Fall Shawl and Unpacking

 I am not a real fan of anything camo.  However I did like the colors of this shawl...they said "Fall" to me. 

As you can see from the photo the colors blend with the woods. 

I finally took the time to take this shawl off the blocking mats. After the photo shoot I tucked it away in the shawl drawer upstairs...I might have a person in mind for this one. 

 I felt a bit better yesterday so I cleaned the bathroom, did some laundry and unpacked the craft suitcase that I have had packed for fifteen months. (There are three suitcases that were packed...crafts, toiletries and clothing.)  So far the craft one is the only one unpacked...I forgot some of the projects that I had in there....I was quite excited with some of the finds! 

Far Guy watched as I unpacked...he thought it was remarkable the stuff I had crammed in there. 

Perhaps I will get the other two suitcases unpacked this week. We will see. It took me days to pack...it will probably take me days to unpack....hope was there when I packed and now hope is lost. 

I have mixed feelings about Far Guy coming off the transplant list.  Happy that we don't have to live in the cities for three months, sad that he won't get new lungs, happy that he is feeling as good as he is.  In the end God is in charge and we have to deal with whatever comes next.

Far Side

Tuesday report

 I know that title sounds funny...but I needed a bit of time to digest Tuesday happenings. 

We left at 4 AM to travel to the University of Minnesota for appointments with Far Guy's Lung Transplant Pulmonologist and for a Heart Catherization and Angiogram that the Transplant Surgeon requested. Far Guy had his last angiogram in June of 2019 that showed one vessel 55-60 % blocked and not bad enough to do anything about. The Transplant Surgeon wanted to see if anything had changed in the past 15 months. 

Our early morning appointments went fine...Far Guy is feeling pretty good...being a hermit agrees with him as he hasn't been ill since January the Doctor thought that was fantastic.  They discussed what his feelings were toward a transplant...we had decided a long time ago that God was in charge.  The Doctor said she could understand and that after the heart procedures we might be encouraged one way or the other.  He would be taken off the list in February when he turns 71 anyway.

The heart cath and angiogram was supposed to begin at 1 PM and it was 2 PM before they took him away.  The nurses said the Doctor would be out in about an hour to talk to me.  Well that time came and went.  Eventually at the two hour mark a very nice young surgeon came to talk with me.  Far Guy was okay he said...the three main vessels that supply the heart...one has tiny areas like bumps, the middle vessel that was 55-60% blocked last time is still the same with no change...however the third vessel was 70 % blocked.  He said Far Guy was apprised of the situation and his Lung Transplant Doctors and Coordinator were brought in on the discussion.  Together they all came to the conclusion that a stent was in Far Guy's best health interests.

It was not a decision made lightly.  The medication you have to take daily to keep the stent open is one that is not allowed before, during or after a lung transplant.  So he is not on the lung transplant list anymore. 

Far Guy is okay with the decision although he is pretty miserable with pain from the procedure.  He is taking it real easy.  One day at a time. 

I have conflicted feelings...happy that he is okay and they have fixed the problem with his heart.  Sad that the journey toward new lungs has ended.  I will unpack the suitcases that have been packed for the last 15 months soon.

One day at a time.

We are both tired.  It was a very long day with four hours drives on each end of the day.

View from the clinic at the University of Minnesota

Far Side

Update On Lung Transplant List

Far Guy is back on the Lung Transplant list as of Tuesday.  He had a long video chat with his Pulmonary Transplant Specialist.   They are starting to do transplants again.  Most likely he will remain on the list until he is 71 which is in 9 months.  Covid 19 is still a concern.  It was a tough decision...once he enters the hospital for transplant he will be alone with no family visitors.  After three or four days when he comes off the ventilator he can use facetime to connect with family.  However the visitation policy may change as time goes on.

So we wait...let go and let God.

I must repack the suitcase...switching out winter clothing for summer and make sure the craft suitcase has some projects!  If and when he gets the call I will take him there and stick around a few days, if our rental is ready I will stay if not I will come back home until it is ready.  We will be gone from home for 3 to 4 months.

Far Guy is stronger than he has been in a long time and has not had a cough since early February.

The Pin Cherries are in bloom.  Food for birds.

I have been working inside the greenhouse trying to get it cleaned up.  Yesterday I was working under a bench...I had to crawl under there to vacuum up some leaves...my head hit a small wasp nest...it went rolling off  like a ball.  Nothing was flying out so I continued on with my work.  Far Guy took care of it...no wasps.  He looked under the rest of the benches as good as he could for more...but none were noticed. Life is just one adventure after another.

Far Side

Grocery and Clinic Adventure

I placed an online order at our preferred grocery store in our little town ( population 4, 021).  The older fellow that delivered my groceries to the vehicle said they were out of many things...I did not ask what.  I waited about five minutes from the time I called to tell them I was at the appropriate spot and the delivery.
I gave him a tip even if he was a grumpy gus.

I consulted my print out.  No eggs, no hamburger, no bread, no english muffins, no co jack cheese, no chicken thighs. 

My other baby brother said that the meat store on Main Street was doing curbside ordering and delivery.  I drove over and sure enough a young man took my order for hamburger and brought it out to me.  While I was waiting an elderly man wanted to talk so I listened...I think he was hard of hearing as he kept walking closer and closer to me...he apparently had not heard of the six foot rule.

We can live without the chicken thighs and I still have bread in the freezer...and flour to bake some should the shortage persist.

We stopped at the grocery store in our tiny town ( population 323 I think that is counting summer residents ) and bought some eggs.  They seemed to have plenty of groceries on their shelves.

Once at home I unpacked everything and used disinfectant Lysol wipes on everything I could.  Fruit was washed even the bananas...I usually wash all fruit but not the bananas.

So we can eat another week possibly two.

Main Street was almost deserted...If you have to shop downtown you will find a parking spot.

Far Guy reports at the Clinic a person greets you at the door and asks  "Where are you going?" Infusion Center  "Do you have an appointment there?"  Yes.  "Have you been out of the country."  No "Do you have a temperature?"  No,  I don't I took it this morning to make sure.   Then he was cleared to go into the building. 

I picked up groceries, went by the drive through at the bank and then I waited at the clinic parking lot for Far Guy's call.  I noticed several people exit the building wearing face masks.

Far Guy used hand sanitizer in the car...and threw his clothing in the washer when we got home.

So much for our day ( 1 1/2 hours) out.

This is day 11 of self isolation for us.  We are doing ok...we wish the sun would shine.

Last evening we got word that The University of Minnesota has shut down the Lung Transplant program until it is safe to do transplants again...no idea when or if.

Sunflower field near Wadena Minnesota a few years ago.

Far Side

Updates and Winners

News...Far Guy finally got the phone call that took him off of hold.  He is once again active on the Lung Transplant list...this time he is listed for two lungs.  It took a whole week for the Thoracic Surgeon to make that determination after he was called away on an emergency during the transplant meeting a week ago.   Far Guy is listed for both lungs because they cannot be certain which lung had the lung fungus...or if it was both.  After transplant one old lung with a fungus could compromise the new lung.   So now we wait again.  It is better than waiting to wait which is what we have been doing the past sixty days.  Far Guy finishes his fungicide medication  on Sunday.

In other news we traveled up north to a VA Clinic so Far Guy could get his last Shingrix shot...he accomplished it all by himself...I spent that time at Hobby Lobby...yes yarn was on sale again.  I will eventually get a Shingrix shot but our local clinic has a shortage of the serum.

In other other news...I have an infection.  Far Guy insisted I go to the Doctor.  As my luck would have it...Dr She Devil was the only Doctor seeing walk in patients at our local clinic.  I almost turned around and left when the Nurse announced who would be seeing me.  Then we waited and waited...I had a little nap with my head against the wall....stress makes me so so sleepy.  Eventually the old bat showed up and diagnosed an infection and said if I get a temperature I am to come back immediately.  For now I have antibiotics and a special cream.  The big old infection is from the cryosurgery I had on November 1...a  wart that was zapped with liquid nitrogen...the wart was behind my knee...Dr She Devil took forever going back through my medical history...she should not have a license to practice in my opinion.  She clicked this and that on her computer...Far Guy rolled his eyes a few times...whilst I just wanted to bolt from the room. Finally we were allowed to leave...Far Guy said I deserve 15 Golden Stars for  my excellent behavior. You can read about my prior history with DR SHE DEVIL here. 

In other other other news...a big old snowstorm is headed our way.  It will most likely be snowing and blowing when you are reading this.  They have named this Winter Storm Ezekiel.  I moved the electric snow shovel to it's spot just outside the front door.

In other other other other news...Winners of the 2019 Christmas Wood carved one of a kind ornament are;

Betsy

Miss Merry

Bonnie

Wendy

Congratulations!  Please contact me by email with your mailing address captainconnie2001atyahoodotcom  I hope to mail packages on Monday !

Far Side

Clinic in "The Cities" Visit

Far Guy's "stuff" was piling up in the cities...he had lots of tests to do...blood tests, a cat scan, breathing tests and a six minute walk.   He saw three of his Doctors and one doing her residency in Infectious Diseases. All four were women Doctors.

Our questions were answered and we even have copies of the Doctor's orders for blood and sputum tests that can be done here at our local clinic.  (Just incase the lab here does not get the Doctor's orders.)

They are still hopeful that they will get him activated again as he has been on hold about 7 weeks now.  This Thursday his Lung Transplant Case  will be reviewed at the Transplant Meeting...where groups of Doctors meet to discuss patients.  If not this Thursday then in about two weeks.

They are all hopeful that once he is back active on the list that a transplant will be a reality.  One Doctor said " Hope I don't see you in six months...I want to see you before then... in the hospital post transplant! "

So we get the winter off and don't have to be back down there again until May unless he gets the transplant OR for some unknown reason they want him to have more tests done.  Is there some small part of him they have not looked at?

We also attended a lung transplant support group meeting.  We have friends there who remember our names.

I took this photo out the window of the clinic...the building at the far left of the photo is the hospital where he will get his transplant.

On the way home we stopped to switch drivers...saw this sign...

Fresh Lutefisk a sure sign that it is nearing Thanksgiving and Christmas.

It was dreary all the while we were gone, foggy and kinda misting a bit.  We left very early on Monday morning and returned home late Tuesday night.  On Monday we did a bit of exploring... found a Cub Foods Store, a Target and a Michaels (where more yarn might have been purchased.)  We stayed in a different Hotel this time...valet parking was $27 for one night...but it was a heated secure garage..and they gave you freshly baked(warmed up) cookies when you checked in....

Far Guy still has three more appointments this week... it is what we do.
Far Side

Normal?

Not sure what normal is besides a setting on a dryer.

Far Guy has daily medication adventures...with Doctors switching meds here and there...and one Doc cannot do it all ...it has to come from the Doc that originally prescribed the med...doesn't help that one Doc is on vacation.  This  Lung Transplant "on hold" is for at least 30 days but that may stretch to 60 or 90 days ...it just depends on what future sputum samples show. One of the U of MN Doctors ordered a med from our mail order pharmacy  $7.00 for 10 pills vs $1.00 or less at our local pharmacy...I know the instructions for ordering meds is confusing but I made sure it says IN HIS CHART  short term meds from local pharmacy Long term meds  90 day supply from Mail Order Pharmacy....obviously someone did not consult the chart.  Idiots...

Far Guy has not started the anti fungal medication it has not arrived yet...I think we are going on the third week this week...talk about a slow frustrating process... days are being wasted here people.  Let's get on with the proper meds and do this thing. 

I wish people (Doctors and Transplant Coordinators) would just do their jobs.  Consult patients charts and order the correct medications. Is that too much to ask?  AND these are the people we are going to trust to do a Lung Transplant...UFFDA...I am going to have to advocate ALL the time and double check everything.

Far Guy has now switched over from Tegretol to Neurontin for his Trigeminal Neuralgia.  He had spots before his eyes and a migraine for a short time after his first pill... and so it goes.

Far Side

On hold

Far Guy is On Hold for his Lung Transplant.  He has two types of fungus growing in his lungs.  He will be on medication for 8 weeks and then they may or may not take him off hold...it all depends how well the fungus responds to medication.  (The fungus revealed itself after 40 some days in culture from sputum samples taken on August 5 2019)

The Transplant Team discussed Far Guy again.   His Transplant Coordinator and his Pulmonary Transplant Dr thought he would be a good candidate for two lungs now...that would get rid of the fungus completely. Dr SH the Thoracic Surgeon said "No way that would make me too nervous." So they decided to put him on hold...which is better than being taken off the list.

More sputum tests were accomplished Thursday and Friday and blood tests are scheduled on Monday...and we get a new Doctor added to the mix...and Infectious Disease Specialist.

To say we are discouraged is an understatement.

It is our hope that once they get the fungus under control his breathing will improve.

One day at a time.

Deer poop amongst the small crabapples

Far Guy got his Shingrix shot last Wednesday....shots are in short supply...the VA Clinic happened to have one. 

Previously we both had Zostavax shot...but now they say you need the new one because it is more effective. 

Far Side

On the list : Day 32

The appointments at the U of MN went so so.  Far Guy is worse...he needs a lung and the sooner the better according to his Transplant Pulmonologist.  He needs to increase his Oxygen to keep his Oxygen Saturation up.  She changed some medications.   She wants him on antibiotics full time to see if we can get him feeling better.

We left home early in the morning during a rain storm and the storm followed us all the way to the cities.   It rained cats and dogs and other animals.

View from one of the waiting rooms.

It started to clear off  after we got there.  The ride home was much better. 
It makes for a really long day when we go and come back in the same day.  We were tired when we got home.  It is a 3 1/2 hour to 4 hour drive one way.

Today is our first free day this week...all of the appointments have been accomplished.

I went to Bingo with my Dad last night we were losers but still had a good time.
Far Side

On The List : 16 Days

Not much has changed.  They want some more tests done...because they are curious I guess.  Visits and tests were scheduled with the Endocrinologist, Pulmonologist, a scan of his esophagus, some random blood tests, a six minute walk and some breathing function tests. ( Sputum samples were sent in already and we are waiting for the results.)  He also had a Hepatitis B injection on August 1st.   All visits and tests will be accomplished in the next few weeks.

Far Guy is still very short of breath. We are keeping him out of  lung irritants ...perfume, after shave, cleaning products, fabric softner, gas fumes and campfire smoke.

We hope "the call" comes soon, but it could be a long wait.

Ratibida pinnata

 Far Side

On The List: Day One

As of 9AM yesterday July 23, 2019 Far Guy is on the UNOS Lung Transplant List.  His donor must be Blood Type A, tall (6 feet tall or taller).

Lungs are fussy organs and the match must be a good one.   Our Transplant Coordinator's name is Chris...she says we should prepare to wait for about 6 months to a year...but a lung could come available at any time.

Are we ready to go?  Yes, I do need to get my Driver's License renewed so I will do that today.

The suitcases are packed and ready to go in the vehicle.  There is a list on the board in the dining area of the last minute stuff that should be grabbed.

Hard to pack absolutely everything we will need for three months.  But you know what... that big old city has just a few stores...and if they don't there is Amazon!

Far Guy is both excited and a bit scared...the thought of all the tubes he will have scares him shitless...I told him at least he will have good drugs...me not so much...at which point he told me "Stay home then and I will call you when I get all my tubes out."  (Funny Guy)

We must wait for the call, it could come anytime day or night.  Once we get the call it is a 3 plus hour drive, Far Guy must be examined and declared okay for the transplant, then they retrieve the lung from the donor and put it in a box where it has oxygen and a blood supply until it is transplanted.  If the surgeons declare it a good lung then the surgery will take 8 or 9 hours.  If it is not a good lung then that is called a dry run and we come back home.

Far Side

Home Again

We braved the traffic and two/three traffic jams...weekend traffic I guess...who knows maybe they have traffic problems every day.

Previously:

Far Guy invited me to the room where sweet little smiling Mary pulled three feet of tube out of his stomach...I declined.

We had a really good educational visit with the Pulmonary Therapist.  She was originally from Wisconsin.  We learned so much from her.

We got home...partially unpacked and we both had naps...my nap was for four hours...which probably amounts to a sleep instead of a nap.

We are still mulling over comments from the Thoracic Surgeon "You are pushing the envelope"  "You have some coronary artery disease. not enough for the Cardiologist to be worried about, but from a Lung Transplant Surgeon's standpoint it is concerning."  " I will only transplant one lung."  " You have an 85% chance to survive one year and  then you will probably have a good seven years after you survive the first year." "You will be able to breathe without oxygen with one good lung"  "Your quality of life will be much better"  "You are getting older"  "Recovery will be hard work." "I think you will be listed for a year and then we will have to see the results of another Angiogram." " Don't be discouraged, you have to go into transplant with a really good attitude."  " two blockages are about 60%...not enough to require stents or by pass surgery at this time." "You could have a heart attack during surgery." "You are not a perfect candidate...and we look for perfect."

Lots of scary "stuff" to think about.

My one and only Lilac bloom.

Far Side

Home

We are home.  Yes we are both exhausted.  It was a week.  Yesterday we had a nap...catching up as we didn't have many naps all week.

We chose the University of Minnesota Medical Center for transplant.  Far Guys Pulmonary Doctor highly recommended The U of MN. Yes I know you are thinking why don't they go to Mayo?  Well it is a numbers thing...The University does three times as many lung transplants as Mayo.  I liked the sound of Mayo at first...we could stay out of the big city and traffic...but their numbers are just not what we were looking for.  After visiting the U Doctors...I felt confident that we chose the right place...Far Guy too.  Everyone at the Support Group meeting said "You are in the best place possible for new lungs the only other place that compares is Stanford."

I can manage the traffic, do I like it...NO...but I will do what I have to do. The most important place to be is with a good transplant team.  &*^$ traffic.   One day Jen decided to test my in city driving...Freeway and Downtown and I passed her tests.  I told her I felt like vomiting after I arrived safely at the motel. 

After last week we still have a choice...Far Guy can say no to a transplant.  Does he really need a lung transplant?  YES all the tests show that it is his only hope to live a few more years.   He is in good shape other than his crappy lungs.  The next lung infection could put his life in danger, so what to do?  See if he qualifies for a transplant...and go with it, and pray that a donor is found before he dies.

The way I see it he either says yes to dying or yes to a transplant...at least with the transplant he has a chance to live and breathe.

Tough things to talk about I know.  We have talked and talked...and prayed...and decided that God is in charge and if Far Guy is meant to have a transplant he will.

Is this all scary...yes it sure is... but the alternative is scary too.  Once Far Guy is listed for a transplant I will start a Caring Bridge site for him.

Far Side

Wistful Wednesday: 2013

This is a photo of Far Guy and Chance before Far Guy was diagnosed with Alpha-1 Antitrypsin Deficiency.

2013

We have returned from The University of Minnesota. 

We have a few more hoops to jump through.   Pathology reports from a previous Colonoscopy and possibly a Colonoscopy.  PSA results.  They will call us when we get the go ahead for a week long visit for numerous other tests.  The Lung Transplant Specialist sees no huge roadblocks for a transplant at this time.  One day and test at a time. 

Far Guy has lost even more weight.  The Doctor was young...in her 30's.  She said Lung Transplants  are one of the most difficult transplants.   Many people don't make it through the surgery, many don't live a week.  Some die within the first year....those that make it a year live on the average of 7 years.  She was quite brutal with the facts. Recovery will be difficult because of his age.  Anti rejection drugs are hard on your kidneys, there are three forms of rejection.  Cancer is a concern when you are on anti rejection meds. 

She said something that I have never heard a Doctor say before.  " Everyone has cancer, our bodies natural immune system fights it off all the time."

Far Side

Hope

This week Far Guy meets with a Lung Transplant Specialist far far away.   Scary for sure.  In a few days we should know if he will be considered for a lung transplant.  It is a long process...this is step four of a five or six step process.  The wheels of medicine move slowly.  Far Guy's Pulmonary Doctor was  on the transplant team at the University of Iowa and he feels he will be a good candidate...so that gives us hope.

Beautiful birds in Hawaii January 2019

“Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
― Emily Dickinson