In the winter edition of Community magazine, we conducted two separate interviews with Pulmonary Hypertension patient Amanda Harvey-McKee and her doctor, Murali Chakinala. We asked them to individually discuss Amanda’s diagnosis, and how they’ve spent years increasing awareness on PH.
Interview with Amanda Harvey-McKee, patient of Dr. Murali Chakinala
I was a biomedical research lab manager at the time of my diagnosis. At that time, not a lot of people knew what pulmonary hypertension was. We didn’t know what the treatment was (for a person who had PH secondary to a blood clot), what the diagnostics were, it was all very new. Things have changed in the past eight years, but back then, not a lot of information readily available.
At that moment of diagnosis, you’re trying to figure out what it all means, trying to define the big words – it’s a lot. And I even felt like I had an edge of other patients because I did come from a medical background, but in that field at that time, there just was not a lot of information about PH. So I started at zero like everyone else.
My primary care physical said that Dr. Chakinala was the person I needed to see. He was the expert in his field, the up-and-comer, and he was who I needed to talk to.
When I first saw Dr. Chakinala, he had a resident with him, and I fully appreciated that. But when you’re in the patient chair and not the teaching chair, it puts things into a very different perspective. It was very frustrating to me to sit and listen to them argue over pressures and counts and scores and tests and numerical values when ultimately I just wanted to know what I was supposed to do with this disease.
I left Dr. Chakinala’s office with him telling me I didn’t need to be considered for a very complicated surgery (PTE-pulmonary thromboendarterectomy) at that time. So just as I was wrapping my mind around the possibilities of a new game plan, a few days later, he called me at my home and said I needed the surgery. That completely irked me, to be honest. So after our first meeting, and that phone call, I felt really disheartened by the whole healthcare system. It added further confusion and frustration and meant that I needed to start preparing for what would inevitably be a life-altering procedure. It was too much and I went into a bit of denial. This turned out to be a mistake on my part, because Dr. Chakinala did the right thing: he went back to review everything again, seeing that my situation wasn’t straightforward. And ultimately, he was correct in the decision that I needed the surgery sooner rather than later.
I told Dr. Chakinala, “Thanks but no thanks, I’ll call you if I need you.” And after a while, I did.
I went into heart failure and knew that I needed the surgery, so I called Dr. Chakinala, told him I needed a referral and he said no problem. I’m grateful that he was still willing to take me on as a patient.
After my surgery, I started at ground zero with him. I told him I wanted to get involved with PH, and he introduced me to a few people, and we started a PH journey together, so to speak.
I became a support group leader, and he became my go-to person for any medical question or patient question. He was, and continues to be, very accessible to me. I’m very respectful of his time and status, but if I email him, he’ll get back to me right away.
I’m very fortunate to feel this level of security, just because my doctor is available when I need him. So from a patient perspective, and a support group leader perspective, Dr. Chakinala has really been invaluable to what I’m trying to do as an advocate for this disease. It’s a good relationship in that way. I had to let go of my controlling nature and have faith he was putting me first as a patient. Since then, we have open communication, where I can ask questions and voice concerns without judgment and know I’ll receive honest answers. This leads to me being more involved with my care and allowing him to help me do so. Trust, it comes down to trust.
Interview with Dr. Murali Chakinala, doctor of Amanda Harvey-McKee
Our history as a patient and doctor has evolved quite a bit over time. When Amanda and I first met, she was already in my opinion quite sick and I thought she needed to go down a certain path in terms of treatment, which I’m sure was daunting and scary for her. But I did feel that a proven, surgical intervention was the only treatment for her.
I met her when she was young, working, recently married – she was trying to lead a busy life and telling her she needed evasive surgery wasn’t what she wanted to hear.
So no, we didn’t really have a solid relationship to build off of. Our immediate reaction to each other wasn’t the best. And at the time, she said she didn’t want the surgery, and we ended up not communicating for about a year. When I did see her next, her health was much worse and I reiterated my recommendation and she went and had the surgery.
Her recovery was long and rocky. She nearly didn’t survive. But she kept fighting and managed to pull through rather well. Now she’s doing great, a new person in terms of how she feels and what she’s able to do. She’s extremely committed to the Pulmonary Hypertension Association cause. She’s also fully aware about how lucky she is and how unlucky other patients are, so she’s doing what she can to give back and act as a resource for patients in need.
Her and I have acted as partners in a lot of ways, in terms of her leading grass roots efforts to help other patients. She leads the support group meetings, and I try to be a medical resource for those groups. I send patients to her support groups, and she recommends patients to me from the support groups, so we really try to help each other out.
When I reflect back on all of this, I think Amanda and I would’ve done things differently, but I learned a valuable lesson. I was a young physician and I knew what she needed but I think I was a little too blinded and focused on the treatment and not thinking about what it meant to the patient and how much her life would be affected. And clearly I didn’t sense that she wasn’t prepared for that kind of news. Instead of coming on a little softer and introducing the idea while building a relationship of trust, I was more unilateral with my opinion.
The lesson I learned is that there are treatments that we know a patient needs, but as a physician, we have to respect a patient’s decisions and ways of thinking.
That’s the difference between being a doctor who has got the initials in front of their name and a healer, someone who is really trying to help the patient. We can’t distance our patients, we have to cultivate the relationship and bring them along.Posted in Caregivers, Featured | Tagged Caring Voice Coalition, CVC | 2 Comments January 15, 2013
We have a 9-year-old daughter, Zoe, who up until September of 2012 had always been healthy, active and full of energy. At last year’s first soccer practice, Zoe was having trouble keeping up. Her face was red, her eyes and mouth were a pasty white; you could see her struggling to take a full breath.
Because, I am a home health nurse, I took her vitals and recognized right away that her blood pressure was elevated, oxygen levels were low 90’s and high 80’s, pulse was rapid, etc. During this whole episode, she was talking and wanting to eat. Her vitals soon resumed to normal.
We took her to our local doctor who told us her heart sounds were not normal and that an appointment need to be made with a pediatric cardiologist as soon as possible. Zoe continued to have mild episodes as described above, so we decided to take her to a pediatrician who was unable to find anything wrong. The next week, Zoe’s oxygen level dropped to the 80’s at school, so we took her to the pediatric group again.
There we saw a nurse who was immediately alarmed and called in the doctor that was working late sick call. They listened. When we left that night, the doctor told us what she believed the Zoe’s diagnosis would be: Idiopathic Pulmonary Hypertension.
Two days later, we were at Arkansas Children’s Hospital, where Zoe was prescribed medication to help combat her illness. Day’s later, it was suggested to us that we contact Caring Voice Coalition to see if they would help alleviate some of the financial burden of the medication.
My husband and I have talked about miracles and just truly believe CVC’s assistance was our Christmas miracle. We know in some ways that we have been fortunate – years were not wasted getting a diagnosis for this horrible disease, as it is for so many. We were put in the right place at the right time to see doctors and nurses who truly listened to what we were saying happened to Zoe at times, even though they could not see it happen in the office setting. They, like CVC took the time to care enough to listen and find a way to help.
“Thank you” is not enough to describe what we feel and think, but please know we will never forget or fail to see the significance of CVC’s gift.Posted in Caregivers, Diseases, Featured | Tagged Caring Voice Coalition, CVC | Leave a comment January 10, 2013
Managing the wide array of medications an older loved one takes is one of many family caregivers’ primary responsibilities. But this can be a complicated task – and mistakes can happen when you least expect them.
Have you made one of the three most common medication mistakes?
Medication Mistake #1: Making Pills Easier to Swallow
Check with the pharmacist before you change a pill in any way. Certain medications given once a day, for example, are designed to have a timed release that occurs gradually throughout the day. Crushing them or cutting them in half could alter the way the drug is released, resulting in the person getting too much at once or none at all. If swallowing pills is a problem, ask the pharmacist if the medication can be provided in a smaller tablet or in a liquid form.
Medication Mistake #2: Filling a Pill Organizer Incorrectly
A 2011 study by Northwestern University’s Feinberg School of Medicine found that 60 percent of caregivers made errors when sorting medications into pillboxes, which speaks to just how complicated sorting multiple drugs with various timings for delivery can be.
Consider asking the pharmacist if he or she will sort the pills for you when prescriptions are filled. Some will do this routinely, while others will demonstrate it a few times to show you the best way to get started.
Medication Mistake #3: Storing Medications in “Typical” Places
Many people routinely store their medications in the bathroom medicine cabinet, but temperature changes and moisture levels can alter the medication once it is opened. Be sure to read the packaging on prescription medications for storage instructions.
For more information on managing your loved one’s medications, visit www.liftcaregiving.com.
Katie Gilstrap is cofounder of Lift Caregiving.Posted in Caregivers, Featured, Media Center | Tagged Caring Voice Coalition, CVC | Leave a comment January 4, 2013
Would you be willing to take a moment and share your story with us, and how you came to Caring Voice Coalition? Continue reading →Posted in About Us, Featured, Media Center | Tagged Caring Voice Coalition, CVC, Share Your Story, Support | Leave a comment January 3, 2013
Often accompanied with a rare disease is an overbearing sense of isolation. Our patients are often left thinking that they are alone in their fight. But as many of our active patients will attest, social networking can help curb your solitude. By logging onto our Facebook and Twitter sites, you can interact with others who have your disease. On our Vimeo site, you may find solace in one of our patient’s stories. There are others out there like you, and we’re here to bring you together.
Posted in Featured, Media Center, Uncategorized | Tagged Caring Voice Coalition, CVC, Facebook, Social Media, Twitter, vimeo | Leave a comment ← Previous post