These answers have been compiled by COTS volunteers who spoke on the phone to multiple transplant families. One theme has rung true: our families are struggling and are in need of extra support.
How has this impacted your family?
- I am a frontline worker as a respiratory therapist in the critical care unit and my husband is a full-time nursing student. I have no choice but to go to work and this pressure is causing immense risk for my immunocompromised family. -Family A
- We don’t leave the house and we don’t see anyone. When the quarantine is over it won’t be over for us, this brings a whole new level of anxiety and challenges. -Family B
- We are concerned and taking precautions, however, we laugh at times because this is what we have always had to do, before the pandemic started. We have always had to clean and sanitize things, and during the first one-to-two years post-transplant we had to make visitors wear masks to keep our daughter safe. With this said, we understand that this is likely a shock for healthy people who have never had to take such extreme precautions. -Family C
- I am scared for my child, but I try not to think about it too much.
- COVID-19 has hugely impacted us. Living in remote Bella Coola, all the daughter’s medical appointments are far away, no airlines into the region for the public. -Family E
- All visits to the hospital for check-ups and treatments have been put on hold because the doctors don’t want our son coming in due to the increased risk. Otherwise, he is handling it very well— he has been in isolation for 4 months before when he was going through treatment, so he is used to entertaining himself and staying at home. -Family F
- It has definitely been a challenging transition, but one I am trying to welcome and see the bright side in. Because I am immunocompromised, I cannot go anywhere and risk being exposed to the virus, which is difficult. By extension, family is all limiting their exposure outside to keep me safe, limiting grocery store visits to once every 3 weeks or so. Having classes online is an adjustment, hard to be motivated and to maintain some sort of routine. -Alumni Transplant Recipient
What additional struggles are you facing due to the pandemic?
- We were expecting a transplant call within 3 weeks for our daughter, but that is no longer happening and we are uncertain when this will return. We are upset because we have been waiting for a long time, but also understand why it is happening. With three young children and limited child care available, we can’t help but feel overwhelmed. -Family A
- Our daughter is in need of new leg braces and hearing aids, as well as long overdue dental visits. She is in a lot of knee pain from braces that need adjusting. -Family E
- ” This is impacting our financial situation because we are losing a lot of business, but we are doing the best we can to adapt and make sure we are still getting the most business they can. We are being careful to wear gloves and masks while making deliveries. In addition, our parents usually come up from Mexico to visit their grandchildren, but due to travel restrictions this is simply not possible. We have had to adjust to talking on the phone everyday in place. -Family F
- I miss being able to see people face-to-face, other than family members. I am appreciative of technology and the ability to have Zoom calls, but it also not the same because you must be intentional about making time vs. spontaneously running into people. -Alumni Transplant Recipient
How is this affecting you or your transplant child psychologically?
- It feels like we are just waiting for the shoe to drop. Because we are essential workers, we are over-tired, over-worked, and overwhelmed. Being the parents of an immunocompromised child comes with immense anxiety. Our transplant children is too young to understand, so she doesn’t experience the same worries. -Family A
- Our son does miss his friends and having that social interaction. However, he does not want to really go anywhere because he wants to keep himself safe, so he’s staying at home and only really going out on the porch for fresh air. -Family F
Do you feel isolated? If so, what are you doing to help cope?
- Yes, because we are used to spending time in the outdoors and having people around to provide support within our home. We are simply unable to cope due to a lack of time paired with constant uncertainty.
- We wish that playdates could happen, but we are thankful that our family gets to be together and that even when myself and my husband are working, we are still close to the kids. -Family C
- Overall we are all doing okay. The pros of living in remote areas include no city congestion and there are no COVID-19 cases here so far *interview obtained in April. We are doing everything we can to cope: homeschooling, outdoor activities, art, baking. -Family E
- In many ways, it has been nice to really reconnect with family at home— while I was going to university, our schedules did not always align. But now we can have dinner together and talk more, which has been nice. -Alumni Transplant Recipient
How have you explained the current COVID-19 situation to your transplant child?
- As she is only three years old and just recently started talking we have not faced this issue yet. -Family A
- Yes, I have explained that it is very contagious and everyone has to stay home and cancel activities. I told them that they are more likely to catch it and have serious consequences. -Family B
- She understands we have to stay home by the advice of intelligent doctors. I have to trust that if we keep safe at home and follow nutrition advice, she will be fine. -Family D
- Our son has a good understanding of the situation and how it could impact his health, which is why he is isolating at home. Taking his school classes online so he still has something to keep him busy. He is more so the one taking the lead in saying he shouldn’t be leaving the house, he wants to stay home. -Family F
Do you have a support network to help you in these tough times?
- We don’t have a whole lot of support. My brother is our biggest support, but he is super busy so we self-isolate to keep him safe.
- We have a very strong support network, between my family in Mexico, my wife’s family in Ecuador, and all of the friends that we have here. Our friends have always been very supportive throughout our transplant journey and continue to be. -Family F
Is there a way that COTS can better support you?
** Please note that these answers were reiterated by multiple families. **
- Simple things that preserve time in daily tasks (ie. meal gift cards to save time spent cooking).
- Counselling for mental health support.
- Financial support to better put food on the table.