Finding Relief After Pre-Appointment Anxiety
Last week, I had a follow-up with my pulmonary hypertension specialist. I find it hard to mentally prepare for these appointments. In the days and weeks leading up to my appointment, I start to panic, worrying about whether I seem more short of breath or if I have any signs of heart failure.
Despite my best efforts, an uneasiness washes over me, completely consuming me. I find it difficult to sleep, get out of bed, and function as I normally would. I become consumed by fear, worrying that this is the appointment when I get more life-changing bad news.
I’ve learned that these are not simple checkups, but rather are monitoring the disease. PH is a progressive disease, and these appointments are checking for any markers that would indicate my health is declining or the PH is advancing.
My boyfriend and I visit with some goats. (Photo by Serena Lawrence)
At my PH appointments, I am subjected to challenging exams, like the 6-minute walk test. My treatment plan depends on how my body responds during the test, how far I am able to walk, and how low my oxygen saturation drops. Obviously, I feel a lot of pressure to perform well during the walk test. Even the slightest decrease in my oxygen saturation or distance walked could indicate the dreaded decline.
This is where a lot of my anxiety comes from: These appointments are essentially tracking whether the disease is advancing, one of my worst fears. Because idiopathic pulmonary arterial hypertension (my official diagnosis) is an invisible illness, there are no concrete tests to see if the disease is advancing. There are few markers in my blood work, and PH doesn’t show up on scans the same way something like a tumor would. As such, a 6-minute walk test is one way used to track how well I am doing.
Although I am extremely thankful to share that my follow-up went well, I always leave my appointments with a sense of a sadness and confusion. I think this stems from knowing that with a disease like pulmonary hypertension I am never out of the woods, because PH is considered incurable and progressive. By the end of my appointment, my specialist already had started to discuss what kind of tests he would like me to undergo next time.
Living with pulmonary hypertension means that I will need to have these appointments for the rest of my life to track how my health is doing. No medication that offers a chance of remission currently exists, nor is there a medication that could make PH a more manageable chronic illness, as opposed to a life-threatening one.
While PH medications have improved greatly in the past decade, there is still a lot to be desired. I’ve seen the introduction of several PH medications since my diagnosis, but I live in Canada, where newer and less invasive medications are not accessible to PH patients. (I understand this is an issue many of us with PH struggle with worldwide.)
Despite all of the adversity and challenges, being diagnosed at a later stage of PH has certainly made me appreciate my current health. I’ve felt more confident this summer to try more activities I would have done before my diagnosis. I made sure to share with my specialist how much I have been trying to do this summer, from going to a wedding to going on adventures with my boyfriend to small towns near where we live. It is important to me that my doctor knows how much I value my life and how much I have been doing.
Petting a baby goat with little horns. (Photo by Serena Lawrence)
Just the other day, my boyfriend and I traveled to a goat farm off a highway in the town on which the TV show “Letterkenny” is based. I treasure these little adventures because they help distract me from focusing on the worries that cloud my mind. After all, it is hard to worry about what could happen when you are petting a baby goat with little tiny horns.
Feeling as if I can never get out of the dark and dangerous woods that PH has placed me in is daunting. But, for now, I can breathe a sigh of relief. Right now, things feel good. So even though I may feel scared at times, especially before an appointment, it is important that I remain hopeful, thankful, and happy, too.
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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Comments
Andrea Rice
I understand anxiety with this chronic illness but you really need 2 relax by practicing meditation, breathing exercises and try yoga 2.
I have decided 2 look at this disease as it is and not worry about heart failure, or whether or not I am due 2 pass away soon.
Currently can't work and have applied 4 disability. Also filled out a charity application at the local hospital where I live and they want me 2 start making monthly payments towards all the office visits, lab work, surgeries already had. What am I to do? Disability contacted me 2 let me know they contacted cardiology but cardiology never responded, so all this time I think disability is dragging their feet. Not exactly. So, because I have no income and my 25 year old son pays all my expenses I don't feel I should ask him 2 pay my bills. He's 2 young to be taking care of his ill mom 2 begin with. So, my only option is 2 continue 2 take my medicine and wait patiently until disability comes thru. I am in communication with disability and also a counselor at my doctor's office that has agreed to contact cardiology herself. I am stuck in the middle. Then because I live in TN this state chose not 2 extend Medicare so chances of me getting on insurance isn't happening. So, I've joined 300,000 people in this state that don't have health insurance.
Do you think I'm a little angered at all this? Sure. But it's not going 2 get the better of me. My hands are tied. If death comes knocking and I do pass away I have no regrets. I'm not going 2 waste my time worrying about all this. It's not worth it.
I encouraged my son 2 move up north so he can make better money and he is in Boston and has many more opportunities for work than in Tennessee. If he had stayed he would be making $7.25 an hour and in Boston he's making well over $10 an hour.
Then 2 make matters even more interesting, I live in a 9-story high rise apartment building that has pests problems and management doesn't want 2 investigate how the pests are getting in, interested in treating each apartment only. So, in the almost 4 years I've lived here I have had flying ants, bed bugs (twice) and roaches (twice). Every pests has come and gone except the roaches that continue 2 drop in 4 visits. They carry diseases. Having PH I don't know what else is in store 4 me. I want 2 leave and be homeless living in my car. My son disagrees with me. You think I have anxiety issues with my current living situation? You bet I do.
Passing away could be the perfect escape, because dying isn't the end it's the beginning of a new life either in heaven or hell. I don't believe I'm going 2 hell so I'm getting excited that I'll be going 2 heaven instead.
Everyone has issues with life. With my son in Boston when I need 2 go anywhere with shortness of breath that makes me feel so exhausted my son pays a caregiver service which charges by the hourly rate depending on how many hours are needed. It's expensive. I need a cane or a walker, but first need 2 go 2 physical therapy which will have 2 be paid out of pocket so they can figure out what kind of prop I need. Already fell once, don't want 2 go thru it again especially if I'm out in public by myself. Do you think I have anxiety about not being able 2 afford physical therapy and getting a helping hand. What can I do?
Nothing!!!! Money makes the world go round, I don't have any money, no one out in the world is gonna donate me any money. How can I get cardiology 2 work with disability? Do I need 2 hire an attorney? So, what are the chances of survival and not death with all the cards stacked against me?
Worrying all the time with anxiety is a sure way 2 allow death 2 come knocking at your door. This illness has no cure, only treatments and trials 4 other people with PH 2 learn what can work and what doesn't work. I feel with anybody that suffers from anxiety. Give you some advice from my therapist: Take back your life. So, try and do it. I have and it will make you feel so much better even in my apartment with the roaches. So, choose wisely. The End
Anyone have any opinions, please feel free 2 send. Always interested 2 hear or read what others' comments are.
Joanne
I get anxious before my appointments too. Remember Serena, PH doesn't go in a straight line from stable to declining. If your condition worsens, your doctor can tweak your meds and/or add another. Over my many years with PH, I've worsened and improved at times. I've had 2 septostomies as well. I know Canada's system is very different from the US. Can you tell us what meds are approved to treat PH in Canada and what citizens do to urge the government to approve more? Can we in the states do anything to help our fellow PHers in Canada?
Serena Lawrence
Hi Joanne,
Sorry for my later response. Thank you for the friendly insight.
Some of the issues Canadians with PH face was highlighted in this new article on our site: http://pulmonaryhypertensionnews.com/2016/09/13/canadian-pulmonary-hypertension-patients-petition-for-public-funding-to-new-treatments
Inhaled medications have never been introduced to Canada because of cost. Newer medications like Uptravi and Opsumit were not approved for public funding, meaning majority of Canadian PH patients do not have access to these treatments.
According to CORD, "Canada is the only developed country that does not have an orphan drug legislation to support research, drug development, and clinical trials." https://www.raredisorders.ca/patients-have-waited-12-years-for-rare-disease-drug-plan/ I think this is a large reason why we do not have access to newer and less invasive treatments.
Thank you again for sharing your friendly insight with me, and for your interest in learning more about why Canadians with PH do not have access to certain treatments.
Warm regards,
Serena
Hoag
Is that all you do is complain about pH this and that? You make life with pH so hopeless and dark. I feel so depressed every time I Read your dreadful articles