Obviously, a patient with lung disease complaining about showers is being honest about it. It must take a lot to complain about something as relaxing as that. I have to put boundaries up to keep myself from breathing problems as a patient with alpha-1 antitrypsin deficiency (AATD).
I noticed I had problems with showering. That’s when most people with AATD notice breathing issues, but they can show up sooner. So it makes sense that a patient would be more tired or have an exacerbation as a result. I believe it’s because of the humidity, which sometimes feels like my enemy. For example, I almost always have a hard time breathing when it rains or is very humid.
So, how does an patient with AATD remedy problems like this that come from something as necessary to daily life as a shower? There are a few strategic things that can really help people with AATD execute this task. It may be that we have a lower oxygen level during a shower if the water is hot or if there is a lot of steam. For those who need supplemental oxygen, they will most likely need it during a hot shower.
Some people I know have a stool or chair that they use in the shower. It helps because bending over affects oxygen levels. I think this would be helpful to many people, even those without AATD. Some people who suffer from AATD take cold or lukewarm showers. One person I know swears by cold showers as a way to stay well. This may not be the case for everyone, but it is something to think about.
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If someone prefers hot showers, they will have to be quick and keep the room well ventilated. A hot shower can be done, but there needs to be planning ahead of time. Some people are better at quick showers than others, no matter what the risk. Having an open window or a door open during the shower will not just lower the humidity but will also prevent mold growth. Increased mold makes showers even more dangerous for a patient with lung disease.
A person who is chronically ill uses a lot of energy stores to do simple things like getting dressed, going up stairs, and performing general activities of daily living. It’s a good idea to have what you need beforehand to keep any running around to a minimum. Having a robe to put on after the shower will help so you can leave a steamy bathroom more quickly.
Boundaries and good planning can lower anxiety stemming from showers, too. It seems appropriate to choose to be away from a room where the air is suffocating. Believe it or not, patients will need encouragement to make choices like these for themselves, because they are sometimes counterintuitive. They will know if showers are a problem, but solving the problem may not be something they think they can do. But by getting everything together before a shower, they are helping themselves. It’s important to affirm and support this type of preparation for people with AATD, as it shows you understand that they need to be careful during this activity.
Patients have a lot of complaints, and we (most of us) are aware of how needy we come across. But often, we appreciate knowing we are headed in the right direction. I do think, sometimes, simple tips can also mean the world to us, as well. Things like leaving the door open in the bathroom if there are no windows to open can give a patient hope they didn’t know existed.
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The doctor-patient relationship can be easily strained, but a patient can spot a good doctor a mile away. When a patient complains, that may very well mean they feel safe opening up to their doctor.
I know a lot of people (myself included) who hate bringing things up to their doctor because they feel afraid of being a “burden” on anyone. That is why I appreciate my doctor for asking me questions and showing concern for me.
I have a good care team who understand me and my complaints. They know that doing everyday things like showering can be hard for a person with AATD. This allows me to feel bold enough to speak up. It seems like it takes a village to not only raise a family but also to keep a person healthy throughout their life.