Pulmonary Hypertension | Tara's Story
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- เผยแพร่เมื่อ 21 ส.ค. 2024
- It's been 10 years since Tara passed out at the top of the stairs at work-the point when she found out she had pulmonary hypertension. Pulmonary hypertension is a type of pulmonary vascular disease, typically caused by common conditions like congestive heart failure (CHF) and emphysema. It can cause high blood pressure in the lungs and damage to the heart, as well as trigger severe breathlessness.
Tara started seeing a doctor at a hospital in Newark, and they told her that her best option was to wait for a lung transplant; however, they refused to perform the surgery there because they didn't have enough experience. Instead, she turned to Penn Medicine, which has performed more than double the amount of lung transplants than any other center in the region.
"Penn Medicine’s survival rates for pulmonary hypertension are really great," Tara said.
She became very close with her care team, namely her pulmonologist, Dr. Kerri Smith. Instead of waiting for a transplant, Dr. Smith decided to start her on a new drug that was just coming to market. And it worked - soon Tara was completely off painkillers and oxygen. A month later, she was taken off the transplant list.
Today, Tara is doing great. She's back to work and doing the things she loves.
Learn more about pulmonary hypertension: bit.ly/2ISXV7s
Connect with Kerri Akaya Smith, MD, medical director of Penn Medicine's Pulmonary Hypertension Program: bit.ly/2Ix7l9l
Request an appointment: bit.ly/2GvRkuv
#PulmonaryHypertension #PennMedicine
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I was diagnosed with pulmonary hypertension a year and a half ago when both ankles swoll up unexpectantly. At that time my resting pulse was around 120, my oxygen level was in the high 70s, and I moved like a snail. I was put on lateris once a day and sildenafil three times a day. The results are that now my blood pressure in my lungs are decreasing, the size of my heart is decreasing, and my six-minute walk is resulting in an increase in distance. I am now on a treadmill for 20 minutes daily and up to 3 miles an hour with a 5-degree incline. My resting pulse is in the high 70s and my oxygen level is in the low to mid-90s. The doctors are expressing total surprise at the reversal. By the way, I am a 70-year-old male. I attend the Pulmonary Hypertension Clinic at Stanford University Hospital. These people have been a Godsend!
Toophless One , hello, im gina a pulmanary hypertension patient from the phils...im 18yrs with PAH, but im now deterioration...im taking sildinafil 25mg 3 times a day and lanoxin once a day. My oxygen level is about 70s, 24hrs oxygen and bed rest...sir, what you did surprisingly that everything was fine and happy for that. God is good!!
Thank you, both, for sharing with so much information and hope!
Sister where are you from. I also have the same problem to me .
my mum is also 70 years and 24/7 on long term oxegn and bed she got sever PAh and right heart failure how did it posible its a mircale btw happy for u sir
I live in Sri Lanka, now in Germany. I had pulmonary hypertension 3 years ago. I can not have a baby. Help me .Be free from this disease
I came here studying for my physiopathology exam and now am in tears. So lovely. Happy for you Tara.
I live in Sri Lanka, now in Germany. I had pulmonary hypertension 3 years ago. I can not have a baby. Help me .Be free from this disease
I just got diagnosed with pulmonary hypertension I am 29 years old and I am so scared.
Same here i diagnosed phulmonary hypertention 2019 im 33 yrs old now im scared also like you i dont know what to do im from philippines😔🇵🇭
I just know i got ASD and PH literally a month ago, cause i get tired easily maybe since 7-8 years ago, but recently get tired so easy and get chest pain. Worry so much. I'm having revatio/sidenafil, 3 days now
How are you doing I also just got diagnosed
I’m 36 years old and just got diagnosed last week, I am so afraid
@@Hizsturyndamakn_ I’m 21 I havnt been diagnosed yet but I been pretty much struggling with all this heart palpitations, SOB. My echo showed 26 so I’m sure it’s much more worse now.
Our experience with PH was heart breaking, my sister was placed on lung transplant list but she deteriorated fast she died waiting for a donor. You are an inspiration to me, as I am battling PH too, what medicine are you on?
Remodulin I think!
Hi Queenie, how are you today?
Bosmon and sidenafil (penegra)
@@cookandlivewithsarah.c I’m 21 years old and mine showed 26 Holly shit I never knew about this!
Sildenfail
I'm an organ donor. They can take whatever they can use to improve someone else's life, then donate the rest of me to science.
Dont make joke of sufferers
THANK YOU JESUS I LOVE STORIES LIKE THIS.
So glad to see that someone is being taken care of, I’m spending thousands of dollars and getting zero humanity in Chicago being pushed from one doctor to another while they take my money
You go girl don’t give up. God bless.
Dr. Smith save my life
Thank God for good doctors
Dr Smith is my Pulmonary Hypertension specialist too ❤
Praise GOD!!! ❤️❤️❤️❤️ this!!
I am a PAH patient. Diagnosed 4years ago.
God bless you Dear Tara, But what was the Medication, One of my family members has the same PH?
Plz tell me medication i m same patient plzzzzzzzzzzzzzzzzzźzzzźz tell me plz tell me fast i it request dear 😞😞😞😞
It’s just an ad for Penn Medicine...
@@muhammadfarooq3235 sidenafil(penegra) and bosmon are quite effective
@@muhammadfarooq3235 Hello how are you now
I was referred to see Dr Smith and have an appointment next month
My cause of pulmonary hypertension was originally due to pulmonary embolism blood clots in 2017 and 2018. Clots are gone but I still have a low level of hypertension.
Keep pushing. Keep striving.
my sister has PAH and is on a pump using Remodulin. It's weird that no mention of what medication it is that helped Tara. Why would that be?
Because it’s not for everyone, my daughter had an adverse reaction to it a few years prior to her passing.
Because it’s an ad for the medical clinic noticing more,
@@MANDINGO74 to what?? They didn’t say what drug it was and no drug is for everyone yet they’re all still on tv and magazines 24/7.
G-d Bless you for sharing your story.
I just lost my nephew to this I’m here trying to understand he was only 24
Hello, I hope you well. Your story has touch me and I m glad u r doing OK now. If u don't mind me asking, what medication u were on?
What was the name of the medicine
Exactly, I'm trying to find out too. Peace and blessings 😊
What is the medicine for pulmonary hypertension?
There's usually 3 different groups of vasodilator medicines that work in 3 different pathways. Some just need one, while more severe cases may need one of each.
That is great...
What meds ? .I need to get and feel better..
Remodel in is the medicine which helped tara? Is it injection or tablet? Are there any better medicines ? What about adempas?
I take both. Started in February. So far I I feel worse
I lost my 4 year old to complications from Pulmonary Hypertension it’s a deadly disease.
Wow sorry to hear that
That is horrible, horrible, horrible. SO sorry.
So sorry. Just not fair. No words
I also have PH, I'm sixty so no chance of a lung transplant, but I have a grandchild coming I want to see grow up. What's the name of the medicine please. God bless you, keep getting stronger.💕💞
Remodulin I think it's called!
hi gisele, im 61 with this terrible disease also. i would love to talkto you sometime.
@@perinorrell1925 I’m 21 years old with this…. I see my cardiologist today hopefully he can help more .
@@MzDaUgly heyy I have same problem of pah .. doctors said no to operation as my problem is by birth only 🥲
I live in Sri Lanka, now in Germany. I had pulmonary hypertension 3 years ago. I can not have a baby. Help me .Be free from this disease
You can't as there's no cure
What's the name of the drug?
So what's the name of the medicine?
In India we don't have any Doctors for PH m still on sildenaphil. My doc said to register for lung transplant but list is too long. They don't prescribe new medicine as well. I m planning to get oxygen treatment but no doc advised it so can I use oxygen??
How long have you been suffering Ph? After how many years in this disease patients need lungs transfer ??
Yes please use it if you can afford it
Are you sure ? Man i got my treatment from AIIMS .. no operation is possible for this pah problem I have asd too.. I got lifetime medicine
kudos
I was watching to find out what was the medication, but it wasn't mentioned. Can you please tell us?
Remodulin I think!
Why is it you're not sure why you're saying I think
And can u tell me the name of medicine which changes ur life
I m also suffering from pph
The medicine could have been remodulin.
That's what my guess is. My sister is on it.
@@sherryu I was on it for over a year. My comorbidities made it impossible to have a PICC or central line. It also cause the subq to be beyond painful. Luckily I'm kept at a decent pressure with oral medications.
Hope it's helping your sister!
No, remodulin has been available for too long. I have been on it since 2012, and it was available for years before that. Its a subcutaneous site, very painful, could be what she was referring to being on painkillers. Tara said she was waiting for it to come to market. Remodulin has been on the market for too long to have been the drug!
I have asthma pulmonary artery hypertension emphysema I just got to start meditation on 1 -17-2024. I started having breathing prombles in may 2021 when I became pregnant with my second baby doctors didnt know I had them diseases until August 2023 need a lung transplant by the time im 40 i just turned 37 hoping meds will work im not looking forward for a lung transplant drugs i just started is called Sildenafil
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.
I’m very sorry to hear of all your troubles. The healthcare system is very flawed and it seems most doctors just don’t care anymore. How have you been holding up lately? I was told I have mild pulmonary hypertension and my cardiologist doesn’t want to help me.
I’m having the same exact problem but I’m undiagnosed. I know how you felt honey. It’s horrible. Horrible. I am so sorry this happened to you. I hope you are still alive my dear. 🥺
@@Sh3lbz hows it going?
🙏🙏🙏🙏🙏🙏🙏
Hello I have severe PAH. Can you share the medication you were given?
Have u got medication?
So what was the medicine 3:45? There is a new one called Flolan (epoprostenol sodium)
I have severe pulmonary hypertension can you help me for a Lungs Transplant
I just knew i have ASD and lead me to know that i have PH bcs doctor gave me Revatio/sildenafil and i keep searching what that is. Bcs literally i just find out my heart disease "yesterday", and now i have to find many information about ASD and PH
My daughter too has the same problem. I'm from India. Can you please guide me for treatment?
I just follow the doctor instructions, so far i just get revatio for the treatment, others i did many test. 2 types echo test (USG and from throat), MSCT. now i'm waiting for catheter procedure
hi, deanya, im peri. im pretty sure i have ph also.just need to be diagnosed. 6/19 i went to the er 3 times in one week. i have asthma, so they thought it was that, but it wasnt. i had a chest ct and it showed ph, but the doc thought it was artifact produced by the ct machine. so, here i am almost 4 yrs later and just now theyre figuring, yea, i guess it was ph!! ive really ony been sick since 7/22. no energy, a constant upper wheeze nobody could figure out. i figure mine ph was caused by pain med drugs ive been on since 2011.i would love to talk to u. im 60 trying to navigate this hellish disease. its nice to know im not alone.
@@Shal1109 ma'am you should took her to AIIMS for treatment ... I also got treatment from there only .. but operation is not possible.. lifetime medicine
Dr.Kerri Akaya Smith, MD, medical director of Penn Medicine's Pulmonary Hypertension, contact/email details can be posted? Thanks
Hi Kay, you can request a callback about an appointment with Dr. Smith by calling 1-800-789-7366, or by submitting this form: www.pennmedicine.org/request-an-appointment?req=Kerri+Akaya+Smith%2c+MD
Hope this helps!
My son is 12 years old.. his echo shows estimated 45 mm Hg PA.. I m very worry about him.. is any treatment available
There is no treatment at this stage sister but if he lives healthy life it would be pause at one place
Am too diagnose with ph n mine is 45mmhg at 19
Don't scare sister enjoy ur life with healthy living
I am 50mm. I get revatio/sidenafil. I am 35 just knew it a month ago
@@danyaa23 do you have heart palpitations all day? And shortness of breathe
I have pulmonary hypertension as well. 😢😢😢😢
Dont wry brother there lot many peoples are there even me too... Just take doctors advise and beintouch with them
I also have the same problem
@@SachinPatil-yc8nl Where Do You Live Brother
Just knew it a month ago, for a moment my plan was like shatered
@@danyaa23 do you take meds for it what do you do to help?
How old is she?
Video said she turned 30 in 2008.
Hope my girlfriend do the same thing 😔
My wife diagnosed with pulmonary arteries hypertension and doctor prescribed her sildenafil 20mg 3 times a day,torsemide 10 mg 1 a day and macitent 10 mg 1 a day.
Please does anyone know a specialise doctor who treats a pulmonary arteries hypertension or any suggestions please help me out for this
Where do you live?
@@raewaddy4679 sis where are you from you can help me
I have the same thing you do.
wonderful You can also checkout my article in pediatriconcall on the same topic
prevention is take multivitamins and regular exercise. Maintain high level of hormones like choline, testosterone. Dont try to lower level of vitamins and protein in your body for it will trigger. This is base on my experienced.
Prevention is great but like me it is hereditary. Mutated genes not known about until now. Not a lot can be done to prevent it.
Sorry but you’re highly uneducated in pulmonary hypertension.
For me it's bcs ASD