Tuesday, May 14, 2019

My Son Learns Why It's Critical To Rely On Others

My adult son is 22 and living at home. He will be moving to a neighboring city next month and will go back to college in the fall. He was recently hired at a coffee shop and has been commuting the 90 miles one way about four days a week until he moves. It’s been a big commitment, but he is looking forward to the next phase in his life. I am excited for him.
Last week, he called me during his shift and told me he was having a bleed. It was a significant one in his arm. He had not told his employer about his bleeding disorder, and when they saw his arm they were concerned. He had hit it hard in the stockroom, and I could hear the concern in his voice.   To read the rest of the column click here.

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Tuesday, March 26, 2019

The Comfort of a Port

The unimaginable has happened. My youngest son, Caeleb, had his port removed.
Of course, when someone with a bleeding disorder has a port, it’s usually not forever, so why is it a big deal for my 13-year-old son? This was his seventh port. He has had a port in his body since he was 11 months old. With a nasty inhibitor (that is still active) and poor venous access, a port has been part of his life. A part of our family.
In my home, a port has provided a sense of comfort. My adult son, Julian, had a port for five years starting at the age of 1, and it was a lifesaver. Going on trips was not a problem because infusing had become much easier with a port. It gave my husband and me the freedom that we had not experienced with a hemophilia diagnosis. A port helped me feel like I had some control over this crazy, rare blood disorder. It brought a sense of comfort knowing that I could administer factor quickly.
While Julian never had a single infection or any type of complication with his port, Caeleb experienced every kind of complication possible. That is why he had numerous ports over the years. But despite the problems with port infections, a cracked port, a port that worked its way out of Caeleb’s body, and ports that flipped over, I still had the hope that if I needed to get factor into my son, the port would help me get the job done.
Caeleb has not had a bleed in over four years. During that time, my husband and I were accessing Caeleb’s port daily and infusing. It was great. His quality of life improved, his inhibitor came down, and the factor was helping Caeleb lead a “normal” life.
A year ago, we moved to a new treatment that called for a simple injection rather than an infusion. It has been life-changing. When the hematologist told us it was time to consider removing the port, it almost sounded like an idea to dream about rather than something that would actually happen.
The surgery lasted all of 30 minutes. The port slipped out without a problem, and Caeleb is now port-free. I kept waiting for post-operative bleeding to begin, but it didn’t. My son was cleared to go home on the day of his surgery. The day of his surgery! No morphine needed, just Tylenol post-op.
It’s funny that I still have anxiety running around in my body. The port (aka Jim Bob) is gone forever. If Caeleb has a bleed, my husband or I will need to rely on a peripheral stick. I know this is how many people with hemophilia handle their disorder, but when you have lived with a port for 12 years, there is a strange sense of loss that comes into the picture.
My level of control (like I really had any to begin with) has changed. I never believed our community would be in this place of groundbreaking treatments during my lifetime, yet here we are. My mighty warrior Caeleb is reaping the benefits, and for that, I give great thanks.
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