Thursday, January 21, 2016

Frosty Trip

Yesterday it was frosty and foggy.  It warmed up to 19F or –7C eh!  A warm front moved in.  There were patches of freezing rain. 
Wonderful time to have to drive to a big city for a Doctors appointment.  Especially an early morning appointment.
Frosty Wires
The highline wires lead the frosty way.
Crappy Gray weather
The roads were actually pretty decent and sanding/salt trucks were out.  We made our appointment in plenty of time and were called in earlier than our appointment…no waiting.   The new Pulmonary Dr K.  is going to be alright I think, he explained some test results and prescribed two doses of antibiotics to be kept on hand.    The liver scan showed some liver damage because of the Alpha 1 Antitrypsin Deficiency…not a surprise.  We got to see the MRI of Far Guy’s lungs…and where his port was placed.

He answered all our questions about Far Guys port.  We have been having problems with the port.  We were taught at the infusion center to check for a blood return before giving the infusion.  Lately blood returns have been few and far between.  Two weeks ago when I was gone Far Guy went to the infusion center where the gals checked his port for a blood return and couldn’t get one either, he received a medication called Cathflow.   It is a potent blood thinner…it usually takes a half hour to break through a clot or fibers at the inside end of a part…well it took an hour to finally get a blood return.  Since then we have not had a blood return….even though Far Guy is well hydrated (think floating away)and he does everything but stand on his head.  Dr.K said “What is the intention of your port?  To check for blood flow or to administer medication?   If it is to administer medications and they still flow through the port then everything is okay. IF at some point we cannot get anything to flow through the port then we will get a Radiologist to feed a wire through and clean it out.”  Alrighty then…we are supposed to keep keeping on. 

Far Guy can do his infusion from start to finish, both with me sitting across the room         ( when I was ill and germy) and then when I was taking care of Jen he did it all by himself and Facetimed me to show me that it was going okay other than he got no blood return. 
The infusions are given weekly on Thursdays…the protein only lasts 5.9 days in your system.  He had more lung function tests yesterday, he is holding at 21% function.   That is good news…not that the 21% is anything to celebrate but the fact that it is holding means that the infusions are doing what they are supposed to do = protect the lungs.

We were both really discouraged yesterday when the CDC came out with the blanket statement about antibiotics and how they are over used.  To a person with undiagnosed Alpha 1 and bronchitis…without antibiotics to fight the infection your lungs will be destroyed bit by bit…part by part…that is what happened to Far Guy…the medical community failed him. If he had been properly diagnosed even three months before he was it would have made a difference…a diagnosis a year sooner and perhaps he wouldn’t be on oxygen.

Bottom line, if you know someone with Emphysema, Asthma or COPD…they should be tested for Alpha 1…it is a free test…and can save someones life.

Far Guy’s funny for the day was as we were driving away…his Oxygen Bottle slid around in the back seat, making the oxygen tubing pull at his nose…he said bad word a couple of times right out loud and ripped the nasal cannula off.  I told him to calm down…he said no one realizes that where the hose goes so does the nose.
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23 comments:

  1. Oh dear, be careful on those roads! Hope everything sorts itself out, sounds like a stressful time!

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  2. Sure is pretty.... pretty cold eh:) You and Far Guy are doing so well I would be angry I think. Keep up the good work and I hope your germy thing is gone now. Take care and soon it will be spring and things will feel better. Hugs to you and Far Guy. B

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  3. You both are going through so much with all of this it must be tiring and so stressful for you both . Yes I heard on our news this about the antibiotics . Lovely photos , glad you both made it there and back safety ! I hope you are feeling better to and got rid of that nasty cold ! Thanks for sharing , Have a good day .

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  4. I think about both of you often, glad you are both so tough. Chronic illness is no fun, gets really old after awhile to always have to be aware of it.

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  5. I am happy you finally got more answers from a knowledgable doctor. Seems the health care system is failing a lot of people these days and it will only get worse. Yes, antibiotics have been misused but for some folks they are a life saver - Far Guy is an example. Sure wish Far guy had been properly diagnosed years ago so he wouldn't be suffering today. Take care of yourselves and try to stay warm and healthy. Big Hug

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  6. I am just glad that he's hold steady and not deteriorating further. I feel like I know him after all these years. He's also got quite a sense of humor for an old guy. :-)

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    1. I agree - he'd be on my list of folks I'd love to have lunch with. :)

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  7. the health concerns sound awful, and driving to the big city in icy conditions just adds to the stress. i'm so sorry. thank you for the comment on my blog--yes, i did graduate! i will post something soon, over the weekend, I hope. Hang in there, dear.

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  8. The doctor sounds rather pragmatic about the port being for getting things "in" and not "out."

    :( I'm sorry the issue with Far Guy was discovered so late - if "they" had known a couple years earlier - would they have had any sort of treatment available?

    Stay warm, stay safe, and stay well.

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    1. Yes they have been using the protein by infusion to treat people since the 1970's So it would have made a difference :(

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  9. I like that you include us Kanucks with the temps in Celsius eh☃. I'm getting tired of al the grey icy days here too. Hope the Far Guys nose'n'hose are still working😜

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  10. Thanks for the update on Far Guy's health challenges. You both are incredibly brave and it isn't fair that you have to be. So glad Far Guy is holding his own.

    Shirley H.

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  11. Glad you arrived safely.

    Den's appointment was cancelled today due to weather!

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  12. Love Far Guy's sense of humour. It is a wonderful thing to have, and can help in so many ways. Just concentrate on the 'what you have's' and maintaining it/them. Thinking about the 'if only's' just gets frustrating and depressing. All the best to you guys, you are doing a great job. Glad the roads cooperated for your trip.

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  13. Far Guy is having a far harder time being led around by the nose then he should But
    if it was you in the leading of said nose it would be much worse.
    Hang in there you are both doing a great job.

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  14. A sense of humor always helps! I'm not missing those icy Minnesota roads this winter. I'm glad you had a safe trip, and that FG's lungs are holding their own on the new meds. Stay safe and warm.

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  15. Why is it for out of town medical appts. the weather has to be bad. I'm Far guy got a good report and that you like the new doc.

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  16. My SO is 51 and has COPD, I am going to ask his Dr. about this!

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    1. Absolutely or visit the Alpha 1 Website to down load an application for testing, it is free, easy and confidential! Most Doctors don't know about Alpha 1 as it is a Rare Disease, sometimes they leave the room to look it up! :)

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  17. I think it's really important that you are spreading your message about proper diagnosis for lung diseases. Hopefully others will be spared Far Guy's situation.
    I admire your strength, both of you, in dealing with these serious health issues. I also like that new Doc. "What is the purpose" is the correct question!.

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  18. So much to think about. Heading into a day full like that, I'm not sure I'd want to crawl out of bed with weather like that... Glad at least the roads were clear, and that you are okay with the new doc.

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  19. Sorry that Far Guy's condition wasn't diagnosed earlier. I do like Dr. K's assessment that if the port is delivering the medicine, then it's working okay. One less thing to worry about every day! Hope the sun begins to shine soon!

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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