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Posted on 12. September 2013

Essay Contest Winner! - A Father's Pride

By Benjamin R. Karney

My life turned around and improved when I pierced my daughter’s skin for the first time. She was 5 years old. Due to her immune deficiency, she had received hundreds of needles by that point, always from nurses, and always in hospitals or doctors’ offices. For a dad with no medical background (I never even took high school biology), leaving the responsibility with the professionals felt appropriate. Piercing her skin myself seemed the reverse of everything I had hoped to be as a parent, and I wept the first time I did it.

Since her diagnosis of common variable immune deficiency, we had been driving an hour to the hospital once a month for her intravenous immune globulin (IVIG) infusions. The infusion room nurses were experts, and we loved them, but we were not their only patients. After slogging through traffic, we had to wait for a blood draw, and wait again for the IG to be prepared and the pump to be programmed. Then, after hours of VHS videos, fluorescent lights and vending machine snacks, we stumbled, exhausted, back to our car in time for evening traffic. Those were long days, a monthly interruption that we accepted because we had no other options.

When our immunologist brought up the possibility of shifting to weekly subcutaneous IG (SCIG) infusions that we could administer at home, we were skeptical. Did we want to think about infusions that often? Maybe it was better to keep our daughter’s treatments in the hands of the professionals. Maybe it was better to keep her infusions separate from the rest of our lives.

Continued difficulty with finding a vein settled the question. To avoid installing a port in my daughter, we opted for the SCIG route and found ourselves being trained in our own kitchen by a wise and patient home health nurse. Soon, I was flicking a syringe to get the air bubbles out. Soon, I knew the tricks to getting the last precious drops of IG from the vials (injecting air makes it easier to get the fluid out). Soon, I was programming our own pump, adjusting the speed and monitoring the volume on a device I had previously ignored. Soon, I was doing what I never wanted to do: piercing the skin of my child.

And instead of taking over our lives, SCIG gave us our lives back. Our daughter, now 11, gets her infusions every week, but at whatever hour is convenient for her. She programs her own pump, and carries it with her in a small purse. She does not visit hospitals much - the occasional checkup with her immunologist is all. Instead, she gets infused while doing homework, going shopping or watching a movie. What was once a chore has become routine, even mundane.

The change is profound. Instead of something being done to her, an infusion is now something our daughter does to take care of herself. The difference was never more striking than during the holidays, when a big party was scheduled on an infusion night. Our daughter wore her pump, and halfway through the party stepped away from the kids’ table so I could disconnect it. When I returned to the party after putting it away, I found her back at the kids’ table, surrounded by a ring of girls, all listening open-mouthed to her explanation of her pump and what it does. “Aren’t you scared to get poked?” “Nah, it’s no big deal.” And I wept again for my little girl whose infusions are a part of her life, but not what defines her - something that makes her brave and keeps her healthy, instead of sick.

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Comments (5) -

Linda Carlson
6:05 AM on Friday, September 13, 2013

I saw my neurologist this week and he gave me the very disturbing news that one major Insurance company was getting out of the "prevention" business and would no longer pay their portion of the the preventative two-day IV/IG infusions I receive for my Myasthenia Gravis every three weeks.  Instead they have decided to wait until individuals enter crisis mode and they will pay their usual portion for the ICU stay.  Since I'm on Medicare he's doesn't doubt that they will be soon follow suit.
Based on my history, I can expect to enter crises mode every 10 weeks.  This would mean 4-5 stays in ICU annually which typically last 8 days.  The toll this would take on my body is one thing.  

The question remains, is this a life I want to live going forward?  No, it is not.
Is anyone else hearing anything about this?  Is this really happening

Carol M
10:19 AM on Friday, September 13, 2013

Thank you so much for sharing your wonderful story! I am 53 years old and wasn't diagnosed with CVID until I was 50. I have been having IVIG therapy now for 3 years, every three weeks. I must set aside 2-3 days for the infusion-1 day to infuse and 1-2 days of recovery time. I have been forced to change my insurance carrier so I have been considering also changing to Sub Q.

Your timely story has finalized my decision. I want my life back as well! All the best to your little girl and your family.

Bruce
12:47 PM on Friday, September 13, 2013

I have lived with Bruton Agammaglobulinemia for 58 years. At about 23 I was part of a joint drug trial by Revlon and the University of MIchigan we started the IV/IG program.  At about 23 years old the U of M sent a nurse to my house to train me on how to start my own IV. I did this for about 5 years than I found out that my health care would pay for home therapy. So I ended all the frustration about having to put a needle in my vien every month. At first my health care said they wouldn't cover the nurse's vist but after talking to a supervisor and explaining that I would be saving them money not going to the hospital they agreed. I have been treated at home ever since. So you might want to check into that. As your dauther gets older she may need to recive her medicine more than once a week. My grandson was born with XLA also. My son in law and daughter have started his therapy at 6 months he just turned 1 year old this week. My son in law and daughter are going though the exact same thing your family is. You have to look at it that she will live a normal life with her treatment. The only thing I can tell you is that you never get used to being poked by the needle. I told my daughter that some therapy might be good down the road when her son ask's why me.

Michelle
4:12 PM on Friday, September 13, 2013

I really enjoyed reading your blog.  It brings hope to all that are experiencing what you've gone through.  Thank you for the inspiration!

Linda Thornrose
1:47 PM on Saturday, September 14, 2013

My circumstances are different as I had to retire early because of worsening health problems.  I did try SCIV; however, it caused me to have hives, so I stopped.  I am now 65 and have had IVIG every 28 days for nine years.  I, too, allow about three days due to side effects, mostly headache and fatigue, sometimes increase BP,nausea; though not necessarily all at once.  The headaches are always a given, but some more intense than others.  Until I got on Medicare, I also called my private insurance and made my case about it being safer for me in the home and cheaper for them, as well as not having to miss a day of work.  They okayed it immediately before the phone call was over.  I was blessed to have it until last December when Medicare took over.  It is worth calling them.  All in all, I try to have a grateful attitude that there is a treatment that gives me a semblance of a normal life.  There are so many worse off than me.  I cannot imagine having to see your little children having to deal with it and the huge responsibility as a parent.  God bless all of you.  Oh, one more thing, what pre and post meds do you have with your treatments?  I would appreciate if you could share your successes and failures.

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