Sean had a hiccup today. He has been feeling pretty tired and sore after the Peritoneal Dialysis (PD) catheter placement on Thursday. This morning he started running a fever, so he went to the ER and was admitted to the hospital. He's had blood tests, a CT scan of his abdomen, and two rounds of different antibiotics. Because of the contrast medium used for the CT scan, he'll likely need dialysis before he can go home.
We hope this is just a small setback and he'll be able to go home tomorrow to continue healing and transitioning to PD.
Sean is now 6 weeks post-op and is healing well and settling into his new routine and diet. It hasn't been easy, but he's a rock star!
Today he has another procedure as we start the process of transitioning to peritoneal dialysis. This is the type of dialysis that is done at home, at night. There are numerous benefits to this change. Not only the convenience of home, but because it's every night, he won't have the drastic ups and downs of toxin and fluid buildup, thus relaxed dietary restrictions; and there is less chance of infection compared to the permacath that he needs for regular dialysis. Today the peritoneal dialysis (PD) catheter will be surgically placed in his abdomen. After two weeks of healing, he and his wife Natalie will go through a two week training program. Once he is solidly on PD, the permacath will be removed.
In the "best news ever" department, he received a call from the surgeon at Stanford regarding the pathology report on the kidney tumor. The tumor was fully contained within the kidney and below the size parameter that they were hoping for. The second tumor turned out to not be a tumor at all, but a clump of blood cells that may or may not have been a pre-tumor. Because of this report and how well he's doing, the wait for a new transplant has been reduced. Instead of 2-5 years, we are looking at doing it THIS fall! We have an appointment to meet with the head of the transplant department at Stanford on April 13th to begin the process. Cheryl (Sean's mom) is the primary donor candidate. Although she was a good match 27 years ago, new testing will be done as that can change. Sean's twin sister Amy will also be tested.
We are all very excited at the prospect of having this journey completed by the end of the year. Please pray for that to happen and for Sean and Natalie to have the strength and stamina they will need to see it through.
Thank you for your love and prayers! We'll let you know how he does today.
Sean's labs yesterday were improved, but he needed dialysis again and it was another really long day. It appears the problem was caused by a clot in his dialysis catheter which has been cleared with anticoagulant drugs. Labs this morning were good and we were cleared to come home. On Thursday he will have his first dialysis here in Reno and will get established into his new routine.
Our updates here will continue, but perhaps weekly rather than daily.
Thank you for all your prayers and support through this difficult time. Thank you for loving our Sean!
Today was a long, tough day. It started out so hopeful. We would go to Stanford for a dialysis treatment and be done early enough for an adventure. (We really wanted to go find the Flintstones house we saw from the 280.) About an hour into his treatment the on-call doctor called. His potassium and phosphorus levels were off the charts. We've been so careful with his diet, so the doctor suspects there is still something wrong with the catheter and the dialysis is not being as effective as it should. The dialysis today was extended to the maximum flow and length of time and an ending lab was drawn. Two pharmacies, one grocery store, and a gas station later, we were on the way back to the house in San Francisco, arriving after dark to a power outage. Ugh.
We had planned to drive home on Monday. Now we will be back at Stanford first thing that morning for more labs and more dialysis. If his numbers don't come down, they will readmit him to evaluate the catheter and consider another replacement. Please pray it all goes better on Monday and we get to go home.
Yesterday was Friday. I have to keep saying that to myself as the days are running together. Today is Saturday. Today is Saturday. Today is Saturday.
Yesterday we slept late. Really late. It felt good. We spent most of the day working on diet plans, food lists, and macro trackers. Fun, right? Sean wanted to get outside for a walk. He pushed himself a bit and we walked through the neighborhood looking at houses. San Francisco is an interesting place. There is a building down the street that is covered with an amazing mural. We stood there trying to figure out what it was until someone came out and we were able to ask. It's a community center with after school programs. We ended up walking 6 blocks each way. Sean did fine, but was having some pain when we got back, so he rested while we continued the diet challenge.
This morning we go down to Stanford for another dialysis session. He'll have labs and get weighed, so we'll be able to see how we're doing on the food and fluids. Pray it goes well and he tolerates it.
Today was a really long day. This morning we had a surgical follow up appointment in the clinic. Sean's recovery is going well. The pathology report is complete and we got to read it. Of course, we have no clue how to interpret it or what it means for the future. We'll be waiting for his primary transplant surgeon to be back in town next week to hear what he thinks about it.
This afternoon he had dialysis again. We reported the problems following his last dialysis and they made adjustments that helped a lot. We met with the renal department dietician and had several questions answered, although there are so many more. It seems we're looking for exact do's and don'ts, and the reality is more trial and error. We're going to get this, but probably not until we get home and settle into a routine that works.
Tomorrow is another day off. We plan to rest, walk, and do laundry. Good night.
Today was, as predicted, a very good day. We rested, and walked, and researched. We spent time visiting and sharing dinner with our hosts. Sean is still very sore, but a little better each day. Tomorrow will be a long day with clinic appointments in the morning and dialysis in the afternoon. We're praying that he tolerates it better this time. Good night.
Today dialysis kicked butt. Sean's butt. He's had four daily treatments beginning the day of surgery and then two days off. Because of the two day gap, the dialysis was faster flow, longer time, and took off more total fluid than before. The side effects of this fluid drop are dizziness, nausea, and muscle tingling/cramps. Today he had all those symptoms for a solid seven hours. We know that he'll get used to this. We know that this is a great reason to stick with fluid limits so there will be less fluid to take off (although they haven't exactly given us limits, yet). We spent a couple hours reading labels at the grocery store, trying to figure out what he can eat.
We know this will get better, but today was hard.
Tomorrow we have a day off. We'll go to bed early and sleep late. We'll take some walks and continue trying to figure out this diet thing. Tomorrow will be a good day.
Today was an eventful day. Sean's catheter was replaced under sedation and the procedure went very well. He has had some pain at the site, but not too much. The big news is, he was discharged today! We are currently at the house in San Francisco and he is settled in for the night. All the movement to the car, the drive, and into the house caused him quite a bit of pain. Tomorrow we have to be back at Stanford for dialysis at 8:30 am. Please pray for the travel there and back to be as painless as possible. We're thankful that we'll have a day off to rest on Wednesday.
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Sean's story began when he was 14 months old and diagnosed with kidney disease. After many remissions and relapses, at 8 years old his kidneys began to fail and he had a transplant. His transplanted kidney has served him well for nearly 27 years.
In July 2019, a tumor was discovered on his one and only kidney. It was found to be cancer and his kidney needs to be removed. Surgery is scheduled for Wednesday, January 8, 2020. He will likely be on dialysis for 2-5 years before he can receive another transplant.
This Caring Bridge journal will be updated regularly to keep our family and friends informed about his journey.
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