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Tips for living with chronic diseases
When living with chronic or rare diseases such as PH or transplant, it is common to discover tips, tricks, or methods that help to keep your care running as smoothly as possible. For example, as someone who has lived with a chronic disease such as PH and also received a transplant, one of my biggest rules pre- / post-transplant was to stay loyal to wearing a mask out in public, no matter how big the crowd. This helped to reduce the risk of my getting sick, and I still stick to this rule today. Many of the members in the community have long-term experience with living with chronic diseases or even transplant as well.
With this in mind, what are some tips you may have for someone who is first beginning to care for something like PH or the transplant process? Is there anything you would do differently?
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2 Replies
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Great topic, Cullen. Many of us will probably think of the spoon theory as an important tip on how to live with PH. For example, when you have something on your calendar that you are looking forward to but know it’s going to require a lot of energy, try and plan more restful days before and a day or 2 after the event. But that can be easier said than done. Does anyone want to share how you manage it?
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Trying to balance your calendar with physical training, doctor appointments and family time. I am starting to use an erasable board that I fill out on Sunday evening for upcoming week. If you are not on my board by then, short of an emergency, you go to following week. I has to give up hope for a kidney transplant in the USA, cause 70 is the cut off, no need to give a good organ to an old person.
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