Frustrating Day

Thursday is Infusion Day for Far Guy...he needs the infusion once a week to protect his fragile lungs.   After his infusion it was imperative that he see a Dr.  Something was just not right this entire week.

They ran blood tests and did a Cat scan...he has infiltrates in his lungs but not pneumonia... yet.  

FYI a pulmonary infiltrate is a substance denser than air and can be blood, pus or protein.  Until it is investigated further who really knows what is going on?   Is there a plan in place?? Nope the ER Doc gave us no direction...see your Primary Care Dr or Pulmonary Specialist for a follow up.  

They sent him home with yet another course of antibiotics and steroids after a four plus hour wait in the ER.   ( He has had two rounds of antibiotics and steroids in the last month. )

I thought they should give him IV antibiotics and steroids...but what do I know...well probably more than they do about his lung problems. 

Far Guy is discouraged, I am discouraged.  Far Guy feels crummy.  I feel crummy cause he feels crummy. 

One day at a time. 

Far Side

ER Visit

 Far Guy has a really bad COPD exacerbation.  He was evaluated at the ER.  Our niece Stacey was on duty so he got excellent care!  They gave him IV steroids, a nebulizer treatment and fluids.  His blood work and x rays looked reasonably good. He could have stayed in the hospital for observation but he preferred to come back home...even if the night nurse is cranky.  He was started on a course of antibiotics and steroids.  Of course he will do nebulizer treatments often, rest in the recliner or bed and do what ever I say!  His Alpha 1 Antitrypsin Deficiency makes him very prone to breathing problems. 

I hope we do not have to go back to the hospital.  Time will tell. 

A nearby creek where we always look for Marsh Marigolds...they should be blooming soon. 

It rained. 

Far Side

17 years

 My blog is still a teenager.  I have been blogging for 17 years, I began in late December of 2007.  Those real early blogs were on another blogging platform that is now defunct.  However I have those blogs as hard copies and I may revisit a few of them on this blog next Summer...especially the ones with family history.  ( So that is now on my to do list.)

My Grandson Adam asked me ...when do you blog Grandma?  I usually blog in the afternoon or the evening and then set it to auto publish at 3 AM.  If I know I am going to be really busy I will schedule a couple ahead of time.   Yes I could be dead and still blogging...technically! 

Flowers last Summer.  I love primary colors in a pot of flowers. 

We are doing okay Up North, there was a mix up with Far Guy's Infusion, the Doctor even tried to straighten it out....with no luck.  Back home Tiff and Lynn gave him Zemaira at the Infusion Center.  Here he gets Aralast that makes him very short of breath.  The Pharmacy up here says they cannot get Zemaira. Far Guy will contact the Pharmaceutical Company himself.  Far Guy gets infusions every week to protect his lungs, he has a genetic defect...rare disorder called Alpha One Antitrypsin Deficiency. 

I am keeping busy with puzzles, reading, crocheting and petting Sadie while keeping one eye on Far Guy. No improvement in my RA pain...the injections in my back worked about ten days. I was hoping for longer...but thats life. 

I will keep blogging as long as I am able.  I enjoy reading many blogs and connecting with many people all over the world. 

 Thank you for reading!

Far Side

A Good Movie

 Far Guy and I are watching Vikings Valhalla on Netflix at night.  It isn't as funny as Norseman but still entertaining enough for us...it is fairly violent so it is not for the squeamish.  The special effects and wardrobe department did an awesome job on this series and we hope that there is a second season. 

I keep reminding Far Guy that Vikings are his people...as the Vikings bodies naturally developed Alpha 1 Antitrypsin Deficiency because they ate so much fish and would get worms....of course they only lived to be 40 or 50 years old so the effects of Alpha 1 were all positive ...they didn't get worms.  However they did pass their genes on down the line.  Far Guy has both genes, our daughters are carriers and we have one grandson that also carries one gene.   

A few days ago it was rare disease day...since Far Guy is lucky enough to have two rare diseases  (Trigeminal Neuralgia and Alpha One Antitrypsin Deficiency)...I thought I would at least mention it. 

Back to the movies. 

My Niece Stacy sent me this photo...she said "It must have been a good movie!" 

Dad and Mom with four of their Great Grandchildren.  ( I am guessing that the movie was The Yearling)

Far Side

Mosaic Crochet and Infusion Day

 My CAL Winter Wonderland is slow going and will be even slower going because I have some other projects in the works...a couple of Christmas gifts and a try at some mittens. 

I have trees, hearts and a ribbon done, the brown and white is the beginnings of reindeer. 

I dropped Far Guy off for his infusion yesterday and then I went to Hobby Lobby, who doesn't like an hour there!   I may go again next week. 

Far Guy is what is known as a difficult stick...it took four tries to get an IV in him...he was not happy.  His record is seven.  Here they only let the nurses have two tries and then they call a different nurse...he said he could meet lots of nurses that way.  The chair was hard...it made his butt hurt he forgot his puzzle book...it was a rotten morning for him.  But they brought him coffee. 

Far Side

BLVR

 A week ago Far Guy, Jen and I travelled to Minneapolis to the hospital.  Far Guy had been approved for a procedure to improve his breathing.  The procedure is a BLVR Bronchoscopic Lung Volume Reduction.  The procedure could possibly improve his lung function and make him less short of breath. 

The sunroom at the hospital.

The procedure went well and four Spiration Valves were placed in his left lung.  Some people notice an improvement right away...not Far Guy.   Some people notice improvement over several months. 

Far Guy remained in the hospital for four days and then we were allowed to go home. 

Jen and I stayed in a hotel with secure parking and did not go out at night.  Jen flew home on Wednesday...only one visitor was allowed in the hospital for the entire stay...and it had to be the same person.

Far Guy and I arrived home late Thursday afternoon. Tired and glad to be home.

On Friday Far Guy was worse...and we ended up in the ER explaining what the procedure was to a clueless Doctor....his x ray was ok and bloodwork looked good...so the Doctor kicked the can down the road and chalked up the difficulty breathing to "pollen."  The Doctors in Minneapolis never returned the calls the ER Physician made on Far Guy's behalf.

Presently Far Guy is not breathing as well as he was before the procedure but not as bad as he was on Friday.  He does not feel well at all. 

We are taking it one day at a time...we are both tired.  I am keeping a close eye on him. 

Last week was a tough week we hope this week is better.

Nursing care was excellent.

Far Side

Why?

I wonder why...

Why do hospitals and clinics use the metered water system in their bathrooms...wet ...soap up...rinse rinse rinse...that water does not stay on for the full Happy Birthday song that is playing in my head.

Why doesn't someone design a backpack purse with closures /zippers toward your back instead of out there where who knows who can unzip something.

Why are some "computer things" so complicated that it takes weeks or forever and ever to resolve problems..  Case in point...I set up Online Banking a month ago, as a test I paid two bills from it...electricity and the phone bill...Yes the bill was paid...but the money remains in our account.  "The Third Party" that takes care of this computer crap stuff says oh yes those bills were paid...and so do the payees...but the money has never left the account...so is it a bottomless pit of money?  The Credit Union knows there is a glitch someplace..a mystery glitch now over a month old.

Why is the Infusion Center located in between the hospital and the clinic where all germy people go...some idiot must have thought putting immune suppressed people in the germy area would make them more money.  Yes, since Far Guy has had four ports now...and each one has failed, he goes to the Infusion Center where he gets an IV every week for his Alpha-One Antitrypsin Deficiency.  We were both sick and tired of doing infusions at home when his port was not working properly...let the gals in the Infusion Center worry about it...after all they can start IV's.   It is still the pits exposing him to germs... but he likes the gals up there..one is the daughter of my cousin and another nurse is the sister in law of my nephew.  The gals take very good care of him and make him coffee. It takes real special Nurses to work in the Infusion Center...I just wish they were off in a building all their own or had a separate entrance.

We are finally done with appointments this week...we had five appointments this week. It is what we do.

The last of the Lupines.

Far Side

Hopeful

We are hopeful that Far Guy will be considered for a Lung Transplant.  This week he is having many and I mean MANY X-rays and various medical tests.  He has a week full of appointments, sometimes eight hours a day.  Just like a job.  I have a notebook to take notes.

We have results from his urine testing he tests positive for a medication he takes for Trigeminal Neuralgia.  But then the real shocker he tests positive for coffee and chocolate...who knew.  They test you for everything and I mean everything...blood and urine tests do not lie.

His Colonoscopy results are polyps that were removed, not cancerous now but Adenomas are considered pre cancerous... so he has to have another Colonoscopy in three years.  He had the four day prep...no fun but it was all accomplished.  He cannot do a traditional prep because he cannot drink the volume of fluids involved...he just vomits. 

I will try to keep you updated here through the blog on our adventures this week.

Happy Father’s Day to all the Fathers out there.  We took my Dad to lunch one day last week.  

I worked in the yard before it rained.  The squirrels have been having fun with the flowers and a bunny has been by for snacks.

Far Side