A Porphyria interview , Chronic Kidney Disease.

Kristy Patterson's interview


How did all start?

Constant pain. Be honest I thought I was dying. Extreme pain. Chest pain. Sweats nausea cramps leg cramps muscle weakness. But hurt so bad I would pass out.

Do you already have a diagnosis? How long did it take you to get it?

Yes it started when I was 17. I am 52 now. It took 2 years before an er doctor recognized it and did a simple blood and urine. My life change that night. It was a death sentence then. Still is. But u can live long now.

For what medical specialties have you been treated? What has been the most useful specialty for your?

Everything. Diet. That is the key. You must eat at least 5 times a day but small meals. Exercise. Keep your mental busy.

What has been the most useful thing for you so far?

It's recognizing the signs. Hydration. Not dehydration. Mental as well as physical.

What have been your biggest difficulties?

Stress. That is the biggest trigger for us. Out of it all stress.

How has your social and family environment reacted? Have your social or family relationships changed?

Major. It's a broad ban of anger. I'm divorced single and have no one. I was very hard on my husband of 20 yrs.

What things have you stopped doing?

Red meat. Changed my diet. I do not take meds anymore. I more healthy now than I was. But do what your doctor says. Everyone is different. Very important. Do not change nothing without talking to your doctor. I also well I can't say.

What do you think about the future?

Pain. But I am optimistic. I am the oldest living on the registrar in the USA. That I know off. Now is. Growing up. Being an adult . get off the pity pot.

So far, which years have been the best years in your life? What have you done during them?

Diet change. Active. So much. Depend on me.

What would you like to do if you didn’t have your condition?

There is nothing I can't do. U can do anything. Live to ride ride to b free. Know that yes u have complication. Everyone is different.

If you had to describe your life in a sentence, what would it be?

Just be you.

Finally, what advice would you give to a person in a similar situation?

You only have you. Know your body triggers and don't Hyde. There is other people out there that have it bad too. It's what u make out of it.

Interview Porphyria

Feb 11, 2020

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