I’m Aware That I’m Rare: Joan Gibson (434)

the phaware® interview

Canadian pulmonary hypertension care partner, Joan Gibson discusses her daughter Jane’s path to diagnosis, decision to embrace surrogacy, and her road to recovery after two PH related strokes.

My name is Joan Gibson. I live in Ottawa. I became involved with pulmonary hypertension six and a half years ago when my daughter was diagnosed with idiopathic pulmonary arterial hypertension. PH is a disease we knew nothing about. I noticed in the summer that we were moving something heavy in her house. She was really out of breath. I suggested that she check with her doctor. So she went to check with her doctor. I asked, “Well, how did the appointment with the doctor go?” She said, “I went to an allergist, asthma doctor, and he gave me a puffer and it’s no good, it doesn’t do anything.” I said, “Okay. Well, maybe we should go back to the doctor. There’s something that’s not right here.” I said, “If you want, I can come with you.” I went back with her. The doctor said, “Well, usually doctors have a plan A and a plan B, so maybe you could go back to the allergy doctor and say, Hey, plan A didn’t work. What do you suggests for plan B?”

He said, “We’ll do a few more tests. One of them will be a stress test.” I went with her to have the stress test done. I was sitting in the waiting room and we waited and waited and waited. They weren’t able to progress with the stress test too far because her pressures were too high. Basically, at that point in time, he determined that she had pulmonary arterial hypertension, even though there was no other indications other than the stress test and the results. He referred her to the clinic in Ottawa. They called us the next day. We were lucky in that it was diagnosed really quickly. So even though it was severe, her heart wasn’t damaged too much at that point in time.

In the initial timeframe when we heard about it, this is the point where I bring my Kleenex, because even though it’s been six and a half years, it was devastating. I remember we were waiting for Jane to come back from her final test, and the nurse was in the room with me and said, “We’re pretty sure this is what it is.” She started crying. I thought, “Whoa, if she’s crying, then this is pretty bad,” so I started crying. She had a daughter the same age. She knew a lot about the disease and the progression. It’s progressive and it’s chronic and there’s no cure, so there’s an end to it. It was pretty devastating actually. Then when we got it confirmed on Tuesday, by then the shock, I think it’s the shock of it all.

We’re basically a healthy family. We don’t do interventions. We have a lot of Parkinson’s on both sides of the family, so I’d been working with that group thinking, “Okay, this is our future. I know what it’s like. I know how to handle it. I know what to expect,” but this was like, wow. I never even heard about this. I knew enough not to go on Google, because there’s just terrible things on there. We had really good support from the clinic. It was hard to hear the doctor very honest and open. When she talked with him she said, “I’d like to be a mom. Is that possible?” He said, “No, because it takes energy for a baby and you don’t have energy, and you can’t get pregnant because it’s hard on your body, and you have to be around to bring up the child.” That just tore at my heart.

It’s been a hard journey, and sometimes I do well and sometimes I don’t do well. She did really well for six and a half years on oral meds. Then, we had a bump in the journey a few months ago where her pressures were very high. The doctor wanted to have an aggressive treatment and recommended IV therapy. She’s very smart, and she figured out how to use this pump and used these drugs. It was going pretty well, and then the drug was doing well. Her blood pressures were going down a lot in her heart, and she was feeling a bit better. Then, she had a stroke. She actually had a couple of strokes, that was devastating. The first stroke was very upsetting. The second stroke was devastating, because we knew what was ahead with the hospital visits and the treatments, and lack of treatment. Well, not lack, but the difficulty in treating, because there were four or five medical specialties involved with her who coordinated well, but it’s difficult.

A lot of the messaging was, “Well, it’s rare. We don’t know. She has a complex case. We think this should work, but we don’t have any data. We don’t think this is a risk factor. We don’t know why she had this stroke. We don’t think the medicine and the IV is causing it.” More really difficult times and information from the doctor. We said to the doctor, “Well, we’d never heard of strokes with people with PH.” His response was, “Well, they don’t usually live.” It was hard to hear that information and realize how sick your daughter was because my approach for her first few years was just to pretend she was okay. She looked okay, and she was doing okay. I just figured there was going to be a cure before she wasn’t okay. That approach didn’t work too well. Now, we were dealing with she is sick and she’s got a very serious disease, and they know a lot, but there’s so much they don’t know. Because it’s interacting with other parts of her body, which I think is not uncommon with PH patients, I think there’s other parts of their body that are sick at the same time. So all the interactions of the drugs and how the body’s responding, plus everybody is individual, so her body responds in its own individual way. It’s been really, really difficult.

We’re three months from the last stroke. The last month has been good. There’s no symptoms. So she’s gaining more confidence in her body and in her ability to live, so we’re gaining more confidence. I’ve been living with them to provide support for her and her husband and the baby. Now, I go home on the weekends, so that’s good for them to have some independence. So that’s the goal. Our new normal will be she’s got PH, she’s had strokes, but her meds are good and we’re looking forward to another number of good times.

With the baby, she did the surrogacy journey. She wanted to have a baby. She and her husband thought about it, because it’s difficult when you have a disease like this. Should you have a baby? Well, not just physically, but they thought about it a lot and they chose life. They decided yes, they would have the baby. We lined up behind that with all the risks that inherent with it. A baby’s always something to be celebrated. He’s a beautiful little boy. He’s a year old now. He brought a lot of joy and love into their life, and they were really lucky.

Jane has a spiritual side. We have a spiritual side. I guess, part of the decision making was if the stars line up and it occurs, it’s meant to be. The stars lined up really well. The surrogate that they found through word of mouth, which is really unusual, actually had the same name as my other grandchild and had a dog whose name was the same as my son’s. I mean, they’re just really little silly things, but they just give you, “This is interesting, these coincidences.” It worked out really well. The lady lives not far from where they live, so it’s in the same city, and she was very open to having them involved in the pregnancy and still very supportive. She’s an honorary aunt. She’s the godmother. She has a family. I think her seven-year-old daughter was probably more excited about having this baby come than… Well, obviously Jane and Craig were the most excited, and then this little girl was just pretty excited about the baby. He’s not little. He’s big. He’s a handful. He’s a wonderful little guy. He’s brought a lot of joy into our lives.

So as a caregiver, it’s a bit of a funny role because I’m a mom and a grandma, and she has a wonderful husband who’s a live-in caregiver. When she was first diagnosed, she had just moved out. I was dealing with empty nest syndrome, which was great, because I didn’t want dependent kids. My kids are independent. My head was very happy with that. My heart was not quite as happy, but I knew she was in a good place. Then a couple of months later, she got diagnosed with idiopathic pulmonary arterial hypertension. Then I wanted to call her every morning just to make sure she was okay, but that’s not really what you do with a daughter who’s 26 years old and has a partner. Anyway, it wouldn’t have been good for her confidence for me to be calling and checking in every day. So it’s been a caregiver, but respecting that she’s in a partnership. They got married a few months later. Even after her diagnosis, her partner said he didn’t care. He just loved her to pieces and wanted to be married, so we loved him to pieces. It’s been in support of them as a couple and because I want to respect that they are a couple.

So the caregiving roles weren’t really so onerous except the heartstrings and going to the medical appointments. I’m happy to do that, especially when the information’s good, but when the information’s not good, it’s really bad. It seems that when I go, it’s bad information, so we’ve got this thing now, I’ll go to the doctors where I’m not going to get such bad information, because it could be a bit superstitious. Is me being there, going to give bad information? My husband or her husband will go to the other ones.

After the baby was born, I noticed she was getting more tired, so I’m retired, so I would go out a little bit more often and just spend the afternoon just so that she get a little bit of rest. But I was thinking it was the baby and babies are tiring, but after she had the stroke, they couldn’t manage on their own. She was in the hospital for I think about two weeks the first time, and they needed help at home with the baby and going into the hospital to visit her. It’s pretty heavy duty. Then, after the second stroke, the same thing. Again, we were just starting to loosen up a little bit. They were getting a bit more confident and independent, but then the second stroke brought us back to actually before square one I think, because you know what you’re getting into. It’s very scary. There were more side effects from this stroke. Then, there’s the little guy who, it broke my heart to have them separated for two weeks in the hospital the first time and a week and a half the second time. The little guy would go in to visit her a little bit, but there was COVID on her floor one time. So it’s hard, as a caregiver, to see your daughter not being the mom she wants to be.

I came to be more involved with PHA Canada, because after a year or two of pretending things weren’t happening, it didn’t really work very well. I thought, “Well, maybe I’ll throw myself into it, get more knowledgeable, know more people. Maybe that’ll help me deal with the fears and the sadness about it.” At that point in time, there was a campaign for UPTRAVI. It was a drug that Jane was already on and was covered for by her company, luckily, but lots of people weren’t covered for it. Advocacy is something I had done with Parkinson’s. I used to be involved with the Parkinson’s Association. Plus, I worked in the federal government for 30 years and had worked in the Privy Council Office. I had a fairly good understanding of how governments worked and wasn’t overwhelmed by the whole government stuff. It interested me.

PHA Canada had put together a great resource for us through a consulting service who would provide us with the information we needed to meet the MPPs to advocate for the access to UPTRAVI on the public formulary so everybody could have access to it. That was great. I felt like I was able to do something. I visited three MPPs, one with Jane, one with my son, because he had a different MPP. It’s really important that you bring somebody in the MPP. MPP is a member of provincial parliament in Ontario. It’s important to bring somebody who’s actually in the constituency, then you get better traction. Then, we were able to go with some people in the PH support group to another MPP who we were able to make the link with. I think that, that helped, and I was able to engage my sisters who live in Southwestern Ontario to meet with their MPP, something that they really didn’t feel comfortable with it, but because they loved Jane so much, they did it.

We moved the dial on that. It was approved on the formulary, so that was a great thing. I think because I became involved in that and was interested in it, I was able to help out a bit more with PHA Canada, then they asked, “Would we like to be an ambassador?” Jane wanted to be, but because she has PH and it’s not always able to depend on her energy, she thought maybe if two of us did it together, we could be together ambassadors, but she doesn’t need my help. She’s very out there. She’s involved in lots of different initiatives to try to support the PH community. She’s a co-chair of the support group here in Ottawa. So it’s been interesting being an ambassador for a year.

To be a support system for my loved one, I think the child is the part that gets me. I think you obviously don’t want anybody to be involved in it, but if it was an older person like my husband, we’ve had a life, but for your child, it’s just not the way things are supposed to be. My experience is specific to that. It’s six and a half years and I still struggle, so it’s just the way it is. In terms of suggestions, I think boundaries are okay. Sometimes I can’t do everything I want to do. Sometimes it’s okay to put your head in the sand and pretend it doesn’t happen. It’s okay to cry. It’s okay not to be okay. It’s okay not to have the answers. As I was mentioning earlier, I just don’t go to some doctor’s appointments, which is not like me, because I’m usually a pretty good patient advocate to go and take notes. People like me there with them, but I can’t handle the information. It’s okay for me to say, “No, I can’t go to that appointment. You have somebody else.”

I found that yoga’s good for me. I find being around positive people is good for me. Sometimes part of my boundaries are, I can’t be on that Facebook page. There’s just too much going on there right now that breaks my heart. Not because people are mean or nasty, just because sad things are happening. So I can say, no at that point in time. I can’t be with this group of friends because there’s too much drama or there’s too much whatever. I need to find a friend who’s just positive about things. I have a friend who has a daughter with MS, so we have a common thing there that’s another chronic progressive disease for which there’s no cure, and her daughter’s looking at surrogacy. So there’s a lot of things that we can relate to each other on.

Therapy is good. It’s hard to get these days. The psychologists are few and far between. I rely on some spiritual direction. I find that, that’s helpful, so sort of a bit of an inward calming. It’s hard in terms of tips for caregivers, especially if you’re a parent, it’s just hard. When your new normal has been established and you’re running smoothly, it’s good. Then when you hit a bump, it’s not good. Then, you just work that through and you know that you’re going to come through on the other side again, and it’ll be good for a while again. So you just hope for the positive. You celebrate the positive, and you find the joy in each moment. I heard that I think on the radio, I don’t know, a couple of months back, and I thought, “Oh, for heaven’s sakes, how can I be joyful? It’s not joyful.” Then, I thought, “Well, I can be joyful for a moment.”

So I just focused on a bird, or I focused on the flower. I listened to something and thought, “Oh, that’s joyful.” Then it was kind of relieving to have a moment where I had joy. Then I didn’t really want to get back to my sadness too much after that, so it was a good eye-opener for me. I think it was interesting that, that bit of information I paid attention to at that point in time, because sure, I’ve heard, “Look for the joy,” many, many times, but for some reason at that point in time, it stuck in my head and it was helpful.

My name is Joan Gibson and I’m aware that my daughter is rare.

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