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Low blood oxygen
Is there anyone out there that has type 1 PAH , that has low blood oxygen as well. My daughter is struggling to breathe even with oxygen 24/7. She is 41 yrs old with a 11 yr old daughter and is a single mom. I was wondering I’d anyone out there would show her some encouragement as she gets very depressed and does not want to go on sometimes. She is in stage 3.
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3 Replies
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Hi, @Bubba. Thank you for the question and for coming here to find information and support as you help your daughter. That must be challenging for her, as she is a single mom trying to manage her PH and raise her daughter. I’m always open to connecting with others if it helps. I recently celebrated my 20th anniversary with PH and am on all oral medications. Feel free to email me at [email protected].
And for you, as her mom, watching her fighting to breathe and also going through depression must be tough. How are you managing your emotions? Do you have other children and grandkids around?
Has your daughter had a sleep study? You mentioned she continues to struggle even with oxygen 24/7. My thoughts and suggestions are that she may need more oxygen( increases flow or concentration) or possibly a mask or CPAP, etc, at night due to any untreated sleep apnea. Have you or your daughter asked her PH team about increasing her oxygen and what her blood oxygen sats are running?
These are my suggestions. I am not a medical doctor and made the suggestions only from experience. Since she has a Class 1 PH, is it unknown, hereditary, or due to a connective tissue disease? Because she has been diagnosed for three years, I assume a knowledgeable PH doctor sees her. Is that correct?
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@Bubba may I ask what other treatment your doctor is on besides supplemental oxygen? Assuming she is seeing a PH specialist it sounds like it might be time to explore more PH treatment options or changing dosages of whatever she might be on already.
PH can weight heavily on the minds and emotions of patients and there caregivers. When my son had PH (He received a transplant 10 years ago) he would have bad days and I would give him space to feel what he needed to feel. It helps if you have people you can express your feelings to and we are all here to be those people for you and your daughter any time you need support.
What you will discover as you read the forums is that we focus on the whole person here. We share a lot about our lives in general, even when it doesn’t have anything to do with PH. When members have gone on vacation, planted a garden, published a book, took a pleasant drive or brief walk, tried a new recipe…the list goes on from the mundane to the big moments. This helps us all remember that PH doesn’t have to define us. Remembering this can help people get through dark days.
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Hi @Colleen , thanks for that suggestion; it’s a great catch I missed. Changing or increasing a treatment may also be an option. With this information and others’ support, I know I will appreciate the information shared.
Also, Dana, if you need a knowledgeable PH specialist, the PHA Find a Doc makes it easy to locate someone near you and your daughter. I’ll attach it below.
https://phassociation.org/patients/doctorswhotreatph/
phassociation.org
Doctors Who Treat PH - Pulmonary Hypertension Association
DOCTORS WHO TREAT PULMONARY HYPERTENSION PHA provides the following lists of physicians who treat PH as a service to patients and does not specifically endorse any individual physician. All information has been provided by the doctors so that you can … Continue reading
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