This is probably a repeat of information but to play catch up, I figured I’d repost it with some added information.
In March of 2023 I had a really bad period. I had felt a pain that I have never felt before, I was bleeding very heavily and I was concerned. The Dr wanted me to get an ultrasound but I was fine after about a day of pain and I couldn’t afford the ultrasound so I declined it.
In April, I had routine bloodwork to check on my hormone levels. My platelets were concerningly low. My Dr immediately referred me to an oncologist/hematologist to dig deeper.
By May, my symptoms were a tired that I’ve never been, terrible breathing just sitting there, getting out of breath by talking, pale skin, irritability, and like I said- pure exhaustion. I’ve said it before and I’ll say it again- I would take being 40 weeks pregnant over how I felt in May.
After seeing me in May, the hematologist ordered a bone marrow biopsy to rule out leukemia and other scary things. The results were back by the end of May and it came back no cancer (hallelujah!), but I had no iron in my bone marrow. At all. Which is insane. Iron carries oxygen through your blood to your organs. So when I was telling people I couldn’t breathe, I literally couldn’t get oxygen. I wasn’t crazy. I wasn’t obese (I am but that wasn’t why I felt so terrible.) Within 2 weeks I was receiving my first round of iron infusions.
An iron infusion is really interesting. I went into the infusion area at the oncologist office. They take you back, get you comfortable in a nice lazy boy rocking chair/recliner. They get you an iv going and after about 10 minutes of that saline, they start the bag of iron. The iron takes about 30 minutes or so to go through, they run the saline again after and monitor you for 15 minutes for any reactions. Once they’ve cleared you- you go on your way. The nurses are all so nice and positive. And the people in there are going through the worst of the worst and yet they are so happy and positive. They’re receiving chemo and/or infusions. Some of them are so sick. But they still smile at you and make conversation and it really is a family no one wants to be a part of. I was so angry and scared and selfish. I would ask myself why me like seriously why? I just finally got my mind right and started feeling like myself again and damn it now I’m sick?! What the hell?! But that first infusion completely changed my mindset. The people I met along this journey- man. They are the heroes.
The hematologist told me that in his opinion, based on my symptoms and the things I discussed with him, that my anemia was due to my periods. He wasn’t concerned about my platelets. He said that is an autoimmune disorder. But the iron was the main issue at this point. Once I received the infusions, he said I should feel much better. I did. For about 2 months. He told me he would see me again at the end of August to see if I needed another round of infusions and that in the mean time- get with my gynecologist to determine why I’m having issues all the sudden.
June 6th was my last infusion. By the end of July, I was starting to get out of breath easily again, my skin started to get pale again, I was starting to get tired quickly. I called my hematologist to see if I could get in earlier than the end of August. They were luckily able to get me in within 2 weeks to see him and another 2 weeks for the second round of infusions.
In the meantime, I met with my gynecologist to run some tests. He did an ultrasound and found out I have a small cyst on my right ovary. But other than that- there was no real reason why I was having this pain and heavy bleeding. Options were presented to us: birth control, IUD, ablation, hysterectomy.
We decided that given my delivery(and current blood level issues) that having any more children was not in the cards for us. To be honest, that decision was made after my traumatic delivery with lily. I knew from the get go that I could never emotionally go through something like that again and most importantly; I refused to take lily’s mom away from her because of my want to have another child. Because the reality is I would have likely bled out again. And who knows if I would’ve survived it this time.
So closing the chapter on having any more kids- wasn’t really closing it. It had already been closed. But there was still some emotional baggage that needed to be addressed. I grieved the absoluteness of a hysterectomy. Saying you’re done having kids and actually doing something about it are two different things. I cried, a lot. I was angry. I was sad. I’m frustrated that this decision was kinda made for us by the fact that my blood levels are so out of whack that the gynecologist told me that it would be incredibly dangerous for me to get pregnant at this time. That my delivery was so traumatic, making me never want to do it again. That my uterus is making life impossible. All of it. Sucks.
I had to way the options. If I don’t have a hysterectomy I’m more than likely going to continue to need infusions every 2 to 3 months. That means every 2 months I will have to miss work for a Dr appointment, another appointment for labs and then 2 appointments for infusions. Not only is that me missing work basically once a week every other month for a month straight. But it’s expensive. I don’t have that kind of money. I haven’t had a full 80 hour paycheck (I’m paid biweekly) since April to put it into perspective. I’m missing at least half a day a week for appointments or tests or infusions. I can’t keep that up.
Not only is the financial aspect of it impossible but the emotional and physical. When my iron depletes (roughly every 2 months) I start to feel terrible. All the symptoms I listed before. I am not as good of a mom as I want to be or as lily deserves when I’m so sick.
Why can’t I just take iron supplements? It takes roughly 3 months for iron supplements to build up in your system. You also can’t overload your system of iron. I can’t even get leveled out in iron enough to begin to take the supplements. Before they’d have time to make a difference-i would need an infusion. So supplements aren’t an option at this point.
If I have a hysterectomy- I’m looking at a lot of scary symptoms. Early menopause if they take my ovaries. Possible prolapse. Possible infections. Possible bladder issues. My blood levels have to be optimal or I run the risk of bleeding out.
But with all the negatives- I still feel like a hysterectomy is a better choice for me. It’s time to get my levels back to normal and to start feeling better and enjoying life again.
That leads me to the current state of what’s going on. In order to have my surgery, which is scheduled for September 7th, we have to get my blood levels back up. First thing was to do another round of infusions. I went in for my first iron infusion on August 17th and had no issues. Went back the 24th and they tried 7 times but couldn’t get a vein to cooperate and withstand an infusion. So I went back on the 28th and they tried another 8 times. It never worked. I was upset because I thought this could very well derail my surgery if my iron is still low. But my arms were so bruised and I just couldn’t put up with getting stuck anymore. So I went home to wait for the next step.
Which was today, August 30th. I met with the anesthesiologist for a consult, had a pre op with my gynecologist and a lab draw which I was dreading cause good lord please stop sticking me! The Dr said he wants my platelets at least above 100,000 prior to the surgery. The plan is the morning of my surgery to get a bag of platelets to boost me. So my platelets had to be about 75,000 today to even be considered possible to get the surgery on the 7th. I was really nervous that it wouldn’t be and that we’d have to postpone it until my levels get higher.
I got my lab results back at about 5pm today. And my platelets are 95,000. Which means after my platelets infusion/transfusion(?) the morning of surgery they should at the lowest be 115,000. At the better end of things they will be 135,000. Either way- high enough to keep the surgery scheduled at this point. My iron is also high for me (67) and my hemoglobin, which the Dr wanted at 10 at least- is at 14.5 so I’m doing good. I’m able to breathe a little bit, for now.
I will hear from the hematologist tomorrow (possibly) but no matter what- I see him September 5th to wrap things up and get a plan set for surgery day and after the fact. Then Thursday morning, it’ll determine what my levels are at that point- if we can proceed with surgery. So while things are still up in the air until the morning of, really, every step that comes back good- I’m able to breathe a little easier.
I’m not announcing the hysterectomy yet because i don’t want negative stories. I need to sort my emotions out and I just need support. I just need someone to tell me that this is the best choice for me if that’s what I feel, along with my doctors (all 3 of them).
I’m scared for a lot of reasons- I don’t want to bleed out and die obviously. It’s robotic so it’s not as invasive as a hip to hip type cut. But it’s still scary. I’m scared of the recovery and being in pain and jb going back to work and me being home at night with lily alone and having to get up and deal with her if she wakes up at night. I’m afraid. I’m not gonna lie. But, I’m more afraid if I don’t do this what the quality of my life will be.
I’ll keep updating as things progress.