Okay.
So yesterday (2/20) Jon finally saw the internist at Hershey. I wouldn’t mind him seeing this man as his primary care doctor...
First, Jon had labs drawn here in York on Friday to check his Imipramine levels, Vitamin D, and Vitamin B12 levels. So I had him call his PCP to get those results to take with us.
Not great news on 2 out of 3.
Imipramine = should be 100 - 200. He was 194. Praise God he’s not in the 500’s toxic range anymore! GOOD!
Vitamin D = should be 50 - 70. He was 14. He is now 8. NOT GOOD.
Vitamin B12 = should be 1,000 (per his neurologist). He was at 179. He is now 122. NOT GOOD.
Our appointment was at 3:20 and we were to arrive at 3:00 for check-in, intake, etc. We tried to take a shortcut ... and didn’t get there until right at 3:20. Oops! They were fine though, and he was back in a room by 3:30. The nurse was only in with him maybe five minutes, and just a few minutes later a resident came in. She was great too! I’m not sure how long she was in with us, but it was a while. Then she went and got Dr. Simons and they were both in with us. When the appointment was over, everyone else had already gone home - it was around 5:45. He was very thorough and in no hurry to rush us out the door. Praise God, because Jon’s case needs focus and thought for as many details as there are.
After bringing him up to speed on EVERYTHING...we started discussing.
First let me explain for those of you who may not understand Jon’s “falls”. Imagine the feeling of when someone comes up behind you and knocks your knees out from behind. Well, his legs do this kind of “jerk” motion and he loses feeling and down he goes - all within a matter of a split second, with no warning. He then will lie there until his legs regain some feeling in them (like they were asleep), and eventually back on his feet again.
Dr. Simons believes this is what is called a “Myoclonic Jerk”. He says this is caused by two things.
First, the narcotic he is on for his pain. He said how medicine has changed so much, and that they are learning things now about narcotics that he didn’t learn about when he was in med school many years ago, and they have to learn how these things are evolving.
Secondly, he believes he has “Serotonin Syndrome” caused by the Imipramine and narcotic together causing his body to produce too much serotonin and remain in his brain (also causing the memory problems, and the delirium he had after his concussions).
The course of action to reverse both of these causes is to take him off the Imipramine and ANY narcotics. Now Jon has not been narcotic free for 8 years. This is an overwhelming thought, but he is willing to do anything it takes. We’re taking one step at a time. He will decrease the two medications over the course of at least 2 months (not sure how long they will take to decrease the narcotic but he should be off the Imipramine within a month) until he is off them completely. He is still on a few other pain medications that are not narcotics. We’ll see how his body functions at that point and go from there. BUT, once those two medications are out of his system, we should see improvement. Since Jon’s PCP was NOT on board with taking him off narcotics completely, Dr. Simons will be sending a letter to him stating what needs to happen and why he needs to do this.
HOWEVER...
The Vitamin B12 & D deficiencies are still an increasing problem. No matter what we’re doing (including B12 injections, taking bariatric special vitamins PLUS additional supplements) his numbers continue to drop. This can also be adding to the jerking and muscle weakness.
Dr. Simons said he was referring Jon to an Endocrinologist. I informed him he had seen one here in York in December, and pulled the physician notes from my file to show him. He was dissatisfied with her lack of thoroughness (my words), so he said you need to see someone here at Hershey. So, like I said, everyone was gone when our appointment was over. This morning we received a call he has an appointment with Endo @ Hershey on March 28th. Dr. Simons needs them to figure out WHY he is not absorbing his vitamins, and figure out how to get them in him. Until then, he continues to take what he has.
So, we left there with a plan. But it takes time.
I’ll be honest, I left there with mixed emotions.
Happy that we have a doctor who cares and is working for us, not on his own agenda. Happy that he has hope for healing for Jon. We don’t know how complete, as he still has fibromyalgia and chronic pain, but to be able to walk, drive, and function again.
Angry. Mostly at his PCP. I know being a doctor is hard. I know that medicine changes and grows. I KNOW there’s a lot. But if you don’t know what you’re doing -- if you don’t know how to manage a medication (or three), then DON’T. Refer your patient to someone who can. Don’t make a 31 year old man live a year of his life in a wheelchair debilitated because all you know to do is add more drugs. It just seemed so effortless for Dr. Simons to point out these problems. Like a “duh” kind of moment. Yet the PCP didn’t know anything about it. So infuriating. I gotta stop talking about that part.
So we received some frustrating news (that this could have been addressed a long time ago), some disappointing news (that his vitamins are decreasing), and some hopeful news - we know what some problems are and how to treat them!!!
So please continue to pray for us. Stress is high. It’s easy to say words out of anger, sleep deprivation, anxiety, and just plain stress. I’m doing the best I can to work when I can, but this past week I realized I just can’t keep doing the amount of hours I was doing before. My employer is fine with that - I take what I want, it’s just learning to get by with less pay ... for now. But I was burning the candle at both ends to try to maintain everything the “way it was”, and I just can’t.
So we continue to take one day at a time. And now we wait. Wait for the appointment at Endo, and wait for the meds to decrease and leave his body to heal.
Thank you so much to everyone who has brought us meals, offered to watch the kids, and just given me a hug and encouraging word. Remember, Jon is here too. I know men don’t like mushy gushy hugs and I love you’s, but a phone call, stop by to sit and talk, watch a movie, watch sports or whatever men do! He needs encouragement too.
This week =
Nevaeh sees the nutritionist tonight @ 5:00. We’re hoping to get some insight on how to keep her from becoming too overweight. We care immensely about her and her health, and she’s not at a good weight right now, so we need to do what we can to teach her and help her young.
Friday morning Jon has his stress test @ York Hospital early in the morning (Kent is taking him).
So those are the upcoming appointments this week and please continue to pray!!!
