I Am Not a Fictional Character

I am not a fictional character- and although that might seem obvious to some, this is something that needs to be emphasized.

A little over a year ago I was feeling well enough to have my first real outing to the mall with my mother. This was the first time that I didn't need an electric scooter or wheelchair. I had gone to the bank and the bank teller started asking me all of these extremely personal questions. While some people like being approached about Pulmonary Hypertension because it gives them a chance to raise awareness, I do not share this same openness. I have shared this story before on the blog, but for those of you who don't know, the bank teller basically asked me if I am dying. She also asked if I need to wear oxygen for "the rest of the time I have left." This was my first real outing- it was the first time I was approached about the obvious illness that I have by a stranger. I nervously answered her questions. At the end of the discussion she FINALLY gave me my money and said it was such an "honor meeting someone" like me. As if it was on her bucket list to talk to someone with an obvious serious illness. Afterwards I felt really hurt- and silly for answering all of her beyond personal and hurtful questions. It was something I didn't feel comfortable talking about- and truthfully, she shouldn't felt comfortable asking a stranger those sorts of questions.

Over that past year and almost a half I have encountered a lot of these situations. At first I first I didn't leave the house much after diagnosis because I could barely move. Then I didn't leave the house because I couldn't handle the comments or rude ogles. It felt like every time I tried to leave the house, something would happen to make me further isolate myself.

I felt brave enough to go to the health food store with my dad last summer to get a smoothie. A man not much younger than myself nearly yelled "DO YOU WEAR THAT TO BREATHE?" It was quite busy- I remember seeing the other people around us turn to stare at me. I said "yes" very quietly and shot him my nastiest bitch face. He replied with "cool," and finally left me alone after he realized I was not amused. It is not cool that I need to wear oxygen. It makes me feel extremely self conscious, it makes my "invisible" illness more visible, it limits me, and I am still trying to wrap my head around being disabled with such a serious diagnosis. It would certainly be rude and unacceptable to ask a stranger in a wheelchair if they required it to move. There is a difference between being curious and being rude- and sometimes being curious does not grant you the right to be intrusive.

I have had friends romanticize my relationship with my partner, as if we are in some kind of star crossed movie where someone falls in love with an ailing girl and stays by her side and go on one last awesome adventure. Pulmonary Hypertension is not romantic. The cannula hurts the inside of my nose when we kiss. I am scared he can see my illness eating away at my lungs when he looks at me. I cannot explain the incredible guilt I feel sometimes when I think about how I may not here someday, and I how I am dragging someone so young along into this unknown journey with me. Relationships are only complicated by illness. It is nothing like the movies would lead you to believe.

When I was first diagnosed I had loved ones tell me that if they were in my shoes, they would travel across the world. I suppose this assumption isn't their fault if they have never met another person with an illness like PH before- movies lead people to believe that this is a liable idea. High altitude, like mountains or air plane rides, are really bad for people with lung diseases like Pulmonary Hypertension. I have not watched The Fault in the Stars (and I don't plan to anytime soon,) but I would assume that someone with end stage cancer that has spread to their lungs would not get clearance to fly, or have the ability to go on such an adventure.

Sometimes people call me "brave", "strong" and worst of all an "inspiration." While these are all positive things, and I know people mean well by it, you have to consider that I did not chose to put myself in this position. If I had a choice I wouldn't have chosen to get sick, let alone choose to have PH. People have referred to me as these things just for doing normal things, or  for doing things that I am required to do now.

What I mean by all of this is that I am not the diagnosis that was given to me.

I have told pharmacies and doctors not to refer to me as a "patient." I am Serena. I am 27 years old. I have a grumpy little black bunny who I have had for 12 years, and she is probably 136 years old in rabbit years. I love chocolate, tea and music. I am creative. I was going to go to university for political science, but decided to major in fine art. I love to read books on the deck in the spring and watch the birds fly by. That is me- those are the things people should ask me about, not the plastic tube dangling from my nose.

PHighter Friday: Susie Alvarez

Susie Alvarez

23 year Pulmonary Hypertension long term survivor

Diagnosed idiopathic and familial, Stage 3

Support group co leader, PH support group of Greater L.A.

Board of Directors, Help Mates 4 Hope, Los Angeles

State of California employee, 31 years

I was born and raised in Pomona, California. I am the oldest of three sisters and the aunt to two nephews. As a child, I was also a champion baton twirler, winning numerous awards.  I graduated college and moved to Los Angeles in 1983 and started a 30 year career with the State of California located in Culver City.  My life was full with family events, work projects, vacations, and much fun and promise.  

While attending additional college and working full time, I began to notice I was short of breath during my busy day.  I continued to keep up with my daily work routine but had to drop my college track and dance classes as I could just not keep up with the physical activity the classes required.  I continued to experience shortness of breath, fatigue, and generally feel out of shape.   I made a mental note to visit my Doctor after the upcoming Fourth of July holiday which I was looking forward to away from work.

On June 30, 1992, my life was forever changed. I cashed my paycheck after work and began the drive home.  Without warning, I had a crushing pain in my chest as though someone was sitting on it.  I pulled over on a very busy city street during heavy afternoon traffic and parked right under the “no parking anytime” sign which caught the attention of a parking officer. She approached my car and I suddenly grabbed her by the chest and gasped “I can’t breathe!”   I saw the urgent look on her face as she called paramedics, who arrived and took me to Cedars Sinai hospital in Los Angeles.   During the week I was there, I had several tests done every day to find out why I was so sick.  I remember coming in and out of consciousness and not knowing what day or time it was.

On the morning of Sat July 4th 1992, the pulmonologist visited my room. He quickly sat down and said

“We found out what’s wrong with you. You have Pulmonary Hypertension which is a fatal lung condition for which there is no cure.

Go home, get your affairs in order, and the best we can tell you is that you have 5 years to live. We will send you home with a prescription to help you breathe but your illness will progressively get worse. Eventually you will need a lung transplant.” 

Then he left the room. 

My mind went into a fog, I felt so confused and very scared. I was hyperventilating through my tears.  My family was located miles away and I did not have the strength to pick up the phone and call them.  I was alone in a cold hospital room and had just received the most devastating news someone could ever hear.    I remember grabbing the nurse by the arm, crying all night, and the only question in my head was

********************WHAT IS PULMONARY HYPERTENSION AND HOW DID I GET IT??**********************

At the time of my diagnosis, the internet and cell phones were not widely available to search for resources. I had no written information or source of support to find out more information about this medical disease that was to end my life.  For 3 years, I did not know anyone who had PH or who knew what PH was. I continued to work but always the question stayed in my mind. My Doctor’s words were correct.  My symptoms of PH progressively worsened, I was short of breath, fatigued, dizzy most of the day and was told I was being referred to a PH Dr. Center for further treatment.

My life was forever changed again when I visited the PH center in Torrance, Ca.   I met a cardiologist who knew what PH was and how to treat it.   He explained I immediately needed an IV line placed in my chest with medicine attached to a pump that would open up the arteries in my lungs to help me breathe.  I would have to wear this pump and medication 24 hours a day which also required care of the IV site and mixing medication that would be attached to the pump.

In March 1996, I was placed on Flolan (epoprostenol), the only FDA approved therapy available to patients at that time, and remained on this therapy for 11 1/2 years. With continued improvement, I participated in several clinical trials for oral therapies to treat PH while I remained on the IV line therapy. I began attending support groups, PHA’s International Conference, and local events in my area for people who lived with PH where I learned more about this medical condition.

I was also referred to UCLA Medical Center, Los Angeles, evaluated and placed on the transplant list for a double lung transplant. I remained on the transplant list for 13 months.  During that time I moved to the top of the list and one evening I was called in for a transplant. The surgeon informed me the donated lungs were not viable and I was sent home. Shortly thereafter, I was removed from the transplant list by my PH doctor who informed me the IV medicine was improving my quality of life.  

Finally, on Oct. 31^st 2007, I was taken off the epoprostenol pump therapy and walked out of the hospital – PUMP FREE!

Before this date, I transitioned to oral therapies Letaris (abrisentan), Adcirca (tadalafil)  and Coumadin and it felt so good to be free of the pump.   

During my journey and with the improvement in my quality of life, I continued to work full time and began traveling both in and out of the U.S. for work and vacations.   In 2011, I volunteered to serve as the co-leader for the PH Support Group of Greater Los Angeles

In June 2013 our group suffered the tragic loss of our co-leader and PH patient, Angel Alcala.   With the addition of a new and energetic co-leader, Joannie Yuille, the Greater L.A. PH support group began an annual fundraising event, A Message of Hope”, in Angel’s honor.

We both enjoy engaging the PH community and provide a comfortable place for hope and support. We hold six meeting a year, one special event each May, and our first annual PHA Chapter sponsored o2 Breathe Walk in the fall.   Our support group has enjoyed speakers from Pulmonary Rehabilitation, the Red Cross, nutritionists, creative writing, networking for caregivers, occupational therapists, musicians, and much more.

I also serve on the Board of Directors for Help Mates for Hope, a non-profit organization based in Los Angeles and committed to filling in the gaps in foster children’s lives.  Our group has been awarded grants from the Ronald McDonald house charities, local businesses, the Los Angeles Police Department, The California Highway Patrol, and many others’ who sponsor our events to provide foster children education, clothing, and a place to learn and grow. Visit us at www.helpmates4hope.org or on our Facebook page.  

I started attending Zumba dance classes in 2012 after consulting with my doctor for a safe and fun form of exercise.  I feel a

“shot of happy” when I feel the music and dance.  I also enjoy spending time with my canine kid, Mimi, a Pomeranian-Chihuahua

who takes walks with me several times a week for exercise.

In 2012, I attended PHA’s Congressional luncheon at the Capitol in Washington D.C. to ask my senators; to co-sponsor the Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073).  We also taught them the importance of early diagnosis with the campaign, Sometimes It’s PH.  

After being married and divorced in the 1980’s, I have lived alone the entire time I have been diagnosed and felt this was my destiny to live alone with this rare disease.     In 2012 I volunteered to assist at the registration desk at the PHA International Conference.  I met another co-leader, Perry Mamigonian, from Fresno CA. We chatted about living with PH and the invaluable resources the PH Association and Conference provides to patients today.   Perry was also a part of the group of patients who attended the 2012 Congressional Luncheon.     In 2011, Perry initiated a campaign in Ca. among support group leaders in his state for a state sponsored proclamation recognizing November as PH Awareness month which he received in 2011.   We attended several PH events

including the 1^st annual PHA Chapter o2 Breathe Gala in San Francisco, Ca.  As PHriends, we discovered we had many ideals and life goals in common and began dating in 2013.  This has been the most significant event of my PH journey to find a partner who loves me!

I’m often asked how? and why I do so much for PHA?  My answer is that I was once a newly diagnosed patient, living alone, and so afraid of dying without knowing what PH is.  I’ve survived beyond the five year timeline I was give over 20 years ago.  My journey was not an easy one by any means.  As a long term survivor, every day is a blessing for me.  The loss of close PHriends to this disease

and the hope I bring to newly diagnosed patients who I meet keep me motivated to work towards awareness, support, and hope for a cure. 

Please reach out to me at:

Ph:  310-938-7930

Email:  batterygrl@yahoo.com

Pinterest:  PH-Greater L.A. Support Group  

Twitter: @batterygrl

Facebook: Greater L.A. PH Support Group

PHighter Friday: Stacie

It was 2002, so nearly 13 years ago now, I was 11 years old just going up to secondary school. I was born with 3 holes in my heart and was regularly being seen at Bristols Children's Hospital at this point in time so I had always been ill and knew how to not push myself in regards to exercise. I had recently had a operation because my condition was declining more rapidly than we were used to I was due for a follow-up appointment at Bristol the first week of secondary school. During my first week of school I collapsed several times because unlike my previous school this school had a lot of stairs. When I was seen by my consultant at Bristol he told me he had no way of treating me any more and I either needed a heart transplant or it could be Pulmonary Hypertension in which case I had to decide whether to go for a heart transplant or try the trial that Great Ormand street were carrying out on children. A heart transplant was obviously extremely daunting for 11 year old me like it would be for anybody, no matter their age, so I decided to try the trial with Great Ormand street and if that didn’t work we could then go for the heart transplant. I was later diagnosed in November of 2002 with Secondary Pulmonary Hypertension.

I was extremely lucky, they inserted a small 7mm (millimetre) tube into my pulmonary artery which helped keep it open during exercise, I was placed on Bosentan and warfarin and these worked great for quite some time I managed to make it through secondary school as a normal teenager or at least I appeared normal to everyone around me, I was also having oxygen whilst I slept, it was when I was 18 and in college that things started to decline again we put me on Sildenfil and then had to up it again because it made no difference, once again it made no difference at this point it I am 20 years old and it is 2011 the time had come for transplant. In the UK you cannot be put on 3 different types of medicines or “therapies” as they call them due to financial restraints within our NHS unless you are on the transplant list so for me to get more meds this was the way forward.

In May 2011 I had to meet with a transplant consultant from one of our transplant centres Harefield this was to see if I was even a candidate for transplant, she decided that I was and and this then proceeded to a 3 day assessment at Harefield hospital just outside of London. For any of you reading this who have Pulmonary hypertension to explain the tests you have to do for a transplant assessment just think of all the tests or procedures you’ve ever had to do for your PH and that’s probably in the region of how many tests you have to do, just to give you an idea. I had to wait 6 weeks following this to find out that Harefield would not transplant me because at the time they could only do double lung transplants and my heart was just way too damaged for that procedure this was when I was passed over to Papworth hospital near Cambridge 1 of only 2 hospitals at the time that could perform Heart and double lung transplants in the UK. I had to do everything all over again the initial meeting the 3 day assessment until finally after 11 months I was placed on the transplant list on April 20th 2012.

Now that I was on the list I could be given extra medication we first tried the Iiloprost nebuliser which I persevered with for 10 months but it did in fact do nothing and my condition declined in that time and then finally we gave me a Groshong Line and placed me on Flolan/Epoprostenal which although has made no significant improvement to my condition has been keeping me stable for the past two years while I wait for my transplant.

On April 20th 2015 I will have been waiting 3 years for my transplant. I can’t say being on the list is easy because it is extremely far from it I’ve had some very scary times whilst on the list but it’s like anything I would imagine you have your good and your bad days but you really just have to make the most of the good days. If you happen to end up in the same position that I am in I think you just have to try and stay positive, I’ve had 3 false alarms for organs in those 3 years and although at the time they were devastating to me because they didn’t end up going ahead they were each learning curves. My first taught me what types of organs I was willing to except, the second showed me just how scared I really was and the 3rd taught me that I really truly am ready for this.

Although I am on the list I still manage a few things I’m very close to getting my history degree after 3 years of studying which I wasn’t sure was going to happen when I was told at 18 I wasn’t allowed to go to university by my doctors. I still manage to be a awesome sister, daughter, aunty and friend. I also actively try to promote and raise awareness for Organ donation and Pulmonary Hypertension. As much as it sucks needing a transplant and having Pulmonary Hypertension I have never let it define who I am or stop me from being who I’ve always been and it has in fact let me help other people. It is a hard road to travel but it’s what you do whilst you are on that road that matters.

Blog:- stacie-lifeisworththefight.blogspot.co.uk
Twitter:- @staciep90
Facebook:-  www.facebook.com/stacielifeisworththefight

PHighter Friday: Kimberlee

I was diagnosed in 2009 with idiopathic pulmonary hypertension at the age of 30. I believe I started experiencing symptoms six months to a year prior: extreme shortness of breath, syncope, chest pain, dizziness, fatigue, and cough. So, I scheduled an appointment with my primary care physician who then referred me to a pulmonologist. The specialist did electrocardiograms and pulmonary function tests, and concluded that I had exercise-induced asthma.

I knew it had to be something else because my mother is a severe asthmatic and commented, “I do not experience what you do on my worst days.” I continued to seek medical attention from hospitals and physicians, but was always told it was asthma, so use inhalers and lose weight - later it was noted the weight gain was from fluid retention. I was also told that I was fine, and what I was experiencing was all in my mind. And, finally, I was told that I must be using illegal drugs because of the symptoms (I never used illegal drugs or smoked.). I thought I was going crazy because I knew I was sick, but the medical community was of no help to me — I was dumbfounded. I continued to pray and hope whatever was wrong would be revealed soon.

Each day I went to work, I had a rough time with my patients because I could not perform my duties due to my limited mobility and declining health.  On one particular day I was very symptomatic and briefly fainted, so my best friend who was also working and another nurse took my vital signs, which were normal with the exception of my oxygen saturation and heart rate. I determined I had to go home because I was very weak, so we immediately notified the Charge Nurse, and my friend took me to my car; she offered to take me home, but I insisted I could do it.

I drove to my parents’ house because I knew I could not make it up the stairs to my apartment and I wanted my mom. As soon as I arrived I immediately told my parents what happened, so they called 911. I was taken to the emergency room by ambulance and tests were periodically done, but doctors did not believe I had a serious condition, and the hospital wanted to release me. My mother immediately spoke on my behalf for them to transfer me to the hospital of her choosing and they complied with my mother’s demand. Upon arrival I became unresponsive and tests were urgently performed, including various x-rays, echocardiogram and right heart catherization, which lead to the diagnosis of pulmonary hypertension by two physicians who are also pulmonary hypertension specialists in separate facilities.

My family was told that if the first hospital had released me, my chances of survival were low because I was at stage 4 pulmonary hypertension. Phenomenally, I survived, and once I became responsive, I was told the news that ultimately changed my life forever. “You have pulmonary hypertension.”  I was clueless on what this meant for my future.

I am now living a “new normal.” I currently am on combination therapy: treprostinil (continuously through a central venous catheter and a portable infusion pump), ambrisentan, riociguat, and calcium channel blocker. I also use several other medications to help ease the daily side effects of the PH medications. I used supplemental oxygen 24/7 at the beginning; then after doing pulmonary rehabilitation for three months, I was able to switch to during exertion or as needed. After two more separate admissions to the pulmonary rehabilitation program, I am fortunate that my activity tolerance is increasing.

Most importantly, I am determined not to allow PH to stop me from pursing my educational goal.  If I give PH the power, then I lose respect for myself. I must be my own advocate and cheerleader.

Also, I lead four support groups because I believe no one should face this journey alone. In addition, I participate in PHA events: I have spoken at PHA’s Congressional Luncheon and two of PHA’s International PH Conferences. I also advocate for those with medical disabilities, speak at community events and at my church.

Additionally, I am a member of the Social Media Advisory Board for PHA, and part of PHA’s Generation Hope, and a mentor for United Therapeutics’ PH peer network program. I am also the co-founder of a very active patient-led PH group on Facebook, PH Family, a growing global forum since 2010 for patients and caregivers to voice questions and concerns about this life threatening disease and to support each other.    

Pulmonary hypertension has taught me to live life; I am more appreciative of my quality of life than the quantity. I am blessed to have loving parents because without them and my faith, I would not be able to overcome the daily challenges I face. This is my journey and I must be a testimony, so that others will see that there is life after being diagnosed with a chronic illness.

As a PH community we must stand together and be “empowered by hope.” Every day I want there to be a medical cure for this rare disease, but until there is, I must cherish my moments with my family, friends, and church family because they are a wonderful support system. Pulmonary hypertension has changed my life drastically, but I am determined to ensure it does not negatively impact my life entirely.  I know what is important to me; therefore, I will not allow PH to have power over my destiny.

My next goal is to return to the working world and have the most important titles: “Mrs.” and “Mommy.” My journey is not yet complete — to be continued!

My contact: livingwithph@gmail.com

PHighter Friday: Janeris

 Pulmonary Hypertension is a disease I had never heard of until it almost killed me. I've suffered with Lupus since 1997. I was 16, a senior in high school, and began having severe joint pains and fevers. I've dealt with the countless effects of that deadly disease for so long, I didn't look too much into it when I started having shortness of breath in 2006. I figured the fatigue, shortness of breath, and rapid heartbeat were just part of it. I went to a couple of doctors who just confirmed what I thought. It was the Lupus. They'd tell me to take more Prednisone for the inflammation and I did. The shortness of breath kept getting worse. I couldn't bend over without getting dizzy. The doctors I saw would say my heart was working pretty hard but for me this was all normal. I went on living; suffering.

I met my now husband in 2008 and our relationship quickly moved toward marriage. I warned him that I had a lot of issues and might not be able to have a baby. He said that he didn't care. He said God would make everything ok.  He was very supportive through it all.  I still worked out every week and was very active in church. My lack of health couldn't stop me.  We got married less than a year after meeting. It was just in time for my biggest supporter to get the test of his life. We chose to get married in Mexico. It was 4 wonderful days spent with family and friends. We stayed 2 more weeks for our honeymoon. For someone with breathing problems, Mexico is not the place to be. It seemed much harder to breathe in Mexico than in Miami. We still did everything we set out to do. We went zip lining, swimming with dolphins, walking in the city and more. Most of it, however was done with my new husband carrying me. Everyone thought it was so cute because we were honeymooners but I was in severe chest pain and honestly just couldn't walk. The last 2 days of our honeymoon were the worst days of the trip. I began hallucinating and having severe chest pain. I thought of calling 911 but was afraid I'd be stuck in Mexico longer than I wanted. I sucked it up and relaxed until we went home. We requested a wheelchair at the airport but still didn't think about asking for oxygen. I didn't know what was wrong. The air in the plane was much thinner and I thought I was going to die.

We went from the airport in Miami straight to the hospital where I stayed for 3 weeks. I just wanted to go home to be with my husband for the first time. My oxygen levels were at 50%. I was immediately put on oxygen. This is where I started to hear that I had problems with my lungs and might need a lung transplant. Once I left the hospital I sought out a pulmonary specialist. I found a great one in Cleveland Clinic who knew exactly what to do. I was quickly taken in for a right heart cath among other important tests. I was finally diagnosed with Pulmonary Hypertension and put on the right medication. I survived on Revatio for a while. But having to take it 3 times a day proved too much for me and within time I had worsened my condition by not taking the medicine properly. In 2011 I started passing out often. I once passed out at a doctor's appointment and was taken to the emergency room. That was the beginning of my new life. There I was put on Veletri, an intravenous drug. It was a tremendous loss of independence and control. It was a severe shock for me.

I was so sad and had a hard time picking myself up. Every night was hard for me. Tears would soak my pillow.  I didn't understand my new body changes. There was constant urinating, swollen ankles, hot spells, weakness, jaw pain, headaches, you name it, I had it. How would I ever get through this? I felt my life was over.  My church family came through to make sure I did get through it. They knew I couldn't cook, clean, or barely move. So for weeks they came and took me to doctor's appointments, cooked, and were right there for me. What a team God placed in my life. I am loved! Another thing that got me through it was something that my Veletri nurse told me. She said I was allowed 5 minutes daily to feel sorry for myself. After that I was to enjoy the rest of my day. Eventually I didn't need those 5 minutes. That was an important part of the early stages of my recovery.

I began to see that light at the end of the tunnel again. I knew there was a purpose, I just had to find it. Time passed and I was tired of being tired. I had gained 30 lbs. from the prednisone and lack of activity and was still having a hard time breathing. But after 3 months it was time to get back to work as a full-time photojournalist at a local newspaper. Slowly, I regained my strength and started looking for alternatives. I found a functional medicine doctor in my area and she taught me the importance of the right diet for my body. My joy came from documenting my journey on a blog  called My Clean Cutting Board. It dealt with showing people what I was going through and how I was improving my health through whole foods. What a difference eating right made. I took out gluten, dairy, potatoes, eggs, coffee, alcohol, and a few other foods that were causing inflammation and a negative immune system response. I started to get better faster than I thought I ever would. I started the gym again full force. I started working at my photo studio, which I run on the side of my full-time job at the paper. I started singing in church again. And less than  1 year later my husband and I began talking about adoption. He saw my progress and together we decided that we were ready to start a family.

Soon the good food changed my body completely. I was taken off the prednisone and the doses of some of the other drugs I was on were lowered. I was so happy. Just 2 years after I was put on Veletri, we became foster parents. Doctors said I was in good health and gave me clearance for this huge task. We got a 2 year old boy in May of 2013. I realized then that all I had gone through was for this moment. You see, he is autistic and was a handful. He cried when he heard loud noises. Not out of fear but out of pain. I couldn't control him or anything he went through. He was a little Tasmanian Devil.  Through my diet change I had learned about the benefits of a gluten and dairy-free diet on children with autism. I cried tears of joy when I realized all my struggles meant something. I changed his diet and he got better. As I was taking care of him God was taking care of me. I continued to get better and they called me to take in a little baby girl. She was 3 months old. I didn't know how I would do this. Here I am with two babies within a year,  health issues, and 2 full-time jobs? Was I nuts? I knew God was in control. He had a plan for me and He wouldn't let me down.

My husband and I have been taking care of our babies for almost 2 years now. We are close to adopting one of them. I have since lost 40 lbs. (They really get you moving don't they?) My husband has been the best thing that could have happened to me. He came at the perfect time. God has a plan for me and I didn't let PH keep me from fulfilling that plan. I could have been in bed feeling sorry for myself. That would have been easy. But I said NO! I got up and chose to change my life. I chose to seek alternatives because I refused to believe that I would need a lung transplant, that I was sick, that I would not survive. I will not be held down. God needed me for something amazing and I didn't want to let Him down. I am beating PH!



My Clean Cutting Board

PHighter Friday: Carole

Like most people with PH my journey began without my noticing it and it gradually built until my old life was no more, a new one was to begin.

After going for a walk with my husband I noticed that my feet did not want to climb the steps, they kept hitting the edges, it was just too hard to pull them up all the way to the top.  I began to find it difficult to walk up the incline to our house.  I felt dizzy and sick and my legs were heavy.

One day after walking through the woods it just got too hard walk the the incline back to my house.  Time for specialist advice.  I was fortunate enough to meet with a doctor who had heard of, though not seen, PH.  He advised my husband to take me home, back to the UK, we were living in Spain at that time. He said I had maybe six weeks to live!!!!

The despair hit me like a brick wall, and, of course, we Googled PH.  Not a good plan at all.  On the journey back home I cried because I could not dress myself!,  looking back I can't believe the despair and hopelessness that hit me.

I was fortunate enough to be met at the Royal Hallamshire  by my A Team, my angels.  I was told not to get out of bed, they feared a heart attack as the right side of my heart was five times the norm.  I was told I had many tests to get through but would be pushed to them all. I must not walk! I was immediately given a cannula in my hand and attached to a drip pumping  iloprost into my body at two minute intervals.  Then the tears began, too many to mention but I remember the professor sitting at the side of my bed and telling me I would need a Hickman line inserted into my body that would enable me to get out of bed and carry on with life as best I could.

Line inserted I went home after five weeks to begin a new phase of my life.  It was hard, the things I could do before I could not now do.  My husband  took over the roll of housekeeper,  he also took over the roll of nurse.  He changed my Hickman pump daily and made sure it was kept clean.  My fingers didn't seem to want to work any more and my brain had turned to mush! I remember one day thinking I would vac the house before my husband came back from the shops and the despair I felt when I realized I could not even push the vac around.  Then came a year of adjustment and yes, I will admit of self pity.  Why me, what life did I now have!  It was hard, so hard but after a year I was given more tests after one of my six weekly visits to my hospital and how can I ever forget the jubilation that I was to see that day.

My bed was crowded around with all my PH team. Beams were to be seen by all.  My specialist doctor was all but jumping with excitement when I was told that the iloprost had worked!  My heart was how the size of a normal persons and my right heart catheter showed it was now 38!  Now a new journey began, one without the Hickman line and one with oral medicines, ambrisenten and sildenifil.

It took three months for the change over to be completed and for my new life to begin.  Slowly my body adjusted to the new medication and slowly I began to climb out of the pit of despair I had been in.  Small steps, baby steps at first.  I was scared but began a regime of walking further each day, always with someone at my side as the fear of dizziness of  collapsing was with me but I persevered,  gradually I began to feel stronger, was able to do more, was able to help in the house, able to shop on my own, able to be my own person again.

Recently I walked my personal best on my six minute walk test of  720 metres.  Some days I can walk eight miles, though in fairness five is the norm, some days I can't do much, hence the roller coaster ride we are on.  At last I had joined the people who were responding, who were living with ph and not letting it beat them.

I remember at the beginning of this PH journey looking out of the window and seeing people walking, just walking and giving it no thought.  How envious I was of them and thought it would never again be me, now though it is.  I am not saying I don't get bad days, we all do but the good far outweigh the bad.  My mobility scooter has not been used very much in the last two years, it sits in the garage and sometimes, though rarely now it gets used.  Most times my legs do the walking!

My advice would be to push yourself a little more each day.  Don't set out to do a marathon, take small steps and find what makes you comfortable.  Listen to your body, if it says slow down then do it, if it says " I can do a little more" then do a little more.

Remember PH medications are changing all the time, research is going strong.  There will be a cure  for this and I believe it will be in my lifetime.  I trial anything I am asked to trial.  I want to be part of the team that finds this cure and beats it!

Stay strong in heart and spirit.  When the bad days hit remember it's a roller coaster, the good days will follow.  Remember we are a PH family and we have friends here who can relate to everything we are going through,  my journey began in a wheelchair but I have fought to use my body again.  Fight, fight , fight and keep a good spirit within  you, believe in yourself.  Most of all remember you are not alone, there are people here who KNOW exactly how you are feeling. 

You walk with friends. Xxxxxx