What Do You Know Now That You Wish You Knew When You Were Diagnosed?

[brittany-foster]

Colleen,
A lot of doctors talk about the physical symptoms to look out for when being diagnosed with a chronic and life altering illness but they fail to talk about the mental side of an illness. I wish I knew that there would be a wide range of feelings and emotions that I went through and continue to go through with a diagnosis and with managing multiple chronic conditions. I wish mental health was talked about the same as physical health so I could feel less alone and less like there was something “wrong” for feeling depressed, anxious, or distressed. I think mental health and mental illness needs to be addressed. Not in a “your anxiety is causing your physical symptoms” way, but in a “hey, this is really hard and I want to support your mental health the best I can because it is a lot to take in and process” . I find that mental health is discussed more like a “problem” that needs correcting vs a side effect of PH just like dizziness and fatigue are.

[carol-volckmann]

When I finally found the right team, even then I had no idea what I was in for. They made so matter of fact: these are the meds and devices you are going to have so we can be very aggressive witb these diseases. What I wish I had known was how painful it was going to be the challenges I would be facing (pain, costs, how much my and my husband’s life would change and the emotional rollercoaster we would be on). Having said all that, I know that my team reallly is working with me to ensure my life expectancy will indeed be close to normal. I have learned (I think) to deal with the ups and downs, the disappointments and just pick up and go on!

[mary-easley]

My answer to that question is EVERYTHING! You have to know your disease, or opponent, to live with it and beat it down. Educate yourself, verify information even if received from a MD. Do not depend upon anyone to advocate for you, you have to be pro-active. Like Carol says, it’s a roller coaster.I actually never even a conversation with an MD about a diagnosis. I was admitted for hemoptysis that the hospital staff was convinced was TB in late October 2017. Despite my protests, I spent 12 days in isolation in a negative pressure room until all cultures came back negative. Oh, happy day. I could get on with life. Then I was moved to a regular room to have procedures performed since I was no longer “hot.” Echo and full heart cath the first day, bronchoscopy the day after. I discovered the diagnosis after requesting and perusing the cardiac cath results from the previous day. I remember seeing the RVSP value of 71 and “indicative of severe pulmonary hypertension.” So, of course, I queried “Dr. Google” about this condition. Talk about a ton of bricks falling on you! Happy day indeed. I read the cath notes before the bronchoscopy and had a couple of pages of notes written down. Several hours after the bronchoscopy the staff pulmonologist visited and wanted to transfer me to UCSD for possible treatment of clots in my right lung. Unknown to me, he was waiting to hear from UCSD whether I had CTEPH and if surgery would be helpful. The next morning the pulmonologist returned and said I wasn’t going to UCSD, no CTEPH. Still Greek to me and I asked him about PH. Very vague and non-specific responses. He made it sound like coronary artery disease, but in the pulmonary arteries. It sounded like a simple Roto-Rooter job. No explaning why the pulmonary arteries had thickened. Nothing about remodeling. Told me to get pulmonologist and cardiologist referrals from my PCP. I saw a cardiologist who specialized in pacemakers. I referred him to a CHEST article about PAH medications. Could he please write me a script for Revatio since it can only be written by cardio or pulmo MDs? He replied that that seemed like a good initial course of action after scanning the article. He had never had a patient with PH. The hospital pulmo offered no information about the existence of PAH centers for specialized treatment. I researched and explained the need for specialized treatment to my PCP, yet I was referred to 3 “regular” pulmonologists,with no PH experience, before finally getting approval for Loma Linda 6 months after the diagnosing heart cath. In retrospect I believe HHT, a genetic malformation I have that causes arteries and veins to connect without capillaries, caused the hemoptysis by bursting these malformed connections. HHT also creates pressure backup in pulmonary arteries and can be a cause of PAH. I only found that out a few months ago, but HHT is another “zebra” condition like PAH. Educating myself has kept me busy, but now I am finding, like Brittany, mental health issues are largely ignored unless I bring up the subject. My PCP prescribed Lexapro because I told her I was crying everyday. Crying is less frequent, but really doesn’t work for issues like isolation (it helps to have dogs to talk to), anger, and hurt feelings. My boyfriend of 12 years (who really thought I was crazy upon hearing my canine conversations), and also my caretaker, is trying to be patient but I know I have become short, snappy, and impatient. Closest support groups are at least 60 miles away. I live in the mountains at 4,000 feet between Temecula and Idyllwild in southern California. It takes 7 hours to go to my appts at Loma Linda. Mental health issues seem to me like phantasms, definitely there but not concrete and difficult to explain. Sorry for the length. Now that I am finally posting, I won’t shut up.

[carol-volckmann]

Mary, don’t ever shut up. You are not alone. Most are misdiagnosed- they tell you you have COPD. Most pulmonologists do not know about PAH – amazing in this day and age. It took years before I was diagnosed and then was told I had s very expensive disease and had 3-5 years to live – that was 10 years ago and I am stable and plan on many years.

You are right, you have to do your own research and your own advovate. And you did it!! You are one very strong woman and are an inspiration for all of us

[brittany-foster]

Carol,
You certainly give myself and others so much encouragement with your posts. I know that so many go through a lot emotionally and physically and the fact that people still have the strength to push on and keep going really is inspiring. It is reassuring to know that your doctors are doing all that they can. Knowing that must help relieve a lot of the stress to know that you are in good hands. I know that it is hard for our support systems too when they see us through all of the good and bad.

[brittany-foster]

Mary,
I agree with what Carol said to you, NEVER shut up and never feel like you have to be quiet about your health, especially here. It is so good that you are here with us on the forums. I love hearing more about your story, although I am so sorry to hear about how much you have gone through with your diagnosis story. I can’t even imagine not having it explained and just finding out about this because you chose to advocate for yourself and you chose to pursue answers and a further explanation. I always stop myself and think about those that may not be able to speak up in this way for themselves. How many people have medical conditions that are not picked up on and overlooked? Especially something so serious as this disease. It’s heartbreaking to think about how high those numbers probably are when people don’t know how to use their own voice. It’s people that speak up and share their stories that can really change other’s lives and that’s why I love advocating and being a part of the forums and talking with all of you. Keep speaking up and keep sharing what you are going through. We are all in support of you!

[Colleen]

Brittany, I think you just might have found the words that my son had always struggled to find. The emotions that come with PH are seen as a “problem instead of a symptom”. He always preferred talking things through with his mom, dad, brother and best friend, more than certain psychiatrists or psychologists, whose approach made him uncomfortable and honestly, more upset.

[Colleen]

Carol, I’m sorry that was your experience. Unfortunately, doctors and sometimes even nurses, get so use to the routine of explaining things that they lose some of their bedside manner. Something you can maybe try when you are experiencing this is to ask, “Can we talk a moment about how I’m feeling about all this?” Sometimes that’s all they need, is a little reminder that they need to slow down and take the feeling of the patient into account.

[Colleen]

Mary, please don’t ever feel the need to “shut up”, especially not here. It’s good to hear from you and your experiences help others feel less alone with their struggles. I LOVE that you have conversations with your dogs. Both Brittany and I know how much fur babies are the best form of therapy. My son adopted a dog after his transplant and that pup has been, (Next to his new heart and lungs) the best thing that has ever happened to him. He talks to his dog all the time, and so do I for that matter!

[margie-novak]

Thank you for all the responses. They get me through some rough times. I think we PH warriors can write a book on what we wish they had told us or knew when first diagnosed! There is so much we were not made aware of with this illness. First, I would recommend a good pulmonologist. When first diagnosed, I did not see a pulmonologist and could not figure out why I had headaches in the morning and just felt terrible till I saw one and she did a test and my oxygen was falling to the 70s at night! A bi-pap was ordered and I didn’t think I would like it but now cannot sleep without it. Second, I agree with Brittany on the mental health part. No doctor really touches base on that subject. This illness really does something to your “psyche” and you need an outlet. Unfortunately for me that outlet is some medication but if I have to take something for anxiety I have to take it. Third, the expense — when diagnosed I went on disability immediately and had a decent job. I did not have time to pay off some credit cards and other debts and living on disability income is quite difficult some months. It is expensive to live with a chronic illness. Fourth, I agree with others when the medical profession assumes you have COPD. I had my cataracts removed at a different hospital than I am treated at and all of them said “oh, you have COPD” I wanted to scream. Some times I wish I had a button that says “I have pulmonary hypertension” and sometimes I assume some medical professionals do not even know what it is!! Fifth, a good support system is needed. My illness has progressed to where I need oxygen 24/7 so it is hard to get out. Luckily, I live with my sister who is my “feet” she does grocery shopping takes me to the doctor, pushes the wheelchair. Since I am staying home I am the person who keeps the house in order. So we even each other out in the chore department. I could go on and on but I am sure we all have the same issues on what we would have known. Just be thankfully to put your feet on the ground every morning. I know I am! We are fighters and we will get through this illness together!!! Hang in there love to all and thanks for letting me vent!!!

[Colleen]

Margie, it sounds like you and your sister make a great team. We really could write a book about what wish we knew from the beginning of diagnosis, but hopefully, we can also write a book about some of the amazing people who have helped us through this journey. Happy new year to you!