Photo By Rebecca Perron | 171107-N-GM597-004 Virginia Beach, Va. (Nov. 7, 2017) After reading a resolution that...... read more read more
Nick Sharp, a 12-year old patient at Naval Medical Center Portsmouth, received a resolution from Virginia Beach mayor Will Sessoms during a city council meeting on Nov. 7 that names November as Pulmonary Hypertension Awareness Month in Virginia Beach.
Nick is the son of Aviation Structural Mechanic 2nd Class Matthew Sharp of Strike Fighter Squadron 11 at Naval Air Station Oceana, and his wife, Nicole.
Pulmonary hypertension, or PH, is a condition that causes high blood pressure in the lungs. PH patients experience symptoms such as shortness of breath, dizziness and fatigue, and the severity of symptoms usually correlates with the progression of the disease.
Diagnosed with the condition two weeks prior to his second birthday, Nick has recognized that not many people may know about the disease. He wrote a letter to the City of Virginia Beach to ask for the resolution to help bring awareness.
In the letter, Nick wrote, “The Pulmonary Hypertension Association uses November as the awareness month for PH. I was writing you today to ask if we could make November Virginia Beach's official Pulmonary Hypertension Awareness Month. It would really mean a lot to me and the other people with PH if we could do this. It's important to me to spread awareness so that people get diagnosed sooner.”
After he received the resolution, Nick said this was an important moment because “PH is a rare disease and not many people know about it unless they have it. It’s really cool that my letter made this happen. I’m excited.”
His parents said they were proud of their son for his efforts.
“I’m very proud of him being courageous enough to step outside of his personal comfort zone in order to spread awareness and help other patients know they aren’t alone,” Nicole said.
“Because the condition is rare, sometimes doctors have a hard time identifying it,” Nick said in the letter. “PH makes it hard for me to breathe and be able to keep up when playing with my friends. I have to wear oxygen sometimes when it gets too hard to breathe because my lungs are very damaged from having PH for such a long time.”
For Nick, his version of PH means the arteries that bring blood from his heart to his lungs do not expand and allow blood to flow through, so the blood backs up in his heart. Doctors believe this condition was caused by the congenital heart disease he was born with.
Nick said that in dealing with the disease, taking his medicine “is the easy part, but when it’s harder to breathe, it’s hard to regain it. This is the hardest part of dealing with PH.”
The average length of survival after a PH diagnosis for children and adults is 2.8 years if they are diagnosed but are not treated. Nearly 10 years after his diagnosis, Nick is considered a long-term survivor thanks to advances in medication and other treatment protocols. For many, the disease requires lung transplants and sometimes heart transplants as well.
“It breaks my heart knowing that he has this condition,” Matthew said. “We try to give him the best quality of life, but we have to stay on the medicine regimes and keep up with the appointments, which can get frustrating for him. It can be frustrating for us because as a family, we have to plan around his treatment schedule. If we are going somewhere, we have to think, do we have this medicine with us and what time is he getting it and what we can do between here and there. It’s just really tough.”
Currently, Nick receives care through the Pediatric Subspecialty Clinic at NMCP, as well as the at the Children’s Hospital of Philadelphia (CHOP) because of the world-renown experts in PH who are on staff there.
“For certain conditions, there are centers of excellence where they are not just pediatric subspecialist, but pediatric sub subspecialist who have devoted their life to a very narrow field of pediatric care,” said Lt. Cmdr. Michael Mattingly, one of NMCP’s pediatric cardiologists and Nick’s doctor. “They have experts in many kinds of disciplines for the purpose of caring for the special needs of that patient population. For us to have the flexibility to connect our patients with that kind of care is a real benefit for those with such rare conditions.”
“I couldn’t be happier between Portsmouth and CHOP – they work great together,” Matthew said. “Dr. Mattingly is always there for us – whether we need a referral to CHOP or a quick check up here. It’s been very, very smooth. Everybody at NMCP has made it virtually seamless between receiving care through both facilities.”
“It’s good (that I see Dr. Mattingly) because he knows what he’s doing,” Nick added.
Nick has appointments every three months at each facility, so he alternates appointments and is seen every six weeks by one of his pediatric cardiologists. Locally, Mattingly serves as Nick’s first line for cardiology concerns and communication.
“He has a team of doctors at CHOP who do things like routine lab work, endurance tests, cardiac catheterizations, sometimes biopsies and other types of imaging at his routine appointments,” Mattingly said. “They come up with a plan for his medical treatment which they communicate back to me. I’m the cardiologist here who can coordinate with his other specialty care he gets in the area. If he were to go to the emergency room, I’m the cardiologist they can call to discuss treatment and I can admit him at NMCP for further treatment under my care. I also might make small adjustments to his care plan developed at CHOP.”
Mattingly hopes that as advances in treatments continue, that “we will get to the point where we can effectively treat and, to the best extent possible, cure pulmonary hypertension.” Mattingly described the term PH as a catchall phrase for several similar diseases.
“There are different treatment protocols for the different type of pulmonary hypertension, and there continue to be huge advances in the types of medicines we can give to help relax those blood vessels,” Mattingly said. “There are also advances in the ways we can give them – intravenously versus subcutaneously versus inhaled. Both coming up with more effective medicines and easier ways to administer them are the focuses of many of the research protocols out there. It is a huge area of interest, especially in the way that it dovetails with treating heart failure in general.
“As treatments advance, I expect there will be big changes in life expectancy – that it will continue to increase,” Mattingly added. “Hopefully in the next 10 years, we will get to the point that patients won’t need transplants anymore, or at least greatly extend the time that they can live with their native organs.”
| Date Taken: | 11.07.2017 |
| Date Posted: | 11.09.2017 12:21 |
| Story ID: | 254793 |
| Location: | PORTSMOUTH, VIRGINIA, US |
| Web Views: | 139 |
| Downloads: | 0 |
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