Friday, 30 January 2015

PHighter Friday: Carson

My journey with Pulmonary Hypertension began before I even realized it.  I thought I was out of shape and needed to train harder. Looking back I now know what I didn’t know then; it was PH and not my lack of training that was keeping me from being able to run as far and fast and long as I wanted.  In middle school and the early part of high school I identified myself as an athlete.  I played soccer and softball, cycled, and ran cross country and track. My stress relief was running. I also danced tap, jazz, ballet, and pointe. 

Because I was so used to exercising all the time I eventually gave-in to the fact that something was wrong, it wasn’t just being out of shape.  I asked my pediatrician for an inhaler and when I said it wasn’t working she sent me to a pulmonologist.  That started me down the 2 year long road that many PH’ers experience when they are originally diagnosed.  The reasons I was given for my trouble breathing ranged from hyperventilation to a vocal cord disorder to psychological pressure I was putting on myself to be perfect.  I was eventually referred to St Louis Children’s Hospital where they did a right heart cath and found that I had PH.  My pressures weren’t very elevated and the docs thought for sure I had secondary PH, so I endured months of testing only to end back up on the operating table for another cath.  This time though they went in through my neck so I could sit up and ride the exercise bike with the catheter in.  My pressure spiked with exercise. I was told I had exercise induced primary pulmonary hypertension (what is now called idiopathic).  At this point they started me on Tracleer, which was at the time a newly approved PH medication, and Procardia XL. 

My doctor told my parents if I was his daughter he would get a second opinion, so we did.  I started being seen at Columbia Presbyterian Hospital in New York City.  This was a long way from my home in western KY, but seeing one of the best doctors was worth it.  It was at Columbia Presbyterian that they discovered interstitial markings on my chest CT and recommended I get an open lung biopsy to diagnose what they felt sure was Pulmonary Veno Occulsive Disease (PVOD).  The best place to have this done, they said, was St Louis Children’s Hospital. So there I was, instead of attending my first day of my junior year of high school I was being wheeled into surgery for a lung biopsy.  The results showed PVOD, and a week later I was on the lung transplant list.  At that point lungs were still allocated by time on the list instead of severity of illness, and my doctor told my mom his biggest fear was that I wouldn’t make it to transplant. I spent a couple weeks completely grief-stricken.  I had just been told I had a disease that 150-200 people worldwide were diagnosed with (most people were diagnosed with the disease in autopsy) and that if I hadn’t gotten a transplant by the time I graduated from high school I likely wouldn’t be alive any more.  And as they say, the rest is history…


After those 2 weeks I decided I wasn’t going to let this disease define me.  I was going to be the anomaly. I started speaking to civic groups to raise awareness for organ donation and raising money for the Children’s Organ Transplant Association.   I wasn’t going to let PVOD and PH stand in my way.  I applied for colleges just like I would have without PVOD (although St Louis became a top city on my list of places to be since my doctors were there). I attended Washington University in St Louis and graduated with a BA in anthropology in four years.  My first year there was hard, I had to learn how to take care of myself, and figure out how to tell people about PVOD without them thinking I wasn’t able to do anything.  After I graduated I stayed in St Louis to work at a research center and started riding my bike, albeit slowly, dancing salsa 3 times a week and doing yoga at least twice a week.  These were all things I dabbled in during college but I was able to really pursue them once I was out of school. Another thing that came with being out of school was getting moved from pediatric care to adult care.  This meant I was re-evaluated for transplant and since the qualifications for lung allocation had changed from time on the list to illness severity I wasn’t eligible to be on the transplant list. 

After that year of working I went back to school for a Masters of Public Administration, but not before I did a cross-country road trip with a college friend of mine.  We camped in a tent every night, making our way from Kentucky to California via all the national parks we could (think up to Mt Rushmore and Glacier national park to the redwoods, the Grand Canyon and back to LA.  It was amazing.  I was able to camp and hike and almost forgot I had PVOD. 

When I went back to school I worked 20-30 hours a week at a law firm and took classes at night.  I learned a lot in those 2 years, but I think the most important thing I learned wasn’t in the classroom.  Right before winter break my first year of the MPA I thought I was getting my usual end-of-semester-cold and I put off going to the doctor.  By the time I got home for break I wasn’t eating and couldn’t walk from my bedroom to the living room without being exhausted.  Finally on Christmas Day night my sister said to me “If I felt as bad as you look I would go to the ER.”  Leave it to a younger sister to be completely blunt. So I agreed to go to the ER.  The next morning I had to be intubated and flown to St Louis because my lungs were no longer working. I was sedated on a ventilator for 6 days.  The doctors still aren’t quite sure exactly what happened but some combination of mono and another virus allowed me to have 5 liters of fluid in my lungs.  I was basically drowning.  The lesson I learned with that was to trust my instinct if something feels wrong and that I should always err on the side of caution.

This past year I completed my Master of Public Health at Washington University in St Louis and to my parent’s great relief have been gainfully employed for the past 6 months.  I am now working at a large non-profit research company, Battelle Memorial.  I am doing public health research and am currently working on a study to see trends in childhood obesity and characteristics of programs in communities that have lower rates of childhood obesity. 

My life definitely changed with my PH and PVOD diagnosis.  I tell people that it really has shaped me as a person.  I am a stronger person because of it.  I face adversity with much less fear than I think I would have otherwise. Despite the fact that most PVOD patients don’t respond well to Tracleer, and most have a negative reaction, I am lucky that Tracleer seems to be working for me.  I am able to do more now than I was when I was diagnosed, despite the fact that I was a training athl
ete at the time.  Today I’m an avid bike rider, I just started rock climbing, and I volunteer with several organizations; 12 years ago I was told that without a lung transplant I wouldn’t be here today.   Management of the disease is still a daily part of my life, but I don’t let it define me or dictate my life.  The advice I try to remember when I have bad days or when I am feeling down is to remain positive and to keep fighting. I’m so glad that I refused to let the diagnosis be the death sentence it seemed. Having a good outlook has been the best thing for me.




Sunday, 25 January 2015

Reading List

Below is my reading list. I usually send this list to anyone who is having a hard time after diagnosis. I have read all the books below, and they have really assisted me in finding who I want to be after diagnosis. I find myself reading these books over and over again whenever I start to struggle with my worries, fears and diagnosis.

Most of the books mostly deal with Cancer and more common diseases than PH. That being said, a lot of the stories share in these books are about people who beat the odds. People who have beaten statistics and improved far greater than the diagnosis given to them. As I have said before, I think that hope found in hopeless situations can be shared and inspiring. Hopefully you are as inspired as I was by these incredibly crucial books. The books below discuss the characteristics of survivors with Cancer and other diseases- and I think that these characteristics will help anyone thrive after many diagnosis.


Reading List


A Book of Miracles
by Dr. Bernie S. Siegel, Deepak Chopra


Peace, Love and Healing: Bodymind Communication & the Path to Self-Healing: An Exploration by Dr. Bernie S. Siegel

Love, Medicine and Miracles: Lessons Learned about Self-Healing from a Surgeon's Experience with Exceptional Patients by Dr. Bernie Siegel

The Art of Healing: Uncovering Your Inner Wisdom and Potential for Self-Healing by Dr. Bernie S. Siegel

Mind Over Medicine: Scientific Proof That You Can Heal Yourself by Lissa Rankin M.D.

From Incurable to Incredible: Cancer Survivors Who Beat the Odds by Tami Boehmer, Doug Ulman, Dr. Bernie S. Siegel

Radical Remission: Surviving Cancer Against All Odds by Kelly A. Turner PhD

Spontaneous Healing Andrew by Weil Md

Dying to Be Me: My Journey from Cancer, to Near Death, to True Healing by Anita Moorjani (Thank you Rob and Courtney.)

You Are the Placebo: Making Your Mind Matter by Dr. Joe Dispenza
Quantum Healing: Exploring the Frontiers of Mind/Body Medicine By Deepak Chopra


Defining the New Normal: A Guide to Becoming More Than Your Diagnosis by Colleen Brunetti

I haven't finished Defining the New Normal yet - but I can already tell that it belongs on this list! Colleen (click here to see her PHighter Friday journey,) has created a sort of work book to help others find their way through diagnosis. I really enjoy reading more about Colleen's journey with PH. As someone with PH, Colleen has a great prescriptive on how to work your way through diagnosis and cope. Her book is available for free on Kindle until January 26th, 2015- so make sure you snag a copy!


And a big thank you goes out to my Uncle Heath for gifting me with  a Kindle so I can have all of these books at my finger tips at all time :)

Friday, 23 January 2015

PHighter Friday: Maho

I guess my story starts in 2013. About May, I start noticing that I struggle going up stairs and hills. This gets progressively worse as time goes on. That year, I was doing my Masters degree, and had a place to do a PhD in microbiology once I finished it.

It all goes well in terms of getting started with the PhD, although I do notice that I’m struggling to keep up with people going up. However, I just put this down to a lack of fitness, which in hindsight was rather stupid - especially when a friend had said something’s not right!

In Nov., I finally go to my GP, who arranges an echo - 6th Dec. There, I am told that the pressure in my lungs are high. I’m asked “Are you feeling ok?”, to which I reply “Yes”. This is another stupid moments in hindsight, as I knew something wasn’t right but I was not worse that day than I was around that time.

10th Dec., I’m due at my Masters graduation. However, that morning, while getting ready, I lose control of my breathing. Call and ambulance, get taken to A&E. Having the information from the echo, they quickly realise that I probably have PH, and call the specialist down - I am really fortunate that the Royal Free has a satellite clinic with specialist doctors, nurses and a psychologist at my local hospital. Diagnosis and admission into intensive care followed, and I was started on epoprostenol and sildenafil. Two weeks later (Christmas eve!), I am transferred to the Royal Free to have a central line fitted so that I can continue the IV therapy at home.

With the teams and my mother’s support, I managed to slowly return to my PhD; I am lucky to have a supervisor who is very supportive. By Apr., I managed to return full-time, and I do think that if my supervisor hadn’t been as supportive as she is, I may not have been able to continue. Due to the line, I had to learn to use computer programmes to continue my research from another angle. In Nov. We completed a risk assessment so I have managed to go back to doing lab work, which is what I love. I’ve continued to improve, from being told that I should start the process for transplant assessment to being able to do most things. My mother is a therapist working with movements etc., called "eurythmy", and I believe this has helped me recover enourmously!

I still do have days where I feel frustrated with the whole thing, particularly the IV! I have had moments where I feel so stupid for not seeking help sooner. But I realise that I’m responding well to the treatment, and that even if I had sought help I may still be in the same position today; I have had excellent support from the psychologist, who has helped me realise that, helped me to organise all my emotions and so much more. I also recently fainted due to pushing myself too much around that time, which was a huge knock to my confidence as I felt that I was back to normal. Reality is that I’m ill, even if I don’t feel it sometimes.

One thing that will stay with me forever; the day I was discharged from the Royal Free, the nurse looking after me said “Be bold; if you want something to happen, ask God, because he decides what happens, not us.”. This stills means a lot for me to this day, and gives me hope that one day I will get well enough to not need the IV anymore.

Friday, 16 January 2015

PHighter Friday Follow Up: Reinee

Since my last post, I've just been trying to take in all of life's blessings. I recently participated in the Race Against PH held by Stanford Hospital's Vera M. Wall Center for Pulmonary Hypertension. I had about 20 of my family and friends participate with me and it was fun! The outcome of these annual races are pretty overwhelming with the amount of supporters and sponsors. It's amazing to see everyone come together to raise awareness for Pulmonary Hypertension. I didn't actually run the race, but I power-walked the entire way and saved my energy to jog across the finish line. My family and friends who ran ahead waited for me a little before the finish line so we could all finish the race together. That moment was amazing and it felt great. I've only participated in Stanford's Race Against PH one other time before, in 2011, and compared to that, the event has really grown. If you haven't participated in a marathon for PH, I urge you to. It's such a wonderful experience.


Another major thing that has been going on in my life is the process to have kids. I say "process" because it is in fact a process, a very long one. My husband and I are currently going through the process of gestational surrogacy. That is when they take our embryo and implant it into our gestational carrier, or surrogate. When it came to our talk about having kids, which was well before we got married, we knew that it was not in the cards for me. I cried. I was depressed, but I had work with the cards I was dealt. My husband and I knew we wanted to try to have our own kids and obviously, this was the only way. We both had long talks with my doctors, nurses, and social worker about the risks, but I was willing to take them... and so was my husband. I honestly feel like I'm at my healthiest I've ever been so now would be the perfect time. There was a catch to going through with surrogacy though, and that was to get off of Tracleer. For those of you who don't know, one of Tracleer's main side effects is birth defects. My doctor decided that I needed a 3-month wash out period so that Tracleer would no longer be in my system at the time of egg stimulation. There haven't been any studies on the effects of Tracleer on eggs, but there have been studies of the effects of Tracleer on pregnant rats. So my doctor wanted to be safe and wanted me to produce the healthiest eggs needed for fertilization. I wasn't worried at all, but my doctors were a bit concerned. Of course they had to be concerned, they're my doctors. Their exact words were "we are not encouraging this, but if this is what you want to do, we fully support you and will take whatever steps necessary to make sure this happens for you." And honestly, that was exactly what I wanted to hear. Support from my team of doctors is all I need to know that everything was going to be OK.

My husband and I are now at the point of looking for legal representation and we're also waiting for our gestational carrier to be cleared of all initial testing with our fertility doctor. Genetics testing has been done, bloodwork, psychological and personality tests have been performed, as well as physicals. I have been off of Tracleer for about 5 weeks now and I feel fine. The first week was hard. I thought I wasn't going to be able to take being off of Tracleer, but I think my body just needed time to adjust; it was definitely going though withdrawals, though. I experienced a tight, heavy chest and minor palpitations, but I'm not a stranger to these symptoms so I just took it easy and continued to work. I'm completely fine now, and I'm still on Revatio and Tyvaso. 

Aside from the PH race and surrogacy, I have also recently challenged myself to snowboard with my husband in Lake Tahoe. I was scared at first because the last time I visited Lake Tahoe I didn't do so well. The elevation got to me, BUT at that time I was not on all the therapies I am now. Honestly, this time I was real nervous and still skeptical. I even had second thoughts about actually trying to snowboard so I had my husband hold off on buying me a lift ticket. I sat and waited in the cafeteria until it was time to do my next session of Tyvaso. When my husband came to check up on me after he did a few runs, I just said "alright, let's go!" I figured that if I came here with the intent to TRY, I might as well TRY. I felt fine, nothing was really holding me back except fear. We ended up snowboarding for about 5 hours. I had more than a few good spills, but I got the hang of it and I think I have a new found love of snowboarding! 

Sometimes I feel guilty about sharing my experiences, only because I know there are newly diagnosed patients out there who are feeling horrible. I remember being newly diagnosed and attending a support group with a couple of patients who were doing so well. For some reason, it made me feel worse because there they were living life and here I was thinking mine was ending. However, I want all of you to know that it took me almost 12 years to feel this way. It wasn't an easy battle, either. Please know that I'm active because my body is at the point where it's allowing me to be active. I don't feel crappy and try to push myself to do these things. I also want all of you to know that challenging yourself, even just a little, will give you hope. Don't ever be scared to get off of oxygen, or go for a walk, or get out of bed, even. Give yourself a new challenge everyday, it doesn't even have to be physical, but if your body doesn't allow it then at least you know your limits. Don't ever give up on yourself, keep PHighting! And always remember, you don't live with PH... PH lives with YOU.

Friday, 9 January 2015

PHighter Friday: Kevin

 Kevin, his father David, and representatives from the PHA speak with a representative from Ohio Senator Robert Portman’s office during a PHA event on Capitol Hill
I am a competitive person by nature. I never was the ├╝ber-athlete, don’t think that, but I did play sports, I did coach sports, and you don’t want to challenge me to a game of Monopoly or Trivial Pursuit. In high school I picked up an oar and took up the sport of rowing, In college I changed gears to play intramural football, and through it all, I played hockey. Even my still occurrent online video games feed a competitive spirit that I thought I would have to lose, and at the time of my PH diagnosis something I was certain was gone and would not be coming back.

3 years after Kevin’s first fainting spell, he takes a picture atop the Williamstown Bridge in Marietta, where he first passed out
I still remember the three months from May to August 2012 like they were a dream, even if it was a bad one. The first cardiologist I had consulted after it became apparent something was wrong, suggested I had at best two months left to live, and suggested my only hope was an immediate heart/lung transplant. I was sent, albeit not immediately, to Ohio State
University’s Wexner Medical Center to confirm his prognosis. From an initial appointment in May with the Ohio State specialist, to an MRI and more tests in July and finally my right heart catheterization and first meeting with my PH Specialist, I was if anything, not my normal self. I had always taken every little thing as a challenge, in my mind if I could mow the lawn three minutes quicker than before, or get to work a minute earlier after leaving at the same time, it was a victory, and for the first time in my life I didn’t see a victory as being possible, and for a period of time, I gave up.

I remember sitting on my couch one day, in the throws of an incredibly horrendous anxiety attack, surrounded by the outdated PH information that most of us can quote by heart, unable to find anyone who could help me in that moment. I remember that moment so well, because my spirit was gone. That little voice in my head that had always told me I could do it a little better, that we could win this was gone. He had simply said “I’m out” and left. I felt I was going to die, I knew I was going to die. The doctors up to this point had still maintained six months or less without medication, and I was not yet on that medication. It was the lowest I have ever felt, and I admit, I just gave in. I succumbed to what some of the doctors had said, what the numbers told me, and I couldn’t find the will to go on.

One of Karen’s famous Christmases would not be complete without, of course, a christmas tree.
I am sure many of the people reading this can relate. Most patients I have talked to can pinpoint the exact moment their hearts sank, that moment that the gravity of their situation finally started pulling at its full strength. It is a moment that I would hope no one ever has to experience, but something that I know far too many of us do. At my deepest and darkest moments I was so helpless that I had trouble doing anything without the urging of my wife or family. I do remember another moment though, when in an attempt to get my mind off of my situation, Karen asked me what I wanted for Christmas. I must preface here, that Christmas is a big deal in our house. Karen celebrates the holidays like no one can. She turns Christmas into a colorful celebration like no one else can. Generally starting the week preceding Thanksgiving, decorations start going up and the tree pops up… a very “Victorian” looking tree in the parlor of our old Victorian-era home. When she asked me what I wanted for Christmas, it was nothing more on her part than an attempt to get my mind off of the situation I was in, but for me, it started this little voice whispering in the back of my head. That voice was telling me to just make it to Christmas. I had to be a part of one more of Karen’s Christmases… and then I could let go.
Armado: a photo from a Shakespeare By The River outdoor production, the first of it’s kind in Marietta. Kevin served to get the production started, as well as taking a role in the production of William Shakespeare’s Love’s Labour’s Lost.
Something amazing happened though, while that little whisper was just urging me on to December. I started medications, and I responded to them. I felt myself getting stronger, I felt a little hope return to me, and when Christmas 2012 rolled around, I made a pact with that little voice in my head. I said that I could make it one better, and Christmas 2013 was my new goal. Without knowing it, and without really trying, that little competitive streak I have in me, came back. Very quickly, I was pushing myself again. Little things at first, to make it a little further on the walk with my wife, or to make it further on my next six minute walk, and new goals slowly got bigger and better. Goals changed though, where once a competitive goal to stop more shots than I had the game before (I was a goalie when I played hockey) or to make it downriver in my kayak a few minutes faster, suddenly I was making goals for others. I stepped into politics and advocation, trying to raise awareness for PH and for our patients. I set goals to talk to my elected officials, and I use that spirit to otherwise help those who need it, both in my hometown of Marietta, and those in the PH community.

The cast photo from the first Shakespeare By The River production in Marietta
All of this leads me to the biggest piece of advice I wish I could have given myself, and the best piece of advice I can give any new patient. Don’t give up, and don’t let this thing change you. Find that last little bit of yourself, and don’t lose it. Hang on to it. This disease is bad, but it is not bad enough to lose who you are. The numbers are bad, but outdated, not all doctors know what they are talking about all the time, and you can live with this. I thought I had lost everything, but without even realizing it I kept that little bit of competitive spirit, and it is what got me through. I wish I could go back to myself in August of 2012 and sit down, and inform my beaten down self that I still had that last little spark of myself, and that I would listen to it, and things would get better. I don’t know if it would have helped much, but every day I think about it I wish someone had been there to tell me, even if I didn’t believe them, that I wouldn’t lose myself, I wouldn’t lose that last little piece of who I had been, and in the end things would get better. It is one thing I do try to tell new patients when I come across them, that life is not over, that things can get better. I can’t stress that enough. Use whatever you have. If it is an ember of rage (as Henry Rollins would say) that pulls you through, or a drive to make this a part of your world, or just a desire to make it to next Christmas, you have to embrace that little bit, hold it tight and nurture it, and use it for good in your life as a patient. I chose to fight without even realizing it, and I will keep fighting for every breath, every day, and for every patient in our community, because I am just competitive like that.
10 months after his diagnosis, and doing better. Kevin and Karen married on May 4, 2013.

Thursday, 1 January 2015

The PHight or Flight Project: 2015

Instead of posting a PHighter Friday story- I need to ask you for your help.

If you have Pulmonary Hypertension and have an inspiring story to share, please contact me at phightagainstph@gmail.com. This blog cannot continue with the help of other people with PH who are willing to share their journey.


To share your story you do not need to be a long-term survivor (but I accept stories from long-term survivors as well!) You just need to share your PH journey that will help provide hope to others ( (especially the newly diagnosed, or a few years past diagnosis.)

Have you improved much greater than your doctors said you would? Have you survived and thrived much longer than the original time frame given to you by a doctor? Have you accomplished something you were originally told you would not be able to do with PH? Do you work full or part-time? Do you volunteer, run a support group? Have you adopted? Are you active? Do you walk for 30 minutes every night? Do you go to the gym? Are you not just surviving but thriving? Are you doing much better than the lousy internet statistics you originally Googled when you were diagnosed? Have you downgraded medication? Discontinued oxygen use? If you answered yes to any of these questions and are willing to share your story to help others, please e-mail me at phightagainstph@gmail.com. From there, a brief e-mail with a list of topics will be sent your way to help with the creative process! If you know someone who would be a good candidate to write for a PHighter Friday, please feel free to send them my contact info. Remember, people of all abilities and from all walks of life are invited to share their story so long as it is inspiring.

For 2015 I hope to continue with more PHighter Friday stories. Right now I have some posts ready and waiting for the upcoming Fridays. They will be posted every Friday, or for every Friday that there is a story to share.

I will also be introducing a new category of posts called Partners with PH. The Partners with PH posts will be written from a spouse or partner who is in a relationship with someone who has Pulmonary Hypertension. The goal of this topic is to show that these partners aren't necessarily caregivers to their spouse. They help their partner with whatever they need, but that is how most loving relationships work! I also hope that this proves that these kinds of relationships can have a sense of normalcy, and to encourage other PHers to pursue relationships or continue relationships past diagnosis. I know that this is something I myself have felt guilty about. I have two posts so far, and I cried reading them. They were so sweet and inspiring, and I have always said that there is a pot for every lid. Don't let this disease stop you from finding your bliss, whatever that may be! If you are in a relationship with someone with Pulmonary Hypertension and would like to share your story, please contact me and I would be delighted to send you more information about writing a blog post!

Sometime in 2015, Charity Tilleman-Dick will be sharing her journey with Pulmonary Hypertension, which ultimately lead to two double lung transplants. Told she would never sing again, Charity has kept her career as an opera singer and has used her platform to spread awareness and hope! I have followed Charity since diagnosis, so I am really excited to learn more about Charity, and that we will get to share her story with readers! She actually reached out to me after diagnosis and sent me very kind words on a message board. Here is a video of Charity on TEDMED speaking of her experience.


TED Talk: Charity Tillemann-Dick: Singing after...
by TED

I also hope to share more personal posts in 2015. A few people with PH thanked me for being so honest, and one newly diagnosed person thanked me for sharing what my first year past diagnosis has been like. I wasn't sure if anything I had to say was beneficial. Their feedback has really showed me that is important to share my journey so soon after diagnosis. It can be one heck of a roller coaster.

I have learned through this experience that I can still be very shy and reserved (something I thought I outgrew in high-school.) I have received some attention through this project, and at times it has been too much for me. But, I knew I wanted to start this project because it was so desperately needed, and I knew that I had the resources and training to take on such a task. It has been a little difficult to run this blog while returning to work part-time. I hope to return full-time in 2015. It turns out this blog is a job as well. Have you ever wondered how I found all of the stories for PHighter Fridays? I am rarely approached by others...I would say maybe one person has approached me throughout this process. Pulmonary Hypertension is also a fairly rare disease, so it is even harder to find people on my own to share their story.

So what does 2015 have in store for me? I have no idea, and that thought scares me. I hope I continue to improve, and surprise doctors by my improvements. I hope that this is "my year," because last year hurt like hell. I was really depressed the days leading up to New Year Years. I have made it one year past diagnosis, and it surely wasn't what I thought it be. My specialist is optimistic that I will get off the oxygen completely sometime shortly within the New Year, so I am hoping that happens soon as it will lift some of my burden. Despite how depressed I was thinking about the future, my New Years Eve was wonderful. My boyfriend, Spencer (pictured beside me,) cooked us a lovely low-sodium, gluten free dinner to meet my dietary needs. We stayed up and played card games and watched the countdown on TV. I think this was more our style anyways. Last New Years I was barely coherent, so I have certainly come a long way. He told me that this was his favorite New Years. I made a face- his favorite New Years? How? Things have been so hard so this part year! I thought about what he said, and he was right. It was my favorite New Years too. We went to our favorite cafe, he made an amazing and romantic dinner, we both made it to midnight, and well, I had a pretty good day. I didn't need to use my oxygen while at his house at all! It was a great New Years. As I mentioned before, I plan to live to 87 so I am hoping for many many more happy and healthy New Years. Maybe next year we can go out dancing.

I want to wish all my readers a happy and healthy 2015. Here is hoping that less invasive and more effective medication comes our way this year, and maybe even a cure!