I am very excited to report that with the help of a wonderful friend and former nurse, I have found a place where I can get plasmapheresis done the way I want it done (no port, fistula or catheter), just UNDER an hour away. Right now I have to travel 300 miles round trip, which, with a 4 1/2 year old, makes 3 hours each way. Plus the treatment, plus a meal on the road.
NOW, we can drop Jacob off at my parents (who will FINALLY be home today from Florida), who actually live on the way to the facility I'll be going to, drive another 12 minutes to the hospital, have my treatment (1 1/2 to 2 hours total) back to get Jacob and home all in about 4 hours. Whoo-Hoo!!! I have been searching for this for years.
There are plenty of facilities who do plasmapheresis, but they all required a port or fistula or catheter. No one would do it just in my arm veins. Well, now they will. OH HAPPY DAY! This is seriously amazing news for me. To cut the physical stress of the 3 hour drive, with Jacob, the 3 hour drive home, the gas money it takes, the money to eat out, and going once every 3 weeks...
Compare that to a four hour trip total, no eating on the road, 1/3 of the gas, Doug wouldn't even have to take a whole day off of work! PLUS, I could get it done every other week, which I'm sure would be more beneficial, with so much less stress. Amazing. This is the best news since I thought I was going into remission from Rituxan. Although we are certainly hoping for a better outcome.
Speaking of...having a hard time today. I was up a lot during the night with Jacob, because first his dog "had the cough-uhs" and so he couldn't sleep. So Doug put Blackie in our room. Then Jacob came in because he couldn't sleep without Blackie. And he was hungry. So here we go, in the middle of the night, downstairs (and only because my insulin pump was about to run out in like 12 minutes, otherwise he would've stayed in bed) gave him a snack, I changed my pump, and when we got back upstairs, Blackie went back in Jacob's room and Jacob was told what would happen if he got up again. (Nothing pretty, let me tell ya).
So because I'm extra tired, and still emotionally recovering from the disappointment of the Rituxan...it's already been a trying day. Still trying to get more help. Talked to a local pastor today who wants to come out and meet with me...but he just had foot surgery, so it will be a couple of weeks. (So if you think of it, say a little prayer for Pastor Chad and quick healing for his foot).
It will be a while before Doug and I can hire someone (which we haven't even talked about because he's been so darn busy, but I have it all worked out)...and Love INC is in the works... it's just that everything takes time. So I'm still pretty much on my own right now, except for my favorite cousins, Kerry and Karen.: ) And a very kind lady from the GAPS program who hasn't been able to come out for a while for one reason or another (all on my end, not hers).
So I definitely still need lots of prayers to make it through, and get done all that I need to: (bills, budget, phone calls to messed up bills and insurance, not to mention raising and homeschooling a child and taking care of 3 dogs). Yup. That's me.
Thanks!
Fighting this disease called Myasthenia Gravis (MG) with a little humor, some good friends, and a lot of help from Above.
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4 comments:
Wow that is wonderful news! Seems like a miracle to me. I understand the stresses that life has but?
kim
Oh, I am so happy. It sounds like the best possible option. I am really glad for you. I hope you are doing better and that you start to feel better after you get some rest. One of my favorite quotes is simply:
"When one door closes another door opens; but we so often look so long and so regretfully upon the closed door, that we do not see the ones which open for us." Alexander Graham Bell
I'm so glad you found a closer hospital to do the pheresis. And it works out really great for Jacob too! I'm sure he's going to love getting to visit with Grandma and Grandpa.
Cheers :-)
- CoconutPalmDesigns
This has got to be easier for all concerned...Especially now that your parents have returned home, I'm sure Jacob will enjoy visiting!
I'm so happy things are turning positive, you were going through such a rough patch.
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