My Story - Part 4 (2021)
Thankfully, 2021 was shaping up to be a much better year for the Carrano/Schmidt family. My dad’s surgery was a success. It went beautifully, he had a minor complication that resolved itself, and less than a week after surgery he was back at home recovering. In February 2021 my genetic results came back on my kidneys and of course, they were abnormal. Inconclusive. Awesome.
One of the things they were testing for is a very rare condition called atypical HUS which in simple terms is the bleeding of your blood vessels in your kidneys. Cool huh? Now, there is treatment for that condition, but only about 50% of people respond to it. Even better.
Well, thank goodness I don’t have that. But good news, if I DID have that, I also have the genetic component that responds to the treatment so at least there’s that. But I do have a mutation in my genes that could have maybe, possibly contributed to my early preeclampsia. Basically, this gene is present in 30% of healthy people too so chances are, that’s what caused it but also, maybe not. So inconclusive. And the treatment for this condition during pregnancy would have meant several infusions of medicine. My nephrologist basically said, if it’s important to you, we’ll start the process of getting hematology involved and figure out at what point of your pregnancy you’d need to start the infusions. But keep in mind, it would make me immunocompromised and in a time of Covid, it made her a bit nervous.
All in all, it meant we had some things to think about. My therapist at the time also recommended getting another opinion from a fertility specialist to get her thoughts (she recommended a very highly ranked RE) so highly ranked in fact, when I called the clinic in March, I couldn’t get in to see her until November of 2021.
After everything we had been through, and all of the opinions of our doctors, it was at this point, we started talking about alternatives to growing a family. Deep down, we knew no matter what the fertility doctor said, pregnancy probably wasn’t in our future. And the process to get pregnant and stay pregnant felt extremely intimidating and scary, to be honest.
So this is where the 20+ year friendship comes in. Not long after the nephrologist appointment in late February, I saw one of my oldest friends for dinner. One other thing my nephrologist had said to me was that there was a high chance I’d never come off my BP meds, but it wasn’t 100% outside the realm of possibilities. Once again, in my research, I had read that some women with preeclampsia had to be on BP meds for up to 2 years after diagnosis, so I had another year and I really wanted to try to be off of it by January 2022 (spoiler, not quite there). But anyway, shortly after this appointment, I saw one of my oldest friends for dinner. I love going to her house. She always cooks delicious, healthy meals and we always have wine and dessert and I got to snuggle her sweet baby boy who had been born in July of 2020 but because of Covid and my dad and doctors’ appointments, we waited a few months until we both felt comfortable for me to meet him. Actually, it was April of 2021 because I had had my first vaccine shot when I met him. But anyway, Allie and I have always talked about all of the things. Allie and her husband own their own company (DWRunning if you’re a runner who wants to do ALL the marathons or crazy Ultras and things that I’ll never do) and Allie LOVES to cook. She’s always been healthy but not like, over the top crazy about food or eating disorders or anything like that. In fact, her and her husband aren’t even vegetarian or vegan. Several of their athletes are, but they maintain a nutrient dense, fresh homemade nutrition lifestyle that is more fulfilling for them than anything else. Ok so back to my story.
Allie and I spent that evening talking a lot about health and food and I watched her cook a beautiful meal with a baby in tow and her husband pouring us wine and bringing us desserts and for the millionth time in our friendship, I thought to myself “dang, when people ask me who my role model is, I will forever and ever say Allie.” To me, she is just the very coolest person ever. Her wedding was in 2012 and to this day, still one of my very favorites that I’ve ever attended. Her and Dan are just incredibly welcoming, smart and caring people. They are incredible business owners and have really obscure, awesome talents (Allie designed their entire kitchen TO SCALE IN EXCEL WITHOUT A MOUSE AND ITS INCREDIBLE) and they are just incredible parents and friends.
I always leave their house feeling overflowed with joy and with so many ideas. And after this particular visit, watching them with their 1st son making black bean and sweet potato tacos for me and having cocoa bars for dessert, I decided I wanted to be like them in as many ways as possible - not the running, but everything else. :) During this visit, we also discussed gardening. That was Allie’s newest project for that year, square foot gardening. We looked at her garden beds and she explained the basics to me and showed me the book she’d read and I took notes.
I went home that night and AJ and I planned to build two garden beds that summer and really focus on our outdoor space. The previous fall (November 2020) we had transformed our extra bedroom into a guest room/office for me because of how much I’d be working from home going forward (another spoiler, we’re redoing that sooner rather than later again) and after a winter of being cooped up inside, we decided we wanted to take advantage of the warm months and our incredible property and make it ours. In the fall we had also had plans drawn up for our back patio and deck. I had always hated how our patio concrete was poured on an angle. It looked so dumb and it hurt my feet when I walked barefoot, which I do all summer. And the retaining walls weren’t very well intact and when our friends’ daughter climbed on them and fell because a brick came loose, I was done. We brought out a landscape designer to redesign it and entered into a multi-year project with them. Redoing landscape and stone retaining walls ain’t cheap, ya’ll.
So anyway, summer 2021 was going to be the year of outside. The first phase of our patio was starting and AJ and I were going to build two cedar garden beds on the east side of our house for my version of square foot gardening. We did the demo for the deck and patio on our own and had to transplant tons of Hostas so we brainstormed and gathered inspiration for what we wanted our ultimate garden to look like, and started to put the pooch in motion. I’ll share our ultimate garden design plans at a later date. But first, I still feel like I need to catch you up on what’s lead to where we are now.
May of 2021 brought us another slight rough patch when AJ and I had some routine medical physicals done and AJ’s triglycerides were through the roof and my cholesterol was slightly elevated. Pretty much, AJ had to go on medicine for it just to avoid any complications but was determined not to stay on it forever so we researched and talked to the doctor and cutting out added sugars and sweets would help. This is also about the time where I was doing a lot of PCOS research because I still wasn’t losing all the weight I wanted to. I had given myself grace in 2020 and let my body heal naturally as much as possible. I had gained a lot of extra weight through all of the IVF meds and pregnancy, so I was trying to see how much of it I would lose naturally, and it wasn’t dropping off as quickly as I wanted it to. When AJ decided to cut out sugar, I decided to do it with him as a show of support. And at this point, the only research for “natural” PCOS remedies I could find were to be gluten and dairy free. I spoke to my gynecologist about these options when I had to go in to figure out why my periods were so wonky (it was of course, my PCOS) so she and I discussed diet changes and things I could do and I asked her about gluten and dairy free. She didn’t agree with going dairy free, but was ok about gluten free. She basically just told me that breads and pastas are so much more refined these days than they ever used to be. Once again, I didn’t know enough to ask about other types of wheat, I just assumed all gluten had to go so I did.
During the summer of 2021, AJ and I watched phase 1 of our patio get done, cut out sugar and gluten, and built our new garden beds with an overflow of veggies that we ate daily in lunch time salads. And I loved gardening as much last summer as I had in 2020. I even grew a few cut flowers and loved the color they added to the house. I’m no flower arranger, but it was so fun to be able to cut enough flowers to bring into the house for a pop of color. AJ and I enjoyed our summer. We did not do any indoor house projects. He worked on the garage and included a space for a potting bench until we can build a proper shed (hopeful that’s on the plan this summer with phase 2 of the patio) and spent time on the lake, spent time with friends and at farmers markets.
But through all that, I found out just how difficult maintaining gluten free is. I promised myself I wouldn’t restrict myself or make our friends or family cook something special for me. It wasn’t their problem I was trying to figure out my health, but we love bread. And beer. And it was hard. and I wasn’t losing weight. My weight was just fluctuating like crazy, and I was pissed off and frustrated. As much as I wanted to figure out my nutrition, I also wanted to enjoy food and not feel like if we were with people, I couldn’t eat something. I don’t know how people with severe allergies or celiac do it! I give them SO much credit and grace. I think part of it was that it was a choice for me. It was something I was choosing. Not something that could literally mean life or death in that moment. By this time, I had figured out that fertility specialists were also endocrinologists, and I couldn’t WAIT for my November meeting to talk through all the options. The list of questions I had were a mile long.
As September and October ended and it got colder out, I fell into my old ways of spending a lot of time scrolling Instagram at night instead of going outside and walking the dog. It’s a terrible habit, and I think I’ve FINALLY found a way out of that, but I’ll get to that. Anyway, sometime in October, as I was doing my nightly scrolling, I found Emily Timm, the Endocrine Nutritionist. I was intrigued. She was a dietitian from Cleveland (this is where this comes in) and had a VERY different approach to managing PCOS than I had ever seen before. She was in the exact opposite camp of gluten and dairy free. In fact, she promoted FULL FAT dairy! I was cautiously optimistic. A registered dietitian with celiac disease and Hashimoto’s probably knew a thing or two about nutrition. But she didn’t have PCOS. But then again, everything I’d seen on Instagram previously promoting gluten and dairy free for PCOS, those women HAD PCOS but weren’t dietitians. Confusing. So anyway, my list of questions for my doctor got longer and longer and finally, it was time to ask the full list.
In November, I spent an hour in her office. We drew blood, she looked over my history, we talked and she answered my questions. And told me basically what I already knew. She looked at my IVF/RE history and told me she didn’t need to do an ultrasound to check my ovaries because with 30 retrieved eggs post 30 years old, I definitely had PCOS (its one of the clinical signs). But she wanted to check my AMH levels, testosterone, A1C, liver and adrenal function. But based on my history, she also said that she wouldn’t let me carry another baby. There were too many unknowns and too many risks to the pregnancy. We discussed long term PCOS management or doing another egg retrieval and freezing my eggs for a potential gestational carrier. We also discussed nutrition and exercise and a book called The Obesity Code about intermittent fasting and how intermittent fasting has been shown to help blood glucose levels. Another potential complication of PCOS is higher blood glucose levels and pre/diabetes. I left the appointment with a LOT of answered questions and a LOT to think about. I felt good.
AJ and I talked at length about surrogacy. In fact, it wasn’t the first time we’d talked about it. We’d talked about surrogacy and adoption back when we started IVF. We knew with my issues natural pregnancy may not be an option and we wanted to have a plan. A very wise and trusted doctor of mine told me when we started to IVF to make sure we had a plan. I’ll go into all of that later, but we trusted him and we made a plan. So, this wasn’t our first conversation, but it would be our last. See the thing about surrogacy is, there’s a reason only people like Kim Kardashian do it. It’s insanely expensive. It averages $100-$150K. And as much as I’d like to have that kind of disposable income, we just really don’t. And we didn’t want to go into mega debt and bring a child into this world in a VERY rocky financial position. We felt that was selfish and incredibly unfair. Especially when adoption was such a viable option and slightly more of a “guarantee” than even IVF.
So, feeling good about our decision, I told my fertility doctor, and we made a follow up appointment for early February 2022 (she’s hard to get into but for good reason!).
In the meantime, while I waited for blood tests to come back and because Dr. F had confirmed everything the Endocrine Nutritionist was saying, I started following Emily much more closely. And learned SOO much from. I participated in webinars and started following some of her “recipes” and just felt so good about what she was teaching. She preaches that it “gets to be easy.” And it truly is and was. In combination with trying intermittent fasting, which Emily doesn’t necessarily believe in, but she said to give it a try because it wouldn’t hurt, AJ and I started following a Mediterranean eating pattern and lifestyle. AJ had done so well with limiting added sugars that his doctor brought his medication down to every other day with the goal of coming off it May of 2022. And he was game to try whatever recipes I wanted to make. It was kind of incredible just how easy it was. None of the recipes were complicated. They were easy and flavorful, and I was actually ENJOYING being in the kitchen.
In December, I had my annual appointment with the gynecologist and I talked to her about my appointment with Dr. F and our decision, and so we decided on an IUD. Which Dr. F also recommended if I wasn’t going to freeze my eggs. The reason why REs and gynos recommend IUDs for women with PCOS is to help prevent endometrial/uterine cancer. In women with PCOS, we don’t get a regular period and that means our uterine lining doesn’t shed correctly and overtime it can build up and potentially cause cancer. So, they recommend IUDs to help maintain a thin, healthy uterine lining. And because in December I actually HAD my period, we decided to insert it then. You have to be on your period to have an IUD inserted, so I didn’t want to miss my window of opportunity.
It was a pretty uneventful procedure and 4 months in, I’m feeling really good and not having any of the same side effects I was having 8 years ago from the pill. I think IUDs have come a LONG way, and I would recommend one for a variety of different reasons, but that’s a topic for later too.
December and the holidays came and went. We celebrated Christmas and 1 year post surgery for my dad – glowing outcomes. It was considered a successful surgery and when he has to have his valve replaced in about 15 years, they will LITERALLY be able to do it through a catheter in his armpit! Medicine is truly incredible. My grandfather was the one of the first patients to receive a quadruple bypass at Good Shephard hospital and now my father could be receiving a new heart valve THROUGH HIS ARMPIT!!! So cool.
A much, MUCH happier New Year than the past year.