Update 9/23/17 - Kidney Transplant Class

Diagram of kidney transplant after surgery (Photo credit - Heartline.com)

Yesterday, Bill and I went to the kidney transplant class at Presbyterian St. Luke's Hospital in Denver. There were a lot of people ranging from different ages, ethnic groups, and kidney failure situations. Like the motorcycle driving young man in his 20s who is needing a transplant. It showed me that kidney failure does not discriminate.

A nurse who is on the surgical transplant team taught the class. I'm glad Bill and I went. The information helps us to better prepare us for next steps. Here are the highlights of what we learned from the class:

• Presbyterian St. Luke's has preformed over 1630 kidney transplants since 1985.
• Your BMI has to be under 30 to get the surgery. Anything higher will require you to lose weight. Bill is at 24 BMI. So, he is at a healthy weight.
• Living donors have to be a blood type match. So, it can be from a relative or someone who is unrelated. For Bill's donor, he or she has to be A or O in blood type.
• During the surgery, the kidney is placed in the pelvis and attached to the main arteries and veins. Bill will keep his 2 original kidneys. It is a 3-4 hour surgery with a 4-5 day hospitalization. Surgery will take place at St. Luke's. 
• We will have to meet with an evaluation team (dietitian, social worker, transplant kidney doctor, transplant surgeon, and transplant coordinator). We are grateful that the team travels to Colorado Springs once a month.
• Before that meeting, Bill has to go through a lot of tests (heart, blood, virus screening), chest X-ray, abdominal ultrasound, dental check up. The good thing is that Bill had to do a lot of these for his diabetes. So, the team can use those test results.
• Once test results are available, the Transplant Selection Committee will review to make sure everything is okay. If all things are a go, then Bill will go on this national list as an individual waiting for a transplant. 
• In Colorado, there are 1886 people waiting for a kidney. The median wait is around 5 years for a deceased donor kidney. This is why we want a living donor match. The wait is only about 6 to 12 months. Bill will stay on home dialysis until he finds a match.
• To be a living donor for Bill, the following must happen:
• Be A or O blood type
• Close to Bill's height and weight. Bill is 6 feet tall and 180 pounds. It doesn't have to be exact.
• Go through testing (basic blood work; urinalysis and culture; screening for infectious diseases and viruses; heart testing; kidney function tests; X-ray and ultrasound; psychological tests).
• You can't be a donor if you have diabetes, multiples kidney stones, high blood pressure and on multiple medications, history of cancer even if the cancer happen a long time ago, over 65 years old. You also need to be the similar height and weight to Bill as the donor kidney needs to be the same size as Bill's kidney.
• Surgery is about 3 hours. Hospital stay is 3 days. Bill's insurance will pay for the donor's surgery. It does not pay for travel or expenses for being out of work. Out of work time can be about 4 weeks.
• The living donor will live a healthy life after surgery. No complications.
• If the team finds Bill a match, he and the living donor can receive a call right away to schedule surgery. Surgery will happen at the same time as the team would remove the living donor kidney and place in Bill's body.
• Bill would be in recovery for about 2 months. He would have to meet with team regularly to make sure everything is working properly. He will have to take anti-rejection medication for the rest of his life. 

Our biggest prayer is for a transplant as Bill wouldn't have to be on dialysis anymore. He would have his quality of life back. It is a lot for us to process. But, it is the best decision for him.

The best ways to help us:

• Prayers and well wishes
• Letting people know that Bill needs a kidney based on the living donor criteria and blood match of A and O. We learned that there are people who want to be a living donor.
• Getting tested if you are A or O blood type and close to Bill's height and weight. Bill is 6 feet tall and 180 pounds. It doesn't have to be exact

If you want to be a living donor, please contact me at denisewallace326@gmail.com. Thank you!

Update 9/18/17 - Left Arm Fistula Appointment

Today we met with the surgeon who will do the left arm fistula for the home dialysis.

As you can see from the image, the fistula allows for the blood filtering to happen. A needle from the dialysis machine will be inserted into the fistula (the fusing of a vein to the main artery).

The outpatient surgery is scheduled for Thursday Oct 5th at 12noon MST at Penrose Main Hospital. The surgery will take about 2 hours. Bill will need to rest and elevate his arm for a few days until the swelling goes down. He will return to work that following Monday.

The doctor will monitor the fistula for about 3 months to make sure everything is working correctly. Which means that Bill wouldn't be able to start home dialysis until January 2018. I know Bill wanted it to be sooner. But, this allows us to get dialysis machine training and prepare the second bedroom for his Broncos themed dialysis man cave.

Our kidney transplant class is Friday Sept 22nd at Presbyterian/St. Luke's in Denver. Then, we will schedule a time with a kidney transplant team from that hospital. We're grateful they can come to Colorado Springs without us making the trek to Denver. Once Bill has a match, the transplant surgery will happen at St. Luke's. There are 99,000 people in the US waiting for a kidney. I pray Bill finds one soon.


Photo credit: Verona Veins at Access Care Physicians

Update 9/12/17 - Initial Kidney Transplant Appointment

Bill and I will travel to Denver to Presbyterian/St. Luke's Medical Center on Sept 22nd for our initial kidney transplant class. We will find out more information about the process. Their website has good information about the transplant process.

General Information
Types of Kidney Transplants - we are wanting a living donor transplant
Your Pre-Transplant Evaluation
Becoming a Kidney Donor
Life After a Kidney Transplant
Patient Stories and Videos

By reading the initial information, it will be an intensive process. I know some of you have reached out about wanting to be a kidney donor. We appreciate your willingness to be tested. Please read "Becoming a Kidney Donor" and let us know if you want to go through the process. We will send you the next steps.


photo credit - Prayers for Special Help.com

Update 9/8/17

Bill will do an ultrasound on 9/13 for his left arm in order to prepare for the surgical consultation on 9/18. The fistula which is the fusing of his vein and artery which will allow the blood to be filtered from the machine.

After the consultation, Bill will be scheduled for surgery. The doctor will let us know what the surgery entails.

Pray that there are no issues with Bill's arm veins and arteries.

Update 9/6/17

We went to the kidney specialist this morning. Bill’s kidney function still remains at 16% which is blessing since it has not decreased. The doctor said we could wait on dialysis. But, Bill has decided to move forward. So, the next steps are the following:

1. Bill will need to get surgery on his left arm where the surgeon will need to do a fistula which is fusing one of his veins and artery together to prepare for home dialysis. That area is where the tube will be inserted and the blood filtering will happen through the machine  2 to 3 hours/3 to 4 times a week. Dialysis will happen after work and on weekends. After surgery, Bill will need to wait 2 months to make sure the fistula is working properly. If everything is okay, then dialysis will start. While we are waiting, Bill and I will get trained on how to do the home dialysis.
2. During this dialysis prep time, we will meet the transplant team to discuss what family members and friend need to do to get tested. Prayers that we find an exact blood-match living donor. Bill’s body will respond better which this option and he would get off of dialysis permanently after transplant. Bill would stay on dialysis until he got a match.

Welcome!

Welcome to Braveheart's Kidney Journey. This blog is where we will update you on Bill's kidney journey. It is the journey of my Braveheart who is going on a major journey. Prayers and well wishes are definitely welcomed!

If you don't know our story, my Braveheart got diagnosed with stage 4 kidney disease due to complications from diabetes and high blood pressure that he contracted at the age of 27 from a virus that attacked his pancreas. With kidney function, you need 100% of both kidneys functioning. His primary care doctor saw some abnormality with his kidneys and referred him to a kidney specialist. It was early spring when we saw the kidney doctor. Through a series of tests, the doctor saw that his kidneys were at 21%. Not good news but not drastic yet. He wanted us to come back for a follow up appointment. At that appointment, Bill's kidney function dropped to 16%. The doctor was worried that the function decreased so quickly. He started talking to us about dialysis and kidney transplant. We started the journey by Bill doing a kidney biopsy to rule out any other disease. Test results showed failure from diabetes and high blood pressure. Now, we begin the journey of home dialysis and kidney transplant. It will be a journey of ups and downs requiring our strength, bravery, and vulnerability because this journey will be our new normal until transplant happens. A transplant will give Bill his quality of life back. We pray that we find a blood-match living donor soon so Bill won't be on dialysis for a long time. Dialysis will help him while we find a donor. But, it is not the same as finding a healthy kidney.

Thank you for traveling this journey with us! No matter your religious belief, we welcome prayers and well wishes.