Quality of life. What an interesting phrase. It’s as if you could put a number to it. Like you could add up all these different factors and get a score and that would tell you just what quality your life is. I work very closely with a wonderful endocrinologist who is trying very hard to improve my quality of life after going through the major ordeal of carrying and delivering twins and being a panhypopituitarian. These past two years haven’t been a complete breeze for me, but I am very thankful to be where I am, as in physically functional. I’ve struggled with migraines from the estrogen replacement therapy I require, wildly-fluctuating water retention, and, gosh, thirty extra pounds that just don’t seem to want to go away. With the twin pregnancy I gained a whopping sixty pounds! Thirty of it fell off within ten days of delivery. The rest of it seems content to stay where it is despite my best efforts to shed it. Dr. Davis, my amazing endocrinologist, is working and researching all manner of things to determine what’s going on. The next step is I’m going to undergo some metabolic testing. Sounds fun. The approach to treating a PHP is usually to replace the hormones that are required to survive, clap the patient on the back, and say, “At least you lived.” Dr. Davis is not that kind of doctor, thankfully, and she’s examining what other things I can do to make me just a bit closer to normal.
I never really thought that my quality of life was below average or even that my quality of life was closely tied to my physical state. Unbeknownst to me, people with panhypopituitarism have a poor quality of life. I keep researching online to get a better idea of what that means, like how is my life not as enjoyable as others, but I just keep getting that phrase over and over again. “Poor quality of life“ “Quality of life significantly reduced” I also found that many people report psychological problems. I’m not touching that with a ten foot pole. One study showed an 87% increased risk of death in PHPs. Now, I figure we’re all at 100% risk of death, so I’m not worrying about that one. When I look at it one way, I see the losses. I lost my peripheral vision due to my brain swelling post-operatively; I lost my sense of smell because weird stuff happens when you poke around in the brain; I lost a carefree childhood; I lost the chance to live unencumbered because of a dependency on multiple medications multiple times a day; I lost my ability to reproduce naturally; I lost the opportunity to nurse my babies; I lost the sense of commonality with the human race, forever separated by my deficiencies. I guess if you add up all of those factors then my quality of life score would be pretty low. But that’s just not how I feel. I gained a husband who is my best friend; I gained two daughters who are more beautiful and precious than I ever dreamed; I gained a tenderness for the pain of others; I gained an insight into the delicacy and preciousness of life; I gained an understanding that nothing is written in stone, for good or bad; I have two good arms that hold both of my girls at the same time; I have two strong legs that chase my girls around the house; I have two eyes that see my girls’ smiling faces. If you add up those factors, I think my score is off the charts. Also, I never had acne as a teenager and have very little body hair, so I’m ahead of the game in some ways.
Yeah, I just don’t know how you measure the quality of a person’s life. I know that I laugh a lot, get lots of hugs and kisses, feel love welling up in my heart to the point that I think I’ll explode, and meet each day excited by what new challenges it may hold. With two year old twins, those challenges are many, varied, and unexpected! I’m very thankful to have a doctor who works so hard with me to fight against the odds. Together, who knows what we’ll accomplish?