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10 Things to Know If You're Newly Diagnosed With PI

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Being diagnosed with a disease like primary immune deficiency can be overwhelming. Most often patients are still not given any printed materials and do not have access to a support group, though the Immune Deficiency Foundation has been fighting to change that with their support groups and numerous publications.

When I was diagnosed nearly 20 years ago I was only told four things: that my doctor was not sure how I would respond to treatment, what my treatment options were (at that time only IVIG or IMIG; since 2010 I have been using SCIG), that I should avoid anyone who could possibly have anything contagious and that I should get yearly flu shots and keep up to date on all vaccines.

At the time I had been too sick for too long to worry much or even have many questions. My years as a volunteer and later as a patient advocate have showed me that isn’t always the case. Many patients have lots of concerns. Here are some of the tips on living with PI I most often share.

1. Don’t expect to have all the answers. New patients often ask me lots of questions, and my answer is often that I don’t know. Truth is, much of modern medicine still does not know about primary immune deficiencies. Also, don’t expect to know the exact name of your genetic defect or mutation unless you undergo further testing such as genome sequencing. Even genome sequencing doesn’t always deliver all the answers for every patient. To coexist with this disease you will probably learn to live with some degree of uncertainty, but you can ask all the questions you want to the immune deficiency foundation and they will do their best to answer.

2. Keep an open mind about treatment. I didn’t give starting immune globulin very much thought. I had been so sick for so long I was just glad there was something to help me. I have few issues with treatment. I can’t say for sure if my state of mind helped or not, but being stressed and miserable just can’t be good for you. My best advice is to try to relax and just see how you respond.

medication and supplies

3. Bring a friend or family member with you to your doctor visits. When you are first diagnosed there is so much to take in. A friend or family member can help you recall what your doctor said. It’s also good to have family and friends on board and on your side while fighting this disease so having them at your doctor visits helps train them to be helpful to you during this journey.

4. If you are not doing well, seek out top doctors. The Immune Deficiency Foundation can help you find doctors who treat PI closest to you.

5. Reach out to other patients but understand we are all different and may not share the same outcomes. It can be both scary and depressing when you see others with your condition struggling or even passing away. We are all like snowflakes – no two alike. We react differently to treatment and we won’t all face every issue. What I love most about my PI family is the unconditional support. Take in all the new friends and support, but try not to become fearful of having every issue each patient faces.

6. Adjust your expectations. IG is a treatment, not a cure, so you probably can’t expect to feel perfectly healthy – just healthier if treatment is working. Remember this is a chronic condition. Immune globulin should reduce your infections and the severity of them at the right dose but it may not stop or slow everything about the disease itself.

7. Tell your doctors and nurses about all your side effects. Many infusion issues can be remedied. If you’re getting reactions, slowing the infusion rate or taking pre-meds may help. When I switched to a new medication in 2010, at first I was having lots of headaches until my doctor adjusted my dose. On a slightly higher dose of IG I am getting much fewer headaches!

8. Give yourself something to look forward to on infusion day. Your favorite meal, a best friend, a good book or movie can go a long way in keeping your spirits high.

9. Be grateful. If you are receiving immune globulin, plasma donors are helping you. People who feel gratitude are much happier than those who feel sorry for themselves. It is terrible to be sick, but is also heartwarming that total strangers would go out of their way to help you stay healthy.

woman in a zebra print dress holding a stuffed zebra and medical supplies

10. Life goes on. If all goes well you will eventually get used to your diagnosis and resume your life the best you can. It’s the only life you will get so make it count! Illness teaches us how fragile life is and can put into focus what really matters to us the most. Do whatever it is you feel most called to do.

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Originally published: January 9, 2017
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