Bill Was Accepted to the Kidney Transplant List

Credit - IP Closeup

After all of the physical tests have been completed, Bill met the criteria to be placed on the kidney transplant list. We had to return to the transplant hospital in Denver to take a class on next steps. Bill also had to meet with the kidney transplant surgeon and the dietitian. As well as take a chest X-ray and DNA tests in order to wrap up the initial process. 

The class was quite informative as it was made up of everyone who also met the criteria to be placed on the transplant list. The class members included all ages, ethnicities, and those who were on dialysis and not. Bill is not on dialysis because his kidney function has stabilized. He is at 18% and his kidney doctor said he didn't see a need for Bill to be on dialysis for now. So, Bill is postponing because once you start dialysis, you have to remain on it until you receive a transplant.

Bill and I learned that he has to get blood drawn once a month to monitor his Panel Reactive Antibody. This blood work will help with finding a cross match with a potential donor. Bill is open to receiving a deceased donor kidney even though the kidney won't last as long as getting a living kidney donor. Regardless of a deceased or living donor, the donor needs to be A or O blood type for Bill. The antigens as well as the cross match being negative has to match for Bill to receive the kidney. According to Wikipedia, antigens are toxin or other foreign substances that induces an immune response in the body, especially the production of antibodies. The matching will help in preventing Bill's body from rejecting the donor kidney. Kidneys from the same family will be best the cross match. But, other criteria, family living kidney donors still may not be the best match. Bill has to do the Panel Reactive Antibody blood draw monthly and send to the hospital as they continue to search for a match. 

Presbyterian/St. Luke's Hospital will work with the United Network for Organ Sharing to find Bill a donor kidney. There is a process where they will look for a donor kidney in Colorado, then region 8 that makes up Colorado, Wyoming, Nebraska, Kansas, Iowa, and Missouri. If the hospital can't find a kidney in this regional, they will do a nationwide search. The search will be for a deceased kidney donor. If there are living donors who are willing to be tested, the searching process will happen concurrently. If deceased kidney donor search is found, the hospital will call Bill and let him know of the availability. The transplant coordinator let us know that her 30-year tenure at the hospital that these call happen late at night. So, she stresses that we put the hospital's 800 number in our phones. When they call, they will let Bill know the deceased donor's age, sex, cause of death, and if he or she had high-risk behavior like getting Hepatitis C or B or HIV. The hospital tests the donor kidney for all of these diseases. According to the hospital, there a minuscule chance of these high risk diseases being passed along to the recipient. Once Bill receives this information, he has one hour to say yes or no to the kidney being offered. If he says yes, the hospital will do more testing for the cross match. It will take 5 to 6 hours. If cross match is a go, they will let Bill know that he needs comes to the hospital in Denver for surgery. Our new normal means that Bill and I cannot travel now out of Colorado or the country because Bill needs to be prepared to go into surgery at a last minute notice. If Bill declines the kidney, he has start the process over again to find a new one. He doesn't drop down on the list for his refusal. It may take longer to find another one. 

When Bill arrives to the hospital, he will be seen by the transplant doctors and have a X-ray and blood work done. If everything is good, he will go into surgery because the donor kidney has been on ice for 24 hours. Surgery takes 3 to 4 hours. If surgeon sees that the kidney will not work, surgery could stop and Bill has to go through the process again. We are hoping that this doesn't happen. If kidney is okay, surgery will happen. Bill has to stay in hospital for 4 days. He will feel good right away. 

After surgery, Bill will come home and have a 3 month recovery. He has take 9 to 12 different medications with up to 30 to 40 pills a day in the beginning so his body doesn't reject the new kidney. We have to go the hospital in Denver once a week for one month so he can get evaluated to see if kidney is working properly. The main concern is rejection. It is important that Bill doesn't get a cold or flu virus because it is harder to treat. So, we have to keep him quarantined at home and monitor his temperature. The visits to the hospital will decrease after the first month including the dosage of his medication. Bill has to take the medications for the rest of his life. 

The kidney transplant will not cure Bill's diabetes. It will help with his high blood pressure due to diabetes. Unfortunately, the diabetes will cause problems to the new kidney and Bill will have to get a second transplant. If he gets a deceased kidney donor, that kidney will last about 7 to 10 years. A living donor kidney will last about 12 to 15 years. 

So, we are in the stage of the journey that we wait for the phone call for his new kidney. We are accepting the new normal in our life. We ask that loved ones and friends accept this part of the journey too because it means no travel now. And, it also means that quarantine has to happen post-surgery for 3 months. We will be happy to Facetime with you. But, no visits until Bill has been given the greenlight from the hospital that everything is good. Thank you for your understanding!

Update 10/27/17 - Bill's Physical Tests for the Kidney Transplant List

Photo Credit: QuoteHumor.com

Bill has started the kidney transplant list journey. He has to go through a series of physical tests like an ultrasound for his gallbladder and liver to make sure everything is okay, dental check up, heart test, etc. The rest of his body needs to be healthy in order to do transplant surgery. If there are physical issues, they will need to be addressed before surgery. So far, no problems.

As for Bill's arm fistula surgery that happened on Oct 6th, his arm is healing well. No infections or complications.  We see the surgeon in December for a follow up appointment. Hopefully, he will give the green light to start home dialysis. It takes about 3 months for the fistula to work properly. We meet with the kidney doctor on Nov 10th for a check up. The kidney doctor will let us know the next steps for home dialysis.

So, this part of the journey has been waiting, tests or check ups. Sometimes waiting is a good break to catch our breath. But, for the impatient me, I'm ready for Bill to finish his tests and get on the transplant list so he can find a donor. I know that the transplant will give him his quality of life back. I'm grateful to God for all that He has done in terms of providing financial resources from the medical insurance, the excellent support from all of the different medical specialists and medical teams, and the love and support from friends and family. We are truly grateful. Yet, I know the journey is about perseverance.

There are good days and bad days. Instant gratification is easier to swallow than perseverance. Yet, Bill and I learning how to enjoy and appreciate the good days. You tend to focus more on the present day-to-day because you can't jump 3 steps ahead.  The circumstance doesn't let you. Life is precious and short. It is saying we all know in our heads. But, it has truly penetrated our hearts. There is a deeper appreciation for life.

As we learn more about kidney failure and how it doesn't discriminate, I appreciate the courage of Selena Gomez as she tells her story of having lupus and the need for a kidney transplant. Being a Hollywood celebrity, she doesn't have to tell her truth. But for those of us going through the same journey, we celebrate her story. And, like hers and other successful transplant stories, it gives Bill and me hope.

Update 10/6/17 - Fistula Surgery and Transplant Team Appointment

On 10/5/17, Bill had his fistula surgery. When the doctor started the surgery,  he hoped that he could fuse the artery and vein in Bill's wrist. But, from a past IV insertion, it caused the main vein to be blocked. So, the doctor had to do the fistula around the crease of the elbow.

Bill's fistula

So after 2 1/2 hours of surgery, Bill got his fistula. As part of the post operation instructions, we need to feel and listen for the sound of a "bruit" and the feel of a "thrill". To translate doctor speak, Bill's fistula needs to sound and feel like a running stream from a Colorado mountain setting. To feel, we have to put two fingers on the fistula. To hear, the discharge nurse gave us a stethoscope. It was my first time using one. I could hear the blood flowing. So could Bill.

Post Operation Instructions

We have to do this two times a day. If we don't hear a running stream, we have to call the doctor immediately because there is blockage. Bill went home because it was outpatient surgery. He's resting with pain medication.  He has to keep the bandage on for four days. Then, we take it off and add an iodine solution. He has to keep his arm elevated on a pillow to prevent swelling which means he has take a pillow to work on Monday. Bill can't straighten his arm or flex it for 2 to 3 weeks. But, he is able to do a limited range of motion.We will met with the doctor throughout the three months to make sure everything is working properly. The next step is preparing for home dialysis which should start in January 2018.

On 10/6/17, Bill and I met with the Presbyterian/St. Luke's Transplant team. We were grateful that they came to Colorado Springs. First, we met with the transplant renal social worker. She asked us questions for about an hour. She wanted to assess that Bill and I were ready to do the transplant journey because it is hard. She asked difficult questions about our life, our work, our family, our mental and physical health, our financial situation, etc. I appreciate the thoroughness because transplantation is no joke. We found out earlier this week that Bill's insurance will cover 100% of the transplant and provide us with a travel grant since we live 60 plus miles from the transplant center. The travel grant will pay for lodging, car rentals, gas, etc. We are so grateful that we don't have any out of pocket expenses. And, the social worker today said that Bill qualifies for supplemental Medicare A or B with his insurance. Medicare will pay for out of pocket home dialysis expenses. God has been wonderful in providing us with financial resources.

After we met with the social worker, we met with the transplant kidney doctor who walked us through the medical tests and procedures before and after the transplant surgery. He did a quick check up on Bill and will submit his findings to the transplant board. He signed off on Bill's interview and check up.

We finished the appointment with the kidney transplant nurse who will be our main contact. She gave Bill a list of medical test he needs to do. Fortunately, Bill has done a lot of these tests because of his diabetes. Once all of his medical tests have been completed, she will submit to the transplant review board. Then, we will need to go to Denver again to meet with the board and do additional testing like DNA tissue testing for a match. It needs to be a blood and DNA tissue match for the living donor. We will do additional evaluations before the board reviews and greenlights that Bill is a candidate for a kidney transplant. At that time, they will give us instructions on how to tell friends and family members to get tested to be a living donor.

While this is happening, Bill will be on dialysis while he waits for a kidney. We pray that we find a living donor so it can shorten his wait. Otherwise, he will be on the wait list up to five years for a deceased donor kidney which doesn't last as long as a living donor kidney.

Thank you for your prayers and well wishes. Please pget the word out for us about Bill needing a living donor. Even though you don't want to be tested or if you are not a match, you can help by getting the word out through social media. We are grateful and appreciate all of your efforts!

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.