IMMUNE  GLOBULIN  COMMUNITY
skip to main content

IG Living Blog
share

Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 20. September 2012

The Journey of Risks

By Rachel French

The last time I did something for the first time was the day I became a mother and learned that sometimes life throws curves at you and things don’t always go according to plan. Within hours of being born, my son Mark was life-flighted to a children’s hospital, and our journal of “risk-taking” began. We spent the next days, weeks and months in and out of hospitals, clinics and laboratories as a wonderful team of specialists tried to puzzle out the “zebra” in their midst.

The greatest risk we ever took was when Mark was 3 months old and diagnosed with probable severe combined immunodeficiency (SCID). He had an extremely complex clinical picture that also included severe anemia. Highly respected immunologists recommended a bone marrow transplant. The outlook was grim: My son had a two-year life expectancy without the procedure and many possible complications with the procedure.

Our local specialists at the children’s hospital closer to our home urged caution and more testing. (I must admit that my first instinct was to keep Mark in isolation at home for the rest of his life and never venture into the germ-laden world again.) My husband and I decided to take a gamble on a young resident’s hunch that it was not SCID, and we risked waiting for additional testing to be done before rushing into a transplant. Thankfully, the tests revealed an improvement in his immune function to the extent transplant was not medically necessary, and Mark’s illness could be managed with intravenous immune globulin (IVIG) and close monitoring by his team of doctors. A firmer diagnosis of common variable immune deficiency was made when Mark was 2 years old, and his anemia stabilized on IVIG therapy.

In the past 10 years, we have had to make many choices that carried inherent risk: Do we put a port in? Do we try home nursing? Do we try antibiotic prophylaxis? Should we follow our immunologist when he moves? Should we try subcutaneous infusions? What about home school or public school? Do we give Mark another day for symptoms to improve or rush him to the pediatrician? We, as do other patients of primary immune deficiency disease (PIDD) children, face these difficult decisions, as well as take risks that other parents take for granted as a rite of childhood - risks such as playing in the McDonald’s Playland, attending a birthday party in February, going swimming in the lake or petting a turtle discovered in the backyard. Unfortunately, there is so little knowledge and awareness of PIDDs that we not only have to take these risks, but we have to try to explain to loved ones and friends that we are not just overprotective; these activities pose a real danger to our children.

Risk is the name of the game when the person you love most has a PIDD. We risk trying and trying again when antibiotics fail (and keep that positive front!). We risk allowing our children “normalcy” with chances to explore and grow. And, most of all, we risk trusting in a future as bright and shiny as it can be - despite the obstacles we have to overcome to get there. These risks are what cause parenting a child with a PIDD to be a journey. We’ve learned not to take anything for granted and instead enjoy the treasure we’ve been given: the joy of loving, protecting, advocating, teaching, rejoicing and, finally, letting our child soar to dreams loftier than any we could have imagined for him.

  more

Comments (1) -

kelli
5:31 PM on Monday, October 01, 2012

This essay made me cry.  I am a 32 year old CVID patient, and was born with the disease as well.  I was not diagnosed until I was 7 years old, however.  I am so glad that your son is stabilized on therapy and what a blessing that the resident was there to help!  I was also diagnosed by a brand-new doctor, on a hunch.  

Add comment

Before submitting your comment, please review the IG Living privacy policy.

If you prefer to submit your comment privately, please email Abbie Cornett ACornett@IGLiving.com

IG Living Blog | Staying Positive with Chronic Illness
IMMUNE  GLOBULIN  COMMUNITY
skip to main content

IG Living Blog
share

Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 8. January 2015

Staying Positive with Chronic Illness

By Abbie Cornett

As a patient advocate and a patient with common variable immunodeficiency (CVID), I am frequently asked by patients who are having difficulty coping with their illness how I cope with mine and how I stay positive. This is always a difficult question for me. Being positive isn’t something just that happens; it is something I have to work on.

So many of the people I speak with are so much sicker than I am now. Since I was diagnosed and started intravenous immune globulin (IVIG) therapy, I am able to work full time and have a great job that accommodates me. So, the first thing I tell patients is that everyone’s journey is different. I can tell them my story and what I do to stay positive, but I stress that everyone has to find their own way.

When I was first diagnosed, I was so happy to have a name for what was wrong with me and that there was a treatment for it, that I didn’t think much beyond that point. It wasn’t until a few months later that the finality of my diagnosis set in. Before, there was always the hope that one day I would be well and that I would be free of doctors, medicine and hospitals. With my diagnosis came the reality that I had a chronic illness — a disease that there was no cure for, only treatment.

Knowing that, my diagnosis seemed more like a curse. I felt limited. I started thinking of all the things I couldn’t do. I worried that I wouldn’t find a job that could accommodate me. I worried I wouldn’t be able to do the things I had dreamed of doing, like traveling the world. I had to schedule travel around my infusions. I started to dread my infusions because of the side effects, and the time spent getting treatment affected time with my children. I began to forget how I felt before I was diagnosed.

Before my diagnosis, when I was sick, all I wanted was to be well so I could raise my children, work and live life. After, I was mad and depressed, because while I could do those things, I couldn’t do them on my terms and not the way other people did them. But, I slowly realized these feeling were part of what it meant to have a chronic illness, and that I had to find a way to deal with them the same way I had to deal with my disease. I learned that while life may not have turned out exactly the way I wanted, I could still have a good life. Part of this meant accepting that I wasn’t Wonder Woman. There would be good days and bad; I found little ways to adapt.

One of the hardest things for me was being afraid I wouldn’t be able to be the kind of mother I want to be - that my children would think of me as sick. I worried about not having the energy they needed. My husband is the one who suggested that instead of being down because I was too tired and sick to cook the day of my infusion, that we make it movie and takeout night. This has been a great way for my kids to accept that I am not feeling well and still enjoy our time together.

My dreams of travel have not changed, but I have had to accept that there are certain places I will probably never go, and when I do go, it can’t be for long periods. But this doesn’t mean I am homebound. I have found that with planning, most places are still possible to visit. And, since my diagnosis, I have traveled to many places, including outside of the United States.

The way I stay positive is to remind myself daily how fortunate I am. I am able to work full time, raise my family and do most of the things in life I want to. Everyone has to find what makes them feel positive in life. For me, finding happiness has been a process of learning to accept my limitations and to still find a way to follow my dreams.

How do you stay positive with your chronic illness?

  more

Add comment

Before submitting your comment, please review the IG Living privacy policy.

If you prefer to submit your comment privately, please email Abbie Cornett ACornett@IGLiving.com