Monday, November 14, 2011

PHorum Speech

I was asked to speak at a dinner of PH patients, caregivers and nurses as my role as a caregiver.  This is the speech.  

Hi my name is Jane Northrop and I a PAH caregiver for my daughter Nicole who is in the audience with her dad/my husband Rick.  I am also a Peer Network Mentor.  The PEER Network is a nationwide group of people with PAH that are currently receiving or caring for someone taking Remodulin or Tyvaso and volunteers to share their experiences with others.

PEER Network is a free program sponsored by the same company sponsoring this event which is United Therapeutics.

There's a card in your packet and I would encourage you to visit the web site or call so you can gain real-life perspectives from other Mentor's like me and learn more about what it's really like to take these medicines and how it can fit into your daily routine.

I volunteer as a PEER mentor so I can help others like I have been helped.  To connect with others so they never feel as isolated as I did when Nicole was first diagnosed.  It was several months of trying to find information about PAH and others with the disease before I finally found PHA.  I can't change Nicole's illness so I combat the helplessness by being a PEER mentor  and being a voice for Nicole whether it is on Facebook, writing on my blog, writing on the caregiving site or speaking.

For us it can be a challenge some days to fit in the four treatments of Tyvaso.  I have to plan her treatments around whatever activities we have for the day which determines if we have to take it with us or not.  So far we have managed very well and rarely do we not get in the four treatments.

We live in Longwood which is between Orlando and Daytona Beach.  Rick works with his brother at an auto-repair shop.  I homeschool Nicole who is 17 and in 11th grade.  I am enrolled it the pharmacy technician program through Penn-Foster which is a distance learning school.  I enjoy cross-stitching, crocheting, reading and writing.  Nicole is a very talented artist and photographer.

I have noticed as far back as 2 years old that Nicole would struggle to breathe after exertion.  Her doctor told me everything was fine.  He would also imply that I was paranoid and over-protective.

Her fingernails have been purple ever since I could remember.  At 6 years old she was diagnosed with exercise induced asthma.  She also has severe allergies to dust mites which she took weekly shots for two-three years.

In 2009,  I started noticing that she was struggling more with exercise.  She didn't have the stamina to ride her bike and would stop and rest.  She would also put her hand on her heart.  Honestly, and I feel so bad for feeling this way, I thought she was being lazy and didn't want to exercise and/or being over dramatic. I wish that I had taken her more seriously.

On Jan. 21st, 2011 I took her for an annual check up.  I was going to get answers for her purple fingernails and her shortness of breath.  The first thing the doctor did was put a pulse ox on her finger which read 79.  He thought his machine was broke so he  got another one and it read 82.  I will never forget when he said "this isn't good."  He said he would set up an appointment for me with a cardiologist.  That afternoon I  got a call from the cardiologist.

On Jan. 22nd, 2011 we saw the cardiologist for an EKG and echo.  It was at this time that she was diagnosed with a large VSD (a hole between the right and left ventricle), Eisenmenger's and PAH.  I don't remember much of what the doctor said.  I remember thinking, okay, I wasn't crazy all these years.  I also thought we could "fix" everything.  I felt like I was kicked in the chest that day and that our whole world collapsed.  I felt this way again a few days later when I received the report from the doctor which said things in it that he didn't tell us at the appointment.  I knew in this moment that this wasn't going to be "fixable".  A word about pulse ox's.  All it took was a pulse ox reading to get her to a cardiologist but these aren't routinely used at a doctors appointment.

On Feb. 2nd, 2011 we had the right heart catherization which confirmed that she had severe PAH with pressures around 90-100.  She was kept overnight to monitor her blood pressure and started on Revatio.  We left St. Joseph's  in Tampa with O2 and an appointment with a respiratory therapist when we got home.

In August she was referred to the Heart and Lung Transplant Center at Shand's Hospital at the University of Florida in Gainesville.  The doctor decided to change her meds in hope of a better "quality of life".  I really dislike this statement because to me it is void of hope.  We would switch from Revatio to Adcirca for convenience, Tracleer to Letairis as he thought this would be more beneficial and Tyvaso as an alternative to the IV meds.

I think the first and most dramatic improvement I saw upon starting Tyvaso was the change to her breathing.  She didn't seem to breathe so hard and struggle so much.  Her stamina has improved also.  Overall, I am very please with the results of Tyvaso.

When I called the Adcirca program from their co-pay card to ask about Patient Assistance for cost of the medication I was told it wasn't offered for minor children because the drug wasn't approved for minors by the FDA and they didn't want the liability.

I had previously spoken with another Peer mentor, Colleen, who I was also facebook friends with as well as on an online support group through PHA.  I was so upset that I sent her an email venting my frustrations at both Adcirca and United Therapeutics.  She asked is she could forward it to her contact at UT.  I said "sure" and forgot about it.  A couple of weeks later I  received an email from a senior VP within UT.  My email to Colleen had landed on his desk.  He wanted to know what he could do to resolve the problem.  I had already decided that Nicole would stay on Revatio as I wasn't going to go through all the stress for a drug of convenience.  A phone conference was set up with the VP.  A week or so after my phone conference I got a call from Adcirca telling me that they had changed their policy and they would now offer assistance for minor children.  I asked if this applied to everyone or just to Nicole and she said everyone.

In January I received an email from another VP in UT asking if he could have a phone conference with me about my interaction with the other VP.  UT has an annual Global Sales Meeting where they invite a patient that has been helped in some way by UT.  They asked Nicole to be that patient.  They wanted us to surprise this VP by appearing at this meeting which was in Honolulu.  It was a wonderful experience and one my family with always remember.

 As a caregiver we have a different set of issues that the patient does.  We have to watch our loved one be sick and suffer side effects from medicines etc.  The loss of expectations for that person and their life.  Being on call 24/7.   Also the feelings of responsibility for their care and well-being and for me the feelings of guilt.

There's the loss of social activities.  I can't make the commitments that I use to because I don't know what Nicole's day will be like.  I have to tweek a lot of things every day just to work around how Nicole feels, I also don't have the time to do the things that I enjoy as much.

With my experience with UT and our medication issues I learned that one person can make a difference.  We must keep fighting for our caree.  We must keep hope and faith in a cure for PH and for the treatments that we have to fight the disease.  We must never give up.  Sometimes I feel like a meany or a pest when I call the doctor's so much that they know my voice and I don't even have to tell them who this is.  I will continue to fight for and be a voice for Nicole for as long as I am here to do so.  Do I get tired and want to give up?  Absolutely, some days are lousy and I feel that I just can't continue but each day is a new day and we can start all over again.

For caregivers we carry a lot of stress and the weight of the world is on my shoulders some days but for me I have to have faith and hope in God.

Earlier this year I entered an essay contest on facebook for a page called PHAmerica Honors that was created by Brenda Reynolds whose niece lost her battle with PH at 22 years old.  She remains a voice in the PH community in honor of her.  She with PHA had this contest to choose ambassadors to spread awareness for PH. There were six categories or so stemming from children, newly diagnosed, caregivers etc.  I was encouraged by a couple of facebook friends to enter so I did and my essay won in the caregiver category.  They also made Nicole honorary ambassador for her age group because they had no entries.  The judges felt a mother/daughter team would be cool.

 I will close with a quote from this essay " I must remain positive for no other reason that for Nicole. I will always be her voice and advocate no matter how old she is.  I will be with her every step of the way on this journey holding her hand.  Every day cherish the moments that you have and look for the good in them.  I wish more people (including myself) would  realize this before they or a loved one are faced with a serious illness."

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