Well, I think I am finally recovered from my son's surgery - ha ha. I know that sounds strange (maybe not to you guys), but the two-day ordeal at the hospital took a lot out of me. This week has been a lost cause - I've been wiped out and using all my limited energy to take care of him during the day. I felt good on Wednesday and thought I'd finally gotten past it, but then I woke up Thursday feeling awful - very achy and sore throat. I had used my newfound energy on Wednesday to go to the grocery store AND to my library's monthly noon book discussion (I know, I know - I am living a wild life here!) Guess that was too much for me. So, once we got back from the doctor's office yesterday, I rested the rest of the day. I've been taking long naps in the afternoon. Hopefully, I'm past the worst of it now.
As for my son, he is doing great, and we are amazed - and grateful! The difference between this knee surgery and his first two is like night and day, and the odd thing is that this was the more extensive one. The surgeon actually had to make a full incision; the first two surgeries were just arthroscopic. The first surgeries caused a severe CFS crash each time, lasting 3-4 weeks. His CFS is usually mild and completely controlled by Florinef, so we were surprised when he was so totally wiped out for a month afterward.
So, why is this time different? I think I've figured it out.
All three times, we printed this great article on surgery and CFS and handed it out to the surgeon and anesthesiologist, and all the doctors were very accommodating each time. They were familiar with various types of Orthostatic Intolerance (OI), they chose anesthesia that was better for someone with OI, and they made sure to give him a saline IV.
This time, however, his surgery was delayed for 6 hours and he ended up having to spend the night in the hospital. This inconvenience turned out to be the best thing that could happen! They kept him on a saline IV all night long, and I'm pretty certain that is what made the difference! Our older son used to get weekly saline IV's to treat OI, so we know what a dramatic effect they can have on someone with OI. The anesthesiologist also explained to me this time that ALL types of anesthesia have some vaso-dilating properties (very bad for someone with OI as dilating the blood vessels makes it even harder for us to circulate enough blood to brain and heart), so they chose the least vaso-dilating but couldn't avoid it altogether. I suspect that the extra saline IVs not only helped to increase his blood volume but also helped to counteract the vaso-dilating effects of the anesthesia.
So, after the first two surgeries, he was totally wiped out for a full month - just lay on the couch, watched TV, and didn't have the energy to get up even when his knee pain began to subside (you know, the basic CFS crash). This time, by the second day post-op, he was sitting up, talking animatedly, and playing video games. He even had a friend over just a few days post-op to play games with him! Even better, because he isn't crashed, his pain is much better, despite the fact that it was more extensive surgery and should be hurting more than before. He's already started to reduce the dose on his pain killers; after the first two surgeries, he stayed on the maximum dose for two full weeks.
All of this is just amazing to us...and wonderful! Lessons learned: not only to share important information with the doctors ahead of time, but request extra saline IV's (at least 2 liters) - the lost sleep due to the overnight in the hospital was more than made up for by the extra saline. Now I just need to recover - maybe next time we'll ask for a saline IV for the patient's mom, too!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
4 comments:
So glad he's doing so well. And What a discovery!
Hope you get over your crash soon too!
I was just started on Florinef two days ago and was so encouraged when I read how effective it has been for your son! Thanks for the encouragement :)
That's great news, Rebecca!
A few helpful tips to help the Florinef work most effectively:
1 - you need LOTS of extra salt and fluids - the Florinef helps your body hold onto salt and fluids so it can only work if there are plenty there. Just extra salt on food isn't usually enough - try Thermotabs (salt tablets) and salty drinks, like gatorade or V-8 juice.
2 - Florinef can deplete potassium, so DR. Rowe recommends anyone on Florinef also take potassium supplements, at a rate of 10 meq for every 0.1 mg Florinef (they are available by prescription).
3 - Most people need to go up slowly on the Florinef dose - start with a half pill the first week, then a full pill the second week, etc. You may not see any effect until you get up to a higher dose.
4 - All commercially available Florinef contains lactose as a filler, so if you are lactose-intolerant, you should order Florinef from a compounding pharmacy.
5 - Though Florinef often brings dramatic improvement for kids and teens, it is generally less effective for adults...though some adults have had good results with it.
Good luck! I hope it helps you!
Sue
Sue thank you so much for your tips! I just read them today but I am so grateful for them. Already I am feeling less dizzy so I am grateful I fall into the young adult category at 22 still :). My dr also put me on potassium. Good to hear that is recommended by others as well!
Thank you again. I so appreciate your reply.
Xo
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