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

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

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

Busy Day

Our day began at 5am.  An appt for a liver ultrasound. We saw the Palliative Care Doctor, he was a fairly cheerful guy who talks to patients about worst case scenarios.  Far Guys advance care directive will change at transplant, he needs more time to recover than our advance care directive says right now. Three days on a ventilator and I V antibiotics might not cover him...so changes will be made.  There is a possibility that he could get sent to a rehab unit...or if he has trouble weaning off the vent he will go to a hospital that specializes in those kind of cases.

Our Thoracic surgeon was delayed in surgery so we will see a different Dr next week.

We have a Social Worker  named Liz, she will arrange housing for me across the street from the hospital at the time of transplant. We can contact her with concerns or question at any time.  She also asked some hard questions...that bear discussion.

Far Guy went for a heart cath about 3:15, he did well...and is pretty normal for his age.  He had one small questionable area which was cleared up with a heavy dose of heparin.  He is resting now and when he gets all his tubes out we will head home.

We have to be back next week for A gerd test, a rehab visit and a visit with his new Thoracic Surgeon.

Transplant Board meets every Thursday...so one of these Thursdays he will be listed...God willing and the crick don’t rise.

From his scan on Wednesday he most likely has a lung infection brewing and will be treated with antibiotics.

Thank you for all the comments and prayers we appreciate them.

It rained here.

Far Side

Wednesday stuff

Far Guy had a cat scan and then we met with his Transplant Coordinator for several hours.  She has 100 transplant patients, all in different stages of transplant. 

We went over all the tests so far.  It all looks good....so far.  He has good kidney function which is very important as the anti rejection drugs after transplant could wipe out his kidneys.  His liver function is good. His hemoglobin is a little high, it is possible that his from the prednisone he is on and it may make him a temporary diabetic post transplant. His cholesterol is fine as are his blood gasses.

He has some antibodies, but not a long list. He has had measles, mumps and rubella so he has those antibodies as well as Hepatitis A and Toxoplasmosis. He has antibodies of Hepatitis B because he had the Hep B shots when he was on the Rescue Squad.  So he is in good shape with antibodies....his donor should have the same antibodies...or in the ballpark.

He needs to get the new Shringrix shot..how ever you spell it.  Possibly a booster of DTP and when the new flu shot is available he should have that also. 

He needs a couple more tests that they could not schedule this time around, so we will return for them soon.  

If all goes well tomorrow he will presented at the transplant board with the understanding that the last two tests will be acccomplished as neither of those tests are show stoppers.

After appointments yesterday we found a candy shop. 

Far Side

Tuesday’s Talks

Tuesday was all about talking to a few people. 

First the size 000 Dietitian who was so thin we are convinced she never eats anything.  Far Guys diet is just fine. 

Second was Dr Tom a Hepatologist or Liver Doctor.  He looked over Far Guys Liver Biopsy and declared him fit for a transplant.

Third talk was a really long Transplant Teaching Class with Far Guys Transplant Coordinator...Chris.  We have a huge manual to read. 

A lung transplant is a big deal, lungs are the most difficult organ to transplant. Hearts and kidneys are contained within the body and are much easier for that reason.   There will be a rejection of some kind after the transplant.  The donor will have to be someone over 5 feet 9 inches tall with type A or O blood. 

In the afternoon we drove North to a huge craft shop.  I bought yarn for a special project and some for nests....imagine that. 

The cotton yarn on the left is all tangled up. It is driving me nuts. 

We heard that the fellow with no brain activity after his lung transplant died today, leaving behind his fiancée and a 1 1/2 year old, a 9 year old and a 17 year old.  Lung Transplants are scary. 

Far Side

Monday’s Tests

The mornings tests included a very large blood draw, two sticks worth and 25 vials. Urine and poop tests. A Dexa Scan and xrays of chest, spine and hips.  

Just before lunch we went to a Lung Transplant Support Group meeting where we made many friends, they all were either waiting for a lung transplant or had one, or were a Caregiver of a lung transplant patient.  The stories were varied and some were sad... one fellow died recently and another had no brain activity for the past few days.  Young and old people from all walks of life. 

A while back our daughter Jen said “ My friend and co worker Peggy has a friend who had a lung transplant and she is doing great.” Well who do we meet at the meeting but Peggy’s friend...and yes she is doing great.

The support group has a Facebook page and Far Guy was “friended” by a number of people. 

A wonderful man by the name of Charlie gave us his phone number and said to call day or night.

We had lunch in the Cafeteria before Far Guy had a Lung Perfusion test and an Echocardiogram with Bubble.

After all the appointments we went to a shop that sells flavored popcorn.

Then after resting a bit we went to a place called Annie’s Parlor for some supper.

Tomorrow is another day.

Far Side