Chris Needs a Kidney

06/17/2025

A Little Update on Chris

The other day, Chris, Ryan, and I were out to lunch when we ran into some friends we hadn’t seen in a while. They were so happy to see how great Chris looks—and it made me realize that I usually only share the hardest parts, the medical complications. But there are good days too. Right now, life looks very different from where we were a year ago.

Last year was terrifying. Chris was hospitalized, couldn’t get off the couch, and had just a 20% chance of survival. That period was one of the hardest our family has ever faced. Today, though, we can enjoy meals out, travel together, and cheer for Ryan at his games—things that once felt impossible.

Dialysis is still a major part of our routine—we do it almost every night for four hours. Over time, we’ve learned how to help Chris stay as healthy as possible: looking good and, more importantly, feeling his best. It takes consistent effort and learning to listen to his body. Nighttime dialysis works well for him; for me, it means late nights. But it’s a sacrifice I’m proud to make so Chris can remain active and engaged in family life.

Chris gives his all each day—whether that’s masking how he truly feels or choosing joy. He loves being social and around people. That doesn’t change.

Here are a few photos of Chris from our family vacation to Myrtle Beach this past April—just us soaking in some joyful, dialysis-free moments.

But while we celebrate how far he’s come, the reality is clear: Chris still needs a kidney. Kidney failure is progressive and degenerative. Dialysis supports him, but it can’t fully cure him.

🌟 How to Help: MGH Kidney Transplant

If you’ve ever considered being a living kidney donor—or just want to learn more—you can reach out to the Mass General Hospital Transplant Center, one of the largest and most experienced living-donor kidney programs in New England  

☎️ Phone: 877‑644‑2860
🌐 https://www.mghlivingdonors.org/?utm_source=chatgpt.com

Even sharing this message helps. 💚

05/29/2025

Update:
Today brought some disappointing news. We met with the cardiac catheterization surgeon, who explained that after next Friday’s procedure, there will be at least a three-month wait before Chris can be added to the transplant list. Based on his review of Chris’s tests, the surgeon expects that a few stents will likely need to be placed, though he won’t know for sure until the procedure. In the best-case scenario—if no stents are needed—Chris could be cleared sooner, but that outcome seems unlikely.

Another concern is his hemoglobin level, which is currently at 7.5. He needs to be above 8.0 to proceed with the procedure. They’re considering a blood transfusion beforehand to bring the level up, but it’s still uncertain whether that will happen. We won’t know until the day of the procedure if it will need to be postponed. Naturally, we want Chris to be in the best possible condition for this.

We’re just ready to close this chapter. Dialysis controls our lives—every plan we make has consequences. Either Chris is hooked up to the machine into the early hours of the morning, or he does dialysis early and feels completely drained. Our son, Ryan, has taken on responsibilities no child should have. He helps set up the machine every day. Some nights, he lets me rest while he helps his dad get hooked up, and I’m up again at 1 or 2 a.m. to take Chris off the machine.

Please continue to share Chris’s story. His best hope for a long and healthy future—without the risk of returning to dialysis—is a living donor. Your support means the world to us. 💚

Living donor link 👇
https://www.mghlivingdonors.org

05/17/2025

We just got told he can start having people worked up for living kidney donation. This is Chris’s best bet due to all of his health complications. All inquiries are anonymous! Even if you can not donate please share this post. If everyone in the group shares this post he has that much more of a chance. One thing we have learned through this process is you never know what could happen.

Please share this post 🙏💚

05/07/2025

We had a great, but busy weekend. We had a graduation party for my cousin and Ryan’s confirmation. Chris missed the graduation party so he could rest and be ready for the confirmation the next day. The weather was amazing!

We just go off dialysis so I figured I would give an update on transplant for Chris. It’s always hard for me to go right to sleep after getting him off his machine. He has been in the readiness stage of transplant at MGH for a few months now. This stage is where they do a lot of tests to make sure he is in his best health for transplant. With this stage there has been a lot of ups and downs.

We were initially excited and naively optimistic that transplant would be soon. With lots of tests come lots of issues and more tests. When one issue arises we would “fix it” go for the next test and find something else. The next issues is his heart. He will be fine, there are no major issues just things that need to be fixed. He had a heart CT. They found a lot of plaque is his arteries and some spots with severe blockages. They are going to do a cardiac cath. I am told it’s invasive, but not a huge deal if that makes sense. This is when they take a thin tube and insert it in the blood vessels guiding it to the heart. They will goin 1 of 3 places wrist, arm, or groin. They can then see the structures, vessels,and then open up any blockages. They will put in any stents and preform angioplasty as needed. Supposedly this is the last procedure before he is presented to the team. We will believe that when we see it.

Chris has been through a lot over these last 6 years. Hopefully this really is the last procedure and the next big hospital procedure is transplant. Wishful thinking! He is feeling defeated, tired, overwhelmed, and hopeful. He puts on a happy face and pretends to feel good. He pushes himself farther than he should sometimes because he wants to be involved in all family things.

I do believe if all goes well the next post will be how to be a living donor. I just have to figure some more things out. Please continue to share his story! 💚 Now hopefully time for bed 😴

04/25/2025

We made our way down to Myrtle Beach this week. We had one of the best trips in a while. We stayed right on the beach and just relaxed all week.

I was nervous heading into this trip. Last trip was so bad February 2024. That was the start of the nightmare we encountered last year. Chris wanted to go away the last trip he was so sick, he was feeling better and thought he could do it. Hopefully this is the last trip beforere we get a kidney. It seems everytime he takes a test that opens the door to another one.

Going away for us is not easy or cheap. We need to plan well, we can’t just pick up and go. We need to make sure we get the trip insurance. We need to make sure we have all the dialysis supplies needed, we need permission from his medical team, we need to bring the machine. That machine in itself is 80pounds. The supplies are over 100 pounds. Then we need a car, a scooter for Chris to get a round, we need larger accommodations because of all the supplies needed. For these 4 days we needed 12 boxes of dialysate alone. Takes up a lot of space.

I say all of this just to give a small insight of what life with dialysis is. We are lucky we can do this traveling. It looks different, Chris is learning that he needs to slow down and not push himself if he can’t physically do it. That’s what happened last year and it was a disaster. This time we rested when needed and we went when we could. Today we make the 14hour trip home! Overall great trip, I’m glad we could do this!

As always please continue to share his story! Once he is through the readiness part of testing we will be asking for people to “share their spare” so we can change our lives forever. 💚

04/16/2025

This statistic is crazy! I can’t believe that in this day and age there isn’t a better system!
Keep sharing Chris’s story and this page. Hopefully soon we will be ready to accept kidney offers. 💚

Learn how the NKF Innovation Fund is supporting groundbreaking kidney transplant technologies.

04/01/2025

💚As March is ended… National Kidney Disease month. We have a lot of emotions flooding over us. We look back to last March from beginning to end, where Chris was so sick we didn’t know 1 what was going to happen to him and 2 he didn’t know how much more he had left in him. Spending weeks after weeks in and out of the hospital and months on months not being able to get off of the couch due to calcifilaxis.

This time last year we decided to go public with what Chis was actually going through. We wanted to bring more awareness because within all of the bad, hope was brought back into our lives. Please keep sharing this page, so when he is ready we can get him the best result possible.

We are in a different point in our life now, but still not where we hoped to be. We know he will be transplanted, but don’t know when! Everytime we think we have everything checked off of the list. The team wants something new. We have about 3-4 more things to do since the last time I wrote an update. Specialists to see, vaccines to get, tests to be done. Everything takes time! We know he needs to be in his absolute best, but we are waiting for the day he is not tied to the machine to live.

Dialisys is hard, it’s exhausting, expensive and it is difficult to understand if you are not living it. We try not to dwell or feel bad for ourselves. We know we are lucky in so many aspects of life.

03/25/2025

We had two days of appointments for Chris Phinney. They went well yesterday they decided to not do any more procedures on his fistula for now. They wanna see what’s going to happen with listing. We will just keep revising it for now as needed. They don’t wanna add for an objects inside his body if it’s unnecessary and he is getting a kidney quicker than later.

Today was the long day we were at MGH from about 10 to 5. We met with all the all the people from case manager, nurses, nutrition, pharmacy, social worker and doctors. Everyone is in agreement that it is time for Chris to get a kidney!

He has to wait four weeks from today because he got his second MMR shot and hepatitis A vaccine. These are live vaccines injected into the body to create antibodies.

The biggest hurdle is the wound that he currently has from the last procedure. That needs to heal fully before we can be listed actively. With that said it’s already made huge progress since Thursday of noticing it. Luckily Friday, the surgeon fit us in to look at it and tell us how to take care of it. So without getting too graphic I pack it twice a day, cover it with gauze, and add a zero form dressing to the unopened spots.

Then there are minor things they need to figure out such as allergy testing, because apparently they use something from rabbits and he’s allergic to rabbits. Ultrasound his thyroid, because he had an enlarged lymph node in his thyroid. They just want to check make sure there’s nothing infectious about that. They wanna look into changing him from Eliquis to warfarin, but that could have complications that we don’t want such as the recurring calciphylaxis.

The bottom line is everyone wants Chris to have a kidney. They know how hard he has worked to get to this point. This is the farthest we have ever gotten in this journey. It looks like in the next 4 to 6 weeks as long as everything goes the way it should go, maybe fingers crossed he is presented to the committee.

As always thanks for reading this post and continue sharing his story, because we are so close!

03/21/2025

I’ll start with the positive news. The cardiologist cleared Chris for transplant. So, as long as the transplant team agrees next week. He will be all set!

We have learned that it can be a worry free day. Unfortunately the surgical site from his last surgery has opened up, is discharging, and is very painful. Walking is hard for him. Luckily we were able to be squeezed in tomorrow after work in Waltham for the doctor yo look at it. Hopefully there is no infection! First, Chris does not do with infections. Next, if he has an infection he can not receive a kidney.

So, we were driving feeling bad for ourselves. Worrying sbout what was going to happen. We spotted this area in braintree. I had Chris pull over. Whenever we need a sign they pop up. This person sadly passed away, but was anle to save 5 people. This brought everything back to perspective! We know that Chris will get his kidney when it’s time.

03/03/2025

💚Chris has an appointment at the end of the month with his team.
Prayers they say he’s ready 🙏
Please keep sharing his story!🥰
National Kidney Month

02/23/2025

We received some positive news this week. Chris is now able to begin the “readiness process” for kidney listing. This means that once all the necessary tests are completed, he’ll be eligible to accept offers for a kidney transplant. This is the furthest we’ve come in the process so far. It’s been 6 years since his diagnosis and 5 years and 8 months on dialysis. While it will likely still take several months before he’s actively listed and can receive a kidney, it could happen sooner. As always thanks for the thoughts and prayers. Keep sharing this page he’s getting closer! 💚

02/18/2025

We are in need or prayers and positive thoughts. Chris is fine, we just got off of the phone with his transplant nurse. She is going to present him to the team tomorrow for listing. This is the next step in the process. So after the meeting with his team tomorrow he will either be listed inactive or deferred. There really isn’t much of a difference just wording. She is hoping for listed inactive and we can get the readiness testing ASAP. We will spend the day at MGH meeting with doctors and surgeons deciding what tests he needs to be actively listed. We know he will need and updated EKG and stress test and hopefully there won’t be much more needed. This is farther in the process than we have gotten in tge last 5 years 8 months, so hopefully we get good news and then he is listed actively quickly. She said she will let us know on Thursday how the meeting went tomorrow!

Thanks for keeping Chris in your thoughts. Keep sharing this page. When we are ready for living donors we will post all of the info on this page. Please keep sharing! 💚