OUR JOURNEYS

Caregiver Story

Craig Courtney

The Journey of One PH Family

I hope no other parent or caregiver has to go through the events I have had to endure. However, I would imagine several have. This is a story of a young man with aspiring potential, only to see his future lead to dread and tragedy, and then to one of hope. Although this story is a sad one, it is really a story of community strength. It is also a story of caregiver determination, but not without the support of the Pulmonary Hypertension Association (PHA).

"This PH family can and does reach out and touch everyone…and it has done that for me and my son. The PH family is helping keep my son alive today."

- Craig Courtney

The focus here is not one of sorrow or soliciting sympathy but one of love, caring and togetherness. All those who come in contact with PH become part of a family--a family of support, resourcefulness and hope. This PH family can and does reach out and touch everyone (caregivers, patients, doctors, nurses, pharmacists, social workers, prison officials and Members of Congress), and it has done that for me and my son. The PH family is helping keep my son alive today.

Matthew Graduates High School and Heads to College

Matthew liked to play basketball as a boy and young adult. He is 6' 4" tall. He had a soft touch, with a good jump shot, to compliment a strong inside game. But his specialty was defense and blocking shots. In addition, he was an excellent student. As his father, I had visions of Matthew being a Rhodes Scholar. He graduated high school with Honors and was accepted to three University of California schools. He was good in all subjects but especially liked US history and philosophy. His favorite philosopher was Nietzsche.

As a result of circumstances, Matthew instead enrolled in the Honors program at a local community college in September, 2006. Unbeknownst to me at the time, Matthew disliked the community college. Then, he got involved with drugs and became a daily marijuana user. He did well his first semester, but struggled to complete the second semester. His money supply ran out in the summer of 2007 and he resorted to unlawful activity. He was arrested in March 2008, dropped out of college and entered drug rehabilitation for four months while out on bail. Matthew was arraigned in September 2008.

Shortness of Breath and Diagnosis

In October, 2008, Matthew started to experience shortness of breath. I was playing basketball with him and he had to quit after 5 minutes because he "couldn't breathe". Matthew delayed seeing the doctor until his mother noticed he had difficulty walking up a short hill after getting the mail. In May 2009, Matthew saw his health maintenance organization (HMO) primary care doctor, who said he was probably feeling anxious about his upcoming court appearances. He was put on anti-anxiety medication. In June 2009, Matthew and his attorney accepted a plea arrangement with the District Attorney (DA) for 32 months in the state prison. Not knowing why, I shook the DA's hand after Matthew was sentenced. My father once told me to always shake the hand of someone who can influence your life or business. Later, it may have proved helpful. 

"What followed was a myriad of Computerized axial tomography (CT) scans, chest X-rays, arterial blood oxygen test, a six minute walk test (MWD), EKG (where the technician was almost hysterical), a lung ventilation/perfusion scan (VQ) scan and Matthew's new dislike for hospitals."

- Craig Courtney

By July, 2008 Matthew started getting swelling in his feet, indicative of the onset of right heart failure. He went back to the same doctor, who ran an electrocardiogram (EKG). The EKG showed a strain in the right heart area. What followed was a myriad of Computerized axial tomography (CT) scans, chest X-rays, arterial blood oxygen test, a six minute walk test (MWD), EKG (where the technician was almost hysterical), a lung ventilation/perfusion scan (VQ) scan and Matthew's new dislike for hospitals. At the hospital, Matthew walked out of the waiting room within minutes after the EKG technician ran by saying, "stay right here, I'm going to get the cardiologist." I asked him why he did that and he said, "I just wanted to go home." A few days later, after more tests at the hospital, the doctors wanted to admit him because his oxygen saturation was between 88 - 90. What was to become a pattern of future behavior, Matthew checked himself out of the hospital at 1 AM. In the middle of the night, a normal 15 minute walk to my townhouse took him 45 minutes. I asked him, "Why did you leave the hospital?" He said, "Dad, I just want to be home and sleep in my own bed." All those tests culminated with the ominous right heart catheter. His results were 90 mm Hg in the pulmonary artery, but that went down to 80 mm Hg with inhaled Nitric oxide on August 5, 2009. I called my brother who is a MD and works in a hospital where he sees death a lot. I asked him what these results meant. All he could say was, "I'm sorry....”

A New Normal: Managing Life with PH 

"His PH doctor has been great and has gone above and beyond the call of duty on several occasions."

- Craig Courtney

Matthew met with his new doctor, a pulmonary hypertension (PH) doctor whose title was Critical Care Medicine at Kaiser Permanente near downtown Los Angeles on September 10, 2009. His PH doctor has been great and has gone above and beyond the call of duty on several occasions. I will never forget that first appointment. The PH doctor said that treprostinil was the preferred medication because of the severity of Matthew's PH. But, because of Matthew's pending incarceration, he suggested he start with an oral medication: 5 mg of ambrisentan, furosemide (diuretic) and warfarin (blood thinner). Matthew joined the LETAIRIS Education and Access Program (LEAP) program. ACCREDO in Philadelphia administered the ambrisentan monthly by mail after Matthew's liver function tests were performed. MedImpact, through Kaiser Permanente, was the pharmaceutical insurance company that paid the $6,000 per month ambrisentan bill. I only had to pay a $30 monthly copayment. 

I have gotten to know ACCREDO very well; they have been extremely helpful. I do not believe Matthew would have agreed to the treprostinil anyway. The PH doctor did mention a lung transplant in passing. Matthew's 6MWD was 1,000 feet prior to taking the ambrisentan. There were more doctor visits: the geneticist, an infectious disease doctor, a liver specialist and a rheumatologist. By November 2009, Matthew was diagnosed with idiopathic pulmonary hypertension and interstitial lung disease. In the last two months before this official diagnosis, the swelling in Matthew's feet got worse. This really bothered him. Matthew could live with the limited exercise capability, but the swelling in his feet really aggravated him. He was given a stronger diuretic, metolazone. The ambrisentan also seemed to contribute to the feet swelling. Matthew's ALT and AST liver enzymes were 1.5 times the upper limit. Now I was getting concerned.

Matthew’s Journey Takes him Through Ups and Downs

However, in the next 11 months Matthew's condition stabilized. Nevertheless, I knew from reading on the PHA website that PH was a progressive disease. I met with the same DA with whom I had shaken hands and told him about Matthew's PH. He understood my concern because he had a son fighting in Afghanistan. He said he would approach the head DA about an alternative to prison. Several weeks went by and I found out my DA "friend" was transferred to a new location. I heard through the grapevine he fought "too hard" for Matthew with the head DA. The tough-on-crime contingent in California had won. Two years later that same contingent would be put to shame by the US Supreme Court.

"By the fall of 2010 Matthew was playing tennis. Although he got winded fairly quickly, he boasted of having "an Andy Roddick serve," however the "euphoria" soon changed drastically."

- Craig Courtney

As Matthew was waiting to be incarcerated, his PH doctor wrote two letters about Matthew's PH condition on October 7, 2009 and November 25, 2009. Matthew's attorney presented them to the judge. I spoke directly by telephone to the head DA myself. She kept asking me why Matthew wasn't in prison already. She considered an alternative to prison for Matthew briefly, but in the end she didn't care about his PH. My only regret was that I did not meet the head DA in person. In the meantime, Matthew started on revatio as a supplement to the ambrisentan in about April 2010. The drug combination helped Matthew over the next six months. His pulse dropped from 130 to 90. ALT and AST liver enzymes dropped to just below the upper limit. His 6MWD was up to 1,700 feet. His oxygen saturation was in the mid-90's and by the fall of 2010 Matthew was playing tennis. Although he got winded fairly quickly, he boasted of having "an Andy Roddick serve," however the "euphoria" soon changed drastically. 

Matthew was taken into custody by the CA State prison system on November 30, 2010. Before Matthew was cuffed, the bailiff let me give Matthew a hug. His hug was very firm. I sensed he was understandably scared. This would be the last hug with Matthew for the next 15 weeks. The next hug would be under entirely different circumstances. He handed me his wallet and sport coat, before he was led away. Oddly enough the new female DA, who rejected Matthew's motion to withdraw (his) plea (with the judge agreeing) was weeping in tears. Perhaps this was foreboding. I also believe she cared about Matthew, but to preserve her job, she had to acquiesce to her superior's tough-on-crime stance. Matthew's attorney said the judge may have reconsidered if Matthew required hospitalization for his PH. That turned out to be prophetic. 

A Caregiver’s Role: “Always be Prepared”

"That would be the last time I would see Matthew for three months. His condition would be a lot different the next visit."

- Craig Courtney

Nevertheless, one of many things that the PHA website taught me as a PH caregiver was to always be prepared. That October, I typed up the list of 5 medications and their dosage for Matthew and had his attorney insert it in Matthew's court file. I also gave a copy to Matthew on the way to his last court appointment on November 30, 2010. That was great advice because within 36 hours I received a call from a nurse at the infirmary at the Twin Towers Jail in downtown LA where Matthew and his court file were transferred in the middle of the night. The nurse was almost frantic about Matthew's PH and his high uric acid levels. He and the doctor didn't understand PH at all. The next day I met the nurse, shook his hand and dropped off a 10-day supply of Matthew's revatio and ambrisentan. I followed the same procedure 10 days later. I visited Matthew on December 14, 2010 and I was only able to talk to him through glass over a telephone. That would be the last time I would see Matthew for three months. His condition would be a lot different the next visit.

On December 18, 2010 Matthew was transferred to a reception center at LA County Prison in Lancaster, CA. Almost immediately, Matthew was transferred to the prison hospital. This was to become probably the worst part of prison for Matthew: being in the hospital! He just wanted to be a normal 22 year old. If he had to be in prison, he wanted to be in the general population. 

I received a call from the same nurse the day he was transferred and he gave me a pharmacist contact at the prison. When I called, the pharmacist had already been briefed by the Twin Tower Prison nurse. She said to meet her at the prison's visitor center. I put on a sport coat and slacks and drove 75 miles that same day to bring a 30-day supply of ambrisentan and revatio to Matthew. Lucky for me, it was Saturday, December 19, 2010. I was let through the front gate and when I persistently explained to the five big, armed guards at the visitor center what I was doing, they looked at me like I was crazy. They said, "You don't understand! This isn't jail, this is PRISON! NOBODY brings medication here!" The guards were standing over me now. Medication transfers from the "outside - in" had never been done before. I gave the guards my pharmacist contact's name. Now they were puzzled, but they reluctantly called her telephone extension. They got her on the line, gave the phone to me and they listened intently to every word I said to her. One of the pharmacist's assistants came out to the visitor center and he explained to the guards the reason for the medication transfer. Ambrisentan cannot be obtained from just any pharmacy. 

Thirty days later I followed the same routine, but this time was not allowed to enter the prison's front gate. It was a Friday and they only allow visitors on the weekend. So my pharmacist "friend" drove out to the front gate for the ambrisentan transfer. This was the first time I met her after several telephone conversations; I shook her hand vigorously. The prison was able to get the revatio rather quickly and the pharmacist had already started the wheels in motion to have the California Department of Corrections and Rehabilitation (CDCR) pay for the ambrisentan. Additionally, the doctor who was not familiar with PH, had to get enrolled with the LEAP program. I worked with the PHA and they sent a medical information packet to the doctor. During Matthew's brief stay in Lancaster, the pharmacist was so helpful that I wrote a letter of commendation about her to Governor Edmund Brown. 

Matthew’s Transfer Brings New Challenges

Matthew was transferred to California Men’s Colony (CMC) State Prison in San Luis Obispo (SLO), California on February 6, 2011 and Matthew's medications were transferred with him. Everything started out fine for Matthew (as I found out later) for about 2 weeks. I regrettably learned later that he was immediately placed in the general population—probably because he requested it. For some unknown reason, Matthew contracted viral bronchitis as he told me later. His oxygen saturation went down into the 80's and his right heart was struggling real badly, he became very fatigued and he could barely walk. I found this out from the medical social worker on March 7, 2011, who said Matthew was now at the prison hospital. That would be the last place Matthew wanted to be.

"Unfortunately, these stubborn expressions by Matthew show his difficulty accepting his PH."

- Craig Courtney

I made hasty arrangements to drive 200 miles to visit Matthew on March 12, 2011. Strangely, he denied my visit. I spent the night in SLO and went to visit him again. I was so glad to see my son, but I didn't expect Matthew to be in a wheelchair and on oxygen. The guards wouldn't let him stand up, but I hugged him anyway. He told me he refused my visit because he didn't want to be seen in a wheelchair and on oxygen. However, the doctor at the prison hospital wouldn't let Matthew have a visit under any other circumstances. In an act of defiance, he told me early in our visit that he had a prison mate turn off his oxygen, but he still kept the tube in his nose. At the end of our visit, he boldly took off his oxygen tube, stood up, and walked to the guard station to retrieve his visitor pass. He was almost combative with the guards and I actually intervened. Unfortunately, these stubborn expressions by Matthew show his difficulty accepting his PH. Matthew got back into his wheelchair and put on his "oxygen" tube. A prison inmate helper reassuredly patted Matthew on the shoulder and wheeled him back into the prison hospital. The next time I visited Matthew, he was able to walk, albeit slowly, on his own accord. Many of the other inmates who had visitors greeted Matthew as he walked by. They were quietly cheering him on. I later found out that Matthew was supposed to be on oxygen and in a wheelchair during that visit. I was soon to learn that there is a community of support among the prisoners. It's not all about fights and unrest. On my two subsequent visits to the prison, I have bought sodas for all those prisoner visitor helpers. Some did not even know why, but they looked at me with an appreciation that I will never forget.

Craig Reaches out to PHA for Help and Hope

I had stayed in contact with the PHA all this time. Margaret, Debbie and Elisabeth have been great. When I told them about Matthew's condition, they said they would send a letter to the prison on Matthew's behalf. I gave them the address of the medical social worker at CMC. This was an excellent letter on PHA letterhead and signed by the President of the PHA, Rino Aldrighetti. The letter stated that Matthew should be seen by a PH specialist and gave two such doctors, one in Torrance and another one local in SLO. This letter made its way up to the chief medical officer (CMO) at CMC. Within four weeks Matthew was seen by the local PH specialist in SLO. Matthew was given a thorough examination and had another right heart catheter test. I spoke with the doctor by telephone after Matthew's visit. He was extremely helpful and gave me a complete synopsis of Matthew's PH condition. Unfortunately, his right heart pressures were still high and his heart's capacity had been significantly curtailed. He was only able to do 250 feet in the 6MWD. Matthew was devastated by the news, and especially that treprostinil was now the obvious medication for him--even his Kaiser PH doctor agreed. Although epoprostenol sodium might be a little better, it was doubtful that the CMC hospital could "handle" it. What Matthew needed now was some empathy.

"As a caregiver, I have learned to take care of myself; I cannot allow myself to become consumed. I play golf, tennis and go to the gym….I also have a full-time job that has not suffered through all this--my boss has always been very supportive. I also have a part-time job being Matthew's caregiver. Much is out of my control and I understand that."

- Craig Courtney

Coping and Growing as a Caregiver

The PH doctor was in communication with the CMC doctor. He felt the treprostinil could be managed at the CMC hospital, however it would have to be approved by the CDCR headquarters in Sacramento, which was another big hurdle. Convincing Matthew is also a challenge, or I should say Matthew needs to convince himself. The thought of wearing an infusion pump administering the treprostinil subcutaneously on his abdomen is very difficult for Matthew to accept. Nonetheless, I realize Matthew wants to be in control of his medical care. And I told him I support his decision to wait on the treprostinil. Any other response from me would just alienate Matthew. As a caregiver, I have learned to take care of myself; I cannot allow myself to become consumed. I play golf, tennis and go to the gym. I am reminded I also co-parent a 15 year old. This is not lost on me. I also have a full-time job that has not suffered through all this--my boss has always been very supportive. Now I also have a part-time job being Matthew's caregiver. Much is out of my control and I understand that. I write letters to those of influence, including letters to the CMO requesting compassionate release or medical parole for Matthew. I talk to the medical social worker weekly. My brother, the medical professional, said during a conversation, that, "Matthew has a less than 50/50 chance to live another 5 years. Start your grieving now."

"Nevertheless, I'm not going to give up advocating for Matthew. I am also not going to give up advocating for others afflicted with PH."

- Craig Courtney

Well, I have been grieving my son's many losses going back to him dropping out of college years ago. The grieving has brought me peace and acceptance. Nevertheless, I'm not going to give up advocating for Matthew. I am also not going to give up advocating for others afflicted with PH. With the help of the PHA, I wrote a letter to my Congresswoman. She actually replied to me, saying that she was in support of heart and lung research. The PHA referred me to the prison law office in Berkeley, CA. I called them and an attorney who said she would help me if I felt Matthew wasn't getting the appropriate medical care.

As of today, Matthew is still in the CMC hospital. He told the doctor recently he wanted to be back in the general population. The doctor said he would only agree to it if Matthew stayed on oxygen full time. Well Matthew remains in the hospital and, in fact, is watching one inmate die every month. His fellow infirmed inmates in the hospital helped support a 48 year old lifer who was dying of stomach cancer. Matthew led prayer vigils for him. Matthew also spent hours talking to his dying inmate about his friend's many happy and joyful experiences that he had had in his life. Through this whole experience I have felt a positive sense of humanity. I thank the PHA and all those I have referenced above who have supported me and Matthew.

 

FacebookGoogle +TwitterLinkedInPinterestInstagramYouTubeBloggerFeedsPHAware Download our App

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2014 Pulmonary Hypertension Association. All Rights Reserved.

NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.