Clare Bello Ogden
My name is Clare Bello Ogden and I have survived blood clots in both my lungs. Such a small sentence, but such a world of changes to my life. The formal name for my condition is Chronic Thromboembolic Pulmonary Hypertension (CTEPH).
A Pulmonary Thromboembolism is essentially is a blood clot which moves from somewhere else, into your lung. In my case, it moved into both of my lungs and we believe it was from my legs. We also believe that is was caused from the amount of flying I did for my job. These are blood clots which cannot be resolved with medication and blood thinners and cause long term issues, making it chronic. In fact, once you have them, they act to increase the pressure inside of the lung, causing pulmonary hypertension; thus the name, Chronic Thromboembolic Pulmonary Hypertension and the acronym CTEPH. It is a relatively rare disease. Only about 5,000 people in the United States are diagnosed with CTEPH each year. Because many of us don’t know that we have a blood clot when it happens; the clot can be overlooked or not suspected as the cause. That is essentially what happened to me.
Only about 5,000 people in the United States are diagnosed with CTEPH each year.
What I have found about this disease is that it is never simple and never ordinary. You never – ever – have a doctor look at you and say – hey that’s easy – we see what you have all the time and know exactly what to do next. You are always a puzzle and the symptoms change and come and go in the blink of an eye – so that one day you feel great – then you cannot breathe again.
There have been days when I believed I was dying by inches – when getting out of bed was so hard, let alone going to work; raising my kids and being a wife to my husband, Paul; that I just wanted to give up and stay in bed. But that’s just not who I am. I am a fighter – I have been an advocate all of my career, first, as an attorney for my clients and now, in my job, working to support healthcare professionals all over the country.
There have also been times when I felt that I wanted to dance, laugh and drink in every moment and give as much of myself to my loved ones as I could – so that when I died – they’d have something to hold onto from me. Great thoughts – except for the dying part. Again, that’s just not what a fighter does – you never say quit – you just have to get up for the next round – it’s what we do.
…that’s just not what a fighter does – you never say quit…
What I know now is that when you live with an unpredictable disease like CTEPH – all of these feelings are part of the adjustment of learning to be a different version of yourself. Today, because of the amazing healthcare warriors I have on my side; because of the amazing loving circle of family and friends I have been blessed with; and because I like to laugh and enjoy life – I have learned that every day – even the hard ones – are a gift – there is always something to celebrate in a day.
Some days it is as simple as the fact that the sun is shining and I feel great. Other days – well – it’s a shared laugh with Paul; or my brother or one my amazing sisters thought of me and texted; or my teenage son chose to be with the family rather than out with friends for an evening. It’s all precious – and that’s where the healing lives for me.
There and with my amazing UPMC physicians and teams who have dedicated themselves to a disease that so few know about, understand or survive. That these men and women dedicate themselves to this specialty is the greatest gift to me of all. So I am choosing to share my story in the hopes that if one other person who has CTEPH can survive it like I am – then the story is worth the telling.
So I am choosing to share my story in the hopes that if one other person who has CTEPH can survive it like I am – then the story is worth the telling.
This all began for me in 2010. In 2010, I was a 45 year old entrepreneur, running my company on a national level and running 3 miles a day and raising my sons. I felt amazing and felt like I was taking the world by storm. Suddenly, I began getting weird red spots and lumps in my legs – they hurt and made my legs swell. I went to a Rheumatologist who treated me and said I had Vasculitis. What in the world was that? An infection somewhere in my body that happened to appear in my legs. Treatment? Steroids – high doses for about 3 months and then VOILA! They were gone and I felt great again.
Then, in April of 2011, I got a horrible case of “bronchitis” which I just couldn’t seem to kick. Deep horrible cough, loss of breath, extreme fatigue and overall terrifying symptoms for someone used to running every day. What the heck was happening to my body which had never needed more than a multi-vitamin and an Advil when I ran too hard the day before? Treatment? Antibiotics…many rounds and types. No relief, in fact I progressively got worse and worse. Coughing fits that wouldn’t stop. Exhaustion unlike anything I’d ever experienced.
Being who I am, I just kept going. I took Advil, got on planes and did my work. One very memorable day in July, 2011, I woke up with what felt like a hot knife in the back of my left shoulder blade. I could barely stand it, it hurt so badly. But I was due in Whitefish, Montana to give a speech. So – four Advil later, I got on the first of three flights to my destination. While I have to say that Whitefish was truly one of the most beautiful places I have ever been, I don’t remember much of it. I was so dazed and in so much pain. I gave my speech and came home. Little did I know that a massive blood clot had moved into my left lung and by all rights, I should never have been alive to get on that plane at all.
Little did I know that a massive blood clot had moved into my left lung and by all rights, I should never have been alive to get on that plane at all.
After this, I had coughing fits that didn’t end and an inability to take a breath without the sharp pain in my back. Fatigue and such shortness of breath I couldn’t walk or go up and down stairs anymore. So, they put me on bed rest in September of 2011 to cure this chronic bronchitis.
Well, let me tell you, after two days of bed rest – I couldn’t breathe at all. That was when I met my first hero in my story, Dr. Joann Kim of Pulmonary Partners. She had a VQ Scan done, just to be sure that we were really dealing with chronic bronchitis. At the end of the test, I was told…”Please sit in this chair and do not move and do not bend over even to tie your shoes.” My cell phone was already ringing with Dr. Kim on the line and I was admitted very quickly to the hospital and further testing resulted in them finding two blood clots – one in each lung. The clot in my left lung was so large, that the aorta was completely obscured.
I was in the hospital for 3 days, after which, I was sent home on blood thinners in the hopes that the clots would resolve with the medication. They did not. I became chronic. I kept working, though, as if keeping my schedule would make all of this disappear. You know – if I keep it all normal – this too shall pass? Not so much….
In January of 2012, it was decided that I needed to have a very specific and specialized surgery, called a Thromboendarterectomy. A Thromboendarterectomy is essentially open chested surgery, where the blood clots are removed by the surgeon, while your heart is stopped and you are on a heart and lung machine with a full by-pass of your blood while the surgery occurs. In other words, they have to kill you to save you.
In other words, they have to kill you to save you.
At that time, there was really one team of “excellence” for the surgery – based out of San Diego, CA. The idea was for me to fly to that facility for the surgery which would then require a month of recuperation in a hotel near the facility once the surgery was completed. I was not in a position to have someone who could be there with me the whole time – so while I would have family coming and going – I would have been without my home and kids during the recovery. I was ready to do it if it meant getting my life back.
Fortunately, I was “too high functioning” for them in California, and I kept being triaged down the list of patients. So, I became more chronic and really thought I was not going to make it.
I say fortunately, because Dr. Kim came to my rescue again in February of 2012 – she introduced me to Dr. Christian Bermudez. Dr. Bermudez had trained for the surgery in California and was right here at UPMC Presby! He met with Paul and me within days of learning about me. He spent literally hours with us going over my last year and a half of issues and history and scans and tests. At the end of our meeting, he looked at us and said: “I can help you. I can do this surgery here and I believe all will be well.” Paul and I took the leap and said yes.
Dr. Bermudez saved my life on March 9, 2012. I have no words for the special place he has in my heart.
After the surgery – the recovery was long. Days in ICU intubated; a broken sternum to heal; pain and exhaustion which would take me by surprise for months and debilitate me when I had been feeling so well.
BUT – and here’s the kicker here for me. I was supposed to be cured….I was supposed to be able to go back to my normal life and pace and be as I once was. At the risk of repeating myself….Not so much….
I was never able to really get back to being able to be active again. I would try to exercise and get short of breath and cough – never able to really put the energy back into being active. I couldn’t figure it out – the surgery had been successful….hadn’t it?
Here’s where my next hero comes into play – UPMC Absolute Primary Care, Phillip Iozzi, DO. He is my primary care physician. He became my warrior, never believing that feeling awful was acceptable. I was too young, he said. Bless him – he never, ever has quit on me. He has educated himself and his terrific staff into my condition and tried so many different avenues to help me breathe better. Just knowing I had a physician who knew me so well and was and is still always so accessible to me let me know I was not on this road alone. From 2012 until the winter of 2014, we tried everything from inhalers to therapy to medications. Nothing really helped, but I functioned and was able to work. I just couldn’t really be as active as I wanted to be. I wanted more – I wanted to play with my kids and walk on the beach on vacation with my husband.
I wanted more – I wanted to play with my kids and walk on the beach on vacation with my husband.
In December of 2014, the vasculitis returned and my breathing declined dramatically. We decided it was time to go back to the experts at Presby.
I called Dr. Bermudez – told his nurse I couldn’t breathe again and that it was getting chronic again like before the surgery. He had me in his office the next day and introduced me to my most recent warriors – Dr. Patricia George, UPMC Pulmonary, Allergy and Critical Care – and her team.
Dr. George began a serious of tests with me which showed that I had developed Pneumonia, requiring hospitalization again. But again – that saved me because the tests done in the hospital showed that not all of the initial clot was removed and that because of the continued blockage, I had developed CTEPH and needed more treatment.
While a second surgery was discussed, I was amazed and surprised to learn of how much advancement has been made about this disease since my initial surgery in 2012. In fact, rather than face a second surgery, which I am not certain I could do, I began a medication called Adempas.
Adempas is my most recent miracle. It is a drug designed to be taken and increased over time which essentially makes the blood vessels in my body expand – particularly within my blocked lung. This allows more oxygen to come through the lung and allows me to breathe well! I have gone from chronic again in December of 2014 – to owning a treadmill and walking about 1 mile a day!!! It’s not a fast walk – but I can tell you every single step is a gift! I am still fighting the Vasculitis….but UPMC found me another warrior there too…so there’s a plan. Plans are good so long as we remember to stay flexible.
It has been five years and I think the hardest part of all of this was waiting to feel like I used to. Here’s where the learning to be a different version of yourself comes into play: I know now that I probably won’t ever be a jogger again….but I enjoy walking. I won’t ever have the ultimate energy I had….but I enjoy slowing down and really seeing what is around me and hearing what my kids have to tell me every day. I am blessed with teenagers who understand that life is not guaranteed – so I have close and special relationships with each of them. I am blessed with friends, colleagues and family who have held me up through the tough moments and will likely need to do it again before it’s all said and done.
I see the world very differently now – choosing to engage in my job and my life on new deeper levels that I might not have chosen without CTEPH.
So….today I will celebrate having told this tale and hope that it helps someone like me know that this disease is all about rolling with the punches and ALWAYS getting back up for the next round. Because while the fight doesn’t currently have a true cure or an end – it comes with its own curious set of silver linings and our warriors are out there fighting to find the answers.
I will choose today to become an advocate for all of us too. Here’s to the next round!