes) training athletes for Marathons. 

                                                                                                                 

You can find Our experiences working together as a Team at the links below.  https://www.teamphenomenalhope.org/yvonnes-ph-story/

https://www.teamphenomenalhope.org/janices-ph-story/

You can also find my story/journey here: https://www.teamphenomenalhope.org/janice-janus/

HOW CAN YOU BE A PART OF THIS?

Easy, send us your PH story,  A high definition photo of yourself as well as your e-mail address. You will then be paired with an Athlete and your information will be shared with your Athlete and communication will begin, so you can get to know one another on a more personal level.

Send your information to me here: recruiterteamph@comcast.net
Send it to Katie Werner our Program Manager: Katie@teamphenomenalhope.org  let her know I sent you 💜😊

To Learn more about Team PHenomenal Hope, click their logo at the top of the screen or go here: www.teamph.org   You will find all of the Athletes who are racing for the PH Community, as well as the other patients stories who are teaming up with the Athletes.

Hope to see you among us, racing for awareness and eventually a CURE!

Thanks for reading my blog today: Stay tuned for the next one ~ Traveling with PH💜😊

Types of PH

I know its been a while for me writing on my blogs, and for that I apologize. I just made this statement to another family member and friend, sometimes life gets in the way of life and you forget to let the one's you love know you are still alive and well.

So today's blog is going to be about the WHO GROUP's of Pulmonary Hypertension, the difference between PAH and PH, and the Stages or "CORRECT" terminology "Functional Class".

PAH vs PH ~ PAH mainly relates to those in WHO GROUP 1 any other category that you would fall under for the WHO GROUP would be PH as it is caused by an underlying condition that needs to be treated.   All patients that fall withing WHO GROUP 1 are able to take most all of the medications to treat the condition. Whereas those in the other WHO GROUPS are treated for their underlying disease as the PH medications can be more harmful for you. Please see the remaining article to get a better understanding of what I am stating here.

GROUPS

1. Pulmonary Arterial Hypertension

2. Pulmonary Hypertension due to left heart disease

3. Pulmonary Hypertension due to lung disease

4. Pulmonary Hypertension due to blood clots in the lungs

5. Blood and other rare disorders that lead to Pulmonary Hypertension

Pulmonary Arterial Hypertension:  PAH ~ WHO GROUP I

1. Idiopathic PAH

2. Heritable (genetic, can be passed down)

a. BMPR2 (the most common cause of PAH that runs in families)

b. ALK1, endoglin, SMAD9, CAV1, KCNK3 (less common genetic causes of PAH that runs in families)

3. Drug and Toxin induced

      a. Amphetamines and Methamphetamines

      b. Cocaine

      c. Fenfluramine-Phentermine (prescription diet pills)

4. Associated with other systemic diseases

     a. Connective tissue diseases such as scleroderma, systemic lupus erythematosis, mixed                connective tissue disease and rheumatoid arthritis

     b. HIV infection

     c. Portal hypertension (a type of liver disease that leads to high pressures within the liver)

     d. Congenital heart disease

All available medications are able to assist in slowing down the progression of the disease. 

Pulmonary Hypertension: PH ~ WHO GROUP 2

1. Left ventricular systolic dysfunction (the squeeze of the left ventricle is impaired)

2. Left ventricular diastolic dysfunction (stiffness of the left ventricle leads to pressure elevation in the pulmonary arteries)

3. Valvular heart disease (either narrowing or leakiness of the left heart valves)

4. Left heart due to valvular disease and congenital cardiomyopathies (problems with blood flowing in or out of the left side of the heart not due to a valve problem)

Treatment of Group 2 PH (caused by left heart disease) focuses on the underlying problems. In patients with impaired squeeze of the left ventricle we have a group of medications that improves the left heart function over time. Patients with stiffness of the left side of the heart are treated with diuretics, blood pressure medications if their blood pressure is elevated, weight loss if they are over weight, and CPAP if they have sleep apnea. Patients with valvular heart disease are often treated with surgery to replace the diseased heart valve. Medicines are used to treat fluid retention.

Pulmonary Hypertension: PH ~ WHO GROUP III

1. Chronic obstructive pulmonary disease (COPD)

2. Interstitial lung diseases (scarring and inflammation in the lungs)

3. Sleep-disordered breathing (sleep apnea)

4. Alveolar hypoventilation disorders (diseases that lead to inadequate breathing and increased levels of carbon dioxide in the blood)

5. Chronic high altitude exposure

6. Developmental abnormalities of the lung

For cases of this nature, some of the PH medications can be used, but under proper care from your PH Team, as they still have to provide beneficial ways to treat the underlying condition as well as the PH. 

Pulmonary Hypertension: PH ~ WHO GROUP IV

Chronic Thromboembolic Pulmonary Hypertension otherwise known as CTEPH

Chronic blood clots in the arteries of the lungs. You can have PTE treatment to rid the clots, if you are medically able to do so. This is normally treated with blood thinners and you can also take Adempas.  Some are able to take other forms of the PH medication and is best left to the PH Specialist you are in care with, to determine what will work best.  There are patients in my FB group that you can reach out to and discuss their treatments and how they are dealing with this.  Join us today:  https://www.facebook.com/groups/304235876377617/

Pulmonary Hypertension: Unclear Multifactural Mechanisms WHO GROUP V

1. Hematologic Disorders (certain types of anemia, splenectomy)

2. Systemic Disorders that have lung involvement (Sarcoidosis, Langerhan cell histiocytosis, neurofibromatosis, vasculitis, and lymphangioleimyomatosis)

3. Metabolic Disorders (rare diseases of impaired cell metabolism, thyroid disease)

4. Other diseases not well classified elsewhere (chronic renal failure, tumors obstructing the pulmonary arteries and other rare diseases)

Functional Classification

We DO NOT go by a stage process with our disease like many other diseases out there. We are in a classification of functionality.   A stage of a disease is determined to be the worst case with less likely prognosis of being cured/corrected.  Whereas for PH all Functionality is treatable, but NEVER Curable unless of course you have certain surgeries to correct the PH, like PTE surgery or Transplant of lungs/heart if needed. 

Our Functionality is as follows: 

Class I ~ No symptoms of pulmonary arterial hypertension with exercise or at rest

Class II ~ No symptoms at rest but uncomfortable and short of breath with normal activity such as climbing a flight of stairs, grocery shopping, or making the bed.

Class III ~ May not have symptoms at rest but activities greatly limited by shortness of breath, fatigue, or near fainting. Patients in this class have a difficult time doing normal chores around the house and have to take breaks while doing activities of daily living.

Class IV ~ Symptoms at rest and severe symptoms with any activity. Patients in this class may faint especially while bending over with their heads lowered. Most patients in this class are also volume overloaded with edema in their feet and ankles from right heart failure.

Information obtained in this article was derived from PHAssociation and PulmonaryHypertensionRN websites and the World Health Organization. For more information regarding this disease please visit either website at: 

www.phassociation.org

www.pulmonaryhypertensionrn.com

http://www.who.int/en/

Thanks for reading and be on the lookout for my next blog: Traveling with PH 💜😊

Caregiver

I had a great question asked of me the other day in my support group on FB.  How do you deal with caring for yourself with PH and being a caregiver to another that is terminally ill as well?

That my phriend (friend) is no easy feat, but it is very manageable IF you follow a few guidelines.

Most important thing to remember there has to be a "BALANCE"! Without balance, you will burn yourself out and it won't be good for either of you.

I was a caregiver to my grandmother from 2008 until 2016. She came to us after she fell at Christmas and broke her shoulder, what turned out to only being a few weeks so she could heal, turned into the remainder of her life.

In 2010 she was diagnosed with Mild to Moderate Dementia and could not live on her own anymore. So now you have a decision to make, send her to a nursing home where there are strangers caring for her, or keep her living as long as you can in the love and warmth of your own home where you know she will get the care she needs. Of course, we chose the latter of the two, there was 4 of us to help when needed. So I was helping with Gram, and Mom because yes, mom also had PH and wasn't able to do all she needed because of her medication and working a full time job. So I did the majority of it all. Cleaning, cooking, getting gram washed, dressed, fed etc.   The guys rarely helped, it was gram lol so they can't bathe her or help her dress, so it was up to us.   Then I got diagnosed early in 2012 so here comes another obstacle, or is it?  Nope, I was determined, she is staying put. So now comes mom getting sicker as the days go by and was in and out of the hospital. We lost her to PH in late 2013. So now its all on my shoulder, being sick as well.

How did I handle this?

I set a routine in motion with a schedule.  I revolved my doctors appointments around hers. She went every 3 months, mine was every 6 months and once a year with my PCP.  When she went to the PCP I would make my appointment for the same day (same doc) that way we killed two birds with one stone. 

Now, some of you may have patients that you care for that are able to do for themselves, so if it is possible, check with your area aging counsel and see if they can schedule pick ups and drop off of the patient to go to doctors appointments.  We have a company here that we can use to pick the patient take them to their designated location and come back and pick them up and take them back home.  Contact your health insurance and see if this is eligible to help with doctors.  Through Medicare, only 9-1-1 ambulatory services are covered. However; in certain chronic and debilitating cases, Medicare will pay for non-emergency trips, but these need to be worked out on a case by case basis.

If you can not leave the person at home, like was in my case, I contacted my Aunt Sandy in advance and she would come and sit with my grandmother when I needed to go out for my PH Appointments.  Or, I would have my neighbor sit with her while I took time to go shopping if Jerry was working.  If I wanted to go on a small vacation or weekend getaway, I would call her Son to see if he would take her, or my niece would come and stay at the house. Area Aging and medicare can set up in home visits to give you a few hours away. Check with them to see if your patient qualifies, that way you are not burning yourself out doing everything yourself.   They will come in and help clean, go shopping for the patient. Look into those resources in your area.

Daily routine, this was a life changer.  I had to work around her. As I said she had mild to moderate dementia, she went into sun-downing cycles towards the full moon period, where she would be up all night and sleep in the daytime. I would then have to change my sleep routine. It was tiring at first, but I got use to it. I had to bathe her and help her dress.  I normally would shower late at night or early in the morning.  I got her a shower chair so she could sit while I bathed her.  Now, with PH patients we aren't suppose to lift anything more than 10 lbs or anything that makes us go umpf. So, trying to lift her weight into and out of the tub was a struggle. I got a shower bar so she could hold onto while climbing in and out so that I could just be there for support.

Make time for yourself. Even if it is to lock yourself in the bedroom for at least a half an hour do it. Your health is just as important to the person you are caring for.

I learned a lot by finding different websites that I could read and see what I could do to keep myself from breaking down, while still dealing my health as well.  Depending on what you are dealing with, many of the sites have live support forums that you can chat with people dealing with the same thing you are.  Reach out and talk 😊



https://www.caregiver.org

http://caregiveraction.org

https://www.aarp.org/home-family/caregiving/info-09-2013/my-life-as-a-caregiver.html

If you need an ear or a should, I am always here to give you my experience as well, hit me up on FB 😊

Stay tuned for my next blog: Traveling 💜😊

Encouragement

The dictionary gives this as a noun

The action of giving someone support, confidence, or hope.

synonyms: heartening, cheering up, inspiration, motivation, stimulation, fortification.

So when you think of Encouragement you automatically think it needs to be for another person. But what about yourself?  Do you not feel the need to also encourage yourself?  If you don't, you should.

It isn't about just building another person up for the hope and support they need, but you too need to encourage yourself to have hope and to support yourself, and build your own self confidence. How can you encourage someone else if you can not do it for YOU! 

 Start of the day

Wake up and take a breath, stretch your arms up and out, breathe out and SMILE. That is one positive thing you have done today, congratulations. Now continue with your morning routine. Whether that is to go in and make yourself a healthy breakfast, a cup of coffee or tea, or just read the newspaper.  I say a little pray for peace and strength. I encourage myself to become motivated for the day. 

Get a rhythm going, a smile in your step and say its going to be a great day. Today I will do______  and try to do it.   

No goal is to small or large that you yourself can not accomplish it. Have confidence in yourself. 

How to build the encouragement

I have little quotes all over my house on plaques, written out or I read my Bible and look for a good passage to set my day. 

For instance: The only Journey is the JOURNEY within. This I see every morning when I wake and every night when I go to bed. It is on my wall as a reminder, that I make my own journey :-) 

Another I have:  You don't know how strong you are until being strong is your only option.  I got that plaque a few years ago from our old Race Director and Personal friend Julia, PH Patient as well.  And it is true, you don't know how strong you truly are until you face living with a disease that you have no idea how things will go from one day to the next. 

Find little quotes that will help you to stay encouraged, that fit YOU! What do you struggle with? Find a quote and paste it somewhere that you will see it daily. 

Remove Negativity

There is nothing worse in this world than a negative Nancy.  Who needs negativity in the world we live in, there is enough of it. Not only does it cause stress, but it sure does bring a person down. Try to remove the negative and turn that negative thinking into a positive. Create solutions, not problems. 

So and so said this or so and so said that and oh my what are we going to do about it? Well I'll tell you what I am going to do about it, I am going to give the person hope and turn the negative into a positive.  No matter what situation a person is in, there is always a positive side, you just have to find the right words of encouragement for the solution to their problem and run with it. 

I hope I gave you a little bit of encouragement from this blog post.  I'll be doing another one shortly, so stay tuned. 😊💜