Pulmonary Arterial Hypertension - MacGillivray
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My journey with Idiopathic Pulmonary Arterial Hypertension began in July 2020 when I was 24 years old and a teacher of gifted students who loved her job! Through the years, I have enjoyed soccer, swim, cross country, and singing. But suddenly I am incapable of even walking up a flight of stairs or carrying on a conversation. I am currently unable to do the job I love. This diagnosis of Pulmonary Arterial Hypertension is not a pretty one as it is incurable and debilitating. If you would like to follow the fast progression of this disease in my body, my story is below.
And So it Begins...July 12-October 25, 2020:
My journey with Pulmonary Arterial Hypertension began in in July 2020 at the age of 24 when I started having breathing issues. I would walk up my apartment stairs and be panting at the top. I just thought I was out of shape so I pressed on. Fast forward to the first week of October: I went on a hiking trip to Arizona and couldn’t walk 10 steps without having to sit down and catch my breath. Thinking I was just out of shape, I progressed in this way for about 3 miles with my breath and chest pain getting worse as I went on. About 5 hours later, I still couldn’t catch my breath and my chest pain had not subsided so I was taken to an urgent care where they told me that my exercise-induced asthma had possibly returned. I was given an albuterol inhaler and was told to follow up with a pulmonologist upon my return to Tampa. I could not walk or hike for the remainder of this trip.
When I returned from this trip, I resumed my teaching job and noticed that I was losing my breath all day. My students were concerned for me and kept asking if I needed to take my inhaler. My inhaler did not help my symptoms go away. I kept pushing through, though, thinking it was just asthma.
Plot Twist: October 26-November 17, 2020:
On the morning of Monday, October 26, I took my inhaler and then carried my rolling cart down my apartment stairs to go to work for a teacher planning day. I then tried walking back up the 20 steps but collapsed and went limp. My vision was spinning and my left ear became muffled like I was on the inside of a fish tank listening to people on the outside. I couldn’t even reach for my bag that was right next to me to get my inhaler. After about 5 minutes of fighting off fainting, I was able to move enough to get my inhaler and my phone. My inhaler did not relieve any of my symptoms. I called my boyfriend of the time who told me to call 911, but thinking that it was just an asthma attack, I said no. He then called a neighbor who came to help me. My lips had turned blue and I had lost all color in my face. I couldn’t stand for about another 10 minutes. I was then taken to the ER since I still couldn’t catch my breath, was having chest pain, and my legs were like noodles.
My EKG came back significantly abnormal at the ER and my D-Dimer was elevated. They did a chest x-ray and a CT angiogram to check for blood clots. Those came back normal. At the time, he thought I possibly had cardiomyopathy and called a cardiologist for me to see on Wednesday. This day would begin my leave from teaching.
The cardiologist sent me to do an exercise stress test and an echocardiogram. During the exercise stress test (November 2), they started me at the flat level and slowest pace for 3 minutes. When she made the first change in incline and pace, I was only on for about 30 seconds before she got me off. My blood pressure and heart rate both spiked while I became short of breath.
That same day, I went to my pulmonologist appointment where they performed a pulmonary function test. My results were normal so she agreed that it was a cardiac issue.
On November 4, I had an echocardiogram. I was called the next day and told by the nurse that based on the echo, he thought I had pulmonary hypertension and was passing me off to a PH specialist. Since that specialist could not see me until November 23, friends and family fervently raced to find someone who could see me sooner which led to my meeting with Dr. Alvarez who is now my main doctor as he specializes in pulmonary hypertension.
We did some digging with the echo and discovered that my pulmonary artery systolic pressure number was 75-80%. A normal percentage is 20-25%. This is the number that led the cardiologist to assume I had PH.
Meeting Dr. Alvarez...November 18-19, 2020:
I was able to meet him on November 18. He said that he also saw in the echocardiogram that my right ventricle of my heart was already dilated. This was very concerning to him so he pushed for me to get my right heart catheterization done that same week. This was to confirm the diagnosis (because sometimes the echo can be wrong) in order to start treatment as quickly as possible (he said the medication for PH is extremely expensive so we needed to have the proper confirmation). This is also when he informed me that I will not be able to have children with this diagnosis, unfortunately.
Receiving and Accepting my Diagnosis after the Right-Heart Catheterization...November 20, 2020:
On Friday, November 20, Dr. Alvarez performed my right heart cath at St. Joseph’s North. The cath was even worse than my echocardiogram, which is apparently abnormal. My cardiac output is bad (it is 3 when it should be 6) and it showed him that I have severe pulmonary arterial hypertension which is the type of PH that cannot be cured. The arteries do not have the ability to do their job: they can’t constrict and contract. It is only fixed by a double lung transplant when it becomes too severe. This diagnosis is one that will never go away and for which I will be on heavy medication for the rest of my life.
Unfortunately, I did not respond to the nitric gas during the cath. If I had responded to this gas, I could have just gone on calcium channel blockers. Dr. Alvarez said I have a severe case of PAH and that he was going to start me on three aggressive medications (3) for four weeks to see how they do. I would see him again at the end of that period. If they weren’t working, he would use IV treatments. I was told during this time that I was not to return to work until we find a treatment that helps regulate it.
In the meantime, he said I’m also being placed in a clinical trial and he is sharing all my info with the group of PH specialists that he knows (this includes PH specialists across the country). He said his main goal is to help me live as normal a life as possible especially since I’m so young and that I am starting a journey with him. He re-emphasized that it is very important that I will not be able to get pregnant (permanently) with this diagnosis as that would be life-threatening and my medications are going to be highly potent, severely deforming any fetus.
A Turn for the Worse...November 20, 2020 - November 22, 2020
I then went home to my then-boyfriend’s dad’s house to recover where there were no stairs for me to climb. Around 10:45, I got up to go to the bathroom. After using the restroom, I tried to stand to turn around because I felt like I was going to throw up. I managed to open the door and call Jake. As he came in, I was bending down to get over the toilet when I apparently passed out, with Jake catching me before my head hit the tub. I was unconscious for 30 seconds. The family called 911 while I came back to my senses. My lips turned completely blue and I was rolled over on my side as I dry-gagged. The paramedics arrived and took me to the ER where they did more bloodwork and a chest x-ray. Everything came back normal so they just assumed I was reacting to the low dose of anesthesia I was given during the catheterization (I was kept awake but given a mild sedative to relax) and I was released with nausea medication around 2:00 am.
Dr. Alvarez called me on his personal cell phone the following morning, however, after hearing from a friend that I had a syncopal episode. He said he couldn’t blame the anesthesia because it should have been out of my system by then. He said because of the syncopal episode he wanted to get me started on IV infusions right away; that he was making phone calls and to get me into the hospital that evening and explained that all of this would happen in ICU. He gave me clear instructions that I am not to do any physical activity, including walking up the stairs to my apartment.
Present...November 21-onward
The permanent IV catheter was placed in my chest the morning of November 22, 2020 and I was in the ICU until the medications were regulated as I fainted again while in the ICU and my blood pressure dropped to 40/20. I was released the evening before Thanksgiving. It has been a whirlwind ever since. Check out my “Updates” section to follow the rest of my story.
Fundraiser Information:
Continue following my story by reading my updates.
For any that wish to donate without using GoFundMe please feel free to send offline donations by mail by contacting her mom, Alissa MacGillivray, or Ashleigh for her new apartment address.
Donations will be used for:
1) Medical Bills/Related Expenses ($40,000)
2) Transportation (both to hospital and for future mobility) ($2,000 - $4,000)
3) Out of work since October 26, 2020 ($3,400/mo)
4) Other bills (Phone, Car, Rent, Utilities, Medications, Therapy). ($15,000)
For updates we will be building a Caring Bridge and Facebook to constantly keep everyone up to date with Ashleigh's progress.
And So it Begins...July 12-October 25, 2020:
My journey with Pulmonary Arterial Hypertension began in in July 2020 at the age of 24 when I started having breathing issues. I would walk up my apartment stairs and be panting at the top. I just thought I was out of shape so I pressed on. Fast forward to the first week of October: I went on a hiking trip to Arizona and couldn’t walk 10 steps without having to sit down and catch my breath. Thinking I was just out of shape, I progressed in this way for about 3 miles with my breath and chest pain getting worse as I went on. About 5 hours later, I still couldn’t catch my breath and my chest pain had not subsided so I was taken to an urgent care where they told me that my exercise-induced asthma had possibly returned. I was given an albuterol inhaler and was told to follow up with a pulmonologist upon my return to Tampa. I could not walk or hike for the remainder of this trip.
When I returned from this trip, I resumed my teaching job and noticed that I was losing my breath all day. My students were concerned for me and kept asking if I needed to take my inhaler. My inhaler did not help my symptoms go away. I kept pushing through, though, thinking it was just asthma.
Plot Twist: October 26-November 17, 2020:
On the morning of Monday, October 26, I took my inhaler and then carried my rolling cart down my apartment stairs to go to work for a teacher planning day. I then tried walking back up the 20 steps but collapsed and went limp. My vision was spinning and my left ear became muffled like I was on the inside of a fish tank listening to people on the outside. I couldn’t even reach for my bag that was right next to me to get my inhaler. After about 5 minutes of fighting off fainting, I was able to move enough to get my inhaler and my phone. My inhaler did not relieve any of my symptoms. I called my boyfriend of the time who told me to call 911, but thinking that it was just an asthma attack, I said no. He then called a neighbor who came to help me. My lips had turned blue and I had lost all color in my face. I couldn’t stand for about another 10 minutes. I was then taken to the ER since I still couldn’t catch my breath, was having chest pain, and my legs were like noodles.
My EKG came back significantly abnormal at the ER and my D-Dimer was elevated. They did a chest x-ray and a CT angiogram to check for blood clots. Those came back normal. At the time, he thought I possibly had cardiomyopathy and called a cardiologist for me to see on Wednesday. This day would begin my leave from teaching.
The cardiologist sent me to do an exercise stress test and an echocardiogram. During the exercise stress test (November 2), they started me at the flat level and slowest pace for 3 minutes. When she made the first change in incline and pace, I was only on for about 30 seconds before she got me off. My blood pressure and heart rate both spiked while I became short of breath.
That same day, I went to my pulmonologist appointment where they performed a pulmonary function test. My results were normal so she agreed that it was a cardiac issue.
On November 4, I had an echocardiogram. I was called the next day and told by the nurse that based on the echo, he thought I had pulmonary hypertension and was passing me off to a PH specialist. Since that specialist could not see me until November 23, friends and family fervently raced to find someone who could see me sooner which led to my meeting with Dr. Alvarez who is now my main doctor as he specializes in pulmonary hypertension.
We did some digging with the echo and discovered that my pulmonary artery systolic pressure number was 75-80%. A normal percentage is 20-25%. This is the number that led the cardiologist to assume I had PH.
Meeting Dr. Alvarez...November 18-19, 2020:
I was able to meet him on November 18. He said that he also saw in the echocardiogram that my right ventricle of my heart was already dilated. This was very concerning to him so he pushed for me to get my right heart catheterization done that same week. This was to confirm the diagnosis (because sometimes the echo can be wrong) in order to start treatment as quickly as possible (he said the medication for PH is extremely expensive so we needed to have the proper confirmation). This is also when he informed me that I will not be able to have children with this diagnosis, unfortunately.
Receiving and Accepting my Diagnosis after the Right-Heart Catheterization...November 20, 2020:
On Friday, November 20, Dr. Alvarez performed my right heart cath at St. Joseph’s North. The cath was even worse than my echocardiogram, which is apparently abnormal. My cardiac output is bad (it is 3 when it should be 6) and it showed him that I have severe pulmonary arterial hypertension which is the type of PH that cannot be cured. The arteries do not have the ability to do their job: they can’t constrict and contract. It is only fixed by a double lung transplant when it becomes too severe. This diagnosis is one that will never go away and for which I will be on heavy medication for the rest of my life.
Unfortunately, I did not respond to the nitric gas during the cath. If I had responded to this gas, I could have just gone on calcium channel blockers. Dr. Alvarez said I have a severe case of PAH and that he was going to start me on three aggressive medications (3) for four weeks to see how they do. I would see him again at the end of that period. If they weren’t working, he would use IV treatments. I was told during this time that I was not to return to work until we find a treatment that helps regulate it.
In the meantime, he said I’m also being placed in a clinical trial and he is sharing all my info with the group of PH specialists that he knows (this includes PH specialists across the country). He said his main goal is to help me live as normal a life as possible especially since I’m so young and that I am starting a journey with him. He re-emphasized that it is very important that I will not be able to get pregnant (permanently) with this diagnosis as that would be life-threatening and my medications are going to be highly potent, severely deforming any fetus.
A Turn for the Worse...November 20, 2020 - November 22, 2020
I then went home to my then-boyfriend’s dad’s house to recover where there were no stairs for me to climb. Around 10:45, I got up to go to the bathroom. After using the restroom, I tried to stand to turn around because I felt like I was going to throw up. I managed to open the door and call Jake. As he came in, I was bending down to get over the toilet when I apparently passed out, with Jake catching me before my head hit the tub. I was unconscious for 30 seconds. The family called 911 while I came back to my senses. My lips turned completely blue and I was rolled over on my side as I dry-gagged. The paramedics arrived and took me to the ER where they did more bloodwork and a chest x-ray. Everything came back normal so they just assumed I was reacting to the low dose of anesthesia I was given during the catheterization (I was kept awake but given a mild sedative to relax) and I was released with nausea medication around 2:00 am.
Dr. Alvarez called me on his personal cell phone the following morning, however, after hearing from a friend that I had a syncopal episode. He said he couldn’t blame the anesthesia because it should have been out of my system by then. He said because of the syncopal episode he wanted to get me started on IV infusions right away; that he was making phone calls and to get me into the hospital that evening and explained that all of this would happen in ICU. He gave me clear instructions that I am not to do any physical activity, including walking up the stairs to my apartment.
Present...November 21-onward
The permanent IV catheter was placed in my chest the morning of November 22, 2020 and I was in the ICU until the medications were regulated as I fainted again while in the ICU and my blood pressure dropped to 40/20. I was released the evening before Thanksgiving. It has been a whirlwind ever since. Check out my “Updates” section to follow the rest of my story.
Fundraiser Information:
Continue following my story by reading my updates.
For any that wish to donate without using GoFundMe please feel free to send offline donations by mail by contacting her mom, Alissa MacGillivray, or Ashleigh for her new apartment address.
Donations will be used for:
1) Medical Bills/Related Expenses ($40,000)
2) Transportation (both to hospital and for future mobility) ($2,000 - $4,000)
3) Out of work since October 26, 2020 ($3,400/mo)
4) Other bills (Phone, Car, Rent, Utilities, Medications, Therapy). ($15,000)
For updates we will be building a Caring Bridge and Facebook to constantly keep everyone up to date with Ashleigh's progress.
Fundraising team: Ashleigh Mac's Squad (3)
Ashleigh MacGillivray
Organizer
Overland Park, KS
Alissa MacGillivray
Team member
Sheldon MacGillivray
Team member