Things are improving…

I try to be thankful for any positive changes.  Sometimes I almost forget that but I try to remember each night when I say my prayers, to say, “thank you,” for all the good things that happened that day, even if the good thing is that nothing bad happened.

Although Lynn has not been feeling well since this week’s full moon made him feel all achy, we’ve been seeing improvements.

First off, he’s been getting hot and hasn’t had to wear extra layers as much.  We suspected the iron he was taking was helping him and sure enough, we got his lab work back this week.  His hemoglobin had risen from 8 to 12 in just one month!  That’s awesome!  He’s still low but low normal now.  His iron levels are still too low (he’s 33 and normal is 30-400) but he’s now at least in the range.  He’s been so bone-chilling cold for months now that this is great.  The other good point about this is that if he get’s his hemoglobin stabilized, they might do another treatment of plasmapheresis to see if he can get even more improvement.  That wouldn’t be till November or December but that’s a good possibility.

Second, he saw his pulmonologist and got a good report.  We were a little worried because he’s not using his Hayek as much because he now sits up all night to sleep (my third good

change).  Remember, I wasn’t getting any sleep at night?  Well he now sits up in his wheelchair all night attached to his peddler exerciser so that if he gets stiff, he just starts the peddler going again. He’s also careful not to drink very much just before bedtime. That means that now I only get up once a night to cath him!  Which means I sometimes get up to four hours of sleep in a row!  I’m a much happier camper.  Anyway, since he doesn’t lie down, he can’t use the Hayek so we were a bit concerned about what that might mean for his lungs.  His doctor said that as long as he’s sitting up, gravity doesn’t affect his diaphragm so it’s easier for the lungs to expand anyway.  Also, he’s not bothered by sleep apnea when he sits up probably because his tongue doesn’t fall to the back of his throat.  So that’s all good.

He has also started promoting his book through book clubs and has gotten some who want to review it in their club.  He’s sending out letters himself and researching places to contact.  Previously he has always had to do that with either myself helping him or one of our friends.  He’s sent out about 65 emails and so far gotten five positive responses which statistically is very good. The positive responses have been good for his morale and the typing has been good exercise for his fingers.

So we’ve had much to be thankful for this past week or so.  We still have our challenges.  Ragweed is out and making him stuffy and congested.  That’s no fun.  He can’t find the motor he wants for the leg lifting device he wants to make so he can sleep in the bed at night.  My son called to say he might have to move back home because his girlfriend’s family might be evicted in October (they are two months late in their house payment and have already gotten an eviction notice…how cruel).  He stays there so if they lose the house, he will come home till they all find a place to move into later.  Our lawn tractor is broken so we can’t mow but that’s no biggie…it’s mainly the back yard that grows anyway.  The arthritis in my thumb joints and wrists have been really bothering me a lot.
So even though we have new and ongoing challenges we face every day, we have much more to feel blessed about than we had last month– so we’re to the good.  I hope you are as well.

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I am so excited.  Lynn was able to type using both hands yesterday!  He hasn’t been able to do that in months. He also was testing out whether he could hold a fishing rod and he was not only able to hold it but to reel it as well.  He hasn’t been able to fish, which he dearly loves to do, in a couple of years.  For the first time, we have hope of improvement, and it’s all thanks to plasmapheresis.

Lynn was in the hospital in May with respiratory depression.  A week after his discharge, he noticed a significant decrease in movement and concluded he was having an exacerbation.  Since he got steroids while he was in the hospital trying to improve his breathing, his doctor did not want to do that again so soon.  Instead, he proposed doing a series of plasma treatments called plasmapheresis.  He would have five treatments, and if he noticed improvement; maybe two more.

Plasmapheresis is a process where they put a central line into either your neck or groin and through that point, remove all the blood from your body and run it through a centrifuge that separates the Red blood cells, white blood cells, platelets, and plasma.  You get back the RBC, WBC, and platelets but you get back albumin (liquid protein), saline and other stuff in place of the plasma. Removing the plasma reduces the inflammation produced by the antibodies in the nerve.  

Plasmapheresis is done every other day so that the body has time to pull more antibodies out of the tissues to be removed. Lynn saw improvement the next morning after the very first treatment.  Each time he got a little more function back.  He was tired but felt pretty good for treatments 1-5.  Treatments 6 and seven hit him hard.  His hemoglobin had dropped so low that he felt pretty bad. 

It’s taken about two weeks to get him back to normal now that he’s been home, but he’s doing awesome!  His doctor said he might continue to improve for a few weeks after discharge, and that seems to be the case.

So if any of you are like Lynn and steroids don’t help but make you a crazy zombie who feels like a Mack truck ran you down, then ask your doctor about plasmapheresis as an option.  It doesn’t work for everyone, and it’s not an option if you have heart problems, but if it does work, it’s fantastic.  Well worth trying.

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