The Nutcracker Syndrome podcast

Welcome back to the NCS Podcast! In this episode, much like episode 14 where I explored the potential link between vascular compressions and hormone health, I’m taking a deeper dive into how these compressions might also impact our dental health.

Personally, when my vascular symptoms first began—before we even knew they were vascular-related—I started to notice a decline in my dental health as well. Now that I’m on the other side of my kidney autotransplant, I’m starting to connect the dots. That major decline in my oral health was likely the result of several vascular compression complications: reduced blood flow to my teeth, side effects from medications, malnourishment due to appetite issues and frequent vomiting, and even radiation exposure.

I felt this topic deserved its own episode because dental health is yet another area that can be affected by vascular compressions—often without us even realizing it. And while I know you have a lot on your plate, don’t forget to keep up with your bi-annual dental checkups. Staying proactive can go a long way in helping to mitigate the dental effects of these complex conditions.

As mentioned in this episode, I use the Sweetguard nightguard (lower, 2mm option). While they are middle of the road as far as price goes, I have truly enjoyed this product as it doesn't feel like I have something in my mouth at night; it doesn't impact my sleep quality. Here's the link for those interested: https://sweetguards.com/?srsltid=AfmBOooDa4Sq_RPJh4vxys5Nfwa-zHNz8-NFMOoAJe9Qmj2wJRgiaecr

Welcome back to the NCS Podcast! I’m super excited to share this episode with you—it features our very first guest on the show: Tracey Rupp, a Registered Dietitian who specializes in kidney health. And, I must say, you’re going to want to listen all the way through, because this episode is packed with valuable, practical information that I think will help all of us navigate the chaos of Nutcracker Syndrome a little more smoothly.

Tracey is not only a longtime friend and colleague, but also someone who really did her homework when I invited her to join us. She took the time to research Nutcracker Syndrome and brings both foundational and specialized knowledge to the table. Here’s a quick overview of what we cover in this episode:

• The difference between a Registered Dietitian (RD) and a Nutritionist—and why it’s important to work with an RD
• Feeding tubes and when they’re considered
• Gaining weight as a possible way to help increase the fat pad between the aorta and the SMA
• Nutritional strategies for before, during, and after NCS surgery
• How to find a RD + tips for navigating insurance + red flags to watch for when vetting an RD

• Key lab values to keep an eye on

If you’re interested in working with Tracey, you can reach her on Instagram at @rupp.nutrition or by email at [email protected].

As mentioned in the episode, here are a few additional resources to help you find a Registered Dietitian in your area:

• https://www.eatright.org/ – The official website of the Academy of Nutrition and Dietetics
• https://www.healthprofs.com/country-selector – Choose which country in which you are located. Then click the “Nutritionist/Dietitian” link on the main navigation pane. From there you can insert your zip code, making sure you are looking for someone with an “RD” credential.  
• You can also check with your insurance provider to see which RDs are in-network
• Or ask your specialist/primary care doctor for a local RD referral they trust. 

Welcome back to the NCS podcast! This episode wasn't originally on the docket but after my hormone specialist appointment yesterday where we spoke more intimately about the relationship between hormones and endovascular, I felt it was a pertinent topic to discuss with you all.

As a friendly reminder, nothing on this show, including this episode, is providing you with medical advice. Rather, I simply share my lived experience navigating the vascular compression space + some of the things I have learned from the conversations with various doctors. Dr. Kelle Oberle is my hormone specialist; she is wonderful. In our conversation yesterday, which is what I detail in this episode, we explored the relationship with hormone health and endovascular--how our hormones do play a role as it regards vascular integrity. I hope this information helps you feel more empowered to navigate this journey in the best way that suites you. If you have any thoughts, please don't hesitate to drop a comment on this episode to help continue the conversation.

Welcome back to the NCS podcast. In this episode, I offer a very real + very justifiably feral reaction to some of my frustrations with radiologists as I have navigated the NCS landscape. I share my most recent run-ins with vague radiology report readings & overall want to start the conversation given that many others have reached out--in my social media ramblings--with similar frustrations.

As always, you are welcome to share your lived experience in the comments + notes ways in which we can better advocate for ourselves in this space. Because I refuse to continue to just be a number. Big hugs to us all!

Welcome back to the NCS podcast! I was stoked to get this episode request as it's such an important topic, which is why it's the longest episode yet. I not only share my lived experience with social support through my NCS process in this episode, but I also go full professor mode sharing the research regarding social support as it pertains to "injury", which, in this case, regards being diagnosed with and subsequently treated for NCS.

As a friendly reminder, I am also a sport psychology professor. Prior to becoming a professor, I worked in an applied setting doing mental performance consulting with injured athletes. While NCS is not a sport-specific injury, the research pertaining social support within that space applies here. In this episode, I provide more specifics on how the social support person's personality, history of stressors, and coping mechanisms might interact with that of the NCS patient's. What you can do to act as a buffering effect for the NCS patient. And, in what ways you can approach the conversation on how best to support the NCS patient. As always, if you have questions and/or additional information to share, please leave a comment.

Welcome back to the NCS podcast.  In this episode, I want to provide some additional details on ways to ease the financial burden of what you are going through. For many, you have to travel to see a specialist, but rest assured! There are travel options for you that can help cut costs. I offer more details about each of the below option—things to know when navigating each organization—but I wanted to offer the links to their respective websites for your convenience: 

• Flights:
  • Angel Flights: https://angelflightwest.org/
  • Angel MedFlights: https://angelmedflight.com/
  • Lifeline Pilots: https://lifelinepilots.org/patient-information/service-area/
  • Mercy Medical Angels: https://www.mercymedical.org/request-assistance
• Hotels/Housing:
  • The below option were the more financially affordable options provided to me for my stay at UWHealth in Madison, WI; thus, these will not be applicable to you if you are not consulting and/or having surgery at UWHealth. 
    • Best Western Plus InnTower Madison: 2424 University Avenue, Madison, Wisconsin, 53726
    • Restoring Hope Transplant House: http://www.restoringhope.org/

As always, if you have other recommendations that I did offer on this episode and/or want to offer details on financially affordable options when visiting another NCS surgeons, please drop those tidbits in the comments! Big hug!

Welcome back to the NCS podcast! In this episode, I dive deeper into how to prepare for your inpatient stay, covering important topics like visitor hours, the food menu, what to bring with you, and more. Toward the end of the episode, I also share a few personal insights—what proved helpful for me and things I wish I had considered after being discharged from the hospital.

Please keep in mind that this is based on my own experience during my inpatient and post-op journey with UWHealth in Madison, WI. I encourage anyone with additional advice or tips to share their thoughts in the comments. These episodes are just the beginning of a larger conversation, and I hope we can all contribute to it! Sending big hugs to everyone! :)

Welcome back to the NCS podcast! I want to thank everyone who has tuned in to listen to my ramblings for the first couple of episodes. This was the first request I received, which jogged my memory in that, "Yes! I did do a nuclear medicine scan, and I completely forgot to talk about it on this show". So here we are! Even more reason why I appreciate all the feedback/requests you all have provided me.

In this episode, I will provide some details on the nuclear medicine scan. I discuss what it is, why it's used for NCS, and the ins-and-outs of the scan from start to finish. Overall, it's a fairly easy scan that I felt was the easiest to complete; however, there are some things I shared in this episode that I wish I would have known before I arrived. I hope this is helpful for you! If you listen and note that your experience was different from mine, not hesitate to leave a comment on this episode to share how your scan was different. Big hugs!

Welcome back to the NCS podcast! As an extension of episode 7, I wanted to zoom in on the initial consult I had with UWHealth in Madison, WI as this was a *F U L L* day of appointments/scans (9am - 3pm). As stated throughout all the episodes, I share my lived experience; thus, how the initial consult went for me isn't the same as how it goes for others. There are some that have other scans scheduled during their initial consult such as first-time and/or repeat venograms + the renal hilar block. While my initial consult might be different from yours, I provide a little more detail into some of the components that could be on your schedule (i.e., meeting with social work, nutrition, and the CTA) to help you prepare for those meetings.

As always, if you have additional information to share, you are more than welcome to leave those in the comments! I would love to hear about your lived experience and how it might have differed from mine. Big hugs to us all!

Welcome back to the NCS Podcast!

In this episode, I take a deep dive into all things kidney autotransplant—the surgery I personally opted for. As of this recording, I’m three months post-op. My surgery took place on December 19, 2024, at UW Health in Madison, WI, with Drs. Foley and Phillips, with Dr. Foley as the primary surgeon on my case.

In the first half of this episode, I break down what a kidney autotransplant is and why someone might choose this route. I also explore alternative surgical options for those who may not find transplant surgery to be the right fit. Along the way, I take a side-quest into the way surgeons often cite "success percentages" without fully explaining what those numbers actually represent—and why they can be misleading. Many patients don’t return to their original surgeon when a surgery fails, meaning those failure cases often go unreported. This is why I strongly advise steering clear of surgeons who use these stats to bolster their own egos rather than providing a full picture of the risks and outcomes (12:54 - 18:55 time stamp).

In the second half of this episode (starting at the 21:26 time stamp), I dive into the kidney autotransplant journey in detail. I walk you through the process of securing an in-patient appointment at UW Health, the surgery itself, and what you can expect—from anesthesia to the in-patient experience. I also share some unexpected aspects of my own recovery. My hope is that this information helps you (a) ease any anxiety you might have and (b) equip you with the right questions to ask your surgical team, so you can make the best decision for your own health.

Thanks for tuning in—I hope you find this episode insightful!