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“The story of one man’s journey to organ transplants as told by his loving wife”
by Roberta Weldon
My husband, BJ, received a liver/kidney transplant on December 18, 2005 – our early Christmas gift. Our story is somewhat short and sweet. In the 80’s BJ was told that he had non A or B Hepatitis when he was donating blood at a local blood bank. It was later determined that it was in fact Hepatitis C, and that he must have received the virus from blood transfusions he had received when he was 15 (1955), after having been run over by a car. He was not allowed to donate blood as he had for more than 20 years.
BJ was in the Navy for a few years. After serving in the Navy he was a firefighter at a nearby military base until his retirement in 2000. During the first few years of his retirement we enjoyed life together. We took several road trips on our Harley and made several trips with friends. We live on a lake, so boating, fishing and camping were a great part of his retirement and our life together. We would have friends out almost every weekend. We would BBQ and take them out on the lake. It was almost like running a bed and breakfast for our friends. However there was no financial gain, just the love sharing what we had with those we loved. BJ felt GREAT. I could see some signs of the liver failure. I saw the yellowish tint in his eyes, and skin, and the swelling in his legs and feet if he drank too much during a holiday weekend such as the 4th of July or Memorial Day. However, BJ felt good and would not see a doctor. Life went on and life was good.
In August of 2004, BJ rode his Harley from SW Oklahoma to Northern Montana (it was a “guys” only type of ride). Riding the Harley was something he has loved doing most of his adult life and something I did out of love for him. When he returned from Montana he felt ill and never seemed to recover from his trip. He was just sure it was old age (he’s 65). Keeping in mind that BJ had been going to the doctor once a year for high blood pressure and was not being treated for anything else at this time. In my heart I knew it was more than “old age” and I wasn’t happy that he was not seeking treatment for the Hep C. However, you know how some men can be when it comes to their health and doctors. BJ “WAS” the type that just didn’t want much to do with doctors and modern medicine. The following is a (short) story of our journey to liver/kidney transplant:
On a cold day in March 2005 (I don’t recall the exact date), BJ would not respond to me. He could not speak or communicate to me in anyway. His eyes would open as wide as possible, and then close as tight as they could. His mouth would open as wide as it could, and his tongue would go in and out. Not knowing what was wrong I could only think of a stroke. I called for an ambulance and this was our FIRST experience with encephalopathy and the start of our journey to transplant. This coincided with the start of Roberta, being IN CHARGE.
BJ was diagnosed with Cirrhosis, which is Stage 4, End Stage Liver Failure. March thru August was a trying time with several hospitalizations and with working with the doctors to get all his medications adjusted so that they were most effective. Yes, this included the dreaded Lactulose, sorbital, lasix, potassium, a water pill, and eventually an insulin pill for the diabetes (which developed during the illness). BJ was slowly dying, and I knew something had to be done. He was just so sick, life just didn’t seem worth living to him. I continued to search for answers and pray for a miracle. I was thankful for the life we had together and wanted more. After almost 10 years of sharing our lives together we were married on June 18, 2005 (six months to the day before his transplant). It was a short but nice ceremony with a few friends and relatives present.
The first part of August, BJ was back in the hospital again (one year after his motorcycle ride to northern Montana). This time his kidneys were showing signs of distress. We were told that if BJ made it out of the hospital this time he would need a liver transplant soon. His GI doctor told us he felt that there was not enough time to get him listed, or that my husband would be able to survive a transplant. We were being told all the “ODDS” where against him. I disagreed and asked that he be referred to the Freede Liver Clinic, at Integris Medicals Center in Oklahoma City, OK. From there BJ was referred to the Nazih Zuhdi Transplant Institute in Oklahoma City at the Integris Baptist Medical Center. Our first visit was in August 17, 2005.
By the first of October we had started the evaluation for BJ to be put on the liver transplant list with UNOS (United Network for Organ Sharing). During this evaluation he passed the heart and lung portion with flying colors. However, he was not so lucky when it came to his dental. It was determined that BJ would need 5 extractions. While going through the evaluation period BJ was instructed to attend three AA meetings a week. This is a requirement of most transplant centers, if there is a history of alcohol use. Sometimes he was just so sick but he still went, at times having AA members to the house for meetings. There was nothing they could have told him to do that he wouldn’t have done. I was so proud of him for this strength and determination to beat End Stage Liver Failure. September, October and November seem to be a frenzy of doctor appointments, test and procedures. It all seems to be a blur to me now. We were just so busy trying to get him listed. I knew our time was limited. When I wasn’t taking him to his appointments, I was working on a fund raiser. We had a Ride for Life Poker Run and Auction for BJ on November 5th (he of course was unable to ride). We were able to raise a little over $4,000, and we will never forget those who helped us so much.
We continued to comply with all the transplant teams wishes and demands, and prayed that BJ would be listed soon. I felt in my heart that BJ would get a liver transplant for Christmas. BJ was a very sick man by this time. He was developing diabetes, and now needed a kidney biopsy. The kidney biopsy was preformed on Monday, December 5th, and we were told that it could take a week or more for the results. He was still not listed and was scheduled to have his dental work done on December 14, 2005 (which had been postponed several times due to white blood cell count and glucose levels).
BJ was slowly losing his belief that it was possible that he would ever get on the list, let alone a liver transplant. I was spending more and more time alone as a result of his sleeping close to 24 hours a day. I would wake him for his medications, and meals. Sometimes I would even wake him to make sure he went to the bathroom so that his ammonia level would not rise. There were many times I would tip toe into the bedroom just to check on him. It reminded of me of when I would check on my newborn children when they slept, just checking to see if they were okay. BJ’s legs and feet were so swollen he could no longer wear his shoes, and we had to cut the bands at the bottom of his sweat pants so that they would not cut the circulation off. He was constantly cold. Although he stayed covered from head to toe, he would ask that the heat be turned up even more. This was most miserable for me as I was going through hormone changes and dealing with hot flashes and night sweats. We took his blanket wherever he went. The doctor’s offices and hospitals were like torture chambers to him because they were so cold. He could only eat small amounts at a time; his ascites were putting pressure on his stomach. He dreaded leaving the house at all, and at times taking a shower was more than he felt like doing.
Even though things seemed to be getting worse, the changes in his medication made by the specialist allowed us to avoid any emergency room visits or hospital stays from August until transplant. I signed him up with a local recreation center so that he could start water walking to keep his lungs and heart healthy. I remember it being very difficult to get my husband to eat, exercise, and at times even bathe. There were times I just picked one battle a day. I was most dedicated to keeping his heart and lungs healthy. One of my biggest fears was that he would be listed and a donor liver would come available, but his heart or lungs would be deemed “too sick” for transplant.
I found myself becoming depressed and spending too much time alone. While BJ slept I worried and prayed. I also ate a lot, gaining over 50 pounds. I did not have a computer to reach out to others or to find out what was happening to “US”. Our family and friends (I think) were all so tired of hearing about BJ. My entire life was consumed with saving my dear husband’s life. My only interactions with the outside world were with doctors, nurses, and other medical personnel. It seemed as though almost of our friends had abandoned us. This was just as painful for me as the illness was for him. All the BBQ’s, lake trips, boat rides and Harley riding had stopped because of his illness, and without them most of our friends just didn’t seem interested in us. I still had a few friends that called on me and offered to help when they could. Those friends know who they are and know that I will forever be grateful. In the end his illness brought my family and me much closer. My sisters and I talk almost daily now. During the past 20-30 years of raising our own families and living different lives we had grown somewhat apart. I thank God every day for bringing them close to me once again.
On December 12, BJ had blood in his stool. I didn’t think it was anything more serious than his hemorrhoids flaring up, but I wasn’t taking any chances so I took him the 200 miles to the hospital where the transplant center was rather than taking him to the local county hospital. After 10 hours in the ER he was admitted into ICU; he had bleeding peptic ulcers.
Within two days BJ was on dialysis 3 hours a day every day, and there were discussions about moving him onto dialysis 24 hours a day. BJ’s kidneys were failing fast; I was told “he’s a very sick man”. He was hooked up to so many machines I could not count them all. They were draining 3-6 liters of fluid from his abdomen every day. There was nothing to do at this time. The doctors were waiting for the kidney biopsy results. They needed to know how to list him, whether he should be listed for a liver only or for both a liver and a kidney. This was very important; if the wrong decision was made my husband could receive the life saving liver he needed only to be sentenced to a life of dialyses. Maybe his kidneys would recover; most do. Maybe they would not; some do not. The kidney biopsy results held the answer. So we waited and prayed as I watched the life slip from my husband’s body, and as he remained unlisted for either.
After several days of waiting for the kidney biopsy results to come back, the liver transplant team along with the kidney transplant team decided at 5:00 PM on Friday, December 16 to list BJ for both a liver and a kidney. It was as though the world had been lifted from my shoulders. Everything that man could do to stop the transplant had been taken away… Now it was up to GOD.
At 5:26 p.m., on Saturday, December 17, just a bit over 24 hours from the time we were told he was listed, we were told there was a possible donor. After we were told this BJ and I said a prayer for the donor and the donor family. We talked about the love we had for each other and how our lives were about to change forever. It is difficult to explain all the emotions one feels at such times; there was so much happiness mixed with underlying fear and concern, and with sorrow for the donor and donor family.
Soon after we shared this time together BJ slipped gently away into a semi-coma. It gave me peace that he was not suffering through the agonizing waiting. There was a period of time waiting to see if there was a match and if the liver and kidney were transplantable. Once again I felt that that God was taking care of my dear husband. We waited. Mostly we were waiting for recipients to be found for the lungs and heart. That had to be done before other organs could be removed from the donor. Twelve hours later we were told it was a GO. My husband would be going to surgery at 8:30 a.m., December 18, (my youngest sister’s birthday). He was still in a coma and was unaware of what was happening. I signed the papers for them to do the transplants and began to pray for the surgeons.
At 7:30 p.m. that evening I visited my husband in ICU where he was on his journey to a new life. This new life included a liver and kidney donated to us by the generous family of a 20 year old male. We will forever be grateful for this gift, and will keep this family and their loved one in our prayers. The following day, December 19th, BJ was sitting up in bed singing a belated Happy Birthday to my little sister. The next day BJ walked from the ICU to a room on the transplant floor. On December 22, BJ was released from the hospital. Receiving a transplant on the18th and out of there on the 22nd, try telling me that was not a miracle. You don’t get your dry cleaning in and out that quick.
We were not allowed to go home because of the distance between our home and the hospital. The hospital, transplant center, and liver clinic allowed us to stay in a one-bedroom apartment they kept for transplant patients. The apartment was fully stocked (except food and sundries) and ready to live in. This was another miracle in our eyes. We were only asked for a $25.00 a week donation to stay there. We stayed there three weeks while the doctors worked on getting BJ’s medications adjusted to the correct level. God has plans for BJ and I. We are just so excited to seek and follow his plans.
Next weekend, March 18, 2006, will be 3 months post transplant. BJ has not seen a doctor in almost 6 weeks. He does have an appointment with both the liver and kidney surgeon on the 16th. BJ has had a few difficulties post transplant. Some side affects from the medication have come and gone, e.g. tremors. The medication related diabetes remains; however the amount of insulin he takes each day has decreased along with the decrease in his medications. He’s looking forward to riding his Harley as soon as the doctor gives him the okay. He hasn’t looked this good in all the years I’ve known him. He’s slim and trim, and ready to take life on without the mind numbing influence of alcohol. Once again we enjoy life’s simple little pleasures, like sending my husband to the store for milk or bread, something he wasn’t able to do for many months, something I didn’t even realize I missed.
We do realize just how fortunate we are that BJ received a transplant within 48 hours of being listed, or even that he received one at all. After having read about others suffering for years and years and still others having never received this precious gift of life, it’s hard not to feel that God has blessed you. We thank God every day. I pray that any thing I have written here will give hope and faith to someone or their loved one who is suffering with End Stage Liver Disease. In your darkest hours know that there is still a chance. It is possible that you or your loved one will be listed, a chance that you or your loved one will receive his/her gift of life.
God Bless All Who Read These Words. -Roberta
This page was last updated April 11, 2006.