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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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7 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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@Jimi Mcintosh I think that’s a great rule to have in place especially when trying to balance family life and doctors appointments. I often try to do something similar unless it’s an absolute emergency or will safe a specific day in the week for appointments that way I am not stressing myself out attempting to squeeze people in at the last second.
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@Jimi Mcintosh The dry-erase board is a brilliant idea! I laughed at the part where if you don’t make it on the board…see ya next week maybe! Good for you! It sounds like this is working well and you need to do what is best for you.
My heart still goes out to your not being eligible for transplant. I did not know the cut-off for kidney is 70 in the US. If anything I thought it might be up to the hospital and not a nationwide rule. In this day and age 70 does not seem too old to be considered.
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My son purchased a shaker table to help me mix my medication all at once. I order 2 22mm test tube racks to place the vials in and use speed 183 for 48 minutes plus 20 minutes more. The shaker table was purchased on Amazon
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@Buglady Which PH treatment are you on? I would have never thought of using a shaker table. I’m curious if any of our other members have used one. Would you mind either sharing a pic of yours or a link to the one you ordered through Amazon?
You mentioned in your bio that you have an allergy to Chloro-prep. @cullen-steele is too. He was on Flolan and it took a while to find dressings that worked well for him. Here is a link to that topic where the both of you can share your experience and perhaps others will too.
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I would say take care of yourself! If you realize that it’s hard for you or you’re tired, you should stop and take a break. No overexertion. You don’t have to do a difficult job with your last strength. If you have received a PH diagnosis, you should slow down and assess what is really important for you, and what things you can do.
And one more thing – everything needs to be simplified! You might not be able to complete all your plans for today, but at least you’ll feel good.
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