I Treated Iliac Vein Compression for Years. Then I Became the Patient.

[00:00:00]In 2023, I was one of the first people we ever scanned for iliac vein compression, and the report came back normal. So, I kind of moved on with my life. For the next three years, my patients would sit across from me describing shortness of breath, chest pain, [music] crashing after any little activity. And I'd nod because I treat this every day and I know it by heart.

[00:00:20]And then one day, it hit me. They're describing my symptoms, [music] every single one of them. But what I found and what happened after we fixed it has changed [music] everything. The whole story on this episode coming up on the long haul with Summer.

[00:00:41][music] So, welcome to the long haul of summer where we're talking about real stories, real solutions, challenging traditional health care, and talking about innovative care. Today, I am so excited to be back finally. It's been several months, I know, since I've talked to each of you. And what I'm here to do today is kind of catch you up on my journey and tell you kind of where I've been and what I've been doing and the ups and downs um along the way. Um the one thing I do want to say um first is thank you for your patience and thank you for your consistency and still following us. Um thank you for all the many people who have reached out to me.

[00:01:32]Um, so many people that follow this podcast and patients and friends and family um, have reached out to me along this journey and kind of um, cheered me along, asked questions, you know, checked in and I really appreciate that.

[00:01:45]Um, and your patience as we weren't actively pushing content out to you, but kind of revisiting some of those things we have done. Um, so I kind of want to back up and tell you where I've been, what I've been doing, how my journey um, has been going for the last several months. Um, I did uh have a video that I just want to kind of remind you guys about right before I went out that kind of explained um why I was feeling sick and kind of what was going on with me.

[00:02:10]But I'm going to back up to August of last year. So currently it's July. That is almost a year ago. Um I was doing really well um last summer. I was probably in the best health and shape that I have been since um co I was working out like twice a day, walking, working out in the mornings. Felt good.

[00:02:31]I was playing on a community whiffle ball team. I was up every day all day doing things with my daughter, my family, um traveling, all the things. Um the last weekend, I think it was of August, um I took a metabolic crash. Um, for those of you who don't know, I've had some trouble with metabolic issues ever since COVID. Um, early on I had some insulin resistance and then over the last couple of years I've had some reactive hypoglycemia.

[00:03:02]So, my blood sugar dips a lot. Um, I actually had two trips to the emergency room over it um, a couple of summers ago and we don't really know why. I've seen the endocrinologist. I've been tested for all the things. But um periodically I will have episodes of you know hypoglycemia for weird reasons. So starting at the end of July and definitely over the month of August um when I would be outside playing whiffle ball or outside with my daughter at the ballpark, anytime I was in the heat or like would raise my heart rate or do anything kind of strenuous, my body would all of a sudden my heart would raise. uh my blood sugar would spike up to over 200 immediately and then it would just plummet and crash. Um and this kind of started a vicious cycle back um in August where you know activities that I had been doing all summer and that I was feeling really good about um doing um all of a sudden I would crash. I would be hypoglycemic and then days after that I would be in the bed um getting IV fluids and it was crazy. Um, the first crash I had at the end of August, I was in bed, I think 2 weeks. I was getting IV fluids. Um, we ran all the labs, all the tests. No one could really figure out what was going on, you know. No, hadn't really changed anything or done anything. Um, we had I had some hormonal like changes a little bit. Um, but other than that, there was nothing we could really pinpoint per se to cause this.

[00:04:32]Um, but it sort of tipped the scale for me. And then my blood sugar became really super sensitive after that. So September, October through December, um I was doing very minimal activity. Um I mean I was still working, you know, I was doing the podcast, doing all the things, but any little activity would kind of send me into this weird post-exertional malaise kind of metabolic crash. And it was very weird.

[00:04:56]Um at that point, I had to stop exercising, which I was very sad about, um because I was doing so well. Felt so good. Um, but I had to stop because I couldn't keep my blood sugar up um to exercise. I couldn't even keep my blood sugar up to get in the shower. Um, if I would go to my daughter's games to watch her cheer, I would have to take oatmeal with me or sweet potatoes. Literally eat them in the like bleachers while I'm watching her. So, I was eating every couple of hours, complex carbs around the clock. It was very strange. Um, completely decompensated, not really understanding why. And then in December, um, I actually got CO again. And I think that was my fifth time to get CO. Um, I wasn't terribly sick. I actually felt okay. Um, I did go back on my blood thinners for a couple of weeks. Um, you know, I I felt like I rebounded pretty okay after that.

[00:05:52]But then in January and the next couple of months, the crashes that I was having just got worse and worse and worse. um to the point where I was unable to go to work. Um I was unable to really do anything. If I did go, you know, with my daughter anywhere like to the ballpark, I was having to sit and kind of watch her. Um and I'm eating the whole time.

[00:06:13]Complex carbs, you know, and I I was up in the middle of the night. Um I would have to set alarms to get up and eat. Um I have a glucose monitor that I wear, you've probably seen. um it would wake me up in the middle of the night and I'd be hypoglycemic and so I was pretty much scared to move.

[00:06:31]Um so again, more tests, more labs, went back to see the endocrinologist. We're trying to figure out what's going on.

[00:06:38]Really can't pinpoint anything. So I actually traveled um in um earlier in this year with one of our other nurse practitioners who went to see Dr. Dr. Spencer in Colorado to get an iliac vein stent. Um, and while I was up there, I was up with Dr. Spencer and um, we were talking about how I was feeling and she told, you know, we were talking about it and we um, decided to look at my scan and I was one of the first people we scanned looking for iliac vein compression in 2023. And at the time um we did not have our own radiologist reading those and it was just read generically and it was read as normal and so she pulled it up with me and this was 2023 and she was like oh gosh this is not normal. Um you know it's actually quite significant and so we had a talk about it and sort of set my wheels in motion like okay is this the thing? Um, which is crazy because I'm seeing patients every day, talking to them about iliac vein compression, sending them to her, to other specialists, all these people getting stented. They're telling me some of the same symptoms that I'm having. I mean, I'm short of breath, chest pain, crashing, you know, all the things. And I guess it never dawned on me to revisit that. So, when I got back home, I talked about it with my husband. I talked about it with my care team. And um they actually ordered another scan on me. I was like, "Let me just now that we're, you know, doing the protocol better and differently, we're 3 years later, we've got our own radiologist reading them. Let's um I just want to rescan myself and just kind of see where we are." So, I got the scan and sure enough, um I had severe iliac vein compression. Shocking. Um, I also had nutcracker while my renal vein was compressed. So, I um we put in a consult just like we do for some of you to Dr. Spencer and her team and I, um, contacted her and I said, "I guess what? I guess I'll be coming back to see you. I've already been out there once, you know, with my friend and colleague um to to watch the procedure and to work through the procedure and understand and shadow and guess I'll be having my own." So, at that point, um, March, I think it was, um, I started making plans to go out to Denver, um, to get an iliac vein stent.

[00:09:09]Um, I did see them in consult. We talked about it. We looked at my scans. Um, I went back on my blood thinners, took, you know, got a bunch of blood work, kind of checked my baselines and stuff, and just to kind of prepare. Um, the weeks leading up to my stint were really, really hard. Um, the sicker I got, the more I laid around. The more I laid around, the sicker that I got. And so, and it was really hard for mentally, you know, this was my fix. And I'd been sick for months at this point and really not doing a whole lot. So, I was kind of ready um to get this done. So, we made plans to go out. Actually, um, a friend and patient of mine made plans to go with me and Dr. Spencer was going to stunt us on the same day um so that we could travel together and um so that's what we had planned. Um my stint was uh scheduled for May 7th which is a Thursday uh morning and my husband and I and my friend were going to fly out on Wednesday morning. So we had all taken off work Wednesday um and we were going to stay through the weekend.

[00:10:19]So the >> [laughter] >> Um, interestingly, um, we, um, well, let me let me do this.

[00:10:29]I'm going to show you my videos of where I started packing because I was getting ready and I was getting ready to go. So, the first video I'm going to show you, um, is what I started packing that weekend before and kind of getting ready. So, the first video um, I'll show you is now. Okay. So, I'm starting my packing and I just wanted to show you what I was including in that. Um, so first and foremost, starting with my pills for the week. I love this pill container. I think we talked about it before, but um, it has all of my pills in it for morning and night. So, making sure that I take all of that with me.

[00:11:04]Um, and it's organized so I can just grab it and go. Um, they told me some medications to hold for the morning of the procedure. So, um, I can just pop this out and take it with me and then take whatever I need to um, before the procedure and after. And so love this.

[00:11:21]Um I'm also taking ginger juice. Um I love this for nausea in case you know I have any kind of post anesthesia nausea or anything. Um also have a lot of as needed medications in here. Benadryil, Tylenol, ibuprofen. There's some Zopran in there. Um ginger. Those are ginger um lozenes which I love as well. So kind of got my stuff prepared in here. Um, I am taking some peppermint um, honey drops because last time I was out there um, my throat and nasal passages and everything were really dry. So, these kind of helped me um, just kind of get through that. The air is very dry up there. Um, I am taking this for altitude sickness.

[00:12:06]I got this on Amazon. Um, it's all natural stuff. I don't know if you can see the ingredients on there, but it's all natural stuff. So, I'm just going to take a patch um wear it on the plane and then wear it while I'm out there. Um I have had trouble in the past with altitude sickness. So, I'm just making sure I'm staying well hydrated and taking these with me. Um more zopran cuz can't have enough. This is gabapentin that I'm taking with me um for pain. Um so, that is coming with me. Um they have a lot of different options. So, we're starting here with medications. And I will take these with me on the plane always in case something ever gets separated from your luggage. Um, you never want your medications to be in the checked area. So, one thing I'll say about the medications, um, it was taking, it was great being up there. Um, one thing I wanted to say about the medications, it was great being up there prior with my colleague, um, kind of knowing what I would need, what I wouldn't need. um the care team had kind of talked to me about what medications I was on and which ones they wanted me to hold that morning for the procedure and which ones to bring with me to the procedure and so that really helped me prepare a lot. Um now after the procedure um they prescribe pain and medications and stuff for me and my husband was able to go get those um right next door. Um they have a pharmacy where they send the prescriptions to, but everything I needed in terms of like what I was already on, including blood thinners and things like that. Um you know, I went ahead and packed ahead for those. Make sure you, you know, carry those on the plane with you in case you get separated. But um I had pretty much everything that I needed. Um and then they provided anything else that I didn't. So I'm going to play you the next video, which is also still me packing. Okay. Okay, some things I'm taking for recovery. Um, I've heard that, um, you have some back pain sometimes after this procedure. So, I've got some menthol cream that you can just kind of rub on. Anyway, I love this Dr. um, Bronner's. Got some lidocaine patches. I've got some thermal patches.

[00:14:10]I'm also packing my heating pad, but I'm using it, so I haven't put it in here yet. Um, salon pus cuz who knows? Um, more salon pus coming prepared. Um, I'm taking a blood pressure cuff just in case. I do have high blood pressure, so I'll be able to check my pressure before and after and make sure there's, you know, nothing going on there. Um, I am taking some IV fluids with me just in case I get dehydrated afterwards or can't eat or drink. Um, my husband's a nurse, so he can start an IV on me, which is helpful. So, those things that I packed I learned from being up there uh with uh Stephanie before. And a lot of um those were comfort measure items like the heating pad.

[00:14:56]Could not have lived without my heating pad. Absolutely love my heated pad. I have one that is weighted and I found that to be super super helpful. Um a weighted heating pad. I had it 24/7 for times that I was in the car on the plane or whatever. Didn't have that. that I took those thermal care patches that you put on. Those were amazing on the plane.

[00:15:14]Um the salon paw patch really saved me.

[00:15:17]I tried the ladic patches. Those didn't help me a whole lot. We'll talk about that more as we get into post recovery.

[00:15:23]But as I'm packing and showing you these things, I just wanted to kind of tell you and give you heads up. The other thing I wanted to tell you is after um Stephanie and I have both been through this procedure um after hers we started working on a document about what to do, what not to do, and all the things that I'm going to tell you now. And after mine, we finished it. And so make sure you ask your career team. We have a prep guide about what to pack, what to do, what to expect, when to follow up, and those kinds of things. Um, it's really helpful, I think, to have gone through it and make notes and know, okay, I would have done this differently or I wish I would have had this. So, ask your care team about that. Um, I'm going to flip to the next video. And this is more packing for me. Okay, I'm packing multiple pairs of compression hose. Um, I've got my these are my kneeh highs.

[00:16:10]Um, these are my thigh highs that I've been wearing recently. Love these. These have actually been super helpful um to deal with all my symptoms. Um, I'm actually taking a pair that is waist high that covers from my toes up to my waist. I'll probably wear those on the plane. I don't have those in here right now, but I will throw them in there. Um, also, if you're going to be having an um, superficial ablation, you have to make sure you have thigh highs um, to go home with. So, I will take those with me and then I will take those with me to the O that day. So, in terms of the compression, that was gamechanging for me. Um, I started wearing waist high compression right before my procedure.

[00:16:43]Um, and those really helped me with my symptoms, my shortness of breath, my chest pain, my leg swelling and stuff.

[00:16:48]Highly recommend that. You know, I started doing just the knee highs. I moved up to the thigh highs, but eventually I ended up in the waist highs and those were good for travel. Those were good for preop. Um, I wore them a lot. Um, since then I have actually swapped and I still use um these for muscle recovery and stuff as I like start to exercise and stuff again. But these are um new ones that I'm using and they're called Bioflect. B I O F L Ect. You can get these on Amazon. Um they're super stretchy. The thing I love about these is that they are to the ankle. They don't actually go over your toes, so you can have wiggle room in your toes. Um an occupational therapist who treats lip edema and lipid lympadeema actually recommended these to me. Um and I've been recommending these to all my patients. Love them. wish I would have had them at the time, but the waist high compression was super helpful for me.

[00:17:43]And if you're going to get superficial ablations of, you know, your superficial veins, then you're going to have to have thigh highs or some sort of waist highs.

[00:17:51]They make you have and bring those with you to go home. So, um, pack and bring those. Okay. So, I'm going to flip flip to the next video.

[00:17:58]>> So, this is an all too familiar travel companion. Um, this is my nebulizer machine. Um, which if you've listened to my story before, um, Millie and I both had lots of respiratory issues. So, we used to nebulize all the time, although we have not done it in several years. Um, because I'm going to higher altitude and I'm going to be having some hemodynamic changes. I'm just taking it just in case to ward off evils. Um, so I have that packed um, with my nibs in here. I always travel with a stethoscope and O2 sat monitor. So just in case uh my lungs aren't happy. Um we will have that with us and also carrying that on the plane, not tucking it under just in case. Um as many of you know, I had a lot of respiratory issues with my illness and I haven't had those in years. Um I had clots in my lungs before I met Dr. Vaughn. Um that was all cleared up by the summer of 2023.

[00:18:51]But I just can't travel without my um nebulizer machine still. um especially going to a higher altitude. I had already been earlier in the year. Um and I did fine. I just but I was definitely sicker at this point and so I wanted to make sure I had it with me. Um and I just travel with I did not have to use it. Hallelujah. Everything was fine. I think that the compression really helped me while I was out there. I also hydrated really well before I went and while I was out there, I mean, I basically was chugging fluids the entire time. Um, they'll also give you IV fluids, you know, before your procedure, but I I just made sure I avoided caffeine. You definitely don't want any kind of alcohol, anything that's going to dehydrate you. Um, but, you know, preparing for the altitude. Sometimes it's very difficult. I have patients who've had a lot of difficulty with the altitude changes and stuff. So, just planning ahead, knowing that that's a possibility, um, is is always good. And I found that helpful. I'm going to show you the next video. Okay, a few more things I'm taking with me. Um, lots of stuff for hydration. So, lots and lots of water um when traveling to the altitude. Making sure I'm taking hydration um and electrolytes with me.

[00:20:00]It's got lots of electrolytes packed. Um because I have to be in PO. I'm taking oatmeal. I'm getting up at like 3:00 in the morning to eat my last meal to make sure my blood sugar holds. Um I love these. We get these from Costco and these are good complex carb. Um, I eat a lot of sweet potatoes to keep my blood sugar um, steady. And these are actually on the go. So, I will have these with me all the time. Um, I'll take them to the O with me that day. So, if I need them um, posttop when I wake up, I can have those available. That video is just some of the food and stuff I took in terms of preparation. Um, we actually rented an Airbnb in a car. So, I was planning on once I got there getting groceries delivered. Um, and you know, being at the house was different, I guess, than being in a hotel. I've had patients stay in hotel. I've had patients do Airbnbs, but I'd been once before and we decided to do the Airbnb again because, um, I could pack lighter because we had a washing machine. Um, I could cook meals.

[00:21:03]we didn't have to like go out to eat or try to figure out food everywhere. Um, and we had a refrigerator and, you know, all the things that we needed. There were also multiple places to like recover. In the hotel, you're kind of stuck in the bed, but we had a couch, a living room, the bedrooms, um, you know, things like that. So, but I still had to take some food specific, uh, like that I had been using to keep my blood sugar up. Um, and I wanted to make sure I had availability of that stuff. So, that video that I just showed you was actually taken on May 4th. And I'm going to show you this next video and then tell you a fun story. Okay, so in a plot twist, um, we were not supposed to fly out until Wednesday. Um, today is Tuesday, Cinco de Mayo. Um there is a snowstorm coming to Denver in May and it will be um this afternoon, this evening into tomorrow morning and they're expecting up to 9 in of snow. So last night we changed our flights to come today so that we beat the storm. So we are here a day early um waiting for the snow. So stay tuned. Okay. So, I had been watching the weather in Denver kind of over the weekend and I was sort of in low-key panic mode if you ask my husband. I was definitely frantic. Um, they were predicting a potential snowstorm in Denver for the day that we were going to fly out and and um we had no idea what was going to happen. So, we kind of sat and watched and looked all weekend watching the weather. Um, we have some friends in Denver, so we're kind of talking to them about it. that we were looking at the airports and stuff. I was in a panic mode. Um, but we had planned to leave on Wednesday. Our procedure was on Thursday and you know that that was that I mean my mother was driving over from Mississippi to take care of my daughter who was going to be in school. And so that's what we had made plans for. Um, that the video I showed you of me packing literally was like Tuesday late afternoon. Um, I'm sorry, it was Monday late afternoon.

[00:23:17]Well, we were in bed um I guess it was 6 7:00 Monday night and the airline called us and they told us that they were predicting a snowstorm in Denver and it was going to be during the time of our arrival and so they [clears throat] were going to give us the opportunity to change our flights um and kind of recommended that we did that. So at this point I'm in full-on panic mode. I this stent is what is going to fix me and we may not be able to get there. Um so on Monday night um I called my mom and I said I need you to come tomorrow.

[00:23:59][laughter] I need you to come tomorrow. Can you do that? Um because we've got to fly in the morning. So my friend and I who were getting the stint, we actually decided to take an early flight the following morning on Tuesday. My husband had to work that day and so and he had not taken that day off and of course it's Monday night. He's in patient care so we're trying to figure that out. So we found a later flight for him that day.

[00:24:24]Um and we were just going to have to take a chance at least if the two of us could get there um Wendy and I to get our stint done. We would figure out the rest later. Um Matt could drive if he had to. So we took earlier flights.

[00:24:39]There were a couple of seats left. Um, and we just I just got up and packed my stuff Monday night and we flew out Tuesday morning. By the time we got to Denver, um, it was a little afternoon and it was already sleeping. Um, and so we got our car and we went to the house.

[00:24:58]Um, luckily I had contacted the lady the night before. No one was staying before us, so she had an additional night to give us. So, um, we were able to get out there, um, and get in the house, thank goodness. And then we placed a grocery order like we were about to be snowed in, um, like the zombie apocalypse. But we, um, we were at the house. It, you know, it started seting. We were watching the weather cuz we're waiting for my husband to get there cuz he was our driver home from the procedure that was going to be on Thursday. Um, and it slowly over the afternoon, it just started snowing, snowing, snowing.

[00:25:34]um he was able to make it there that night. So on Tuesday night he got there as well. Then overnight it dumped like 9 in of snow on the city of Denver. Now this is May. Um and this was a record.

[00:25:50]Um this was the largest snowfall they've had in May in Denver in history. And what I'm going to show you now are some pictures of the snowfall. So, the first one is um just of the or there's a video rather of snow falling fall falling outside of our house in May in Denver.

[00:26:09]Um there's a picture and a video where it's just looking at all the snow on the trees. I mean, it snowed all night long, all day the next day on Wednesday. Um and the pictures and videos that I'm showing you now, um there's several of them. They are all from the following day. Um, and then what I want to show you is we actually got to build a snowman. And so there's two pictures I'm going to show you. One is of me and my husband in the backyard. Um, and the other is of me and my husband and my friend Wendy in the backyard. And so I don't know if you can tell, but if you look really closely at the pictures of this snowman, if you look, I'm pointing to something. And what it is that I'm pointing to is we use a tree branch to implant a stent in our snowman. So we thought that that was fun. Um but um luckily we all made it there. The road stayed open and everything and so on Wednesday we just kind of chilled um and got ready to go to the procedure the next day. So the next video I'm going to show you is actually me packing my bag to take to the operating um suite the next day. So, I'm going to show you that. Okay, this is what I am taking with me to the O suite. Um, can't have any water, but I'm taking my water bottle for afterwards because it has my coconut water and electrolytes in it.

[00:27:35]Um, lots of food for when I can eat. Um, got my oatmeal in there, some uh nut butter and apple, some chips. I have some almond crackers in there, too. More food at the bottom. Um, and more electrolytes just in case. And then I am taking some of my medications. I couldn't take all my medications today.

[00:28:03]Um, holding some of my blood pressure medicines and stuff. Um, and a thermal back care wrap just in case. Also taking my own ginger ale just in case I'm nauseated afterwards. So, um I the morning, actually the night before, I packed a bag to take with me the next day. Um you can see I've got a bunch of food in there. Now, let me just tell you this. Um I don't know about every center, but when I went to MIPS, they have they will give you anything you want to drink and eat afterwards when you wake up from anesthesia, they do have gluten-free options. Um but I am on was on like a super strict glutenfree, no processed, no nothing. And I was really worried about my blood sugar. So I took all of my usual snacks. Um, and also I'm sure they had Sprite and other things, but that kind of stuff raises my blood sugar and makes it all wonky. So I wanted to take my own Zvia Ginger ale.

[00:29:00]Um, I did take my medications and stuff with me cuz I had to hold my blood pressure medicines, but I took other things like my blood thinners before I went, but they had me bring them in case I needed my blood pressure medicines afterwards or in case I wanted to take the rest of my supplements, the rest of my medications and stuff. So, it was really good to have a bag. Um, I also have my insurance cards, driver's license, things like that. Um, just, you know, all of this is in the preparation guide, too, about what to pack, what to take with you. Um, they have a changing room, so I put my clothes in there and change into my hospital gown. But, um, I just dress really comfortably, something really loose. Um, you don't want anything kind of pressing on your groin or where they're going to access you. Um, and, um, I took all that stuff with me. I took my water bottle, electrolytes, all the things. But, they did have all of those things and posttop recovery. I just didn't know what. U, the other thing is I my procedure was scheduled. I think it was scheduled for like 1:00. I can't remember now because it was Eastern time. I was very I mean it was mountain time. I was very confused. Um 8 hours before you can't eat. So I woke up at 3:00 a.m. to eat. Um because I had not been that long in PO in like 2 years because my blood sugar was so super sensitive to hypoglycemia. And I was really terrified. I was not scared of the procedure at all. I was more scared that my blood sugar wasn't going to hold. So, I set an alarm for 3:00 a.m.

[00:30:29]Um, I woke up at 3:00 a.m. and I had a steak and I had a sweet potato and I had a bowl of oatmeal and I ate an apple and I ate nut butter and I drank an entire bottle with electrolytes, which was crazy cuz I had also eaten a full dinner um at like 7 o'clock the night before.

[00:30:50]But I know that those things hold my blood sugar and I was just like terrified to be in BO. So, at 3:00 I had like a five course meal. Um, I had to sit up. I was so full for the rest of the night trying to like uh I felt awful, but um I had it down to the mark where my eight hours was going to be.

[00:31:09]So, I got up and ate, but I took all my snacks with me um to the O. And so, I'm going to show you a picture now. It's us and the way.

[00:31:16]>> Okay, we're in the car getting ready to go to MIPS um to get the check-in done and get started.

[00:31:25]So, the next couple of pictures, um, it's funny. One of these pictures is a picture of me taking a selfie by the MIPS sign that my husband took of me. I was so excited to be there. I was so excited to get this done and get this started. Not nervous at all. I'd already seen the process, watched it with my colleague. Um, I work with these clinicians every day with my own patients. So, not scared at all. Um, and so you can see all these pictures I've got of me like taking selfies and pictures of the sign, pictures of me checking in. Just lots of um, excitement. Um, me pointing at the MIP's sign checking in. This is my friend Wendy. She looks very excited to be there as well. Um, but I, um, I was very excited. So, there's a picture of me standing by the window. I'm checking in.

[00:32:11]I'm pointing to the sign and I could hear Dr. Spencer back in the stretcher bay and she had just finished a procedure and she was talking to her to someone and her staff and um I have never been so excited to hear her voice.

[00:32:27]Um she and I um we talk on the phone a lot about patients or you know I've collaborated with her. We've had meetings or whatever. I was up there before with my colleague. But it was very different this time hearing her voice like h it was like the angels singing from heaven. like I knew that what she was about to do was going to help me. And so when I heard her voice, I mean, I just can't tell you the amount of relief that it gave me. So I was sitting in there, very excited to go back and see her. Um, there's a couple of pictures of me in my hospital gown.

[00:32:59]Just fun. Um, one thing I was, you probably have already noticed that I did not pack and take with me is my makeup.

[00:33:07]Uh, there was no need for me to have that. So, um, very, you know, natural in all these pictures, but there's some pictures of me in my gown, um, getting ready them, you know, after I've gotten my IV in. So, you can see all those that were flipping through. There's a picture of me in the stretcher bay with, um, my friend Wendy. She, they put us next to each other. She was going to go after me. And then, um, our nurse, who was amazing. Um, and then there is a picture of me with Dr. Spencer, the wizard. Um, I was so excited when I saw her. I had already heard her that morning, but when she actually came to see me at the bedside, like I was almost in tears. I was so excited to see her. So, there's a picture of us. Um, the I will say the check-in process, the preop process, all of that was absolutely seamless. Um these people are one professional, two amazingly um just talented at their job. They are organized. They are compassionate. Um the whole process of getting in there, even the phone conversations I had that they called and prepared me and all of that, um it's just absolutely seamless.

[00:34:27]Um, you know, again, I've been there before with my colleague. I've heard many patients talk about it, but it's experiencing myself was a whole different situation. I was at ease. I was never scared. Um, and they just made it so easy from from the time I stepped in the door. Um, they were super great with my husband, you know, telling him where he can sit, what he can do, you know, very informative. Um, the whole the whole team, they just they look put together. They're all in their matching scrubs. um a and their appearance matches their attitude and their character. Um I was just I felt at peace. Um I knew I was in the right hands and you know the experience was just great. So I talked to my nurse. She was amazing. They're absolutely amazing at what they do. Um she talked to me about my blood sugar, how she was going to monitor it for me. Um we talked about IV fluids. She got me all set up. Um I felt so at ease with her. It's hard when you're medical and you're the patient.

[00:35:29]Um, but they made me feel, you know, completely comfortable, completely confident in what they were doing. Um, she was great. And then I met with the anesthesiologist also. Oh my gosh, can't say enough about her. She was amazing.

[00:35:42]She works with their team all the time.

[00:35:44]She's very in tune to our patients needs um in terms of max mass cell activation, long COVID. She knows what medications we're on. She knows what anesthesia um agents to avoid in patients like me, which ones we work better with. We talked about pain control, what I wanted to do afterwards, what I had taken, what I had reacted to. Um it was amazing. So, our preop um conversations were planning for posttop and the whole thing was just, you know, seamless, put me at ease. I was, you know, I was ready. Um and then Dr. Spencer came and she talked to me and she consented me for the procedure and we had a great chat. Um, and she actually I'm going to show you.

[00:36:30]She showed me um there's two pictures.

[00:36:32]There's a picture of a stent she showed me and then there's a video of her moving the stent around. And so it kind of shows you the how big it is, but also how flexible it is and how, you know, it kind of moves and shapes with your vessels and with your body. Um, and so she showed me that. We had a great conversation and, you know, I asked her all my questions and she shared with me, you know, what her plans were and, you know, um, it was great. The whole thing was just great and I've never been so excited to see her in my entire life. Um, so they took me back to the O. I remember um looking up at the ceiling and talking to the anesthesiologist like chitchatting about my blood sugar, chitchatting about all the things and she was she was putting the oxygen mask on me and I did not know she had already given me [laughter] some type of medicine. Um, and that's really the last thing I remember was talking. Imagine that. Um, and then, um, I woke up in the, um, stretcher bay recovery and it was completely over. So, I'll show you this video my husband actually took of me, um, afterwards and it's me waking up.

[00:37:45]Hello.

[00:37:47]>> Obviously, I look very comfortable. Um, they gave me medications for comfort before I went in by mouth and then they gave me stuff, you know, obviously in my IV. Um, I do remember after I woke up, one of the things I was worried about was my blood sugar. So, I started asking about my blood sugar. Also, it was really weird. Um, another colleague of mine, his son was sick. And for whatever reason, I really had it on my heart and mind. Um, and I asked Dr. Spencer about him and, um, that's a whole another story that, um, unfolded, but definitely a God wink. Um, I just happened to be in the right place at the right time. um for many reasons for myself and for um another colleague of mine's family member. Um another reason why I know it was just the right timing and and everything for me. So I was in recovery.

[00:38:38]I actually did great. I didn't get sick.

[00:38:40]I was starving. I wanted food. Um they made me wait obviously until I could wake up and um eat all those things. Um and I ate, you know, the snacks that I brought. Blood sugar was great. It was amazing. Um, and then there's um a couple of pictures I'm going to show you. Um, this first one that I'm going to show you.

[00:38:58]This is Leah, and this is my friend Wendy. Leah is the scheduler of the procedures for Dr. Spencer. Amazing.

[00:39:04]She's my new best friend. Um, she did so much work um to accommodate me um myself um and my patient on my friend to make sure it could be done on the same day.

[00:39:16]um and when I was stressed and worried that we weren't going to get there. She was such um an amazing just calming um person. She's very organized, very thorough. So, um very big part of this process um for me. And then there's a picture of me and Wendy and Dr. Spencer um after both of our procedures when we've changed back into our clothes and we are getting ready to go. So, I'm going to show you now a video of us walking out.

[00:39:45]All done. Walking to the car. Bye-bye.

[00:39:49]Stinson in. Queen Elizabeth is in the iliac. Did you name yours?

[00:39:54]>> Negative.

[00:39:55]>> We'll work on it in the car.

[00:39:56]>> Ghost Rider.

[00:39:57]>> So, um I named my stint after Dr. Spencer. Um my colleague and I had named her SP hers Brooke when we went up before we thought it was funny. And um I named my stent Queen Elizabeth. So, anytime my friends and colleagues and I talked about it beforehand, we were talking about Queen Elizabeth by name, I'm ready, you know, I'm getting ready to go see Queen get Queen Elizabeth implanted. Um, and I told Dr. Spencer that I named my stint after her. She thought that was funny. Um, so this is us walking out. And then there's another video specifically of me walking out to the car um right after my procedure.

[00:40:36]>> Just walk out.

[00:40:37]>> Where am I walking?

[00:40:38]>> Out to the car. Look at you go.

[00:40:40]>> I'm free.

[00:40:46]It's >> what you've been waiting for.

[00:40:48]>> It's done.

[00:40:49]>> Thank God.

[00:40:50]>> They will take you or offer you a wheelchair. I was I felt great. I had been there recovering for a while because uh my friend went after me actually. So, I had been there actually extra long. Um my husband had gone um they had sent in prescriptions for us while we were there. So, he had you know taken care of all of that um for things that we would need posttop. So, this is me walking to the car. Now, I was absolutely starving afterwards and um interestingly, the day before in the snow, I had requested to go to Torch Tacos. I don't know why, but I want to go get to Torches Tacos. So, we did in the snow. It was really good. And as soon as we got in the car, I told my husband like, I have to have Torches Tacos right now. Um and so, I'm going to show you a couple pictures of all the things that I ate. Okay, don't recommend this at all. Um I that definitely suffered later afterwards, but we went to eat at Torches Taco. So you can see a picture of the chips and stuff on the table and then all the empty plates like I devoured it. And then um I talked my husband into taking me to get the donut.

[00:41:59]Now I don't like donuts at all. My husband does. My daughter loves them. Um I don't like donuts. I can't remember the last time I've had a donut, but the day prior, Wendy and my husband had gotten a donut from this place. Um, and I decided that I needed one after Torches Tacos. So, this is a picture of the donut. It is gluten-free. Um, I ate it, too. Um, and I don't know why I was craving all this food. It's like I had never eaten before. Um, but I did eat at Torch Tacos and probably shouldn't have done that. um definitely suffered for that later, but we'll talk about that.

[00:42:37]So, the next video I'm going to show you is the morning after my first night.

[00:42:43]Okay, so after the procedure, I was very hungry after not eating and went and had tacos and guacamole and cheese dip and felt okay. Night one was sort of rough.

[00:42:55]Um lots of pressure in my lower back, not necessarily pain. um some back spasms.

[00:43:05]Um I have been using a heating pad and menthol cream and capsain patches which have helped a lot. Um but not moving around a whole lot today. Um but I feel good. I can breathe and my legs feel good and my chest doesn't hurt. Um so definitely improvements. Um, so just resting today and hoping to move around and feel better. So the first night was kind of rough. Um, one of the things they recommended to us was to take non-narcotic stuff kind of around the clock for that first 24 hours. So we set alarms to get up and take um, non-narcotic pain medication like Tylenol. We did take some ibuprofen.

[00:43:54]Only do that if your provider is okay with that because we are on blood thinners. Um, so we set alarms to kind of get up and take those things around the clock. So, basically, I got no sleep. Of course, I had already I already told you the night before I woke up at 3:00 a.m. to eat a steak. So, I really hadn't slept in two nights. Um, and that was hard on my body. When I don't get sleep, I don't really feel well. So, I but um so I kind of I kind of regret doing that that first night, but it did kind of stay on top of my pain and discomfort. So, that's what we did. Um, in the video you see me laying on that satin pillowcase. That's actually my daughter's. Um, she sent it with me. She wanted me to have her pillowcase um while I was gone, which was so sweet. This is the first time that she's ever been away from me and my husband at the same time. Um, she'll be nine in October and both of us have left on work trips or whatever, but we've never both left at the same time. And it was very, very difficult on our family.

[00:44:56]Um she was with my mom, which of course with family, but she'd never been without the both of us. Um and it was really hard. Um it was really hard for all of us. There were a lot of tears um from her. She was, you know, she was here having to go to school and I was there and not to mention she had seen me so sick up until that time. And now, you know, I'm having surgery in another state across the country. Um she has no way to get to me. And so that was hard.

[00:45:22]Um that was really hard on us. So, she wanted me to take her pillowcase, which I did. Um, I also I got us these bracelets. Um, so this is um the bracelet I took with me and she has a matching one that has the solid heart that fits inside there.

[00:45:40]Um, you know, one thing I think that people don't understand is being sick is one thing yourself, but what a toll it takes on everyone else around you. Um, your caregiver. I mean, someone's having to take care of me, my husband. Thank God he's a nurse because, you know, he knows about these things. He can help me. Um, you know, and that has been a blessing.

[00:46:05]Um, it's hard when you are a caretaker of other people, being a mom. Um, it's been very difficult for me for the last year, um, to not be able to do the things for my child that I feel like I need to do because I'm trying to take care of myself and can't even do that cuz I'm being taken care of. But I don't I don't think people realize the burden that this creates on your family unit and the people around you. Um I will also say I have been absent in a lot of my connections and friendships over the last year. I just haven't been able to sustain those. I haven't been able to go and do anything. I haven't had the mental energy to reach out to people, to respond to people, to meet up with people, all the things I used to do. um that's very difficult. So it it is socially isolating um and people don't understand um that you're you know dealing with these things and they don't understand your absence. And so there's a lot I think that it's imagine not imaginary but it's it's things that you can't see um that other people can't see that go along with being sick and being on this journey. Um and my family unit has definitely taken a hit over the last year. Um, we've there have been days where all of us are crying. I'm on the couch getting IV fluids and everybody's crying. Um, everybody's concerned. Um, we're all upset. I'm upset cuz I can't get up and do anything. My daughter's upset, you know, watching me be sick. My husband's upset cuz it's exhausting. Um, I haven't been able to do anything in my house over the last year. He's done all the laundry, the cooking, the cleaning.

[00:47:43]Um, it's been it's been rough. And so, you know, for her to have seen me struggle through all of that and then all of a sudden both parents are gone and I'm having a surgery that she knows nothing about um in a state way across the country from her and then leaving a day early was really hard. So, um we had our bracelets. I took her pillow. Um she tried to send all her stuffies with me, but I had enough to pack so I didn't take any of those. Um so that was night one. And then um I am going to show you another video. Okay, so night two was a little bit better than night one. Um I actually slept through the night which was good. I didn't set any alarms to get up and take medicines. I did wake up at like 5:30 really sore and stiff so I kind of regretted that. But the sleep was really good cuz I hadn't had any in like two nights. Um, I did get out yesterday.

[00:48:43]So, um, after the second night, we went to brunch downtown. Um, it exhausted me actually and I came home and rested, but I felt okay walking around. It was hard. Um, last night I was up a little bit more and uh took medicines throughout the night, so I guess walking around kind of like made me sore and stiff a little bit. Um, this morning I feel okay. Still some muscle spasms and some soreness and stuff. Moving pretty slow. A lot of abdominal cramping and bloating, which I wasn't really expecting. So, that's been a fun surprise. Um, we're actually packing to go to the airport. So, we're trying to space out our medicines to um get on the plane. It's almost 3 hours to be on the plane, so that's not fun. um heating pad and salon pass patches have saved me the last 3 days. So definitely get some of those. Um we are about to get in the car to head to the airport. So we'll update soon. So one of the things I was kind of surprised about actually I had been through this with with Stephanie. Um the there wasn't the pain is weird. It's different. I was having more of what felt like uh like nerve pain. So it felt like something was pressing on something. Um I had a lot of back spasms, so like muscle spasms and stuff. Um they had given me something called Jouavvax before I I even had the procedure and I took it through the procedure and actually for two weeks afterwards. Um so it it wasn't necessarily pain, it was back spasms that I would have or like nerve pain. It was very weird. Um and they had given me stuff for that which definitely helped. talk to your healthcare team about that for sure. Um, but I I didn't wake myself up the second night to try to, you know, get meds. And so by the time I woke up the next morning, I had not moved all night, which my body needed the sleep, but I was very stiff and sore. And I had been to brunch to try to eat. I basically stood up the whole time. Um, I felt really good standing or laying horizontal, but sitting um, especially in any hard surface did not feel good.

[00:51:00]So, um I was basically in the bed or, you know, standing up. I mean, I could walk around just fine. Um as long as I wasn't having a back spasm, but they did call me, the team called me and checked on me. They asked if we needed anything.

[00:51:14]They called in additional medications.

[00:51:16]They were really good um about followup and doing all of that. So, we had all of that um kind of in our back pocket. Um we got ready to go back to the airport.

[00:51:26]Now, one thing I will say is, and I had this in our tip sheet, you cannot pick up anything heavier than 15 pounds. So, whatever you have brought there with you and you carried, you now cannot carry it. So, whoever your travel companion is is now responsible for all of your luggage. So, one thing I had learned that the trip before is that pack light um because that person is now has all the things to carry. Um that was another good thing about having the Airbnb um we could wash clothes so I didn't have to pack a whole lot. I mean, basically, I was in my pajamas all day. Um, and then, you know, we could wash it and I could change out or whatever. You want to make sure you have loose clothing, nothing that's really constrictive um on your belly. You don't want anything on the um access site um that's compressing that would, you know, cause any pain or discomfort. Um and so, just be aware of that. Now, you heard me talk about belly bloating and cramping. So that's my fault because the nurse did tell me immediately today, the day of my procedure, start taking Mirax and take it every day and you know and so I was like okay whatever. Um I did not do that. Um my husband I talked him into I got a like Target pickup and I was like oh just go get me some choleace whatever. Okay. I regretted that. Um, I because of the anesthesia and the medications I was on and all of the things changing in my gut and everything, I did not uh was not able to move my bowels for almost a week and that was completely miserable. Um, I was not moving around a lot and my eating was all weird. Um, and so word to the wise, do what they tell you to do. take your Marilax, start taking your soul softeners before because the the abdominal bloating created a lot of pressure on my stent um and in my abdomen and pelvis and on my lower back and that that made my pain and discomfort way worse. So definitely listen to what they say. Um healthc care providers are the worst patients. Um and so my husband did try to get me to take it but I didn't. But um so definitely do that. But that was one of the things that um that first week that was really uncomfortable for me. So definitely listen to them, listen to your body. Um and you know, do what you need to do. Um okay. And so then I'm going to show you there's a picture of me sitting in um a wheelchair at the airport. Um and there's a video I'm going to show you about the about that. now. So, we are currently sitting at the gate um waiting to get on the plane. We got a wheelchair at Denver airport. It's huge. Highly recommend getting a wheelchair. Um I did that when I traveled before um with someone who did this and it is definitely necessary. It is way too far to walk. Um so, and you can board the plane early, get help with your luggage.

[00:54:26]So, make sure to add that on to your travel.

[00:54:31]So, definitely um someone had told us this, but when I was traveling with Stephanie before, we got a wheelchair at the Denver airport for her. Um and it was great because you the Denver airport is huge or wherever you are. I mean, it's big. You don't really want to do a whole bunch of walking around and all of that. Um it was especially great for us because um we so my husband and my friend and I we got all the way through security and my husband um got his vest or jacket back on. I can't remember what he had on and reached into his pocket and he had car keys and they were the car keys of the rental car.

[00:55:09]So we're already all the way through security and now here we are with the rental car keys. And so we're trying to call the rental car company. We sat there for I don't even remember how long trying to call them, get in touch with them to get the rental keys back to them. Um, in the meantime, we are afraid we're going to miss our flight. So, we're like, "Oh well, we'll just deal with it later." Um, we'll just ship them back to them or whatever. And so, we got in our wheelchair on the tram and they called us back while we're like on the tram and they tell us to bring the car keys back to them. Well, that means somebody had to go back through security um to take that. So my husband was like, "Oh my gosh." So they because we had the wheelchairs and we had people with us, they were able to take us to the gate.

[00:55:53]Um and so we knew we were already going to be there and we had all, you know, our stuff with us. Um and so he had to go all the way back through security and return the car keys. Um and then he barely made it while we were boarding the plane. So the wheelchair also helped us with that too. Um, lots of twists and turns along the way and snowstorm and now we have the car keys to the rental car. Um, so that was that was fun. Um, lots of fun adventures, but we were thankful that we had that. So definitely think about that for yourself too. You can walk certainly I did walk. I was up and walking, but when you're in a rush and certainly that little piece did not help, you know, because we were definitely in a rush then. Um, so that was helpful. Um, so that, um, takes us to the end of kind of the videos and stuff that I had recorded. And then I kind of went radio silent after that.

[00:56:45]The first week I basically, um, slept um, in the bed and I was just very exhausted. And it's like my body had been running a marathon. And I guess I had been in fight orflight mode for so long and compensating for so long that my body was just like, I can relax and I can recover. Um, in terms of the pain and everything, I mean, I was pretty comfortable for the most part. I would have some muscle spasms and things like that. The amazing thing was my blood sugar immediately after my stent completely stabilized. Um, I was not having to eat. My sugar was staying completely normal, completely fine. I remember asking Dr. Spencer before I went back to the O, "Are you going to fix my blood sugar?" I was being sarcastic and joking and she said, "I hope so and if we do, let's write a paper about it." Um, but I can't explain it. I don't know what happened, but my blood sugar was amazing. So, immediately that first week, blood sugar was stable.

[00:57:46]Everything was good. Um, it was great.

[00:57:49]The other thing I immediately noticed was even though I was sleeping and you know just had some discomfort and stuff that first week is that my blood pressure started going down. Now I've had high blood pressure since I was pregnant. Um I was induced at 36 weeks and 6 days for preeacclampsia. Um so I have had high blood pressure for 9 years and I've been on blood pressure medication. Well, I had gotten up in the middle of the night um pretty early on to go to the restroom and I was so dizzy I almost passed out and like fell into my closet. My husband like jumped up checking on me while my blood pressure was low. Um and it has not been low in nine years. So immediately um we started checking my blood pressure kind of around the clock and I started tapering off my blood pressure medicine. So within a couple weeks I was completely off my blood pressure medicine. So blood sugar, blood pressure immediately corrected. Um, amazing because I've had trouble with those. And then the other thing I noticed is that I have had pain in my left SI joint for nine years since I was pregnant. Um, I have been to PT. I have been to the chiropractor. I have done everything that I can for this joint pain, SI joint pain, back pain, low back pain. It was gone. It was gone immediately after the procedure. Um, and I realized that I had probably been compressed since I had been pregnant.

[00:59:18]So, it probably changed a lot of the things in my pelvis, um, from being pregnant, um, which is the high blood pressure, um, and the pain. Um, I actually had a collateral that was pressing on something in my lumbar spine. And so when she opened up my iliac, it took the pressure off of that nerve and the pain immediately went away. Um, so I've probably been compressed all this time and then COVID tipped the scale. Um, and you know, I have hyper mobility. My, um, vessels are very lax, I'm sure, like my joints and then with the inflammation and damage from COVID and the vaccines. Um, it just allowed for the compression to get worse until the point where I couldn't compensate anymore. So, the back pain was gone, the blood pressure problems were gone, the blood sugar problems were gone. um immediately that first week. Um the second week um I actually started my menstrual cycle for the first time post stint. Um and I remember um texting Dr. Vaughn and telling him I feel like my insides are on fire. Like something is wrong with me. I just don't feel right.

[01:00:31]Um it was that time around the second week that I discovered that I had really bad um MCAST my cell activation. Um and it's interesting because I treat patients with this every day. I talk to them, give them medications for it. I talk to them about it. I'm very in tune to it, but I myself had never considered my someone who all has MCCAST. I'd never been on treatment for MCAST. I'd never had rashes and all of those things. um really so I really didn't know um and wasn't prepared. So I just felt like I was burning on the inside and everything was inflamed. Um my body started reacting in weird ways to foods. Um I started reacting to the weather. So if it was hot, if it was raining, um my body would react. If my body got stressed, I would react. I would have chest pain, burning, heart racing, headache, flu-l like symptoms. and very classic MCCAST stuff. Um, and I had never had that before. Um, now looking back, I probably did because I was very sensitive to medications. I was very sensitive to changes. Excuse me. I was very sensitive to like temperatures and stuff like that. And that past year, I had been um I just didn't recognize it in myself, I guess, which is weird. So, I had never been on any kind of treatment for MCCAST. Now, I regret that because I had a very big MCCAST flare after putting my stint in um that lasted almost two months um where I started just reacting to everything. Um so, my team really rallied around me and we really maximized out my MCAST treatment.

[01:02:11]Um and but even on maximum treatment, I was still like reacting. So, I had to go on a very low histamine diet. I had to be very careful about what I was eating, what I exposed my body to. Um, it was rough. Uh, it was very rough. And I think if I would have listened to my body beforehand and kind of recognize the MCAST um, cascade that was going on in me and I could have been on these medications beforehand, I think I would have done a whole lot better. Um, because it was just it was really, really hard. Um, I'm going to show you this because I showed this on one video, but so I had packed this before going to Denver to get my stint um with like Tylenol, benadryil, ibuprofen, zopran.

[01:02:58]Well, now it's my husband daughter make fun of me. It's my bracelet because it's a little bracelet. Um, Stephanie actually had one of these. I'm like, I need this. Um, but I have replaced it with now MCCAST emergency treatment stuff. So, like I have my keto tiffen in here, my DAO enzyme that I had to take with every meal. Nausea. I've had a lot of nausea. So, I got my ginger chews.

[01:03:22]Um, this is I don't know if you can see, but all my pills are now white. So, all of my ibuprofen, Tylenol, benadryil now is dieree because I was reacting basically to air. Um, and again, looking back on this journey, um, I think I I had a lot more challenges because I was not prepared for that ahead of time. Um, and I was not, you know, on those medications ahead of time like I should have been. But again, I just didn't manifest the same symptoms that a lot of my patients did. So, I just didn't recognize it. You know, all my inflammatory markers had been normal. I had retested everything after I got sick in December. So, it just wasn't on my radar. Um, so the last two months have been kind of rough um, dealing with that. Um, but underlying and and people would ask me, "How are you?" And I would say, "Okay, I'm okay. I did not feel good." I was reacting to things, but underneath all of that, my body was waking up. I could feel my muscles working and functioning again. Um, I could feel my brain trying to wake up. I could feel my myself starting to wake up very slowly. And then I started to have glimpses of normaly and I would have an hour where I would feel really good and then I would have to sleep afterwards.

[01:04:44]Um but my blood sugar stayed amazingly perfect. So I knew that if I could just get through this flare that everything was going to be better. Um, and so eventually those that one hour grouped into two hours, that two hours grouped into half a day, the half a day grouped into a day, and then I would rest and recover. It was very hard on me mentally because I would feel so good and be able to do things and then my body would say, "Okay, now lay down and rest." Um, and I was getting those glimpses of normaly.

[01:05:16]And that was sort of like a tease. Here it comes, you know. But people would ask me how I am, and I would say, "I don't feel good, and I'm having this flare, but underneath it's working, and if I can just get through this, um, I'm going to be okay." Um, and I'm going to be better. So, it was probably like 8 weeks. Um, so right now, this week, this Thursday, um, I will be 10 weeks post stint. So, I woke up almost a week and a half ago and it was a Wednesday and I was getting ready to go to clinic and I woke up and my brain felt awake and I felt alive and my body felt good. Um, up until that point I had not done anything, no exercise, no nothing. I had been trying to kind of move my muscles through like a 10-minute strength training, just moving my muscles, learning to trust my body again. um like a two pound weight on my arm, just lifting it, just some slight bands on my legs, just pulling them apart, doing a little bit of resistance for 10 minutes, like twice a week, just trying. Um but I was scared honestly because I couldn't trust my body and I was having all those crashes before.

[01:06:31]But I woke up about a week and a half ago, week eight. It was week eight and I was going to work and I got to work to the office and I was like jumping around the room and like talking incessantly and they were like, "Whoa, you're in a good mood." And I finally felt like I was alive and I was going to live again and like be myself. And so I got home that night from work. Now, when I had been doing clinic days up until that point, and I had been in clinic and doing still working all this time, um I would come home and I would just crash just being up using my brain all day, my body, my body wasn't used to that. I would crash. I would be, you know, straight to bed, whatever. But I came home and my husband got home and I said, "I need to go for a walk." And he was like, "What?" [laughter] And of course, I'm in South, you know, Alabama. It's hot outside. And he was like, "Are you sure?" And I said, "Yeah, I I need to walk. my body is telling me I need to move. So about a week and a half ago, I started walking and um I walked a mile.

[01:07:32]I walked a mile flat. Um the next day, my body said, "Get up and move again." I got up that morning. I walked a mile and a half. The next morning I walked two miles and I did some hills. Um, several days after that, I I was trying to sneak actually um because I wanted to wear my weighted vest and walking my weighted vest and it was about a week I had been walking um and I thought my husband was upstairs, but he was downstairs in the garage and I grabbed my vest and he looked at me and he was like, "Where are you going with that thing?" Um because before if I ever walked to my weighted vest during the middle of my walk I would crash, get hypoglycemic and like immediately have to stop, take my vest off, eat, lay down, you know, it was pretty bad.

[01:08:15]But I walked a mile in my vest and then I continued to walk 2 miles after that.

[01:08:20]Um and so I'm on now about a week and a half of feeling alive and awake and normal, whatever that is. I don't I don't know what that is. Um, but that's where I am. Um, it has been hard physically. Um, it has been really hard mentally as I've gotten those glimpses back um, of myself. One thing I had to remind myself along the way is that my body has been very sick and very stressed and very it's been, you know, trying to um, you know, survive. I've been in fight or flight mode. My body has been compensating all of this time to try to keep my my everything functioning. Um, and it was very hard to be patient with myself. Um, I wanted it to be a light switch and I wanted it to just fix immediately and you know everything be fine and that's not what happened which is also crazy expectation for me because I see patients every day and even the nurse practitioners that I saw there and the team are like it's going to take 3 to 6 months before you even see any results um and before we know and you know all that was in my head and patients tell me all the time you know two to three months and then they felt better and you know, their body had to readjust, but I just couldn't wrap my brain around that. And I was had been sick for so long and I was so ready to get well that mentally it kind of took a toll on me. Um, so I had a lot of tears two month the two months after my stint.

[01:09:58]Um, it was very frustrating for me. Um, but every day I got up, I had great support, and I just put one foot in front of the other and said, "I'm going to do this. I'm going to try harder today. I'm going to be 1% better today." Um, and that's what I have been doing. And so I'm talking to you today. Um, and I feel really good.

[01:10:24]Um, I don't know that I'm back 100% to my baseline, but every day I feel better. Um, it has been an interesting journey for me from this perspective. I have sent so many people to have this procedure done. Um, I've walked them through it um before. I've taken care of them afterwards. Um, it's very different when you go through it yourself. Um, it has given me a lot of empathy. Um, it has helped me see things more clearly as a clinician. Um, I have been reading and researching and learning more about MCCAST. I have been learning about um, dysotonomia, gut dispiosis. Um there's a great book series by doc Dr. Robert Gman who is a physician. He treats long co but he also has long co himself. His book series is written directed for patients at patients. Um they're great easy reads but I have been doing a lot of research myself. So it has made me a better clinician um now being on this side of the fence. Um it's made me a better human. Um, now I feel like, you know, I definitely am giving more grace to myself. I'm giving more grace to others. Um, and I feel like every time I have one of these episodes or setbacks, you know, in my journey, I learn from it. Um, it's hard to see at the time, but then afterwards, you know, I gain some new perspective.

[01:11:53]Um, but it has been it has been really difficult learning journey. I am happy to say that I am on the other side in the road to recovery. Um I every day need less and less um antihistamines and MCCAST medications. Um every day I have more and more things that come up and I think, "Oh my gosh, I haven't been able to think or multitask like this in over a year." Um I feel things in my body that feel good instead of bad. I can trust my body again. Um, and so, you know, one thing I do want to do is encourage you because we are on this journey together. Um, and there's a whole community of people, including your team, that surround you. Um, a lot of us have been through this ourselves, so we understand. Um, and you know, even for those of us who have not, um, we walk patients through this a lot. Um, and so keep putting one foot in front of the other. I mean, that's what I have to do. Now, am I perfect? No. Am I going to be I I don't know that normal is ever a thing again once you've had COVID and long COVID and injury um vaccine injury and and things. I know I have a normal baseline, a new one. Um, and and I'm getting back to doing that. Um I am very passionate about educating all of you um and providers. In the last couple of weeks I have been building some patient education materials. Um I have gone out and done some outreach with some providers um trying to collaborate and you know get more people to help. Um, and as I've always told all of you, you know, because everyone asked me, "What can I do to help?" And and what you can do and what I'm doing and what I what I'm committed to doing is to tell my story. Um, I'm an open book, you know, it I I don't mind sharing the good, the bad, the ugly. I mean, it is definitely a roller coaster. Um, my healing and all of yours is not linear. Um, it is a roller coaster and it is mentally and physically hard and challenging and taxing and I get that. Um, but I'm here to say I've been to the bottom many times with this. Um, and CO doesn't get to win. Um, there there is a way to be better, to get better. There's a way to work with your team. Um, and we're discovering new things every day. Now we're looking at compressions in the brain and you know in the gut. I mean no one knew any of these things six years ago. Um and and I am blessed to be with a team of people who are very likeminded and a a physician leader who is fearless in his pursuit for curiosity and learning new things and collaborating with people all across the country um to try to figure this out. for me, for you, for all of us. Um, and I'm very grateful to be a part of that team where I can also extend, you know, pieces of his bravery and pioneership, um, and help people along that journey.

[01:15:15]Um, I I definitely want to say a special thank you to Dr. Spencer. Um [clears throat] there are no words for me to express um the amount of gratitude I have for this woman. Um she has taken care of many of my patients. Um and I've always been very admirable of the care that she's taken of my patients. um and I've collaborated with her and as a collaborating you know clinician she's been amazing watching her um perform the procedure on my colleague um and then having it done myself um there are just no words the amount of gratitude I have for her this woman works night and day um 7 days a week um to help people um it's it's more than a procedure to her it's about lives um she's sat, she held my hand. I watched her do it for other patients. I've watched her have conversations. Um, it's she's a lifecher. It it's not just an operator putting a metal object in you. Um, she is in tune and she is empathetic and I am so grateful to her for my care, for my patients care, but also for being a pioneer in this space. um and for being brave and stepping outside the box. Um because it is hard. It is hard and I know as a clinician that it is hard. So I I want to extend my gratitude to her.

[01:16:54]Um but not just her, her whole team. Um there are many people that it takes for this puzzle piece to work. Um the scheduler, her scheduler Leah, her nurse practitioners, she has a whole room full of people. um providers um her anesthesiologist her her preop her posttop nurses her you know schedulers who are making your appointments um a and also I recognize that in our own practice and in our own team um we are so little without those people and we can only do what we can do um because of the support people that we have and her team is amazing um I'm very grateful ful for them. I am very grateful for the team that we have that support all of us providers and the care that we give to all of you um every day because it really takes a village um to take care of these people, but but not only are they a powerhouse and not only are our people a powerhouse and helping with the logistics, but they're so compassionate and empathetic and I just don't know that I would get the same experience, you know, other places and I am just grateful um for people who are brave um and for people who are willing to challenge the system and say I don't care what the check box says this patient doesn't fit it and I need to do what I need to do to help them get better um no matter if it's in a textbook. Um, and so I'm just very encouraged um, by this process and I'm very passionate now about m moving our mission forward. Um, and I'm very passionate about helping all of you through this um, as we continue to learn together because there's something I learn new about my body every day. Um, this drives me to read um, and learn more so that I can help all of you. And so, while it has been hard, it has taught me a lot of humility. Um, it has definitely taught me perseverance and I hope that I can be an example to my daughter. Um, and that she understands, yes, we get put down, we get kicked down, and things stop us and but not to give up. Um, and I hope that she sees that. Um, I hope that, you know, if you're struggling through this or you've been through this, I hope that that is empowering to you. Um, we are certainly here to walk through it with you. And I know firsthand what it feels like. Um, so just thank you for your support as well and for listening and for hanging in all this time. Um we have a lot of um things planned for the future of this um foundation and for the future of this you know podcast in terms of patient education. Um some things we're going to do differently. Some things I think we're going to do um fun and educational but very relatable. Um if you have um things you want to know or hear about, reach out to us. Um, I am happy to explore those things with you and it may be something I don't know about, but I am happy to go and learn and all of our team is as well. Um, but I just want to say thank you for listening to my story, for continuing to listen to my story.

[01:20:22]Um, and for listening to the stories of others and I am back and ready to start sharing those with you again. Um, and we've already got some [music] great people lined up um, to talk to you and share their stories. And if you're interested in sharing your story, please let us know. Um, and I just really appreciate you listening [music] to this very personal testimony um, for this episode of and the returning episode of The Long Haul with Summer. Thank you.