4 Tips for Caring for Someone With Pulmonary Hypertension

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

We’ve compiled a list of tips to help you 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 health care 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 that deliver up-to-date information about PH.
  • Ask the health care 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 health care 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.

One comment

  1. Andrea says:

    Good suggestions. One thing that is missing is nutrition. Without a really good understanding of what foods to eat, how to prepare them and know what to look for when grocery store shopping, and most importantly what we choose to put into our bodies will cause issues having Pulmonary Hypertension if we are not careful.

    After being hospitalized for six days and losing 50 lbs weight, muscle mass, and water that’s when I became so skinny at 119 lbs., I learned all the unhealthy weight had come off and now I have to put back on healthy weight only by eating protein enriched foods, with limited sodium intake no more than 400 mg per serving and less than 2000 mg per day with no more than 2000 Ml of liquids per day, and less than 21 grams of sugar.

    However, no one suggested seeing a nutritionist. So, I asked for a referral first from my cardiologist but none came except sites to check out that listed suggestions and recipes, then I asked from my family doctor and finally a referral was put through. I even did research on my own to find a nutritionist because I got tired of waiting.

    I don’t get recipes and have looked at them and I don’t really enjoy cooking so when I see a list of ingredients that goes into a recipe I would have to check each ingredient to make sure it matches with what I can have. I find cooking with recipes to be more work and when it comes to cooking and eating healthy I would like the process to be as easy as possible.

    Right now I’m eating protein enriched foods that I’m aware of and also eating vegan foods and find that eating healthier helps my body and me feel better to the fact that I am not as hungry as I once was when eating unhealthy all of my life.

    Getting together with a nutritionist seems to be the best choice for me. I’m lacking and really want to learn all about food so that I can one day enjoy the foods I shop for, cook them, and above all enjoy eating once and for all so that I don’t reverse back to the person I once was. My body was so swollen with water that my lower extremities including both feet, ankles, legs, thighs and stomach were swollen with water that made it difficult for me to walk around and after another right heart cath my heart had enlarged making it 3x’s the size. Now, happier to report I don’t have lower extremity swelling anymore. But I still have to monitor these areas for the rest of my life. I don’t take anything for granted, because there are no guarantees. I don’t have to wear plus size clothing anymore either. The hardest is putting the weight back on because I want to be in the healthy weight range my cardiologist wants for me and it takes so long to get there.

    Does anyone else have issues with food? If so, please consider contacting me and let’s discuss this important subject. I’d really like to know what others think.

    Thanks for listening.

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