Just a few happenings

New glasses:  If you have followed our blog you will know that Lee has surgery on both of his eyes over the last 4 months or so.  The time had finally come to get new glasses.  The cataract surgery have healed up nicely and with the surgeries Lee's  distance vision was corrected he says its like looking through binoculars out to the mountains, but his reading and close up vision he still needs glasses.  We went to Lenscrafters and started looking at new frames I kept handing him frames that I likes and he kept shaking his head that he did not like them.  So I stepped back and just let him look and make the decision on his own.  I think he picked a great pair it is something I never would have handed him but they fit his face nice and look good and the best part he loves them.

Most of my life I have had long hair, as I have gotten older I have cut it shorter and shorter it grows out and I will eventually cut it again.  Being summer I have just roasted the last couple months I know being from Southern Utah the 14 years it should not be that bad in Provo but it is.  We live close to the Provo river so that puts our humidity index above what I am use to and we are at a higher altitude so when it is hot it feels even hotter then it is.  Anyways I recently cut my hair shirt again ignore my red face I seem to remember to get picture after I have been out walking with Sadie so yes it is hot and I have a red face.

All of Lee's life his mom or sisters have made fudge, I never had the patients to learn although I watched Georgetta make it hundreds of times and even made it with her there guiding me I never tried it all on my own.  Now Lee had been pestering me to make him fudge.  I know I should have learned this skill long ago knowing how much he loved it but I always felt it was something special that his mom did that I did not want to interfere with.  Now that mom is no longer with us it is time to bite the bullet and learn to make fudge.  I know the basics and have the ingredients so I gave it a shot ( sorry Jesse I didn't call it was like 11 pm) it turned out tasting good it just did not set up very good I think I under-cooked it.   I know it is a skill that will take time and patients to learn and I will get it someday. I am sure Lee will enjoy the errors at least some of them like he did this one. 

This June I celebrated my 15 years working for Intermountain Healthcare.  I started as a brand new nurse on a surgical unit at Dixie Regional Medical Center back in 2004.  I worked and watched as the unit changed and  grow into a Surgical-Trauma Unit.  Dixie Regional grew into a level II trauma center and I enjoyed working with the trauma patients.  If you have tracked our story you know we made the decision to move closer to Intermountain medical center in Murray where Lee's transplant team is located and where  he will be having a liver transplant.  We chose Provo for several reasons, we felt like it was a good central hub, family close withing a few hours in several directions, we did not want to live anywhere in the Salt Lake Valley for many reasons, and we had talked about moving to Provo for several years and every time we really thought about moving there were no jobs posted.  I think the lord knew we really were serious and needed to move because the job that I really wanted open up and after one phone interview and a meet and great with the boss the job was mine.  I started working at Utah Valley Medical center in May of 2018 on the Neuro Shock Trauma ICU.  I know that I would miss my Dixie friends but was excited to learn and grow as a nurse.  I am thankful for my Boss Curt he has been so awesome to work with me and asks about Lee and how he is doing, I feel like this is the boss I needed through this stage of my life where I need support from not only our family and friends but from my boss and work family too.  

Every 5 years of employment we receive a anniversary gift and packet,  This year I had a really hard time deciding what to pick.  in the past I usually picked jewelry but I just wasn't feeling it this year so I picked a Cuisinart Air Fryer. I am excited to get it and start using it I will see how things turn out with it.  

The Murmur's are true

During Lee's last appointment on 7/15 we learned Lee has a heart murmur.  I cannot remember that he has ever been told this before.  Here is some info about heart murmurs from WebMD.

The "murmur" is the sound of blood flowing. It may be passing through a problem heart valve,  Or it may be that a condition makes your heart beat faster and forces your heart to handle more blood quicker than normal. Most are innocent and don't require any treatment. Some people are born with valve problems. Others get them as a part of aging or from other heart problems. Common conditions can make your heart beat faster and lead to heart murmurs. They can happen if you're pregnant, or if you have: Anemia, High blood pressure, Overactive Thyroid or Fever.

It is felt that Lee has a murmur because of his chronic anemia and is benign.  Lee usually runs quite low on his blood counts and needs blood every couple of months. 

I found a link that has heart murmur sounds audio:

https://soundcloud.com/sensicardiac/vsd-pulmonary

There is nothing that we need to do for Lee's murmur the doctors will continue to watch it and make sure it is stable.  We hope that it will resolve on its own with the liver transplant and the anemia issues that are associated with it.  

Just another appointment

Lee had another appointment with the liver team today.  He seems to be doing alright.  Dr.Gilroy is ordering a MRI to be sure that Lee does not have any blood clots and to be sure the TIPS procedure is still functioning correctly.  Liver disease can cause blood clots in the liver. All in all fairly uneventful  Lee did get his labs drawn for a new MELD score. It is now a 19 unfortunately that is lower from the last score of 21.  Lee's coordinator told us that Lee is talked about in every IDT (interdisciplinary team) and the surgeons are hoping to get Lee a liver soon and he is listed to accept a hepatitis liver.  Following is exerts I found in the Salt Lake Tribune "Hepatitis C is a liver infection that can become a long-term, chronic infection. The Centers for Disease Control and Prevention estimates that between 2.7 million and 3.9 million people in the U.S. have chronic hepatitis C. However,  Dr. Gilroy said, 98 percent of people can be cured of the infection. It also could mean an additional 600 livers available each year, Gilroy said. And that's a big deal: about 12,000 people are added to the wait list every year, but only 7,000 are taken off, according to an Intermountain news release.This creates a supply-and-demand disparity that results in about 1,500 people dying each year while waiting for a donated liver to become available for transplant," the release stated. Gilroy isn't sure if other places around the country are doing these kinds of transplants, but said Intermountain physicians are paying close attention to how these two patients react to the transplants."  https://archive.sltrib.com/article.php?id=4704667&itype=CMSID

After we came home I took our Sadie girl for a walk although it was hot outside one area where we walk has a large shade area at that time of day.  I think our girl misses her yard he enjoyed laying in the shady grass.

Clinical trial for a new organ transport system

We recently received a call about a new organ transport system that Lee's doctor had submitted his name for the trial.  Below is the power-point that we were sent for education on the new device.

 Lee and I talked this over and weighed our options we both feel that this could benefit him more then hurt so he has opted to be part of the clinical trial. 

Received a message from Krystal

Yesterday I received a message from Krystal the lady that I work with that was completing testing to be a living donor.  Unfortunately her anatomy was to different from Lee's for them to be a good match.  It is disappointing but maybe she will be able to donate to someone else in need.

I will still follow her journey, I have a link to her blog attached to ours and here is the link in case you want to follow her journey also.

https://kristalsjourney.blogspot.com/

Just a story I wanted to share and save.

I recently wrote a post about living donors. Today I came across a story of a lovely young lady that has been a living donor not once but twice.  What a blessing she has been to two people that she had never met before.  My hope is to spread awareness of organ donation either living or at death and the great need for organs. Please take time to read the story the link is below. 

https://www.uchealth.org/today/living-donor-when-you-have-something-to-give/?fbclid=IwAR0olt4FvsqPopzkHAmTOQewidQuGNBDoud0tClLOxjH9TNGD-4Csgu-J8A

Stand By again

Last night (about midnight) we were getting ready for bed and received a call that Lee was on stand by for a liver, he was the first back up and would receive a call mid morning to let us know if the liver was placed or if it was Lees.  We went to bed and had a restless night wondering if we would be heading to Murray in the morning for surgery or if it will be wait longer. This morning we received a call that said the liver had been placed. So that means Lee will be waiting for a while longer. 

How organ matching works

When a transplant hospital accepts a person as a transplant candidate, it enters medical data—information such as the person’s blood type and medical urgency and the location of the transplant hospital—about that candidate into UNOS’ computerized network. When an organ procurement organization gets consent for an organ donor, it also enters medical data—information such as the donor’s blood type and body size and the location of the donor hospital—into UNOS’ network.

Using the combination of donor and candidate information, the UNOS computer system generates a “match run,” a rank-order list of candidates to be offered each organ. This match is unique to each donor and each organ. The candidates who will appear highest in the ranking are those who are in most urgent need of the transplant, and/or those most likely to have the best chance of survival if transplanted.

The UNOS Organ Center helps place donated organs for transplantation 24 hours a day, 365 days a year.

Below is the MELD score calculator Lee's current listed MELD is a 21. 

To determine your MELD score, please complete the form below.

 This calculator is recommended for ages 12 and older.

 All fields are required.

Date of Birth(mm/dd/yyyy)

Bilirubin(mg/dl)

 

Serum Sodium(mEq/L)

 

INR

Serum Creatinine(mg/dl)

Dialysis Twice

Had dialysis twice, or 24 hours of CVVHD, within a week prior to the serum creatinine test?
 Yes  No
Note: Creatinine will default to 4 mg/dl with a positive response.

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