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

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 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

Date Night

We had our usual once a year date night at the County Fair.
We had French Fries at the 4 -H booth and a Pork Burger at the pork producers stand, we walked through the exhibit buildings and onto the Midway.

It was a very warm day.  We sat and rested a few times.

Far Guy has been struggling in the heat and the humidity.  We bought a dehumidifier and since then he can breathe a bit easier inside the house.

We should have a definite spot on the Transplant List this week, they had to submit everything to our Insurance Company...they may want some additional tests.  He has been discussed at the transplant group and received the all clear for either a right or left lung.  The Medical/Insurance World is all about hurry up and wait. When they call for many phone numbers we will know he is on the list.

I took many notes while on the phone with the Transplant Coordinator....we have a book and we write everything down.

We have to go back to the Cities soon for a consult with an Endocrinologist and he needs to have a scan done of his esophagus.  Hopefully they can schedule them the same day.

Far Side

Rain

We have had rain for two days.  The first day I caught up on laundry and packed some suitcases just in case we get on that Transplant List and get a call.  I have one suitcase full of  misc stuff medications, bath stuff etc.  One for clothing and one for craft stuff to keep me occupied.  I also have a list on the bulletin board that tells me what we need to grab quickly before leaving.  (We should know soon if he is on the list, unless they want some other medical tests.)

I resurrected my sock knitting project, I need to visit that project more often.

The rain has beat down my daisies.

Yesterday Far Guy had surgery to remove his defective port.  It went well, but he is very sore.  For a quiet activity I spent some time online shopping .  I finalized this years Christmas Card design and I needed a few die cuts and ordered the paper with matching envelopes....Blueprint Blue.  Then I cut a bunch of watercolor paper and stamped my design 119 times.

Then my train of thought derailed and I stamped a few of my newest stamps...first time I have had a chance to try them.

 It will be fun to see how they color up!
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

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