About two weeks ago I was pulling my hair out trying to figure out what step to take next with Jon's healthcare. I feel like we've hit another wall. It's nothing new. We're used to it. But it's always painfully frustrating to get past.
He's been in this condition for 7 months now. Given his history over the last seven years (he first got sick on February 11, '04), there are seasons of good and seasons of not-so-good with how he feels. This has been the longest season of not-so-good since he first was sick. At this point we've tried to come to grips with the fact that this just may be his new 'normal'. Not that we're accepting it and just ignoring it . . . we're still very much looking for the right doctor and treatment and praying every day for healing. However, when you deal with something for so long, you learn to cope. We've finally gotten past the initial 'trauma' of the situation and we're learning how to make life work with the limitations. It still sucks. Jon is still sick. It's still a daily mountain to overcome.
Now, back to that wall. I started thinking, what doctor can we try next? We feel the need to search for a new family physician, as Jon's current one seems to be somewhat "exhausted" with Jon's situation. I'm not saying he doesn't care, but he just isn't motivated, shall we say, to find a solution as much as we need him to be. So, in thinking about the problems he has been having with his Vitamin D levels, I was googling the relation to this and gastric bypass patients. Wow. It was an eye opener. . .and made me think I needed to place a call to his surgeon. So I did. I told them the history since he was last seen, and they got him in the very next day. (coincidence? I think not).
Sadly, that appointment was not as fruitful as I would have hoped. He did a quick check over him, gave him a sheet of vitamins they recommend for bypass patients, ordered some labs, and sent him on his way saying "see you in a year". A year? Really?! Nice.
So fast forward to today, about 2 weeks later. They haven't called with his lab results. One would assume they were within normal range if a doctor didn't call, right? Or maybe yet again we feel like they just don't care about Jon. Why is that? Does he have a black mark on him or something? I mean really...the treatment he receives (or shall I say lack of) just baffles me. ANGERS me. Would these doctors respond the same if this was their family member? Their child? Their spouse? Their parent? I doubt it. I want to scream that at them every time I feel they aren't doing anything (which is pretty much always). Whoa -- off the rant. Back to my point. So tomorrow Jon has an appointment with Hershey Neurology. I have zero expectations of the appointment. I don't mean I don't think anything will happen, I mean I have no clue what the plan is. It's a 'follow up'...or continuing care visit or whatever. But I have no clue what the doctor is thinking or what his next step is. Frustrating. Again. So, I was thinking this morning, you know Hershey is going to want to know those lab results. So I had Jon call the surgeon to get them.
Wow.
So way back in August when the neurologist thought Jon's falling, memory loss, and pain issues could be due to a vitamin deficiency - his Vitamin D was originally 18. I don't remember what the B12 was, but Jon says it was in the 200's.
He was put on 50,000 i.u. pill of Vitamin D per week, PLUS 3,000 i.u. daily. That's 71,000 i.u. of Vit D per week. It was then checked about 8 weeks after he started this regiment, and it was unchanged. Exactly 18 again. So they increased the 50,000 i.u. pill to twice a week, discontinue the daily pills. So 100,000 i.u. of Vitamin D per week. His number today = 14. Say what? Yes, it decreased.
Now to the Vitamin B12. Like I said, I'm unclear what the number was exactly before, but somewhere in the 200's we'll say. He's been taking 1,000 mcg of B12 per day for almost 3 months now. His number today = 178. Yes, also decreased.
So I ask Jon what their solution is. Are you ready?
As far as the Vitamin D - nothing. They have zero solution. Just keep taking the pills. What. the. - I'll bite my tongue on that one.
The B12, he is to increase to two pills a day (total of 2,000 mcg/day), and he will go in for a 'one time' shot of B12 on Friday morning.
I. am. livid. If I could make this computer type words with flames flying out of them, I would. Seriously people? OBVIOUSLY HE HAS AN ABSORPTION PROBLEM. Oh, so let's just pump him full of more pills.
I am angry. Very angry. And sad. I want to cry until I can't cry anymore. No matter how many times I am disappointed and hear frustrating news, every single time it makes me want to cry buckets of tears. I am in so much pain emotionally I don't know where to go with it. I'm tired of it. WHY? What is wrong with healthcare professionals today? Are we really picking all the WRONG ones? If I were a physician, I would take personal pride and self worth and accomplishment in taking on a patient and working my very hardest to find a cure or at least HELP the person live a more fulfilling and satisfying life. Seriously, you can't even comprehend what it's like. These doctors look us in the face and say "I don't know" and send you on your way, pocketing gobs of copays in the meantime. *insert angry face*
So, tomorrow we go to Hershey. I feel physically sick to my stomach. I try SO hard not to get my hopes up or have expectations that are too high, but even with ZERO expectations, it's a hard blow when you have no solution.
So please just continue to pray. I know, you are. And I count every prayer as a blessing, because I know it's what has kept ME going, and kept Jon going, and kept our marriage and family together.
