Steph Needs A Kidney

08/01/2024

Hi! I have been meaning to post for a while now, but man, is it hard to keep up with everything-especially around the holidays!

New posts coming soon! In the meanwhile:

- the med adjustment worked and the numbers are back to my normal range (BIG RELIEF). Details on that soon.
- World Kidney Day has a new site with an informative quiz to test your knowledge!

World Kidney Day 2023 – Take our fun quiz! How much do you knowabout kidney health?

03/10/2023

Hi. I wish I could tell you that the numbers are holding, but they are not. The numbers are not fine. A few are up from where they typically are, and some are down. What does this mean? We are not sure. It could be a one-off. A fluke (the human body is a strange thing).

So, what now? We adjusted my meds, and I will get more bloodwork done in two weeks to see if it was indeed a fluke.

I really hope it was a fluke.

HOW YOU CAN HELP:
1. If you are considering becoming a living donor, please click the last link below.
2. Share this post to help expand my reach.
Thank you.

CLICK HERE TO…
See my donor story | Ambassador stories. https://bit.ly/StephDonorStory
Like and Follow my page. https://bit.ly/StephKidneyFBpage
Fill out the questionnaire link to find out more about becoming a living donor. https://bit.ly/KidneyDonorQuestionnaire

28/09/2023

I got my blood drawn this morning. It’s been a couple of months since I’ve had blood work done and I enjoyed my little respite. My doctor’s appointment is on Monday. I am sure my numbers are fine, but I will check my email repeatedly until I get the results. I will be distracted. I will preemptively second-guess all my choices. This is how it goes every time.

I had to take the dog to the vet this afternoon for a post-surgery checkup. He passed with flying colors. But because my blood draw was in the morning, his appointment was in the afternoon, and I have too much vacation time, I took the day off and filled it with errands and other to-dos that have been languishing on a list. We also get a hike in there. That bit was lovely. The rest was inconvenient, crowded, and noisy.

Here’s what I can tell you definitively. And those who have followed these little check-ins have heard this before. The art is better at the vet’s office. The whole experience is better at the vet’s office. He gets peanut butter as the vet checks him out while sitting under an adorable painting of a cat in a helicopter hat. No one is giving me distraction snacks while they examine me. And there certainly aren’t any cat paintings in sight. I am not ashamed to tell you that a nice kitten picture and a bit of peanut butter on a stick would also work on me. I think doctors of all varieties should look into this. It could revolutionize the US healthcare system.

We’ll know on Monday if there are any changes to my numbers. Until then, doesn’t anyone have a distraction snack?!

HOW YOU CAN HELP:
1. If you are considering becoming a living donor, please click the last link below.
2. Share this post to help expand my reach.
Thank you!

CLICK HERE TO…
See my donor story | Ambassador stories. https://bit.ly/StephDonorStory
Like and Follow my page. https://bit.ly/StephKidneyFBpage
Fill out the questionnaire link to find out more about becoming a living donor. https://bit.ly/KidneyDonorQuestionnaire

17/09/2023

Hi. There are a few very good, very prevalent questions that I want to answer. This has been a big learning curve for me, and a lot of information can be a little overwhelming, so I figured we would start with the 3 biggest ones most of you are asking.

1) What blood type are you? We have to be the same blood type, right?
I’m happy to tell you my blood type, but that doesn’t necessarily matter if you’re considering living donation. A living donor is matched across three main blood tests - blood typing, tissue typing, and cross-matching. But, if you’re not a match for me, you could be a match for someone else resulting in a “paired kidney exchange.” Yup, it’s a swap. They would get your kidney and I would get their donor’s kidney. We switch at the same time during a scheduled surgery. Yup, it’s weird, but like, in a good way. In a saving lives kinda way.

2) Am I too old to give a kidney?
Probably not. The transplant team takes every precaution when it comes to the health of a living donor. There are a variety of health tests that would be performed to ensure that you’re healthy enough to become a living donor and age is one of the many factors, but it’s not the only factor. The oldest person to become a living kidney donor was 84. He donated one of his kidneys to his 72-year-old neighbor at Houston Methodist Hospital. https://www.tmc.edu/news/2019/05/an-84-year-old-man-becomes-oldest-living-kidney-donor-in-the-united-states-at-houston-methodist-hospital

3) What if I click the “fill out questionnaire” link or button on your donor page and I change my mind or find out that I am not eligible at some point during the process?
The fear of awkwardness is real. And this is the hugest of asks. There are so many factors that go into something like this. So, I want to just say just two things about that. Firstly - THANK YOU. I think it’s amazing that you even clicked the button to fill out the form to learn more about the process. Secondly, It’s 100% volunteer and confidential. I will not know about it unless you want to tell me yourself or decide to let me be informed. If you get 10% into the process or 90% of the way though and something changes for you, or you’re found to be ineligible – it’s OK. It’s more than OK. You’re still the amazing person who clicked that link to find out more. That link is right here BTW. https://jhmi.co1.qualtrics.com/jfe/form/SV_8jqIDdm2KV3sQdv

HOW YOU CAN HELP:
1. If you are considering becoming a living donor, please click the last link below.
2. Share this post to help expand my reach. You can share it to your feed, in a group you’re a part of, anywhere and everywhere.
Thank you!

CLICK HERE TO…
See my donor story | ambassador stories. https://bit.ly/StephDonorStory
Like and Follow my page. https://bit.ly/StephKidneyFBpage
Fill out the questionnaire link to find out more about becoming a living donor. https://bit.ly/KidneyDonorQuestionnaire

Steph is using DONOR to share their story of kidney disease and find a living donor. Help save a life by viewing and sharing their story today!

11/09/2023

Hi. It’s been more than a minute since I posted. A few people reached out to me to ask for any updates (thank you) which prompted me to sit down and try and to gather my thoughts.

Firstly, I am ok. My numbers are still holding as of my last check-in, which are now 3 months apart (my next one is in early October). Basically, I am just hanging out waiting for a living donor. As a reminder, I am on a deceased donor list, but I am about 6 months into that 5-year long waitlist and a deceased donor kidney is not nearly as good. I guess beggars can’t be choosers, but here I am anyway…

It's been a little over a year now since I created this account and first posted. A year of tests, trying different medication combinations, anemia shots, and blood draws – so many blood draws. The first 6 months truly felt like chaos. I didn’t know what was happening. I felt betrayed by my body. Everything was in flux, and I had so many internal rationalizations trying to get to a point where I would be strong enough and brave enough if I had to go on dialysis. I looked up the numbers, trying to make sense of what was happening and what I would do. But it didn’t help. No one I knew personally was dealing with this. It was just me and I felt so alone. I was scared.

We all know we are not going to live forever but when you find out that you could have checked out at any moment… it makes you examine your life. Your choices. It makes you live in the moment. It makes you feel the sun on your face and hear the wind in the trees. You let go of regrets. You plan that trip you keep putting off. It makes you forget all the stupid, small, petty things and focus on who and what really matters.

And those 6 months passed, and things evened out. I was still scared but I was also hopeful. We figured out my meds and my numbers have held for the next 6 months. And I wait for a kidney.

In 2022, a total of 25,499 kidney transplants were completed in the United States. As of February 2023, 88,658 people were on the waiting list for a kidney transplant in the United States. (source: NIH) I am one of those 88,658 people. I have no idea who any of the rest of them are, but I can tell you that all 88,658 desperately want to be in the stat about the completed kidney transplants instead. And we are scared. And hopeful. And we wait.

NIH Source link: https://www.niddk.nih.gov/health-information/health-statistics/kidney-disease #:~:text=Nearly%20808%2C000%20people%20in%20the,31%25%20with%20a%20kidney%20transplant.

HOW YOU CAN HELP:
1. If you are considering becoming a living donor, please click the last link below.
2. Share this post to help expand my reach.
Thank you!

CLICK HERE TO…
See my donor story | Ambassador stories. https://bit.ly/StephDonorStory
Like and Follow my page. https://bit.ly/StephKidneyFBpage
Fill out the questionnaire link to find out more about becoming a living donor. https://bit.ly/KidneyDonorQuestionnaire

Register to be a living kidney donor at Johns Hopkins.

17/07/2023

I am celebrating a little win today! I had an appointment to see if I needed to get a shot to help me combat anemia. It’s a common side effect of chronic kidney disease (CKD). Once a month they draw blood to see my hemoglobin levels. If it’s low (below 10), they give a shot of Aranesp.

It’s been a while since I actually needed a shot and today was the same. I was at 11.1. They called my nephrologist (kidney doc) and asked if we could push out the appointment from monthly to every 2 months since I was consistently at 10 or above. My doctor said that I could stop my regularly scheduled anemia appointments altogether! We will monitor during my regular check-ins and reevaluate when needed.

Is this great news? Yup. Do I still need a kidney? Also yup.

HOW YOU CAN HELP:
1. If you are considering becoming a living donor, please click the last link below.
2. Share this post to help expand my reach.
Thank you!

CLICK HERE TO…
See my donor story | Ambassador stories. https://bit.ly/StephDonorStory
Like and Follow my page. https://bit.ly/StephKidneyFBpage
Fill out the questionnaire link to learn more about becoming a living donor. https://bit.ly/KidneyDonorQuestionnaire

17/07/2023

Nearly 100,000 people are waiting for a kidney transplant. We believe that everyone who needs a kidney should be able to get one. We are fighting for . https://bit.ly/3MzoTl3

16/07/2023

Hi. It's been a minute and I need to provide a more detailed update beyond "the numbers are holding" (they are), but I came across this video and needed to share. Everything Hank Green says here resonates and can be applied to almost anyone you know who is living with illness.

Oh!! And one more thing you can do…help the helpers. Whether that’s fun self-care products or reaching out to say you love them and they’re doing a great job...

19/04/2023

Hello! I had a wellness appointment this week with my general practitioner.

It's been a year since I bugged her last and since I am more than just my not-so-great kidneys, it's important that I get my annual checkup. We talked about the kidneys (obviously), but they were just a part of the overall health discussion. Everything else is looking good. Also, their artwork is slightly more interesting (see picture).

When was the last time you went to see your doctor? Annual wellness checkups are so important. You never know what you might be able to catch early or prevent all together.

Schedule the appointment and then share the waiting room art with me.

29/03/2023

NEW VIDEO! THE LIVING DONOR DECISION PROCESS

This is the last video in the series I’m sharing for National Kidney Month. This 3-minute video gives an overview of how the living donor process works and the donor options available. Living organ donation is a huge decision, which is why someone considering the gift of donation is giving the time, space, and information to make the decision anonymously. Check out the video for more information.

HOW YOU CAN HELP:
1. If you are considering becoming a living donor, please click the last link below.
2. Share this video to help expand my reach.
Thank you for watching!

CLICK HERE TO…
See my donor story | Ambassador stories. https://bit.ly/StephDonorStory
Like and Follow my page. https://bit.ly/StephKidneyFBpage
Fill out the questionnaire link to find out more about becoming a living donor. https://bit.ly/KidneyDonorQuestionnaire

17/03/2023

NEW VIDEO!

This 2-minute video covers the difference between a living and deceased donor and why finding a living donor is so important.

How you can help:
1. If you are considering becoming a living donor, please click the last link below.
2. Share this video to help expand my reach.
Thank you for watching!

CLICK HERE TO…
See my donor story | Ambassador stories. https://bit.ly/StephDonorStory
Like and Follow my page. https://bit.ly/StephKidneyFBpage
Fill out the questionnaire link to find out more about becoming a living donor. https://bit.ly/KidneyDonorQuestionnaire

15/03/2023

Are you at risk?
Answer a few simple questions to find out if you are one of the 33% of adults in the U.S. who is at risk for kidney disease.

Take the 60-second quiz to find out if you’re at risk for kidney disease.

09/03/2023

Happy World Kidney Day!

World Kidney Day is a global campaign aimed at raising awareness of the importance of our kidneys. The mission of the day is to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.

Kidney diseases are silent killers, but there are several easy ways to reduce your risk of developing kidney disease.
1. Keep fit and be active
2. Eat a healthy diet
3. Check and control your blood sugar
4. Check and control your blood pressure
5. Take the appropriate fluid intake
6. Don’t smoke
7. Don’t take over-the-counter anti-inflammatory (pain killer) pills regularly
8. Get your kidney function checked if you have one or more of the high-risk factors (Diabetes, Hypertension, Obesity)



Please share this post to help share this valuable information with friends and family.

06/03/2023

As part of my journey to find a living donor, I had the opportunity to sit down and record my story with the help of a talented friend. This is the first video in a short series that I shared back in December. I am sharing it here again for National Kidney Month.

And since I cannot take myself too seriously even when my quality of life is the subject matter – check out the bloopers at the end. Thanks for watching.

How you can help:
1. If you are considering becoming a living donor, please click the last link below.
2. Share this video to help expand my reach.
Thank you!

And a very special thank you to my friend Ali who donated her time and expertise to create these videos.

CLICK HERE TO…
See my donor story | Ambassador stories. https://bit.ly/StephDonorStory
Like and Follow my page. https://bit.ly/StephKidneyFBpage
Fill out the questionnaire link to find out more about becoming a living donor. https://bit.ly/KidneyDonorQuestionnaire

02/03/2023

As a new Congress begins, please help to remind our elected officials about the importance of supporting policies that will help our community and promote better kidney health for all Americans. These priorities include:

1. Increased funding for kidney disease awareness, early detection, screening, research, and innovation
2. Eliminating discrimination against living organ donors in the procurement of life, 3. disability, and long-term care insurance
Improving access to home dialysis for patients that want to use it
4. Promoting additional oversight, transparency, and accountability in our country’s organ procurement and transplantation system

Click the link to send the letter!

As a new Congress begins, we need kidney community members to remind their elected officials about the importance of supporting policies that will help our community and promote better kidney health for all Americans.

01/03/2023

March is National Kidney Month, and it’s a great time to focus on YOUR kidney health!

*Click on this link to learn how kidneys work.* https://www.kidney.org/atoz/content/howkidneyswork


Want to follow my kidney journey? CLICK HERE TO…
Watch my video. https://bit.ly/FBvideopost
See my donor story | Ambassador stories. https://bit.ly/StephDonorStory
Like and Follow my page. https://bit.ly/StephKidneyFBpage
Fill out the questionnaire link to find out more about becoming a living donor. https://bit.ly/KidneyDonorQuestionnaire

Although they are small, your kidneys perform many complex and vital functions that keep the rest of the body in balance.

11/02/2023

Hi! It’s been a minute and I hope you’re all doing well. Last week I had my latest appointment with my nephrologist (kidney doc) and my numbers are holding strong. (I hope you’re not getting tired of hearing the same good news. I’m certainly not but I am biased). I haven’t seen him since early December (don’t worry, the art in the waiting room didn’t change). I still get monthly blood draws to check my numbers, but since we have a much better understanding of my function and rate of decline, we are now meeting in person every 3 months. So, what does this mean—Do I still need a kidney? The short answer will ALWAYS be YES. My numbers are good for someone with stage 4 kidney disease, not good compared to someone with normal function. I am walking the line—hovering just above the range where we would have to consider other treatments like dialysis. How long could I hover above? Who knows. We are hopeful but mindful. It colors everything I do, everything I eat, and everywhere I go. Everything.

I also happened to have my anemia shot scheduled for the same day, so we grabbed a quick lunch and then I was right back at Good Samaritan for that appointment. Anemia is a common side effect of CKD (chronic kidney disease) and once a month they test my blood to see my hemoglobin levels. If it’s under 10 mcg, they give a shot of Aranesp. That's the brand name of a man-made form of the human protein erythropoietin. It stimulates bone marrow to make more red blood cells. I was at 10.6 so I didn’t need the shot.

I mentioned the waiting room art and although I am a creature of habit, I sat in a different seat at both appointments so I could get a shot of the other bad art on a different wall. That was hard for me, but I am growing as a person. Ok, so the one image at the anemia shot is really just of notices, but it’s still unpleasant to the eyes. See below for those images and for all the links to the various very important things.

PS. March is National Kidney Month and I plan to share info about keeping your kidneys healthy and of course, ways you can help me and others facing kidney disease.

How you can help right now:
3. Share this post on your socials to help me find a living donor.
4. Click on the last link below to find out more about becoming a living donor. It’s free, anonymous, and with absolutely no obligation. You can change your mind at any time.

CLICK HERE TO…
Watch my video. https://bit.ly/FBvideopost
See my donor story | Ambassador stories. https://bit.ly/StephDonorStory
Like and Follow my page. https://bit.ly/StephKidneyFBpage
Fill out the questionnaire link to find out more about becoming a living donor. https://bit.ly/KidneyDonorQuestionnaire