4 Tips for Caring for Someone With Pulmonary Hypertension

If someone you love has been diagnosed with pulmonary hypertension, you may be concerned about how to best care for them and what you need to do to ensure they maintain a good quality of life. You will become an integral part of their healthcare team which may be challenging at times.

We’ve compiled a list of tips to help you to give the best care to your loved one with help from the Pulmonary Hypertension Association.

Educate Yourself

  • The more you know about pulmonary hypertension, the better caregiver you’ll be. Ask your loved one’s healthcare team questions about the progression of the disease, the treatments, how the medications work — don’t be afraid to ask them to simplify things for you if you think they are using too much medical jargon.
  • Read about the latest research and clinical trials and sign up to reliable news sites and Facebook pages who deliver up-to-date information about PH.
  • Ask the healthcare team to train you in managing treatments and medications at home and ask if there is anything else you may need to know about caring for someone with a lung and heart condition.

Get Organized

  • Keep all your loved one’s doctor and hospital notes, test results, appointments, medication information, and insurance details in a folder so that information can be easily accessed.
  • If your loved one requires IV treatment, keep a first-aid kit in the home with a thermometer, catheter repair kit, backup pump, blood pressure monitor, and a small cooler box or ice packs that can be used to cool medications down if you’re out of the house.
  • If your loved one is on oxygen therapy, you’ll need to keep the following in your home: an extra prescription and a photocopy to keep on your person, a portable E-tank and flow regulator in case of a power cut, spare nasal cannulas, spare tubing and connectors.
  • Make lists of things you need to do for your loved one on a daily, weekly and monthly basis. Keep a large calendar with all appointment dates written in a prominent place.
  • Keep a log or journal so you can see what works and what doesn’t work in terms of care for your loved one.
  • Come up with an emergency plan and give a copy to other family members so everyone knows what to do.

MORE: What exactly is pulmonary hypertension?

Don’t Panic

  • It may seem overwhelming at first, but you and your loved one will soon settle into a routine. Learn to take each day as it comes and go easy on yourself — there will be good days and bad days.
  • Look after yourself: your health is important, too. Go see a doctor if you’re feeling unwell or feel you aren’t coping well emotionally.
  • Don’t be afraid to ask for help from friends, family and your loved one’s healthcare team — you shouldn’t have to do this alone.

Show Respect

  • It’s important that you continue to show the same level of respect to your loved one as you did before they got sick.
  • Allow them to make their own decisions regarding their treatment and other aspects of their illness.
  • Encourage them to be as independent as possible, don’t assume they can’t do something for themselves — ask!
  • Give them space when they need it and use the time to do something nice for yourself.

MORE: How to support someone diagnosed with a terminal illness.

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 another 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.

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4 comments

  1. Lee Ann Medina says:

    What do you do if your the person who is sick and there is no one to care for you? I was just diagnosed and am overwhelmed and have no one to lean on for support. I feel all alone.

    • Michelle says:

      Your comment is heartbreaking. I was diagnosed about 9 years ago and have dealt with it on my own for all this time. I got angry and went through the “why me”. Then one day I got up and decided that I can spend whatever time I have left depressed, sad & angry or I can use that time and actually LIVE life. We will always have limits to what we can do, it goes with the disease. Please reach out to online support groups. There are several on Facebook. Best wishes to you. ❤

      • Dianne Roncal, DMD says:

        thank you for sharing, Michelle. You are right, we have two choices: use your time getting sad, angry, and depressed or go live life. It’s good that you chose to be positive on this. Support groups are very helpful in dealing with it. You are not alone in this battle. Sending positive vibes for the two of you. <3

    • Joanne Sperando says:

      Perhaps find a local support group? Nothing is better than sharing your challenges with others that understand. The online PH community is very active too.

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