Here, we highlight stories of courage and fortitude, put forth in the patient/ caregiver's own words, with virtually no edits.

Would you like to share yours?

Join us at the patient/ caregiver group. We are all ears.We shall publish it here only if you allow us to and with the name you are comfortable with.

 

Janet Stone

www.twostonestudio.com/

 

Pooja S.

46 years, Mumbai Resident, diagnosed with PAH in 2005

Her spirit to go on in the face of extreme odds inspires us at PH India.

This one is straight from her heart:


I was suffering from Asthma/Bronchitis for nearly 20 years, so breathlessness, wheezing, coughs and colds were regular symptoms for years. I was familiar with the names of inhalers, nebulizers, and steroids since I was in and out of the hospital many a times. But in 2005, when my breathlessness was so severe that I could not walk even a few steps without gasping for breath, doctors thought it could be something else, so more tests were conducted. Angiography was normal, showed swelling of the right side of the heart, but 2 D clearly showed PH pressures at more than 100 mm Hg. So this was the first time I heard the word “Pulmonary Hypertension” or ‘PH’, which did not ring a bell then.

 

On digging further, I came to know about this dreadful disease. PH affects 4-6 people in a million; unfortunately I was among the “chosen” ones. No medication, no cure, 4-5 years to live, in short ‘NO HOPE’, which left me totally shaken and I felt the world crashing down on me. The uncertainty of life disturbed me mentally and the physical suffering became unbearable. My son was only 10 years old then and I did not want to die so soon; I wanted to enjoy life. Panic caused us to run from one doctor to another, be it allopathic, homoeopathic, or ayurvedic, but many doctors had not even heard of the word PH since it was a rare disease.

 

Asthma was so much better than this ‘PH’ thing. The nagging question was, “why me ?”, “what did I do wrong?”, “I was so good to every one!”. These thoughts haunted me for years as nobody had the answers.

 

My family was a great support – my mother and my husband were my two arms and my brothers were my backbone. They were hell-bent on pulling me through this. My brothers sent loads of information about PH to make me aware of this disease and of ways to fight it. With very few diagnosed patients in India in 2005, my brother made me a member of the PHA group/USA and I gradually started facing the truth, reading articles regarding PH, updating myself on research, medicines, and lifestyle changes through emails, websites, and magazines. This helped me manage my day-to-day activities in a better way and increase my positivity.

 

Years passed and yet there was still no approved medicine on PH, except sildenafil. A relatively new treatment, Bosentan, was prescribed to me by my doctor. However, we would have had to import it at the cost of $6000 per month, which was impossible for us to pay. Out of divine luck in 2010, we came across a clinical trial in Pune (India) with a drug named Sitaxentan (Thelin), which was similar to Bosentan in its mechanism of action. A year passed on this trial drug and I was feeling better, but unfortunately the trial by Pfizer was suspended abruptly due to 2 deaths from liver toxicity.

 

So I was back to square one with my condition worsening once again, was often hospitalized, was dependent on external oxygen, and life was miserable. My family and dear friends encouraged me to keep faith in GOD, be hopeful, and believe in miracles. And now, I get the same $6000 medication at 1% of the cost, arriving at my doorstep. And soon, I am also hoping for a ‘cure’.

 

I have my good and bad days but I try my best to enjoy my life when I can and just rest and relax when I can’t. I am a Fashion Designer by profession and I keep myself busy in my boutique and read a lot. I have realized that it is very important to be mentally strong, positive, keep hope, pray, and have faith that a ‘cure’ is around the corner.

 

I hope my PH journey serves as an inspiration to you to be positive and believe that nothing is impossible. Concentrate on the good things that life has offered and indulge yourself in hobbies you love to engage in. Keep priorities of health first, eat well, sleep well, help others, and keep smiling.

Keeping all of you in my prayers!!! Lots of love. "


Deepak M.

Delhi, caregiver to his mother - 59 years, PH secondary to Connective Tissue Disease

His hopefulness and proactive stance in dealing with his mother’s illness has placed the family in a happy spot. Here is what his mail said:

 

It started about 8 years ago, when my mother started falling ill once every year and simple ailments too took a long time to be cured. Initially it was manageable. However, later, my mother started falling ill frequently and every illness came with severe complications.

 

In the year of 2011, around October or November, my mother felt breathless for the first time and we took her to a hospital in Indore (I was posted there). The chest specialist saw the echo report and said everything was normal (by the way, at that point, the only pressure we knew of was the blood pressure). Today, when I look back, I am certain that that echo report was hugely inaccurate.

 

The chest specialist told us that it was asthma and advised inhalers as a remedy. Our family doctor had also advised to go in for the SLE test at that point. The specialist in Indore said it read negative.

 

My mother temporarily felt comfortable. However towards the end of June, 2012 .… she was wildly out of breath. She was, at that point at our native place. We took her to Delhi.

 

The next thing I remember is my mother being in the intensive care unit on the 25th of July 2012 …. I & my father waiting outside to know as to what exactly it was that she was ill with. Doctors at the Escorts Hospital found it out to be PH due to CTD as the ANA profile had come positive. They followed all procedures to ascertain and tell what exactly it was.

 

My mother was put on high doses of steroids and we consulted a Rheumatologist.

 

By the grace of God, my mother’s PA pressures are 60Hg and doctors are hopeful of bringing it down to the normal level of 25-30Hg. It gives me hope too.

 

My present doctor says that my mother’s life ahead is a minimum of 25-30 years. Any practitioner to say anything otherwise is unlikely to be an expert. Change over to a good, well read one if that be.

 

Wai-Ling

33 years, Vancouver Resident, diagnosed with PAH in 2010

Refusing to buckle under when she was debilitatingly ill, she charted her own course with hope, faith and a prayer on her lips. She has come far with Traditional Chinese Medicine (TCM).

 She has penned her journey for PH India:

 

My PH story began shortly after the birth of my daughter. I experienced shortness of breath when pushing my baby stroller up hills and had a persistent cough which I reported to my doctor. I was told it was probably asthma. I kept reporting my symptoms for a full year after my daughter was born. Chest X-rays were done, but showed nothing. Finally, a year later the disease had progressed to the point where it was detectable. I was sent for an ECHO and was diagnosed with suspected Pulmonary Hypertension in February 2010. I was 31.

Additional tests followed, (V/Q scan, Angiogram, Cardiac CT, Bubble study etc…) and confirmed the diagnosis of idiopathic primary pulmonary hypertension. I was started on Bosentan that year and my condition quickly worsened. I went to the emergency room four times that summer. By September I could no longer fold laundry or wash dishes, or even walk to the end of my driveway. Finally, one morning, I could no longer go to work. I would experience shortness of breath from the effort of simply standing up to get into the car. I was admitted into the hospital and started what would be a five month break from my full time job. This was when the disease was at its most severe. My family and I did not think I would live much longer. At night, I would discuss with my husband details of my will and how he would manage to raise our daughter if I were to die.

 

As I was preparing for the worst case scenario, I was still searching for an effective treatment, a miracle cure. I'm Chinese and had seen Chinese Medicine practitioners in the past for minor ailments such a rash. I’ve heard they’ve had success in treating other chronic ailments such as infertility and eczema. I wondered if Traditional Chinese Medicine could treat Pulmonary Hypertension and found some hope in a testimonial from a patient in Maryland who had Lupus. http://www.anmedicine.com/id3.html.

I know it sounds crazy to believe something that you find on the internet, but the testimonial was so detailed that I believed it must be true. An uncle in Hong Kong (who works in health care administration) sent me a recommendation for Dr. Che in Vancouver and I started seeing him shortly after I was discharged from the hospital in Sept 2010.

 

The first time I saw Dr. Che, I was in bad shape indeed. My PH had by then progressed from Level I/II to Level III. I was hypothyroid, had Raynauld's syndrome, suspected connective tissue disease and a shunt in my circulatory system. He did not make any promises to cure me, but said he would try his best. I did acupuncture that first time I saw him. He inserted just a few needles in my belly button and I lay there for about 40 minutes. I felt a strange sensation during the treatment, like an egg shaped mass formed in my chest and disappeared. Dr. Che said it was a blockage of Chi that was cleared by his treatment.

 

Dr. Che’s diagnosis in traditional Chinese terms was “excess internal cold and Chi deficiency with a kidney deficiency as the root case”. He said that kidney deficiency is common in women after childbirth, but it manifests itself in different ways in different people (The kidney system in Traditional Chinese terms is different than the kidney organ in Western medicine). I saw him for acupuncture three times a week and took a prescription of a Chinese herbal tea every day. That first day I saw him, I could hardly make it out of the car to stumble into the doctor's office, but after about two weeks, I was able to not only get into the office, but walk across the street, buy two heavy bags of groceries and walk back to my car without symptoms!!!

I remember calling my husband on the phone that day and nearly crying because it was the first day I had hope that I would be cured.

 

It wasn't over yet though -- that winter, I was very ill. I was catching every cold and flu that my daughter brought home from her daycare. We even had to stop taking her for a few months because I was getting so sick. For months I was suffering from different illnesses including high fevers, insomnia, painful sores in my mouth where it hurt to even drink water, sore throats, laryngitis, strange mood swings. There were days where I wasn't sure if I would get better and if the TCM treatment was working. But my husband reminded me how my stamina was better and that I could walk in the evenings again. My Raynauld's too had improved. Also in spite of everything else, I had managed to stay out of the emergency room. Eventually the season of illnesses passed. I kept up with the treatment and was able to do light chores again.

I had never been so happy to do dishes, laundry or even cook dinner for my family!

 

In February of 2011, I started working again, still doing my acupuncture treatments three times a week and taking chinese herbs. Mid 2011, I started to reduce my dosage of synthroid, my thyroid medication because I was having problems sleeping and showing some symptoms of hyperthyroidism (even though previously I was hypothyroid). Gradually I reduced my dosage from 100mcg to 75 mcg to 50, to 25, then to 0 over a period of several months. My Western Doctor said it was amazing because she didn't know of anything in Western Medicine that could cure a person of hypothyroidism. The whole time, she was monitoring my thyroid levels with blood tests and I never went out of the range for clinical hypothyroidism.

 

I was able to work almost full time, only taking time off for my medical appointments. I was able to start conducting my church choir again and do chores around the house. I still got tired more quickly than a normal person, but gained so much since even a year ago. The winter of 2011, I got sick only a bit more than my husband and didn't even have to take a day off from my job due to illness. My 6 MWT and ECHO numbers improved from 110 to the 60-70 range.

 

In 2012, I experienced another setback. I started to experience fatigue, fevers and sweating about once a week starting in July. By November, these had progressed to full blown colds with laryngitis, sore throat, stuffy nose. I would seemingly fight off each infection in a few days, only to catch another one in the following week. Dr. Che’s opinion was that my sudden frequent infections were due to an external factor rather than an internal one. All of the signs he saw in my body (my pulse, pallor, the color of my tongue) showed that my immune system and body was stronger than in 2011 and 2010. Also I was managing to expel the pathogens after a few days with fevers and sweating, so something external was causing me to get sick. Traditionally, the Chinese use Feng Shui and even Chinese astronomy to help with the treatment of the disease. After questioning me on lifestyle, Dr. Che counseled that I change my environment. I moved to my parents’ house with my young daughter. Inexplicably the severity of my colds was reduced significantly as soon as I moved.

 

It has now been 3 years since my diagnosis and 2 ½ years since I started seeing Dr. Che. I believe Traditional Chinese medicine has helped me regain my health. I haven’t had a single trip to the emergency room since starting the treatment. I’ve never again had trouble walking on level ground or doing simple chores. My Raynauld’s symptoms have disappeared. I am no longer taking thyroid medication. I’m no longer taking a blood thinner. I have more energy. My whole body feels warmer. I can see the “moons” on my fingernails slowly coming back again. My hair is growing in thicker. I’m starting to feel normal again.

 

I am such a skeptic and I don't think I will be convinced that the TCM has been working until I am off all my medication, but already I have improved so much. I am so grateful to God, Dr. Che and my family and feel like a person given a second chance here on earth.

 

Here is another version of my testimonal which I wrote for Dr. Che on his website:

http://www.drche.com/TestimonialPulmonaryHypertension.html

 

My thoughts and prayers go out to all of you struggling with this disease and I hope my sharing helps someone out there in some way.

God bless you all.

 

Note: Pulmonary Hyperstension Unit, Ireland offers TCM as a choice.