Support Russ Mills

Good morning everyone!

RUSS IS COMING HOME!!
Kirsten is picking him up tomorrow at 3:00 in hopes to beat the inclement weather this weekend.
He still has a lot of work to do, but we are so glad that we'll be able to work with him and help him from home!

Happy New Year everyone!

A lot has happened in these few days- Russ was moved out of the ICU and into the normal transplant ward. They learned that his blood pressure has always been on the lower side, so they checked him over with the averages his family doc provided and said he was good to go!
He also had a visit by his sisters for a couple days and that was wonderful. They helped move him to his new room and he walked all the way there!
Today, they’re moving him into the rehab facility just down the road from the hospital. He will have sessions of different therapies throughout the day while he stays there. It is going to be hard work, but it is one step closer to his homecoming!
We are overwhelmed with gratitude for everyone and everything ❤️

I got to spend all day with Russ yesterday! We had a pretty good time. He’s still hanging out in the ICU because of that pesky blood pressure, otherwise he shares that he is actually feeling okay. He has very little pain, and the team says that the organs are performing just fine.

We’re all a little frustrated as to why his BP is still so low, and because they’ve not quite figured that out yet, they don’t have a timetable for breaking him out of the ICU and moving him on to a rehab facility.
We did talk him into getting a feeding tube- which is zero fun… but major surgery and long periods of anesthesia can actually make it difficult to want to eat anything. So getting some extra support in terms of calories will
hopefully get him on the right track.

One of the positives about his lengthened stay in the transplant ICU is a nurse by the name of Joe. All of the nurses have been amazing, but Joe has earned a special place in all our hearts. He is a pretty cool guy and he has meant a lot to Russ.

Anyway- he shared this photo to his Instagram story yesterday, so I figured it was safe to share here! It is a before and after feeding tube placement 😂 he was definitely a bit more smiley in the BEFORE photo ❤️ but this is just one step closer to being home.

An Open Letter to the families of Organ Donors,

Thank you. I wish the English language had bigger words to express gratitude… Those two words seem far too small to hold the hundreds of emotions that accompany these circumstances.

In the hardest moment in your life, you made an extremely selfless choice. In the depths of your shock and grief, you actively chose to give hope to others. That legacy will impact the recipients and their families for the rest of their lives.

Recipients may never learn who you are and you may never know where your gift made an impact, but someday, we hope you feel peace. We hope you know that your choice has given a wonderful human a chance to continue living. We hope you know that the recipients have thought of you and your family member every day since they were told a donation is necessary to heal.

Loss is not unknown to the majority of humanity… the pain and grief that comes with losing someone you deeply love is visceral. Actor Andrew Garfield famously shared that grief is all the unexpressed love you have for who was lost. Along with that, I found the attached image concerning grief many years ago from a website called The Ralph Site, and it has stuck with me.
That pain of loss never really changes, it is an ever-present companion. But our ability to grow and change alongside this companion is when things become slightly more bearable. We hope the ebbs and flows of time allow this to happen for you and your unexpressed love.

Your family is now a part of the recipient’s family. Your family will be lifted up and thought about and mentioned in conversation as long as they live. Because of you and your loved one’s selfless choice, another family’s loved one has been able to remain earth-side. Despite wishing that pages and pages of meaningful and important words could be funneled into these two, they’re what we have…
Thank you.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
A dear friend and colleague shared her family’s experience as loved ones of an organ donor earlier this year. She said that, oftentimes, medical professionals won’t even think about looking at the organ donor status on your driver’s license. The best thing you can do, if you’re interested in being an organ donor, is to have that conversation with your family members. Let them know your wishes so, if the unimaginable happens, they know how to move forward. For all of you who have had those conversations and are willing to give the gift of life, we thank you, too.

Merry Christmas everyone ❤️
We were all able to be together in Russ’s room today. He was pretty alert this morning, but snoozed a lot through the afternoon.

As we were leaving to head home, the team started to more aggressively monitor his blood pressure. It is lower than they’d like to see. Because of that, they’re swinging him back into the transplant ICU as of around 8:00pm until they have things figured out.

It will be a week tomorrow that he was given the gift of a liver and a week from Wednesday the gift of a kidney… We’re trying to remind ourselves to be patient, but we’re just so eager to see him feeling better.
He’s in good hands but we still covet all prayers and good vibes ❤️

Just got off the phone with Russ!
They’re freeing him from all sorts of tubes and he is grateful! They’re also moving him into a different room! We’re one step closer to being out of the transplant ICU.
We are also very grateful to share that the staff will let the family be together on Christmas day! I’ll try to talk him into a photo ❤️
Love you all - Merry Christmas!

Good evening!

Russ was up and sitting in a chair today! They’re still working to manage his pain, but I spoke with him on the phone and he sounded even stronger than yesterday.
Grateful doesn’t even begin to cover it ❤️

Good afternoon!

Russ is awake and alert and snoozing off and on. They're managing his pain and, all things considered, he is doing really well. I was able to talk to him on the phone and he even made some jokes!
Recovery will be a long road - but I know he can do it, especially with Kirsten by his side and all of you on his team!!

GUYS. I just got a video message from Russ! He is awake and talking already!
He looks so much better. This is truly a miracle.

Alright everybody - Russ is out of surgery!
Kirsten just shared that the doctor came out and his new kidney is already working. They're planning on leaving him be until this evening and then they'll extubate him and allow him to slowly wake up.
This is the best possible news we could have received.
My dad is going to be okay ❤️

Got our first update -
The first part of Russ's surgery this morning was to close up things from yesterday and that went very smoothly. They started working on the kidney at 11:20 and, so far, things are going well!

When your liver is damaged or scarred, fluid can start to build up in the abdominal cavity. According to the MSKCC in New York, the fluid that is created is called ASCITES (ah-SYE-teez) and can be really difficult to live with – it can restrict movement, restrict breathing, and make it difficult to eat, etc… This ascites just continues to build up and build up and has no way to drain itself or be removed from the body through normal methods… so what can be done?

There is a procedure called paracentesis which allows this fluid to be removed from the body. This procedure is completed through the use of ultrasound and a VERY long needle and catheter. The area is numbed and the ultrasound machine is used to guide the needle into the right location. Once the numbing agent has kicked in and they’ve found the money spot, they place the catheter to drain the ascites.

It can be difficult to tell how much fluid can be drained, and they measure in liters. What is scary about this is, if too many liters are removed, the body can have a hard time compensating for the loss of pressure from all that build up, and blood pressure may drop. To combat this dizziness and drop in blood pressure, some patients are then given an infusion of certain medications to help the body regulate this sudden change.

This is one of the procedures that Russ started right away on this journey. He really needed to find a way to get comfortable, and it turns out, removing that darned ascites is the way to go! From what I’ve read, doctors usually plan on taking around 4 liters during each procedure. Due to the severity of Russ’s case, they have drained anywhere from the recommended 4 liters to 10 liters (Russ did the math, and the crazy thing is that each liter can weigh up to 2.2lbs)! And because this fluid just continues to build up with nowhere to go, paracentesis is performed about once per week.

This procedure will continue throughout Russ’s time on the transplant list in order to make sure that his body is functioning as well as it can while we wait.

Good morning!
Russ is heading into his kidney transplant surgery as we speak! The nurses told us he was awake and alert this morning which is wonderful news.

We did not expect this to be happening this week, so I am stuck in Warsaw due to a pre-scheduled windshield replacement appointment... silly rocks.

Kirsten will be updating me and I'll share what I hear with you!

Hey everyone!
We all took turns seeing him just now and it was wonderful to lay eyes on him and hold his hand for a moment.
They’re going to keep him as he is and not try to wake him up too much before the second surgery tomorrow morning, and so far no one is concerned about anything!
Thank you so much for everything ❤️❤️

Russ is out of surgery! The doctor said everything was very straightforward. They are going to move forward with the kidney transplant tomorrow. He also said they always do liver and kidneys on separate days due to the complication. We asked about it and he was funny and said it was too complicated to explain quickly!

We get to head up and see him in about a half hour!
So- pray around 8:00 or 9:00 am tomorrow for surgery number two!

Good morning!
Russ got the call this morning! He is currently in surgery! The good news is, they think with this new liver, his kidney function could improve and he might not need a new kidney!!
We’ll keep you updated as we know more
❤️❤️❤️

There are lots of things that can go wrong with an organ that performs so many necessary functions… having over 300 jobs means that poor little liver is very busy all of the time.

Some of what can happen is genetic. Some can be related to parasites or viruses. Some can be a luck of the draw with cancerous cells. And some can happen due to mistreatment of the liver through over-use of different substances like alcohol or over-the-counter pain medicine.

After pouring through his physical history, Russ believes he caught hepatitis through contaminated blood samples at the University of Nebraska’s Med Center early in his career and because of that hepatitis infection, Russ has been diagnosed with a condition called Non-alcoholic Steatohepatitis (NASH). This is an advanced form of something called non-alcoholic fatty liver disease (NAFLD).

These diseases happen when the siphoning and filtering system malfunctions and causes a buildup of fat in the liver. When this buildup gets too intense, it causes inflammation and damage to the hepatocytes and lobules we learned about earlier.

This damage causes scarring which, in liver terms, is called cirrhosis. Cirrhosis is a life-threatening condition because the scarring prevents the liver from filtering the blood properly... and when the body is using blood that isn’t perfect, other things start to break down… and it becomes a whole thing – as we’ve now seen firsthand.

Here are some symptoms of NASH and subsequent cirrhosis according to Cedars-Sinai:
- Fatigue
- Mild pain in the upper right abdomen
- Bleeding easily
- Bruising easily
- Having itchy skin
- Fluid accumulation in your abdomen
- Loss of appetite
- Nausea
- Confusion
- Yellow discoloration of eyes and skin (jaundice)
- Slurred speech.

Even though the liver performs so many jobs and so many things CAN go wrong, does not mean that they will! Don’t let learning about these conditions wig you out – you do not need to jump into a weird detox cleanse, or go pay loads of money for different scans and tests. But, if there are parts of your body that feel off, or aren’t functioning as they should – speaking to your doctor wouldn’t hurt. In fact, early intervention with kind of disease is the best-case scenario! The more we all know, the better!

Russ is spending time back down in Indy as of yesterday, and the scuttlebutt is that he'll be down there for awhile.

Turns out, the damage to his liver has also knocked out his kidney function. He has now been approved for both a liver and kidney transplant.

He, overall, is doing much better than he was two weeks ago, but some of his lab results have his team wanting to keep a closer eye on him! They are also discussing if moving to dialysis will help Russ feel a bit better and keep things working more smoothly.

When I know more, I'll share more! Thanks for continuing to lift up Russ and his medical team!

Hey guys!

A few questions have been trickling in about this page and these updates, and I wanted to let you know who I am.

My name is Erin Mills Leinbach and I am Russ/Rusty and Kirsten’s oldest daughter. I was asked to help get the word out concerning this crazy adventure via social media and I took that idea and ran with it!

I am fortunate enough live about 20 minutes from my parents and have been grateful that I’ve been able to step in and help. My husband, Josh, has also been a huge part of keeping things going!

This Support Russ Mills page is the only place that updates should come from unless you see anything posted directly by my dad, Rusty.

Thank you again for loving my dad so fiercely. We definitely feel the support and love coming from all around the globe ❤️❤️

Good news!!
Kirsten picked Russ up from IU Health in Indy last night and he is home!! I plan to head over to see him after school where I will promptly give him all the hugs I've been asked to give him : )

Another unexpected blessing - they removed his one wonky tooth and have decided to table the discussion of removing his three other wisdom teeth for now. We don't quite know what they're planning in that regard, but for now, that is A-okay. We are just so relieved that he is feeling a bit better and that he is home!

Love you!

So – you and your doctor think your liver is in trouble… what do we do? How do we figure out what is going on?
When there is a suspected issue with the liver, aside from checking blood test results and discussing symptoms, a liver biopsy is required. This helps providers know exactly what is going on and how to put together a treatment plan.

According to Johns Hopkins, there are three different ways a liver biopsy can be taken:
1. Percutaneous liver biopsy – this is when the area is numbed locally and a needle is put into your liver to grab a sample.
2. Laparoscopic liver biopsy – the patient is given general anesthesia and a small incision is made to allow a small lighted tube to be put into your body. The tube has a little camera attached so the doctor can see what they’re doing! Then a needle is fed through a second small tube to grab the sample they need.
3. Transvenous liver biopsy – this method is usually used if there is an excess of fluid in the abdomen or if the patient has blood clotting issues. This type of biopsy involves a local anesthetic and a small incision into a vein in the patient’s neck. Then, a hollow tube is fed down through that vein all the way to the liver! They insert some contrast dye to allow the vein to be seen with x-ray and a needle is then fed through the tube to the liver to snag that sample.

This process is usually relatively quick, and, with proper medication, painless. In order to prevent blood loss from the biopsy site, when patients get to head home, they may be told to hang out in bed for a certain amount of time. Patients will also be put on lifting restrictions for a few days to a week in order to make sure everything heals up just fine. There will be some swelling and soreness following the procedure, but the doctor usually prescribes something to help with any discomfort.

After your tissue sample arrives in the lab, UCSF says, a technician stains the tissue with a special dye and the investigation begins. This staining allows the pathologist to look at the tissue with a microscope and figure out what the stained tissue is presenting. The different positions of cells, any visible scarring – anything out of the ordinary for liver tissue is put into a report and sent back to your provider. Usually, these results take a few days to a week to come back.

Once your provider goes over those reports and results from pathology – then it’s time to get to work. At an appointment, they will go over everything with you and come up with a plan of attack in order to keep you feeling well and find solutions to address the problem.

Hey team!
Quick update - we don't have a lot to share as far as progress or moving forward, BUT Russ has been moved out of the ICU! He's been up and taking walks, however, he's still not being released quite yet. Turns out, he had a bit of pneumonia which threw everything off last week and caused the scary moments. They're hitting him hard with antibiotics and clearing out that infection.
They are also discussing how to move forward with his dental stuff - so we'll see what they decide. We are very frustrated by the "hurry up and wait" of this whole shebang, but we know everyone is doing what they can.
We wish that teleportation was a thing so we could pop down to Indy in two seconds to sit with him... being so far away is hard on everyone.
Should anything change - I'll let you know. We love you!

I don't know about you, but when I'm overwhelmed with things I can't control, I like to learn as much about said "things" as I possibly can.
Something about taking charge of my own education makes me feel like I'm standing on a slightly firmer foundation. While Russ, my dad, fights through this set of really gnarly circumstances, I thought I'd share what I'm learning.

One of the only things I've heard about the liver my whole life is that it is the "detox" zone. I kind of took that to mean it's a giant filter for bad things our bodies might consume. And that isn't exactly wrong - but the liver is so much more than that. This squished football shaped organ usually functions completely in the background of our body systems, but our bodies cannot function without all of the crazy things it does for us.

Here are some cool facts about the liver from UPMC Pittsburgh:
• An adult liver can weigh upwards of three pounds!
• Livers perform about 300 different functions and assists other organs, too.
• Livers have two main lobes that are broken down into bunches of hexagonal lobules and these little hexagons contain cells called hepatocytes which work to filter stuff out of the blood.
• At any given moment, the liver can hold about 13% of the body's total blood supply!
• The liver is supplied with blood through two main points: the hepatic artery and the portal vein. Oxygen-rich blood enters through the hepatic artery and the nutrients from the intestines enter in through the portal vein.
• The blood and nutrients are then sent between the lobules by tissue called sinusoids. These little sinusoids help diffuse the oxygenated blood throughout the lobules to the whole organ.
• What does it do with that blood and those nutrients? Well – it breaks them down! The liver is a kind of filter – it takes the chemicals and nutrients your body ingests and it breaks them down into forms that are easier for the body to use. It is also in charge of keeping different chemical levels in your blood in check.
• During this “inspection,” where levels are checked and things are broken down, the liver also siphons out waste from the nutrient-rich blood and excretes that waste as bile.
• This bile is actually super important as it helps in the rest of the digestion process. The by-products of this bile and the other filtration system, the kidneys, are removed from the body via f***s and urine!
• The liver also: regulates blood clotting, stores iron, regulates levels of amino acids from which proteins are built, produces cholesterol and other proteins to help carry fats through the body, helps fight infections because those little hepatocytes remove bacteria from the bloodstream, converts poisonous ammonia to urea to be removed by the bladder, and the liver converts excess glucose into glycogen which is stored and can later be re-converted back into glucose for energy!

So – in between updates on how Russ is doing – since a lot of this process is hurry up and wait…. I am going to subject you to some education! The more we know about our bodies, the more empowered we will be should we ever find ourselves, or someone we dearly love, in circumstances like these!
Your liver lives on your right side, right under your ribcage… find that spot and give yourself a little pat-pat and tell your liver thanks for all it does for you!

Hello again!

I’d hoped to be writing an update about our wisdom-toothless wonder, but alas… the wisdom tooth ordeal has now been postponed for a second time…

After getting a bit better yesterday afternoon, Russ backslid a bit in the middle of the night. We got him where he needed to be and they bussed him down to Indy via ambulance early this morning. He is currently receiving amazing treatment in the ICU - he’s also joking and singing the great holiday hit “Grandma Got Runover by a Reindeer.” Kirsten shared that many of the staff are expressing their appreciation for his good attitude ❤️

This news has brightened my spirits considerably and, now that he is in the right place with the best people around, they can help get him squared away. It’ll just be a waiting game again while they get his levels back to where they should be and we see what the next steps will be.

Thank you for your encouragement and your support. Russ hasn’t been able to respond to texts or other messages lately, but the ones we see, we convey to him and he’s blown away by everyone’s kindness. Thanks for loving my dad, and our whole family, so well.

Hey support team!
Russ had a pretty rough day today, and we were a bit worried - but he is one tough cookie and he made it through and got to stay home.

We would appreciate prayers for wisdom and safety for tomorrow afternoon as the plan is to remove dad’s remaining wisdom teeth! We’ll see if they follow through with that.
Removal of the wisdom teeth is a big part of the pre-transplant checklist. He wouldn’t be put under general anesthesia, so prayers for a thorough local anesthetic and expedited recovery are also coveted should they move forward.
Thanks for praying! We love you!

Happy Thanksgiving! We had a wonderful afternoon together as a family. Russ is feeling pretty well and ate some holiday favorites!

We are very grateful for the wisdom guiding his medical team and for all the prayers and encouragement that pour in daily. Russ frequently tells me about the wonderful messages he’s receiving and they definitely lift his spirits.
We hope you’ve had a wonderful day and continue to have a wonderful weekend!

Good News Everyone!!
Russ has been approved and is now on the transplant lists!!!!!

He's all safe and sound at home!
Oral surgery next week, and then hopefully the ball keeps on a-rolling!

Great news, guys!
The procedure went very well this morning, Russ's ticker is in really good shape. Kirsten is bringing him home this afternoon!
Thank you for praying with us ❤️