Hello there guys! My
name is Mariza and I am 34 years old. I was diagnosed with CTEPH (Chronic
Thromboembolic Pulmonary Hypertension) about a year and a half ago. I cannot quite pinpoint when my symptoms
really started because I had trouble with breathing since high school. I was told I had allergy induced asthma and
had an inhaler for when the asthma acted up. I had bronchitis more times than I can remember but my symptoms seemed
to worsen about 2.5 years ago. I
remember I was sick with a cold and coughing a lot and noticed I was having a
lot of trouble breathing when my husband and I went to a park and just walking
was tough. I went to the doctors and was
told it was my asthma and I most likely had a sinus infection that had cleared
up on its own. So I continued taking my
inhaler and my symptoms seemed to get better. I started running and working
out, lost about 40 pounds and felt great. Fast forward to Christmas 2 years ago. I was in North Carolina in the mountains with my family and husband and
we went for a hike and I was having a lot of trouble with the smallest
hills. I chalked it up to the altitude
and my asthma acting up again. But my
symptoms didn’t seem to get better this time.
I found myself trying to find the closest parking spots, knowing that
just the walk from my car to the store would be difficult. I let it go because I really believed I would
feel better eventually. I had a bad
cough from January until May of 2014. You would think I would have gone to the doctor but was seriously
convinced I had a really bad asthma flare up.
I am a nanny and my job requires a lot of energy all day every day. I would be at work and it would be
really hard to do anything. I would walk up the stairs and need to sit
down immediately so I wouldn’t pass out, I would basically spend the day
sitting and making excuses to not chase the kids around. I honestly don’t even know how I got through
it and I don’t know how I managed to not pass out. When I got home I would sit down immediately
and remain in that position for the rest of the night. Needless to say, I gained that weight back
pretty quickly. It all came to a head
when a couple of other nannies and I decided to take the kids to the
Philadelphia zoo for the day. We parked
at the zoo lot which is about a 5 minute walk to the entrance of the zoo; no
hills. It was absolutely horrible. I had
to stop a couple of times on the way in to catch my breath and it hurt so bad
to even take a breath. I was gasping for
air with every step I took the entire day.
It was so bad I told the other nannies that I thought something was
wrong. One of them said you might have walking pneumonia and she told me her
father had just gotten over that and he
had the same symptoms. I told my husband
and he said I had to go to the doctor. So I made a decision the next day to go to the urgent care after
work.
When I got there they took my blood pressure, weight and placed the pulse ox on my finger. The tech who was doing all of this kind of gasped and asked me if I was wearing thick nail polish and I told him
was just wearing regular nail polish. So he said let me do this again. And I looked at the monitor and my oxygen level read at 78% I asked him if that was bad. He said well you should be at 98-100% and he walked me over to the room and called the doctor to come in immediately as they put oxygen to my face. They also took an xray of my chest. I sat there for a while until my oxygen went up to 90% and said I need to go to the ER right away and they would call an ambulance. I told them no that I would have my husband come get me. I was terrified. Once I got to the ER I was pumped full of oxygen but it was so unstable that the doctors were seriously concerned. They thought for sure I had a pulmonary embolism and did all sorts of imaging and blood work which confirmed there were clots in my pulmonary arteries and I had pneumonia. So I was in the ICU for several days and then moved a step down to progressive care after a couple days but I was still attached to oxygen. I was sent home after about 10 days in the hospital but was still on oxygen and if I wasn’t moving and not on oxygen my O2 levels would pretty much be at 92%. My mom came up from Mississippi to help and be with me so my husband could return to work.
On my ninth night home I was laying down and my dog was laying next to
me very concerned and wouldn’t leave my side. I was still coughing but this time I coughed up a lot of blood and then
I took my o2 levels and they were in the low 80’s while on oxygen. I told my mom and husband and I said I think
I might be getting another PE. So they
said lets go to the ER and as we were walking to the car I was so close to
passing out they had to catch me. We go
to the ER and had the same tests done and back to the ICU I went. After a few days in progressive care and no
improvement the doctor came to tell me that I was being transferred to Lehigh
Valley Hospital where I would most likely be getting a lung biopsy done because
they couldn’t figure out what was wrong with me and they didn’t have the
resources to do any further testing at my local hospital. It was at Lehigh where the wonderful ICU docs
figured out what was wrong with me. They
told me I had Chronic Thrombo Embolic Pulmonary Hypertension and that the clots
that are in my lungs had been there for so long that they had calcified and my
heart had been working so hard to get oxygen around that my right heart had
enlarged tremendously. They told me I
was really lucky because there was a surgery that could cure this and I might
be a candidate but that I would have to go to UCSD or Temple University Hospital for it which is in
Philadelphia. So the obvious choice was
for me to go to Temple. Because I was so
unstable I was sent there via ambulance and kept in their progressive care
there for about a week where they put me through a variety of tests. I had an amazing doctor, Dr. Paul Forfia,
come and talk to me and he told me I was a great candidate for 
the surgery and
I would have it the next day. When it
came time to sign all the necessary papers, the resident who came to tell me
about the surgery came right out and said exactly what the procedure entailed
and the risk factor. I had no idea the
surgery was an open heart surgery and all the craziness that went along with
Pulmonary Thrombo Endarderectomy. I
freaked out and could not stop hyperventilating. I said I needed a minute to think about all
of this. Dr. Forfia came in and agreed
that I needed time to process everything and it would be good for me to go home
and gain strength before the surgery. So
that’s what I did and I am so glad I did.
I left the hospital at the end of June and scheduled my surgery for
September 22nd, 2014. I had
three months to research my amazing surgeon Dr. Yoshiya Toyoda, spend time with
my family and friends and mentally and physically prepare myself for the
biggest day of my life. I had that
surgery and despite one set back when fluid filled my lungs after leaving the
ICU, I got through it. They removed the
clots and cured me of my pulmonary hypertension. I was in the hospital for 9
days after surgery and left there with no oxygen and walking and able to
breathe.
My heart is back to normal size and really healthy. I have a new outlook in life and consider this as my second life. I just recently had my first birthday and I feel amazing. The asthma I had been told I had, never really existed and I can take a deep breath like never before. I exercise at least 5 times a week, like really really workout. I lost those 40 pounds (20 of it after the surgery from not eating and being bed ridden) but the other 20 just from exercising and eating right. I am still working on being at my healthiest. I owe my life to the doctors at Lehigh Valley Hospital and my amazing doctors Dr. Paul Forfia and his NP Fran Rogers and my surgeon Dr. Yoshiya Toyoda at Temple. Not only do they dedicate their life to caring for patients with pulmonary hypertension but they cure those who are able to get this incredible surgery.
This
past Saturday I had a major milestone in my post-surgery
life. My husband and I did the O2
Breathe walk to find a cure for Pulmonary Hypertension…at the Philadelphia
Zoo. I cried when I spent the entire day
there walking and able to enjoy the experience, I cried because of the guilt I
felt since I am cured, I cried for the people that have lost their lives to
this disease and I cried tears of joy because I know that this community will
one day find a cure as long as we keep coming together, spreading the word and
sharing our stories so people can become more familiar with this “invisible
disease”.
I am a nanny and my job requires a lot of energy all day every day. I would be at work and it would be
really hard to do anything. I would walk up the stairs and need to sit
down immediately so I wouldn’t pass out, I would basically spend the day
sitting and making excuses to not chase the kids around. I honestly don’t even know how I got through
it and I don’t know how I managed to not pass out. When I got home I would sit down immediately
and remain in that position for the rest of the night. Needless to say, I gained that weight back
pretty quickly. It all came to a head
when a couple of other nannies and I decided to take the kids to the
Philadelphia zoo for the day. We parked
at the zoo lot which is about a 5 minute walk to the entrance of the zoo; no
hills. It was absolutely horrible. I had
to stop a couple of times on the way in to catch my breath and it hurt so bad
to even take a breath. I was gasping for
air with every step I took the entire day.
It was so bad I told the other nannies that I thought something was
wrong. One of them said you might have walking pneumonia and she told me her
father had just gotten over that and he
had the same symptoms. I told my husband
and he said I had to go to the doctor. So I made a decision the next day to go to the urgent care after
work. When I got there they took my blood pressure, weight and placed the pulse ox on my finger. The tech who was doing all of this kind of gasped and asked me if I was wearing thick nail polish and I told him
was just wearing regular nail polish. So he said let me do this again. And I looked at the monitor and my oxygen level read at 78% I asked him if that was bad. He said well you should be at 98-100% and he walked me over to the room and called the doctor to come in immediately as they put oxygen to my face. They also took an xray of my chest. I sat there for a while until my oxygen went up to 90% and said I need to go to the ER right away and they would call an ambulance. I told them no that I would have my husband come get me. I was terrified. Once I got to the ER I was pumped full of oxygen but it was so unstable that the doctors were seriously concerned. They thought for sure I had a pulmonary embolism and did all sorts of imaging and blood work which confirmed there were clots in my pulmonary arteries and I had pneumonia. So I was in the ICU for several days and then moved a step down to progressive care after a couple days but I was still attached to oxygen. I was sent home after about 10 days in the hospital but was still on oxygen and if I wasn’t moving and not on oxygen my O2 levels would pretty much be at 92%. My mom came up from Mississippi to help and be with me so my husband could return to work.
On my ninth night home I was laying down and my dog was laying next to
me very concerned and wouldn’t leave my side. I was still coughing but this time I coughed up a lot of blood and then
I took my o2 levels and they were in the low 80’s while on oxygen. I told my mom and husband and I said I think
I might be getting another PE. So they
said lets go to the ER and as we were walking to the car I was so close to
passing out they had to catch me. We go
to the ER and had the same tests done and back to the ICU I went. After a few days in progressive care and no
improvement the doctor came to tell me that I was being transferred to Lehigh
Valley Hospital where I would most likely be getting a lung biopsy done because
they couldn’t figure out what was wrong with me and they didn’t have the
resources to do any further testing at my local hospital. It was at Lehigh where the wonderful ICU docs
figured out what was wrong with me. They
told me I had Chronic Thrombo Embolic Pulmonary Hypertension and that the clots
that are in my lungs had been there for so long that they had calcified and my
heart had been working so hard to get oxygen around that my right heart had
enlarged tremendously. They told me I
was really lucky because there was a surgery that could cure this and I might
be a candidate but that I would have to go to UCSD or Temple University Hospital for it which is in
Philadelphia. So the obvious choice was
for me to go to Temple. Because I was so
unstable I was sent there via ambulance and kept in their progressive care
there for about a week where they put me through a variety of tests. I had an amazing doctor, Dr. Paul Forfia,
come and talk to me and he told me I was a great candidate for 
the surgery and
I would have it the next day. When it
came time to sign all the necessary papers, the resident who came to tell me
about the surgery came right out and said exactly what the procedure entailed
and the risk factor. I had no idea the
surgery was an open heart surgery and all the craziness that went along with
Pulmonary Thrombo Endarderectomy. I
freaked out and could not stop hyperventilating. I said I needed a minute to think about all
of this. Dr. Forfia came in and agreed
that I needed time to process everything and it would be good for me to go home
and gain strength before the surgery. So
that’s what I did and I am so glad I did.
I left the hospital at the end of June and scheduled my surgery for
September 22nd, 2014. I had
three months to research my amazing surgeon Dr. Yoshiya Toyoda, spend time with
my family and friends and mentally and physically prepare myself for the
biggest day of my life. I had that
surgery and despite one set back when fluid filled my lungs after leaving the
ICU, I got through it. They removed the
clots and cured me of my pulmonary hypertension. I was in the hospital for 9
days after surgery and left there with no oxygen and walking and able to
breathe. My heart is back to normal size and really healthy. I have a new outlook in life and consider this as my second life. I just recently had my first birthday and I feel amazing. The asthma I had been told I had, never really existed and I can take a deep breath like never before. I exercise at least 5 times a week, like really really workout. I lost those 40 pounds (20 of it after the surgery from not eating and being bed ridden) but the other 20 just from exercising and eating right. I am still working on being at my healthiest. I owe my life to the doctors at Lehigh Valley Hospital and my amazing doctors Dr. Paul Forfia and his NP Fran Rogers and my surgeon Dr. Yoshiya Toyoda at Temple. Not only do they dedicate their life to caring for patients with pulmonary hypertension but they cure those who are able to get this incredible surgery.
This
past Saturday I had a major milestone in my post-surgery
life. My husband and I did the O2
Breathe walk to find a cure for Pulmonary Hypertension…at the Philadelphia
Zoo. I cried when I spent the entire day
there walking and able to enjoy the experience, I cried because of the guilt I
felt since I am cured, I cried for the people that have lost their lives to
this disease and I cried tears of joy because I know that this community will
one day find a cure as long as we keep coming together, spreading the word and
sharing our stories so people can become more familiar with this “invisible
disease”. 
Lovely blog. Hope you write more about living life healthy now. My blog is about living with ipah. Lovely to see someone living after having ph xx
ReplyDeleteI agree, it is lovely to see someone living after PH. Always amazing to see or hear from someone who longer has it :)
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