Saturday, November 14, 2015

Second Snow, Alpha1 and TN

Yes it snowed, but it mostly melted.

Second Snow

Chance and the snow along the edge of the woods.

I didn’t even move the snow shovel to the front door yet.  My sister in law has hers all ready but she lives further north than me!

Alpha 1 Update:

Far Guy has a new Pulmonary Doctor, his last one went into Sleep Medicine so we were without a Doc for a bit.  The new one is from Poland, he speaks English quite well and is easy to understand. (He went to Medical School in Iowa) I think he will be okay, Far Guy got a Kenalog Injection..it seems to help with his shortness of breath. We now have antibiotic and steroids on hand in the event that Far Guy gets sick …we are to begin the medications immediately…the instructions were IF AFTER FIVE DAYS HE IS NOT BETTER HE NEEDS TO BE IN THE HOSPITAL.  I like that I have a hard and fast rule to follow.

The every Thursday Infusions are going well for the most part.  They are not as scary as they first were…Far Guy is working on getting the needle sticks down to one good one…he has done four sticks and two sticks…so he is improving.  I made a step by step list of how things are done so he can refer back to it if need be.  Part of the problem is that his port moves around in his chest a bit…so you have to make sure you anchor it.  He had Lynn at the infusion center check it out and she agrees..the port moves.  The infusions always tire him out.  We stick pretty close to home Thursdays and Fridays…only going for a short ride with the dog.

900+ people a year have to give plasma so that this treatment can continue for just one individual.

Alpha 1

I have been in contact with my cousin Kurt who is involved in Medical Research. I also mentioned this observation to the new Pulmonary Dr as his wife is a Neurologist.

Since beginning the infusions with the Aralast for the Alpha 1 Antitrypsin Deficiency the Trigeminal Neuralgia pain is much less.  Is there a connection?  Our regular Neurologist says  “No they are not related.”  I am not so sure…how many patients are there out there that have both of these rare disorders?  1 out of 15,000 people get Trigeminal Neuralgia and 1 out of 5,000 people have Alpha 1 Antitrypsin Deficiency.

What are the odds that one person would get two rare disorders?  What are the odds that the treatment for one of the rare disorders would make a difference in the other?

I don’t begin to understand all this…but perhaps it will benefit someone else someday.

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19 comments:

  1. Pleased to read that you like the new pulmonary dr. That is interesting about the infusions making the TN pain less. Keeping you both in our prayers. Give Chance a hug from me. xo

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  2. Hi:
    Thank you for the updateoln the infusions. I have been wondering how that is going. I hope that the Alpha 1 etc. problem is not related to Trigeminal Neuralgia, because I have that! So far I don't seem to have unusual lung problems just the occasional head cold and one bout of acute bronchitis. I will keep that in mind however.

    Shirley H.

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  3. As always, I send my greetings and good wishes from this side of the Atlantic. I hope that the snow stays away, and the doctors to their best.

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  4. I have wondered how the infusions are going, and whether they have been helping. Apparently something is working, and I'm so glad to hear that for whatever reason the TN pain is less. Far Guy is one courageous guy, I think. Keeping you both as always in my thoughts. I consider you both to be dear friends. :-)

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  5. Thanks for the update. Glad to hear the treatments are helping.

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  6. Great report and sounds like the new doctor is already doing a good job. So glad you have the steroids and antibiotics. Early treatment makes a huge difference. You all have been proactive in your health. More people need to realize that they need to do this. No one knows you better than you. The doctors need an observant patient as a partner to help the doctor do his best job.
    It is great you mentioned the connection you saw with the drugs to people in the field other than his neurologist. Sure hate FG has both of those but what if that is the key to improving TN symptoms. He would be happy to help others who suffer the same.

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  7. Your last sentence says it all, "perhaps it will benefit someone someday." Sometimes it takes medicine a long time to realize the signifigance of relationship.

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  8. Great news with the new Doc, wonderful.... No white stuff here yet, enjoying a mild weekend, blessings Francine.

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  9. You're very smart and it sounds like the new doctor is on top of things. I always figure the patient and the caregivers really know what's going on and a good doctor will listen to them. For years they kept saying teething in toddlers couldn't cause a fever....well, they're wrong....ask a million mother's out there! Not sure if the doctors have changed their minds but sometimes you have to pick and chose what you will believe and what you won't. It should always be a partnership.

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  10. Like Red says...it takes medicine a long time to understand the relationships. Sigh!

    Linda
    http://coloradofarmlife.wordpress.com

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  11. Sounds like you're going through quite a time. Sending cyber support. X

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  12. That plasma donation number is astounding to think about, isn't it? On the plus side, Over the years have run into a LOT of students at the college who donate as regularly as they are allowed. Far Guy is a Rare Guy!

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  13. It must be reassuring to have the antibiotic and steroids on hand in case you need them and a 'hard and fast rule ' as to when to go to the hospital.
    Glad you didn't get a huge dump of snow ( yet).

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  14. I was catching up--- Those little Christmas trees are so cute, Chance just doesn't need all that stress now, so stay together. Glad things are going well for Far Guy.

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  15. That plasma donation number is quite amazing. Thank goodness there are many good souls out there willing to help out. It always helps to have a doctor you like and trust and without an accent impossible to understand!

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  16. Snow BRRRR... It's Spring here in Tasmania & heading towards Summer. Cold old Winter has well & truly left us now & it's warming up nicely.

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  17. It's amazing what you have learned out of necessity. And the learning continues.

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  18. Well, with all the challenges of this treatment protocol, it's good to know it has the added bonus of making the Trigeminal Neuralgia pain lessened :)

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  19. Most doctors in our culture don't tend to see the interconnectedness in people's health issues or that medications can effect various people quite differently. I'm just glad things are improving. That's marvelous!

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Thanks for stopping by! I appreciate your comments! If you have a question I will try to answer it here. Connie