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Advice For Those Recently Diagnosed With PH
If you have been diagnosed with pulmonary hypertension or are a caregiver to someone with this disease for 2 or more years, please take a moment to share some advice and/or words of encouragement for those who just started this journey. Reflect on how you remember feeling when you where diagnosed. Is there something you wish someone had said to you at that time that you would like to say to someone new to PH now?
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34 Replies
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Get an oximeter. Ask lots of questions; the only dumb question is the one not asked. Carry a notebook so you can write the questions at the time you think of them so you remember to ask your doctor. Bring somebody to your appointment so they can help you remember the doctor’s instructions. If you notice a new symptom call your doctors; it might be nothing, but then it might not.
Finally, when you’re an expert on the disease, share with others! Gotta thank everybody here for the sharing they’ve done and been through. It has helped me immensely.
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Thank YOU for all of your contributions to the forums too. We wouldn’t be successful without the advocacy and awareness that all of our members spread every day. VR, you have a lot of really good advice about taking a notebook, writing things down, noticing new symptoms and mentioning them to the doctors etc. This is all really important and a huge part of self advocating (which we have to learn one way or another in order to make it in the medical world!) We are our biggest advocates.
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Excellent advice V.R.! Carrying a notebook was and still is a big one for me. I keep 2 sections, one for questions and another for unfamiliar words or parts of conversations that I want to research more. It’s the best way to learn the disease and understand the medical team, especially during hospital rounds.
People say it but it’s true, “There is no such thing as a dumb question!”. That’s an important point that you made. In addition to that, don’t be embarrassed to ask the same question as many times as you need to until you understand the answer.
I’m also glad you mentioned informing the doctor’s about all new symptoms, whether they seem big or small. My son has been surprised a number of times when he reported something thinking it was nothing only for it to turn out to be significant. You just never know!
Last but not list, your suggestion of utilizing a buddy system. Bringing someone with you to appointments is valuable in so many ways. You get an extra pair of ears but also some emotional support.
Thank you for responding V.R.!
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Yes! I can’t stress the importance of the “buddy system” enough! I always make sure to go with someone that knows a thing or two about medical stuff and will listen closely to what the doctors are saying. I go to my appointments with my mom. I have taken my sister a few times but she definitely does NOT like doctor’s offices. I think that it’s important not only to bring someone that will support YOU but someone that is okay and comfortable enough in a medical situation where you wouldn’t need to worry about how they are doing and feeling at the appointment. A lot of my focus HAS to be on myself at appointments and if I bring someone with me who is timid around doctors then I spend more time worrying about THAT person.
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Brittany, I can so relate to you worrying about those you bring if they aren’t familiar and comfortable around doctors. My sisters and my mom would not be as comfortable as my hubby. My mom is better than my sisters, both do not like to be around hospitals or medical stuff, lol
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Yes, V.R., an Oximeter is a great idea and affordable on Amazon. I also agree any new symptom big or small needs to be mentioned!
Thanks for always being so helpful with your comments.
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The most important thing in this journey, you know your body, you know when something is not right. As Colleen
Stated, share your feelings with doctors, do not waste time with practitioners that are not familiar with PH, keep a lid book
Of the test, medical procedures, meds and lab results, to prevent having things done numerous times with same results.
Have copies of each doctors notes and share them with each doctor on your treatment team. Stay away from the doom and gloom scattered across the internet. I use “Mayo Clinic” , to stay abreast of new treatments. Look into research studies, your doctors know about these. Please have an advocate to go to visits with you, to ask questions, you forget to ask, remember this is your life, be very involved in your care-
You also shared important tips Jimi! I second your suggestion of keeping a lid book or binder of all your medical care. That is something I started before my son was diagnosed and his doctors where always grateful that I carried it with me to all of his appointments and hospital stays. People tend to rely too much on the computer. An organized paper trail helps doctors tremendously. I think it’s all about the visual benefits.
As you mentioned, it is critical to be as actively involved in your care as possible, but also beneficial to have someone present to advocate with or for you as needed. Thanks for sharing!
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Jimi,
I really appreciate all of your comments on this! Thank you for sharing such great and useful advice with others! It is true that you don’t just want to start getting online and researching because there are a lot of websites with information out there that is outdated. Sometimes the doctors could be a good source of information too and will be able to let you know what websites would be more reputable if you wanted to do some research of your own. I know that “mr. google” can sometimes lead people into a state of frenzy especially when they are reading things that are just so morbid and not realizing they are outdated ! It’s important to know where the information is coming from ! -
JImi, so true! Many love to use Google and they are already overwhelmed with a new diagnosis. Those horrible google searches just cause more stress and confusion! Using information from a reputable source such as Mayo Clinic, PHA, and PH News is best! Great tips!
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Yup, I know people who had a cold or flu, and Google diagnosed leukemia. On the other hand, Google failed to diagnose my son with PH. Thought it was bronchitis. I really wish there were an eye-roll emoji!
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I agree, V.R. I’m sure the symptoms of PH would send patients to many different doctors. It’s so complicated! (Eye roll) 🙄 there is one, lol
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🙄 Thanks! Found it.
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Wow, lots of great tips here ! I think that y’all have covered most of my tips. I would like to add , if you don’t like your doctor, find a new one. So many who are newly diagnosed fear doctors. We just hit fear doctors but rather feel comfortable with him or her as we communicate our needs.
Be your own advocate, and remember you can never ask too many questions!
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Jen,
you’re so right ! Trust with your medical team is so important. Many of us have had bad experiences either with doctors or with other situations in our life that has put a damper on our trust. Trusting medical professionals is so important. Sometimes it really takes a ton of patience to find the right fit for you, especially after weeding out the ones that do more damage than good.-
Yes, Brittany, so true! Finding a doctor that fits your needs and we can trust is huge. I just wrote something about this in my upcoming post. Patience….well I’m not great at that, lol just ask my hubby. Hehe
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It’s been a year since I was diagnosed with PAH. I’m still trying to cope with it for each time I get different symptoms. I live in South Florida and the heat make me very sick. I cannot breathe, I threw up, and my heart rate went up to 150-169. Does anyone experience the same effect of the heat?
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Hi!
I don’t live somewhere where it is hot year round, but when the summer comes it can certainly bring a lot of heat waves! Something that I have done with managing this symptom of a fast heart rate in the heat is working with a cardiologist/electrophysiologist. I ended up needing a pacemaker placed when I was 20 years old. I had tachy/brady syndrome and my heart rate increases inappropriately with my level of activity. The pacemaker and the medications called beta blockers that I am on has helped me control my heart rate and make it more even and stable. The jumpiness of the heart rate and the fluctuations made me throw up. I would suggest asking your doctor about a possible holter monitor to see if they can catch anything going on with your heart, especially if you are throwing up with these symptoms. Best of luck! Keep us updated ! -
Welcome, @rockie436, I’m on Texas Gulf Coast and it does get extremely hot and humid. I don’t experience the exact symptoms you’re speaking of. I do experience more shortness of breath. I do have the feeling as if I can’t breathe. I use oxygen more often.
As Brittany suggests, with those heart rates and symptoms, I would definitely ask for a holder monitor to see if the heart doctor wants further testing or can add meds to help regulate your heart rate.
I would also like to share this about best exhaustion as this could be something you try to avoid as well. Keep cool and dry and stay indoors on the hottest days.
https://www.mayoclinic.org/diseases-conditions/heat-exhaustion/symptoms-causes/syc-20373250
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@rockie436, I also wanted to remind you to stay hydrated without overloading on fluid. When my electrolytes are out of whack, like potassium, my heart goes crazy(palpitations, etc.,) and I get nauseated. Often when this is really bad I’m a little, dehydrated.
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Thank you Brittany and Jen. I’m on beta blockers. Nevertheless, the heat gets me every single time. My pulmonologist and cardiologist advise me to stop working. I think I’ll go senile if I stop right now. Jen, I’m on potassium once a day. I stay indoors whenever I can.
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@rockie436, yes, I can relate when you say you’ll go senile if you stop working. This was a tough realization to grasp for me almost 14 years ago. I’m grateful that I recently started a job from home, even a few hours per week and it’s helping.
I also take potassium twice per day but my magnesium and potassium, as well as other electrolytes, often drop with these hot days plus the diuretics. We tend to sweat more than we realize. AC is my best friend right now, lol
Definitely be sure that your doctors are aware of the heat on your body.
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I am on the beta blockers too! They definitely don’t help with the fatigue and tiredness. Especially in the humidity it can get really hard. What dosage are you on if you don’t mind me asking? I am on the 50 mg extended release during the day and 100 mg at night. When I take the beta blockers in the afternoon instead of really early in the morning, my energy levels just plummet !
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Thank you Jen. I do keep them aware of any changes on my symptoms. Some times the heat makes me so tired that I can barely move.
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I can relate to how you’re feeling in the heat. Especially with the added fatigue and the extra work of the heart. Sometimes a lot of us have troubled with fluid retention, staying hydrated, getting more tired easily because of heart meds etc. Hopefully you are able to stay cool and in the a/c.
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Yes, this heat and added humidity aren’t helping! Stay cool and well hydrated!
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Having PH for 12 plus years has taught me much. Never, give up! Also, don’t be afraid or embarrassed to ask for assistance with things. So many things I cannot do now that I have to ask family or people in stores to help with. Have good doctors who communicate with each other. My primary care, pulmonary doctor and heart doctor are all with the same health system and can see my records on-line. Always take someone with you to doctors appointments. You can forget so much. Try to avoid sodium. Found that out late in my PH stages. Adding the extra water to your heart is bad. Above all be thankful for every day you put your feet on the ground in the morning or see the sunset! Don’t let the illness defy you. Be strongth1! take care all my fellow PH members! Thanks for letting me “rant”!!!
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Thank you so much for all your contributions Margie! The forums are lucky to have you here. I love all of your words of wisdom to our members. I know it will help so many others who read this. You are lucky that your main doctors are all part of the same system and can have easy access to your records. That definitely helps avoid the stress of searching for files and reports on your own.
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@margie-novak, wow, I did not realize that you , too have lived with PH so long. It definitely isn’t easy but we must continue to fight and stay strong.
Great points that you have added to the list!!
Hang in there…and glad we have you here with us.
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Margie, as a long time PHighter your advice is so valued here! Thank you for your words of wisdom and for caring so much about your PHamily!
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I have gained a lot of weight from going from an active to a very sedentary person my symptoms have advanced quickly…. But I don’t give up !! I was losing some weight but I got a bad report at my pulmonologist and gave up but I am ok now do any of you do the keto diet?
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hi @ally1567 good question! I will post this as one of our forum topics about diets today and you can check out some responses there. I know that “diets” that are strict and leave out food groups aren’t always the best for everyone so I’m sure everybody is different in what they have been advised as far as a diet plan goes. I have never tried Keto but have friends that have done it and had really good results. I wonder if this is something that is sustainable long term? Are you on a keto plan? Is this something that you would be comfortable with bringing up to your doctors too? I have seen a few dietitians for my medical conditions in the past and they are also really helpful at coming up with a meal plan for me that is going to give me the most energy and help me maintain a healthier lifestyle.
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Hi Ally, depending on what medications you are on and how your PH is effecting your heart maybe you are also symptomatic with water retention. Are you on or has your doctor discussed a diuretic with you? My son is still being treated in pediatric care and his doctors offer for him to see one of their nutritionist’s after each appointment. I don’t know if this is offered with adult care as well but it wouldn’t hurt to ask.
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Hi @ally1567, I’m sure that as you mention going from active to more sedentary is not easy. I also agree with @colleensteele, about diuretics, often we retain fluid. This can be from PH, heart issues, and some of the PH medications.
As@brittany-foster suggests I would definitely check with my PH doctor before starting any type of diet. We are all different and some of us gave other illnesses too. We have to be careful with restrictive diets. I know some who have tried Keto for a while and did well. I have kidney disease so a Keto plan is out for me. In my experience, most PH doctors suggest a heart-healthy diet.
I also think that seeing a nutritionist or dietician can be helpful. You should be able to ask your doctor or insurance case manager for recommendations.
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