I’m Aware That I’m Rare: Allison Wells (332)
The phaware® interview
Pulmonary Hypertension Patient Allison Wells is a substitute teacher from Gander Newfoundland. In this episode, Allison discusses self-diagnosing her PH and her decision to adopt.
My name is Allison Wells, I’m currently living in Gander, Newfoundland. I am a substitute teacher and I have a two-year-old daughter and I was diagnosed with pulmonary hypertension at the age of 27 in 2017.
I started realizing that something was wrong before Christmas the year prior. My earliest memory of thinking that there was maybe something wrong with me was when I was putting up my Christmas tree. I was bent over fluffing the limbs of the tree and every time I would stand back up I like I had a head rush. Just going up the stairs, I was getting winded, but it was winter and I just thought, well, I haven’t been walking or being very active lately. [I thought] maybe once the spring came and I could get outside again and build up some endurance that was the whole issue, but it just kept getting worse and worse. I did see my family doctor and like many other people, it’s not something that comes to mind right away since it is a rare disease.
I was tested for allergies and asthma and kidney disease and few different things. I actually self-diagnosed myself, which I know they tell you not to like Google your symptoms, but I did and that was what I came out with, this disease met all the symptoms that I had. Maybe a month before I was diagnosed I was decorating for my sister’s baby shower. Blowing up a balloon, I took a picture of myself and sent it to my friend. I was like, “Oh, blowing a balloon, not good for the pulmonary hypertension,” as a joke. Then, a month later, when I was diagnosed that I actually messaged her and I told her that that was actually what I had and it was a shock, but kind of funny at the same time.
My actual diagnosis came in May of the next year after I started having symptoms. I was at school and I went up a flight of stairs and got really lightheaded and actually passed out walking into a classroom full of grade nine students. There was another teacher there and someone caught me before I hit the ground, but they made me go to the hospital. I ended up being in hospital for an entire month. A lot of that was just waiting.
[I was] hooked up to heart monitors. My pressures were actually at 120. Everyone was super concerned. I couldn’t do anything, I would just move from my bed, sit in a chair and I would set off the alarm because my heart rate was so high just from any small movement. The doctor that I’d seen, after looking at my report and my numbers wanted me to have the IV meds administered right away. He didn’t want me to wait even overnight. He wanted to have it done that evening. He was really pushing for it. My mother was freaking out, wanted to have it done right away. I just thought it was going to be like, okay, here’s some IV meds. We’ll take it out in a couple of weeks’ time and start you out on some oral [therapy]. But he said, no, it was going to be for life and it was a port, and you’re going to have to mix your meds. You would have to have a special nurse. You’d never be able to swim or even shower regularly.
I didn’t want to do that until I spoke to a specialist. But the doctor that I was seeing said that he wasn’t sure that I would even last through the night with how high my pressures were. But my vitals were fine, my oxygen was good, my blood pressure was fine, and he said he would consult with another doctor in another city. So he came back and said, okay, I agreed to wait. When I did finally see my specialist, maybe three or four days later, he came in and I had just showered and straightened my hair and had makeup on. I was sitting up in the bed and he was like, “You’re the patient?” He was kind of surprised too with the numbers that he had seen, that I look so well. He said, “I heard they gave you a bit of a scare.” I said, “Yeah, well, more so, my mom,” but I was pretty calm throughout it all. He said, “Yeah, we’re just going to start you on some oral medications. We wouldn’t go to such a drastic step without trying other avenues first.”
Since I self-diagnosed myself, I knew that was one of the recommendations to not get pregnant, but up until seeing the specialist, I was maybe three weeks into a hospital stay, no one had actually, came out and said that to me. I just kept hoping, well, I’m sure that’s the recommendation, but maybe it’s not taken as seriously. But before I was released, my specialist and a representative from the medication company that I used, they came in and sat with me and went through a whole bunch of information. Finally, they brought up the topic of pregnancy and said that it was highly recommended that I don’t ever get pregnant, because of the risks that it would pose for me and the baby.
That was pretty devastating. It took me a long time to really let that sink in. But I knew wanting to be a mother and it didn’t matter how it came about. I felt like my purpose of being here was being a mother, that was my ultimate goal in life. I just started researching other avenues. I considered surrogacy. A friend of mine said that she would be a surrogate. She had just had a baby herself, so she couldn’t do it right away. But she said in a few years that would consider taking it on. But before we needed to go down that road, we adopted a baby girl. She brought so much joy and purpose to my life and I really don’t know where I would be right now without her.
Our adoption was actually a direct adoption, we’ll call it. A friend of mine that had adopted from a territory in Canada. She adopted two little boys from there and she knew of a woman who was pregnant and was looking for someone to adopt her baby. She put us in contact with each other and when the birth mom approached her social worker, she named myself and my husband as the adoptive parents. The baby was never in foster care. It was a direct placement.
We were named as the adoptive parents. We weren’t on any lists for waiting. We didn’t go through any adoption agency. I was diagnosed in May. In August, I had a conversation with my friend about my interest in adopting. In October, she messaged me and said she knew someone that was looking for someone to adopt her baby and my daughter was born in January. It wasn’t really much of wait time. My diagnosis didn’t have any bearings on if we were approved or denied. I did get a letter from my specialist, which wasn’t even required. I just took it upon myself to get it just so there could be no questions and he just wrote a letter stating that my diagnosis wouldn’t hinder me from raising the child. I submitted that to my social worker and there were no questions at all.
A piece of advice that I would give someone who maybe would find themselves in a situation I was, I was only 27 years old, married, hoping to start a family and my dreams that were pretty much crushed, but I would just tell someone that it is not helpless. There’re many other ways to start a family. Talk to your friends, talk to your family. See support groups or just groups of interests online. Anyone that can put you in contact with someone who has adopted before or who has used a surrogate, get their ideas and take their advice. See if there’s someone that they can connect you with that can help you in your journey to start a family and just realize that there are many children in the world already that need loving homes. If you’re willing to provide that for a child, then the love that you get in return is better than anything in the world.
My name is Allison Wells, and I’m aware that I’m rare.
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