Donna Head discusses living with Pulmonary Hypertension
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- Опубликовано: 30 ноя 2013
- Donna Head was given two years to live when she was diagnosed with Pulmonary Hypertension... since then she's survived for more than two decades... and she's still fighting.
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Thank you for this video. I was just diagnosed with PH (Group 3) and seeing how long Donna has lived gives me hope.
I have been diagnosed with this and honestly I am scared. I'm already 44 but have a 12 and 17 year old that still need me and my oldest 2 are 23 and 21 which I can not leave them with the responsibility of their younger siblings it is heartbreaking. I hate that I can not do anything without being tired... thank you for sharing this with us. I hope I live as long as this beautiful women!
How are you doing now?
Life is a gift. Just thank the Lord Every day for His gift and you will keep it.
I’m primary as well. Never knew and I am young. Went into cardiac arrest on March 25th. You give me hope ❤️
Thank you so much Donna. You have really helped me. I have just been diagnosed with PH after having three multiple pulmonary embolism episodes due to anti phospholipid syndrome from 1988 onwards. I've been breathless with my feet and abdomen swelling.you give me hope that treatment is becoming more refined and years are being added to prognosis now. May you live long and be well and happy!
Praying for a cure. This disease needs to be brought forth and recognized. Thank you so much for this video . It truly helped me understand it better.
Jacque Monroe same here I just been diagnosed with the same pressure of 90 it’s so hard because there not a lot of information in ph basically you have to do your own resource and what’ works best for you
P.HTOXIC86 mine was apparently brought on by lupus. But it strange I’m not showing symptoms of lupus. I truly believe in my heart they will find a cure or something to reverse it or stop it from progressing. Take care of yourself . God is always watching over us. Look for his miracle!
There are some good online resources. Pulmonary Hypertension News is a great site with good forums to ask questions. I am a newbie, too, you are not alone. It is all a little overwhelming.
Colorado ChiMom thank you yes I slide up for pulmonary hypertension news it’s very difficult I actually found a RUclips that has it very as an explains what helps hers and what she eats and how’s she’s active so it’s help a lot
54 male, 2000 knee injury and many complications, DVT, PE, Enlarged Heart, Pulmonary Hypertension, Gerd, Sleep Apnea.....
I was diagnosed secondary PH around Jan. 2015, but symptomatic and mis-diagnosed for 15 years. That three year prognosis isn't as scary after your video, Thanks
Interesting to hear her story. I’m 75, diagnosed two years ago with PAH. Had 100% disability with congestive heart disease due to Agent Orange. I was a smoker but quit 15 years ago. I have a pacemaker, I take Tyvso 4 times a day; Plus a number of other pills. I’m on oxygen 24/7. But, what helps the most is physical therapy. I go to Blount Memorial hospital 5 days a week and exercise at least an hour a day. What a great group of people. It’s a social club filled with laughs. I enjoy life too much to worry about it. My wife (54 years) makes it all worth it. Thanks for sharing your stories.
Thank you, Donna. You have inspired me with your story. I would love to know how you are now. I hope you have continued to live a full life.
I hope she is still well. 8/24/22
I pray for a cure. My sister was diagnosed with PH a few years ago. It was rough for our family to have to listen to the doctor tell us the same thing you were told. We are also from Mobile AL. We attend the PH awareness and support groups. My baby sister is a fighter and such a sweet strong woman. She had just finished going to school for pharmacy tech when we found out. Since then she has reached 21 years of age. She has been a trooper and the glue to our family I love and pray for each and everyone who is dealing with this. I pray for a cure soon. Thank you Donna for this video.
I know this comment is 4 years old but it really resonated with me. We always think about and pray for the ones who are suffering with the illness but my heart goes out to the families of people battling pulminary hypertension. The patients are suffering but so are the families. I pray with all my heart that your sister is doing well today and I pray that you and your family are doing well also. I pray that one day there will be a cure for this and all those who are suffering can recover.
This woman is a strong and well spoken.May God bless your life!
Wished could have heard the questions and comments of the gentleman speaking with you. Ty for all you do.
Wow she has such a great spirit. I am a survivor of pph. Only due to corrective surgery.
Thank you for sharing your story. I am a student pharmacist and this was very educational and enlightening. Keep up the good work, Donna!
I was diagnosed in 2015 after years and years of not feeling well and being told by my primary care doctor that "there's nothing wrong with me" and it was because I just wasn't "fit" . He said I needed to exercise more ! People with pah can't exercise !!! I finally found out 3 months after I was admitted to hospital with heart failure .
This is a great video. Thanks for showing Donna's story with PH to raise awareness. 22 years is an inspiration. Here in SA, we dont have the drugs she can access to improve our quality of life
Thank you for this, Donna.
Thank you so much for this video!
I was diagnosed on August this year at the emergency room do to difficulty breathing shortness of breath and was diagnosed with chronic pulmonary artery hypertension I’m 56 years old and scared 😪
you go girl, ive been battling same symptoms and after a couple catherizations, I said forget it, dont care, my entire family has history of it so its fate for me, but until then, im alive and doing what ever I can and your right about the doctors not detecting this fast enough.
wow times have changed. So glad you are still here I was diagnosed late! I am on 2 meds. water pills etc
When I went to hospital to be hospitalized in April 2018 for not being able to breathe for several months, doctors behaved like I was lying and pretending my problems.
I was listening from 6 doctors for months, since June 2017, that my problems were caused by psychosomatical reasons, that I should just find psychologist and I will be fine. Cardiologist, pulmonary specialist, vessels specialist, alergologist, psychiatrist, practical doctor etc. Pulmonologist suggested even yoga, so I can "learn to breathe properly". Psychiatrist wanted to hospitalize me on psychiatry, so I can go on psychotherapy and that will solve my inner problems and I will be then able to breathe normally.
Every one of them dismissed my symptoms, which started last June. It was clear to me, that my problems with breathing must be caused by problems in heart or by lungs. The first thing I did was, that I went to cardiologist. She did echocardiogram. And she didn´t find anything. Symptoms were getting worse and worse. In August I visited alergologist. Nothing. In September I visited pulmonologist. Nothing.
In September I started to vomit, had diarrhea, coughed so much, because I was suffocating, that I vomited. Nausea 24/7. In december 2017 I lost consciousnes when I got coughing attack and my brain didn´t have enough oxygen. When I fell, I injured my legs, I fell in the bathroom and hit my head with the wall.
I sometime lost consciousness sitting in the chair.
At work I had to eat only in the morning, because I went home at 4pm and it took me one hour to get home. I didn´t eat after morning, because I tried to avoid possibility of having diarrhea or having to vomit in the bus or at the bus station. If I ate then when I got home, I vomited that meal too. I vomited once few meters from bus station, minute after I got out of the bust. Once I got home in the last second, I had to hurry, even when I couldn´t breathe, because I got diarrhea at the bus and I held it as I could.
Since January my legs were getting swollen and then they were swollen even to half of thighs. I couldn´t walk.
I had nervous breakdown during visit to pulmonary doctor in January 2018 (I have also asthma), I just couldn´t take it anymore physically and psychologically.
No doctor cared to find out why I couldn´t breathe, why I was able to walk max.3 steps and then stop.
In April 2018 it was so bad I went to hospital. Doctor touched my horribly swollen legs with two fingers and said, that they aren´t swollen. They sent me to CT. Nothing.
After like three hours there they sent me to cardiologist, I had to carry my heavy packages I had prepared for hospitalization, and this doctor did echocardiogram and suddenly found, that I have very severe pulmonary hypertension and ordered me to immediately sit down, because “you can´t walk around in such state”.
After two days they sent me to centre for pulmonary hypertension and PH specialist did right heart catheterisation and confirmed, that I have Pulmonary arterial idiopathic hypertension, in the worst phase and said, that it was developing in me for 2 years already! And that without immediate medications I would be dead within few months!
But according to those 6 doctors I was perfectly OK and I couldn´t breathe due to my depression and anxiety, while whole time I was dying. And that doctor, according to whom I didn´t have swollen legs? I lost 11 kilograms in two weeks in the hospital. All of it stored water. Lazy doctors. Lazy cardiologist last July. Lazy pulmonologist. If only that cardiologist last July really did her work, I would be diagnosed in so much better state and now I don´t know, if I will be alive in 5 years. Without diagnosis and medications I would be dead by now already.
Per the last study among patients with Pulmonary arterial hypertension, we are usually diagnosed within 4 years since first symptoms. I didn´t have 4 years. I would be dead within 3/4 year since first symptoms.
After doctor told me diagnosis, I had nervous breakdown and developed PTSD.
I used to go to theatre, cinema, library, fitness - nothing of that is possible now. I used to ride on bicycle around my town - impossible now.
I barely walk. Since spring 2019 I walk with cane, but I am able to walk only few meters till I have to stop and rest.
I have arythmia, palpitations, sometimes syncopes from coughing. I am on full disability.
My skin is horribly dry, my hands and arms itch.
I live in the chair in the living room with laptop - youtube, TV shows, pinterest.
I can´t read much anymore, I can´t focus on longer texts.
Since my dad died, I can´t read fanfiction.
I had to leave my job, where I was best in my team.
I was diagnosed late, very late. My PH specialist said directly, that without immediately getting on meds, I would die in two months. Meds are maybe keeping me alive, but I don´t feel better. My health state is getting worse and worse.
I loved my independency. Now I have nothing. Only depression, anxiety and PTSD, huge problems with memory and concentration and I can´t even go on massage, so my back will hurt from no movement till I finally die.
I was on Veletri for 8 months. It was horror. I was getting worse. So they took me off Veletri, put me on Revatio - Sildenafil with beautiful side effects of the worst anxiety attacks I have never experienced in my whole life and with huge problems with sleeping. After two months they put me yet on Uptravi - amazing side effects of days lasting diarrhea. Thanks to Sildenafil I didn´t sleep properly for 3/4 of year, now I am on Trittico and Rivotril for sleeping and trying Cipralex to help with depressions and Xanax. Plus I am on Volibris. I don´t feel better.
Since this year 2020, prices of basic food in Czech republic went rocket high, vegetables, fruit, meat, even potatoes. Some food is even 100 % higher.
I get to my bed on 1st floor step after step with horrible arythmia and hoping, that I won´t faint on stairs. I go upstairs only once a day for sleep. The rest of day I spent in the living room, only going to toilet and kitchen. I take 250 mg of diuretics every day. Omeprazol for heart burn. B-complex. Contraception. And I have heart burn from drinking water, so I can´t drink it. I have also allergy on most of fruits. I am exhausted 24/7. Everything physical is unbelievable exhausting. Also, oxygen doesn´t help me, they tried it at the hospital, no effect.
God bless you, you have been through it, strong person
I have recently been diagnosed with idiopathic PH. You have been through the wringer. I can identify with much that you say; years of bad diagnosis from doctors saying I have anxiety when I knew that was BS. I hope and pray that you have some supportive family around you. May Jesus bless you and strengthen your will and soul. I will pray for you in my rosary this very day. God be with you.
Good to see this.. Can I know what all medicines are you taking
I was recently diagnosed with PH, I'm at a loss with my life. I'm having difficulty accepting this life event.
This is a trial from Allah, pls pray n trust in Him He has a cure, we shall pray for you
j2uazon83 i know exactly how u feel
Bless you!🙏🏼❤️
Well, since then. I've adjusted to my new life style and things are going better than I imagined. Still not in the best health but I have learned alot in the past 7 years. Hoping for 7 more!
we can't hear the interviewer:( good video. I go to a PH specialist in Columbus GA. Mine was diagnose very late.
I was diagnosed with PAH within 5 months of having symptoms, because I had a great GP who treated other PAH/PH pt. within 5 months I had my cardiac cath & started on medication, that was in 2012. My PAH is secondary to CREST Syndrome. I feel the same way Donna, PAH is not going to be what I die from I won't let this disease beat me. I have more issues from my CREST Syndrome.
You give me hope for a future
My Mother passed in 2006 of this praying that they find a cure
Could you please type the name of the doctor in New Orleans who specializes in PAH. Thanks
A year ago I was diagnosed with PPH. I was put on Seldinafil (viagra) three times a day and Litaris once a day. This last week they ran some tests (six minute walk and echo cardiograph) and was told that things have made a major turn around. Now they want me to start on a treadmill three times a week. A year ago I had to rest on the landing of my two story house. So the drugs are working. My copay for Litaris is $2780/month. I just learned that they will go generic in six months. So the medical industry is making major in roads in both diagnosis and medications.
Am so sorry God is in control please can you help with the name of the medication you l taking now
How you give me my doctor talk like there wasn't any medicine they can give me and come to find out there's lots of things that they can do
My wife having same problem in 2008 since than she is on medication. In 2014 she got some issues so doctor started Ambrisebtan 5mg od and now she is talking Sildenafil 50mg BD,Ambrisentan5mg, Ivabrid 5mg BD,Lacilactine,Amlodipine 2.5mg
How's she doing?
While I can't find data, but since this condition was virtually unknown 30 years ago, and everyone seems to have comorbidities, I have a very strong hunch that this is caused by drugs given for other conditions affecting calcium metabolism and depleting sulfur. The body wouldn't be stupid enough not to prioritize lungs over everything else with its resources
This was filmed in96 . I’m guessing she’s not with us anymore. Can somebody fill me in on current status.
wrong! this was filmed in 2016, she's survived for over 2 decades. I have PAH secondary,i have lupus and lupus is what caused this. I was told i have up too 5 years to live,
She IS with us!! Look her up on FB. “Donna Ard Head”
@@BrittKatSlat that's amazing and wonderful!!!!! I hope she's still alive. 8/24/22🙏🏼🙏🏼🙏🏼🙏🏼
You don’t have to use oxygen all the time?
She’s a badass lady!
I’ve accepted my fate. On top off ph I have chirosis off the liver. Never had a desire to live anyway .
I am also suffering from pah but don't loose hope
Sorry
Allah loves you more pls trust in Him, n your job on earth is not yet done, pls