What a couple of weeks it has been. I feel like I am living in bizarro-land. There has been so much happening but I have not had the capacity to write the past several days.
In short, I was in the hospital two days getting two Albumin transfusions and left Sunday feeling a bit better and better able to eat and drink on my own, my Albumin (protein) levels just below normal range but high enough to give my doctor satisfaction. By Monday I was again very full in the abdomen and still fighting the nausea and pain. I also awoke that morning with some new symptoms, in particular swelling in other areas of my body. I went in to my RE in hopes of another tap but the ultrasound indicated that a tap actually would not be able to drain much fluid because the fluid had now begun to spread throughout my body — stage two of OHSS.
Over the course of the next four days I gained 15+ pounds of fluid throughout my body, putting the total fluid weight gain at 25 pounds in about a week. My clothes do not fit, fluid on my spine makes it painful to rest on my back, my feet and toes are swollen to the point of numbness and tingling, and all of that adds up to a good bit of difficulty walking and getting around. The rest of the week involved more IV fluids at my RE’s office, an ER visit to ensure I didn’t have a blood clot because of asymmetrical swelling in my legs, and, finally, an appointment with my RE on Friday where we finally saw my kidney function improving.
While those symptoms I just mentioned are still true today, I also am beginning to notice some improvements. Late last week I began peeing normally (sorry if too much information), indicating that new fluids entering my body were being processed by my kidneys. Now it is a matter of the fluids stored up from the past two weeks getting pushed to them and peed out — that’s right, we’re looking at peeing out 25 pounds worth of fluids over the next week. This process, thankfully, has already begun and I’m down about 4-5 pounds.
Let me be clear about this: I do not care about the weight. What I care about is the extreme discomfort and how I can’t get around so well. Percocet and anti-nausea meds have been my friend the past week and are helping to relieve enough of the pain to be able to eat and get up and around for a bit at a time.
Perhaps more importantly, let me be clear about this: I am so grateful for this pregnancy and I am not complaining in that regard. I am so so grateful. And this pregnancy, to potentially have a baby at the end of this, is worth every ounce of discomfort.
Last Sunday when we were discharged my RE’s partner, who was on call and making rounds, let me know that OHSS typically lasts nine days in women who are not pregnant and 21 days in women who are. At that point, about 11 days in, I could not imagine being able to tolerate another ten but getting these slowly-increasing Betas certainly has pushed me on and makes it all worth the while. In fact, my RE told me about my first Beta on the Thursday before we were supposed to find out. She called to let me know some of my other, worrisome numbers and to have me come in for fluids, labs, etc. but then said she also had good news, that she had run an HCG the day before (1 week post transfer) and my Beta was 51. I of course was shocked but this news buoyed me, helped me to push through the pain, to continue to force feed and hydrate myself despite feeling as though there was zero room for anything else in this body, and I wouldn’t be surprised if that was an intentional move on her part.
I can’t imagine going through this process of OHSS and not being pregnant, my heart goes out so deeply for women who do. Staying on the OB mother/baby floor last weekend, I could only imagine how cruel it would be to be there, not pregnant, hearing the cries of the babies and in such pain.
My betas have continued to rise, but not at normal rates due to the OHSS. My doctor told me this from the beginning, not to expect the doubling every other day that we typically see, because blood levels in a woman with OHSS are so skewed because of the enormous amounts of fluid in her body. So after the initial sneaky Beta of 51, my second was drawn in the hospital at 1 in the morning and my RE texted me the result at 3 a.m. — 86. Still pregnant. So very early still, but pregnant. That was when I first began to believe and let it sink in. Last Wednesday it registered at 581 and Friday at 1315, it actually did double in that two-day period.
I am doing a lot of hanging on and a lot of waiting — what we infertiles do best. With OHSS it is a game of waiting it out and of symptom management. Today is day 21 of this, but as my doctor has reiterated I don’t know how many times, we never can know how long someone’s body is really going to take to get through it. The trick now is for the effect of my Albumin levels, hopefully continuing to rise because of now being able to eat, to overcome the effect of the HCG, hopefully continuing to rise because of the growing pregnancy. My dear mother-in-law who is a dietician has me on a high protein diet and I am trying to waste no bite on anything that does not contain protein. Save the fried pickles and pretzels outing that Hubs and Jess took me out to over the weekend which involved airlifting me into the restaurant.
This morning as Hubs went to church I watched a streaming Easter service online and wept thinking about God’s salvation and taking a broken, messy situation and redeeming it, breathing new life into it. His goodness to us to make us beautiful again, his goodness to me to allow me to be pregnant. I showered and put on a dress I could zip half-way (yay for Anthropologie baggy styles) and actually did my hair and make-up. I took a few minutes to put a tablecloth and the china out on the table for Jess and Hubs and my Easter lunch, and those little things felt like big accomplishments.
So today, much like my body is requiring me to do, my mind and heart move slowly, one foot in front of the other. So grateful for each increasing Beta, celebrating each pound peed out!, beginning to let myself dream a little about baby names and nursery colors, and holding my breath until that ultrasound next Monday and looking for our little heartbeat.