I went back and forth a lot on if I wanted to write and publish this post. Health is so personal, and as I’ve gotten older, I’ve found myself wanting to keep more parts of my life private from the internet than I did in the past. I also think it’s harder to share the hard experiences as you’re going through them—it requires a level of vulnerability I’m not always comfortable with. And candidly, being more vulnerable in my offline life is something I am working on, and I find it even harder to be vulnerable on a public platform where you have no idea who is seeing it.
But as I was debating the pros and cons of sharing the health journey I’ve been on the last couple of months, I ultimately decided I would share for a few reasons. For one, I’ve been having a lot of conversations with my dear friend and one of my best blogging pals, Monica, in recent weeks and through all those texts, I realized that my experience may help others in some way. For another, I’ve recently found a renewed passion and been really inspired when it comes to my blog and want to create content that I would enjoy consuming. I personally love following people who are more vulnerable and give you a look into their personal lives—let’s face it, we’re all nosy af sometimes!—so I want to get back into doing that more on this space, too. And lastly, a lot of what I went through, fingers crossed, is behind me and has a clear resolution, so it’s easier to share about this experience now as I’ve had time to process it myself.
Before I tell the story, I want to preface this by saying if you know me in real life and weren’t aware of my health situation, please don’t take it personally that I didn’t let you in to this part of my life. I told very few people—my family, four friends, and my bosses at work—because I didn’t have the mental capacity to manage other people’s emotions on top of my own.
And, hopefully this goes without saying, but I work in PR, not the ER. None of this is meant to be medical advice—talk to the professionals for that! I’m just here to share my story that has taken me on quite a ride the past few months.
This whole thing started when, this past winter, I noticed that my hair really started thinning out and I was losing a lot of it. I’ve always had really fine, thin hair, but this was a markedly different. I would brush my hair after getting out of the shower and there was just so much more hair than would normally be in my brush. In early April, I went to the dermatologist for an unrelated reason, and since I was there, I decided to ask her about the changes I had been noticing in my hair.
“Have you been super stressed lately?” she asked me.
“Uhhh, yeah—this last year was probably the most stressful year of my life,” I replied.
She went on to tell me that recently, she’s been seeing an uptick of 20- and 30-something women coming into the office who are under extreme stress given the demands of high-pressure jobs, the compounding impacts of a two+ year pandemic, and all of the life stuff that happens on top of everything else—and as a result, experiencing hair thinning and loss. She explained to me how stress can impact the hair growth cycle, which can cause you to lose more of your hair at one time than you normally would.
I felt extremely heard by my dermatologist, and she didn’t brush off my concerns at all—in fact, after she looked at the roots of my hair to make sure everything looked normal, she ordered some lab work to be done to figure out if there was anything else going on to cause my issues. After my appointment, I popped up into the Labcorp in their building to get my blood drawn and then went about my day.
A few days later, she called me back with the results—there was nothing of note that should be impacting my hair, but she did flag that I had a positive ANA result, which meant that antinuclear antibodies were found in my blood, which is a marker for autoimmune diseases. She also noted that my ferritin, or the stored iron in my blood, was extremely high. She recommended I see a rheumatologist, as they are trained to treat autoimmune diseases and would be able to do more extensive bloodwork to see if anything concerning was going on.
I called the practice she recommended and as a new patient, had to wait six weeks for an appointment. In the interim, I made a virtual appointment with my primary care doctor to go over my bloodwork with her and get a second opinion. She too recommended I see a rheumatologist and told me the practice my dermatologist had recommended was the best in the area.
At this point, I wasn’t too concerned about anything, and in hindsight, probably a little bit flippant, because other than hair loss, I wasn’t experiencing any symptoms of an autoimmune disease—my joints didn’t hurt, I wasn’t fatigued, my weight wasn’t fluctuating, I wasn’t swollen or achy, and I didn’t have a fever.
While I was waiting for my appointment in early May, my sister found something of interest on our 23andMe dashboards. (My whole family has done the test and are linked together on their platform, meaning we can see certain data about each other’s ancestry and health predispositions—it’s pretty cool!) She was randomly poking around one day while bored and noticed that under my ‘Health Predisposition’ report, I was at a slightly increased risk for a hereditary hemochromatosis, which is a genetic condition characterized by absorption of too much dietary iron. Over time, this condition may lead to iron overload, which can cause damage to the joints and certain organs, such as the liver, skin, heart, and pancreas.
This finding, of course, was of particular interest given my bloodwork was showing extremely high iron. 23andMe has a whole report on which genes they found the variant in, so I printed it out and brought it with me to my rheumatologist appointment.
Candidly, I found my experience at the rheumatologist’s office infuriating. Like the type A person I am, I showed up about 10 minutes before my appointment time. They called me back 30 minutes after my appointment was scheduled, and then the PA didn’t come into the room until 20 minutes after that. (Thankfully, I had brought a book, but my biggest pet peeve in life is when people waste your time!) One bright side is that the PA did spend about 20-25 minutes with me, asking a ton about my health history, lifestyle, and symptoms and being really thoughtful about what bloodwork she wanted to order so we could try and get some answers.
The PA was partnered with an MD, so once she was done talking to me, I had to wait another 15 minutes and then he came in to talk to me. (I also think part of what made this appointment so frustrating is the office mismanaged my expectations—I thought this was going to be your typical 30-60 minute doctor’s appointment, and it turned into a two and a half hour affair. I scheduled this on a Monday, so was trying to dig out my inbox from the weekend and it just was a bad combination all around.) We ultimately aligned on a running a lot of bloodwork, designed to understand if I had any autoimmune diseases and confirm whether or not I had a hereditary hemochromatosis.
A fun fact about me is that I get extremely lightheaded or pass out almost every time the doctor’s office has to draw blood. (This will become extremely ironic later in this story—just you wait!) Given we were running a lot of tests, they had to take a lot of blood. Thankfully, I didn’t fully pass out this go-around, but I did feel so terrible afterwards that they gave me juice and wanted to keep me for observation for 10-15 minutes just to make sure I was fully back to normal before I had to drive home. Needless to say, this particular day was the Mondayest of Mondays.
About a week later, the PA from the rheumatologist called me to talk through the results of my bloodwork. (They billed me like $100 for this phone call without telling me, too—this definitely added to the infuriation.) First, she told me it was unlikely that I had any sort of autoimmune disease and that it’s somewhat common for caucasian women to have positive ANA results without it ever developing into anything. Second, she told me that my B12 was low, so that I should start taking a supplement. And third, she confirmed that genetic testing confirmed that I did in fact have a hereditary hemochromatosis and that in addition to my ferritin being high, unsurprisingly, my iron and iron saturation were as well. She recommended I consult with a hematologist for a treatment plan and next steps, as they are experts in diseases of the blood.
(As a total aside, my family and I thought it was really wild that 23andMe was able to predict this diagnosis. No one else won that genetic lottery though!)
I went back to my primary care doctor for a hematologist recommendation, and she pointed me to Virginia Cancer Specialists, as they also provide hematology services on top of oncology. This is, hands down, the best medical practice I have ever been to. I hope and pray that you and I never need an oncologist, but if I ever found myself in that situation, I would have complete trust in the doctors and staff here—they are so organized, competent, on time, and thorough. When I called their office to make my first appointment, they were able to find me a doctor for the following business day. It was just a night and day experience from how I felt at the rheumatologist.
Before diving into the medical stuff, at my first appointment, my hematologist took the time to introduce himself and learn more about me—through our conversation we actually realized his kids go to the same elementary school I went to, which was such a fun small world connection. He then went onto explain in depth all about hereditary hemochromatosis. Because women menstruate every month, many don’t discover this condition until after menopause, so he assured me that because we caught it extremely early, it should have no long-term impacts on my quality or quantity of life.
My biggest question going in was if I would have to change anything about my diet—and if you’ve read my blog for any length of time, you know I love a good cheeseburger, so I was especially concerned about having to give those up. He basically told me as long as I wasn’t eating steak off a cast iron skillet for three meals a day, at this point in time, there was nothing I needed to change about my diet—what a relief that was.
(As an aside, while we’re talking about diet, I’ve been working with a Registered Dietitian through Culina Health for about four months and it’s been an awesome experience. My insurance covers it at 100%, so sessions are free to me. I have struggled with my relationship with food since high school, and having this kind of one-on-one tailored support has been invaluable. I’ve lost about 10 pounds and feel like I’ve improved so much of my overall health. I’ll write a longer post about my experience after I’ve been working with them for a longer period of time, but wanted to share. I first heard about them on one of my favorite podcasts, Diet Starts Tomorrow, and am so glad I did!)
In terms of treatment, he told me that what he recommended was regular therapeutic phlebotomy—essentially, I will have to donate blood three to four times a year to lower the amount of iron in my blood. (Like I said before, the irony.) After each blood draw, I’ll come back to his office for some bloodwork to monitor my iron levels. INOVA, who I donate blood through, will then give my high-in-iron blood to those that don’t have enough iron in their blood, which is pretty cool! He also recommended we get a baseline ultrasound of my major organs to ensure that my high iron levels hadn’t started to damage them.
I had Monday, June 20 off work in observance of Juneteenth and decided to knock out both this baseline ultrasound and my first therapeutic phlebotomy. I wasn’t worried about the ultrasound at all—and getting it done was a breeze. The ultrasound tech was so nice and really put me at ease, and I was out of there in about 20 minutes. I had a few hours before my therapeutic phlebotomy, so I went home to make some lunch and enjoy my day off work.
About an hour before I needed to leave, a nurse from my hematologist’s office called me and told me that they found a 2cm lesion (mass) on my liver that was indeterminant in nature and they wanted to do an MRI on it as soon as possible. There was also a 1.2 cm mass on my kidney they thought was likely benign but wanted to get a better look at, as well. I immediately started crying and a huge wave of anxiety rushed over me—suddenly everything else in my life felt extremely trivial compared to a clean bill of health. And, to top it off, before I barely had time to process this news and tell my family, I had to drive out to the INOVA Blood Donor Services location in Dulles for my therapeutic phlebotomy, which I was absolutely dreading.
When I arrived for my therapeutic phlebotomy, I filled out all the necessary paperwork and then had a quick consultation. (Even though my donation was via prescription ordered by my doctor, I still have to go through the same screening as people who are just there to give blood.) Ironically, even though I was there because my iron levels are too high, they still had to prick my finger to confirm my iron was high enough to donate. Unsurprisingly, it was off the charts.
I told the team that I often pass out during blood draws, so they preemptively gave me orange juice and ice packs for the front and back of my neck. Things started out fine, but when we were getting close to completing my pint of blood, the room started spinning and I felt so hot and nauseous. I passed out, and when I came to, they had laid me down and brought over additional ice packs. They told me it gets easier every time, but I’m sure I’ll still be super nervous heading into my next therapeutic phlebotomy, which will be sometime this fall.
Afterwards, I swung by Chick Fil A after for a late afternoon snack because I needed a pick-me-up—both for my mental health and my blood sugar.
As I mentioned before, Virginia Cancer Specialists is the best medical practice I have ever experienced as a patient. After the nurse called me about my liver lesion, my patient coordinator, Sharon, called me within 15 minutes to tell me she would help schedule my MRI. Having someone else navigate this for me was so, so helpful as I was so anxious that I could barely function. I told her that I was leaving for the beach with my family on Saturday and would love to have the MRI done before then so that I could—hopefully—have answers by then. Within an hour, she had me scheduled for an MRI on Thursday afternoon.
The rest of Monday, Tuesday, and Wednesday of that week were some of the toughest days of my life. The waiting without answers led me to spiral often throughout the day. My anxiety was so bad that it made daily tasks hard to complete. (I am on daily anti-anxiety medicine, which is another story for another day, but I did end up taking additional meds this week to help me get through—talk to your doctor, there’s no shame in getting the help you need!) I had trouble sleeping. Things that were causing me stress the week before no longer mattered to me. I was just putting one foot in front of the other to get to Thursday as quickly as I possibly could. It really gave me perspective in a first-hand way that without our health, we have nothing.
In these health situations, everyone tells you not to Google to try and diagnose yourself, but like I said before, I work in PR, not the ER, and am the least medically savvy person. I wanted to know enough information so that if the results were not what we were hoping for, I would have enough knowledge to ask my doctor some baseline questions and start to advocate for myself. It was definitely a slippery slope for me, and eventually I did pull away from the constant Googling—but the worrying didn’t stop when the Googling did.
A few weeks before this whole ordeal, my friend Julie, who I go to dinner club with, give me a Rosary she picked up for me in Fatima during her family’s vacation to Portugal. Ever since learning about the Marian apparition at Fatima in kindergarten (#CatholicSchool), I have felt really drawn to Our Lady of Fatima. I prayed that Rosary every day that week and when I did, I felt a huge wave of peace wash over me. My mom would send me encouraging texts with Bible verses each morning and check in on me before bed every night. My best friend’s mom had her prayer group praying for me. And I often thought of my Nana, who had a rosary CD in her card most times and really believed whole-heartedly in the power of prayer.
Somehow, I made it to Thursday—and surprisingly, that morning, I wasn’t very anxious. I think it’s because I felt like I was doing something to get closer to answers. My MRI was in the early afternoon and was about 45 minutes away. My sister Jennifer drove me to the appointment and sat in the waiting room the whole time; I’m so glad I didn’t have to go alone.
The MRI itself wasn’t bad at all. They did some images without contrast, and then through an IV, added contrast so they could get a better look at what was going on. They let me take my mask off while in the machine, which I think really helped me not feel claustrophobic. I honestly just prayed the entire time. It took about an hour, and after, Jennifer I went to Chick Fil A since I had to fast before my appointment. (Can you tell what my favorite fast food is?)
I had asked the MRI techs how long it typically takes to get the results, and they said I should expect a call sometime on Monday. Given my anxiety, and my family’s aforementioned beach trip, I didn’t want to wait that long or have to deal with whatever answers came while I was on vacation. I emailed Sharon and asked if there was any way the doctor could help expedite my results—squeaky wheel gets the grease and all that. She said she would do her best to help me.
On Friday morning, I woke up with an absolute pit in my stomach and it might have been the worst bout of anxiety I dealt with all week. I called my mom around 9:30am to cry, and she later told me that she thought I had gotten horrible news when I called her because I sounded so distressed. Then, at 10:21am, my doctor called me and told me the best news—everything appeared to be benign. I was so, so, so relieved, and it was probably the best news someone ever told me.
During the MRI, they found the 2cm liver lesion they originally identified during the ultrasound, and they also found another 1.2cm liver lesion. They can’t tell for certain, but they think they might be hemangiomas, which are basically nodules of blood vessels. They could have just always been there and we just happened to find them now, or there’s a chance they could have been caused by taking hormonal birth control for a prolonged period (ten years) of time. We’re going to do an MRI in another six months to make sure nothing is growing or changing shape, but my doctor assured me that it’s nothing to lose sleep over. (The mass in my kidney was confirmed to be benign as well, thankfully!) And, there was nothing else concerning on the MRI.
This situation taught me so much, and has especially made me more empathic to those dealing with health issues. The mental weight and anxiety those challenges present is so much, on top of any physical pain or limitations. I wouldn’t wish that on anyone.
It also particularly illuminated to me that you never really know what’s going on behind-the-scenes, even with those closest to you. I didn’t share anything about this on social media and told very few people in my life. It’s a good reminder to extend grace and be kind, because you never know what private burdens others may be dealing with.
And, perhaps above all, I was reminded how important it is to advocate for your health—no one else is going to do it for you. I found out about a hereditary blood condition all because I asked my dermatologist a question, and then spent months being bounced around from doctor to doctor until I found an answer and a treatment plan. It was exhausting, and I have spent a lot of time on the phone with my insurance company. But, know I have knowledge that can help me continue to live a healthy life and prevent long-term damage to my vital organs. Trust your gut; you have a good one. And don’t stop asking questions until you feel like you have the answers you need.
(On the hair loss front that started this whole thing—now that I am way less stressed, my hair has started to grow back and I also started taking Nutrafol on the advice of my dermatologist; I also cleared this with my hematologist.)
My next MRI is scheduled to happen in November or December, and I am keeping my fingers crossed for continued good news—I’ll definitely keep you posted. And a huge thanks to my family and friends who supported me throughout this trying time; I would never be able to express in words how much love I felt and how I couldn’t have done it without you. x