Preparing for Visits with Your PH Specialist

Last week I had a visit with my PH specialist. I am very fortunate to have been sent to such a great specialist that is so close to where I live. Fortunately the PH clinic is located just an hour or two out side of the city where I live. Specialists visits can be difficult, especially at first when everything is still a new experience.

To make the most out of my specialist appointments I make sure to keep a list of all the questions that develop in the weeks before my visit. If anything unusual happens make sure to write it down. Write down the details of what you were doing when the event happened. If the event feels serious, or if you are worried about anything, don't be afraid to call your specialist right away. Don't feel like any questions or concerns must wait until your appointment to be addressed if anything has you worried. I have needed to call my specialists a few times with some concerns, but luckily he called me back very quickly and assured me that these new feelings I was experiencing were all part of my diagnosis.

I live at home with my wonderful parents, so I make sure to include advances or set backs they notice. Even though I am more in touch with my symptoms, my parents have been able to make connections that I wouldn't have. Some of my non-PH meds were making my PH symptoms worse and causing insomnia. I chalked this up to my PH, but by talking to a doctor and stopping/switching medications we were able to pin point why I was feeling worse. I have also found that keeping a journal where you document your symptoms, medication, and achievements for each day helps for documenting progress and set backs. You're specialist will want to know about your progress/achievements as well so make sure to remember these milestones to discuss with your specialists. I shared with my specialists what I have been able to do in terms of physical activity, my 02 levels without oxygen at rest, and my heart rate.

My father also comes with me for my visits. I would recommend bringing someone close to you for support. Because my parents are my caregivers, my father often has his own lists of questions to ask. If you feel comfortable with your caregivers/parents/partner/etc asking questions- go for it. As a caregiver my father has different insight into how I am doing and we make sure to discuss what questions he will be asking ahead of time. At my last visit I got both good and bad news. My dad is there to remind me of the good news and how we should focus on that. Realistically, the bad news is that I have severe Pulmonary Hypertension.  However- the good news is that I am responding "beautifully" to the medication. If you are newly diagnosed, remember to be patient with yourself. These things take time. I was in very bad shape when I was first diagnosed, and although I trust that I will continue to improve, I know that improvement will take time.

You will certainly want to remember what you discussed with your specialist. Don't be afraid to take notes during your visits. You may even want to ask if your specialists minds if you record your discussion for better documentation. (Most smart phones have voice recorders as a built in app.) I like to keep notes from my visit because I can track my own progress, and I can ensure I have all the answers I need from my questions in the chance I forget. It can also serve as a sense of comfort between visits too. It may be comforting to hear or read the positive notes from your visit. My visits keep getting spread further and further apart. One month, two months, three months, four months. I assume this is good news that they don't need to see me as often, but as the months drag on I find it difficult to not have any medical "feedback." The notes help remind me that I am doing well despite my diagnosis and some expected downfalls. For example, my oxygen level dropped (even with my supplementary oxygen) while doing my 6 minute walk test- but I improved my walk test since my last visit. I was very proud of how far I walked. My specialists said it was good progress and he even set a new goal for me for my next walk test! Remember to balance the good with the bad.

If you have to do a bit of travelling for your appointment, do what you can to get the most of your "trip." I'm on a special diet at the recommendation of my naturopath- so I make sure to bring food with me since I have a difficult time finding healthy food that I can eat. If you know that you will be having a walk test, pack accordingly. Bring any snacks you might need to eat before or after, and make sure you stay hydrated. At my last visit I raided the gift shop and found some cute slippers. I decided I should get something at the gift shop every time I visit to reward myself, along with allowing myself some French macarons (which is not included in my special diet.) I think it is important to take the time to remind yourself that you are special, and cared for, and take joy in simple pleasures like small sweets and slippers. My father and I also always make plans to go out for a nice dinner on our way back home. However, we have a rule that if we are too sad after the visit it is perfectly okay to go home right away and just eat there.

If you received some news during your visit that has set you back emotionally, give your time to feel that emotion. When you are ready (and sometimes you might have to push yourself,) pick yourself back up and move forward in whatever way you can. If you find that in a few days/weeks you have any questions or concerns from your last visit don't be afraid to call your specialist for clarification.

Some of us might feel uncomfortable being so assertive. I would encourage you to step out of your comfort zone because your health is worth it. It is important to be your best advocate in anyway possible in terms of your health. If you don't understand something, do not be afraid to ask your specialists to explain something until you feel you fully understand the information being given to you. This will empower you to take better care of yourself. Chances are your specialist would feel more comfortable knowing that you have a better understanding of your current situation and health as well.

In case you were wondering, my father and I went out for a nice dinner on our way back home from the specialists last week.