This past May, my husband and I were in Anchorage for my sprint triathlon. A good friend was in town, and she was going to ride back to Fairbanks with us. As my husband navigated the streets of Anchorage, I bit my tongue and did not instruct him turn by turn as I normally would. Finally, after driving by the coffee shop that our friend had suggested and about to drive by it a 2nd time, I had to speak up. Then we were back in our normal routine of my husband driving and me telling him left or right.
This friend later said that at first, she thought I was a naggy back seat driver but then realized that he is having a hard time with directions. It felt so good to be seen. This is one thing out of many that my husband has lost due to his disorder.
When you tell someone you have a cold; they can sympathize with you since they have had one. If you hear a friend has MS, Alzheimer’s, or cancer, you don’t understand all that it entails but you are familiar with it. You know that life for them is about to get a lot harder. If you tell someone that your husband has panhypopituitarism, they look at you blankly. You attempt to explain that his pituitary does not function and he is missing key hormones. More blank stares.
It is an incredibly lonely disorder. I have found a few support groups but have not found another spouse to connect with. Someone to say, I understand what you are going through because I’m going through it too.
Most think that since he is being treated, he is going to be okay. We are okay for the moment. In fact, we are doing the best we have done in two years. Yet, I know that may change tomorrow. It is a fluid state of being.
Wikipedia has an excellent entry on this disorder though it needs some editing. According to the limited research on hypopituitarism, this is the best prognosis information that Wikipedia can give us.
“Several studies have shown that hypopituitarism is associated with an increased risk of cardiovascular disease and some also an increased risk of death of about 50% to 150% the normal population. It has been difficult to establish which hormone deficiency is responsible for this risk, as almost all patients studied had growth hormone deficiency. [My husband has GH deficiency version of the disorder.] The studies also do not answer the question as to whether the hypopituitarism itself causes the increased mortality, or whether some of the risk is to be attributed to the treatments, some of which (such as sex hormone supplementation) have a recognized adverse effect on cardiovascular risk. [Due to the risks and lack of fertility of taking testosterone, my husband takes a precursor hormone to stimulate his body to produce T. Insurance will not cover this hormone because it is an intramuscular injection. Three times a week.]
The largest study to date followed over a thousand people for eight years; it showed an 87% increased risk of death compared to the normal population. Predictors of higher risk were: female sex [phew, he is male], absence of treatment for sex hormone deficiency [treating for this out of our own wallet], younger age at the time of diagnosis [nope, he was 34], and a diagnosis of craniopharyngioma [Nope! Well, at least not right now.] Apart from cardiovascular disease, this study also showed an increased risk of death from lung disease.
Quality of life may be significantly reduced, even in those people on optimum medical therapy. Many report both physical and psychological problems. It is likely that the commonly used replacement therapies still do not completely mimic the natural hormone levels in the body. Health costs remain about double those of the normal population. [Last year, we spent $6,176 treating this disorder. This year, we are up to $4,617. Before we ring in 2017, we have one more surgery and are adding one new med that is not covered by insurance. If you count in IVF with ICSI that we have to do to have children because of this disorder, add in an additional $28,034 to our tab this year. FYI – We are doubled insured.].”
This blog post is brought to you by an offhand comment that has been rattling around in my head. A good friend has been diagnosed with cancer. My friend asked if they had a GoFundMe account and that she wanted to contribute to it. I was a bit miffed. She had not once in two years offered to help us out. Granted, I also have not asked for help nor do I want it. It is the gesture. I get that no one truly understands what you are going through especially when you have an abstract disorder. Everyone is busy running around and living their lives while you are on the sidelines focusing on surviving. I have several friends that pause and check in with us. They ask how we are doing. That is all I’ve ever wanted through this. The acknowledgment that this is really hard. That they see us.