AW: First RE Appointment Was This Morning (X-Post)

meredithcarole

***Apologies in advance for the novel***

So I had my first RE appointment this morning.  Holy information overload, Batman.  

First off, I really liked the doctor.  She was personable, straight forward, empathetic, and seems to really know what she is doing (a definite bonus when you're talking about anything medical).  

We started with a consultation in her office.  I had sent in tons of pre-work and she had copies of my radiology reports both from my mc and from the ultrasound a few years ago that I insisted on because my mom had fibroids and I just had a sneaking suspicion that I did, too.  She asked H and me a few questions and told H she would have him do an SA just to make sure he doesn't need any additional focus.  Then we talked a bit about my cycles (generally very regular) and what my concerns are and what I was hoping to gain from seeing her.  I told her I was (and am) very concerned about the fibroids and the possibility of RPL.  We then got into what her thoughts are.  

She is a bit worried about my idiopathic hives (I have been getting them for 7 years with no known cause so I take a daily antihistamine to keep from being all itchy) and wants to looks for autoimmune factors (which stands to reason).  She also agreed that fibroids are a concern and flat out recommends removal (which I was prepared to hear).  What I was not prepared to hear was that due to a recent (within the last 12 months) FDA ruling the Florida Hospital system (of which her practice is a part) is not currently doing robotic surgery for myomectomy (sadly, because she is actually one of the leaders of the Da Vinci procedure here in Florida) and thus it would have to be an outright hands on surgery.  This means a 6 cm (ish) incision, an over night hospital stay, and a 4 - 6 week recovery time (as well as being benched for 3 months, of course).  It also means that I would absolutely have to do a cesarian for a future birth.  If we do nothing about the fibroids I run about a 15% chance of a second or third trimester loss.   Fuuuuuuuuck.  (Paging @rumbera28 for your thoughts on this)

So then we go to do an ultrasound.  She tells me in advance that it isn't going to give her the best view of what is going on with the fibroids so I am going to have to do a pelvic MRI.  She does a quick pelvic exam and tells me I carry my uterus low (who knew that was a thing).  She also commended on how strong my core mussels are (yay!).  I joke that it doesn't do me much good because with an 8 cm fibroid I'll never have a flat stomach and we all laugh (I am big on dry and ironic humor in stressful situations).  But, I digress.  So, she does the ultrasound and the largest fibroid from what she can see is 6 cm, but again she acknowledges that it could be her angle and the ultrasound isn't a great tool for knowing what is going on.  I mention how 3 doctors told me that the fibroids wouldn't have caused an early loss like I had and she says she agrees, but then stops and says "wait, actually I am going to disagree."  So the big fibroid is apparently fairly innocuous (other than being large and taking up room in my abdomen), but there are 2 smaller (looked like maybe 2 -3 cm) fibroids pushing right against my uterus and she actually thinks that could have been a factor and they are the ones she is now worried about.  She says of course they will take them all out regardless, but she doesn't like those 2 in particular.  Great. 

So we wrapped up the ultrasound and she takes us to another office where they will give me a checklist of everything I need to have done (which is good because I had not really been able to take notes up to this point).  They call me out to do my vital signs which all look good and then they want to do blood work.  So I get back to the room to do the blood work and there are 13 vials sitting and waiting on the counter (I once had 7 vials drawn and the session ended with my head between my knees and a cold compress on my neck because I almost passed out).  I have had 1 piece of toast and about 4 ounces of a sugary latte this morning and that was it - not good.  So the phlebotomist says "let me know if you don't feel well" and I joke (deflection again) that I already don't feel well and we haven't even started yet.  She starts taking blood and I'm not looking, I'm trying to do deep controlled breathing, but I can feel myself getting clammy and my head getting fuzzy.  She asks how I'm doing and I say not great.  She asks if I want to stop and I say no, I'd rather just get it all over with.  She informs me that she cannot continue if I am going to faint.  I say I'm fine.  She has H grab me a juice box from the mini fridge in the office and he has the nerve to ask whether I want Motts or Juicy Juice.  I pointedly tell him I really don't care, but he better hurry up and give me something.  She gets one more vial and I tell her we need to stop.  And there I am: clammy, sweaty, nauseated, and now pissed because we only got 9 of the 13 vials.  After about 5 minutes with cold compresses and my juice box (and DH's helpful "keep drinking" to which I had to reply that I was balancing hydration and glucose with not throwing up) I am finally able to sit up straight and leave.  Anyway, I survived, but I am already dreading the CD3 blood work because it is now 8 vials instead of 2 and one of those is a glucose test so I will be fasting.  That should go well.  Ugh.

The summary of this is: I have to set up an MRI,  do another 8 vials of blood work in about a week and a half, and figure out how to tell my new boss that I will be out of work for 4 - 6 weeks (that should go over well).  I have to decide when to do the surgery because I had wanted to do it before the end of the year (for insurance purposes), but that was when I was thinking we were looking at a 10 -14 day recovery.   Now I am thinking it needs to be January, but that sucks financially.  

Oh, and my last thought: for the first time in a year I am praying to God (and I am not a religious woman) that I am not KFTU (I'm in the 2WW) because I feel like it is almost a guaranteed miscarriage if I am.  Fantastic.  

Okay, rewards for making it this far.  Have some "pup" cakes (because seriously, these are frickin' adorable).  Thanks for "listening!"

tlc35

I'm glad the appointment went well, but it sucks that you have to have the open surgery.    Good luck with the rest of your bloodwork.

wannabmama23

First...I am obsessed with the pup cakes. Too adorable.

Second, I think it's great that you found a doc you can work with who sounds very thorough and careful. Information is power and now you have a plan.

Third, last time I had blood drawn, I fainted after the person left the room! I was only out for a second, but talk about disorienting and horrible! I sincerely hope I can avoid massive good draws in the future...just reading about yours made me light headed! Of course, we do what we have to do.

Thanks for the info and the long post, I'm a sponge for this information these days and ousts like this are so helpful!

(Side note: a friend had a grapefruit sized fibroid for her pregnancy and it caused all kinds of havoc--they are definitely no fun!)

flyliceandcoffee

I'm glad you found a doctor you really like, although boo on the surgery. Hopefully it will be a faster recovery than expected whenever you do decide to go for the surgery. And maybe it's the optimist in me, but maybe, just maybe, if you are KU, this will be a miracle baby and you won't have a miscarriage. I know it may be a long shot, but stranger things have happened...

lcwed

I'm glad they are going to remove the fibroids, but I am sorry it will bench you guys for so long.  I'm not a big fan of needles, so I completely understand the whole blood drama.  Hopefully everything goes well, you have a quick recovery, and I am so glad you have a great doctor who seems to know her stuff.

meredithcarole

Yeah, I will be going in fully hydrated next time.

Davie813

I know it sounds daunting, but I'm so glad you have some answers and a concrete plan of action.

Is the 4-6 weeks off work an actual requirement after the surgery, or just an estimate of how long it will likely take you to recover?

Very best wishes going forward!

Teenie16

Like PP have said at least you have information, answers and a plan. Not ideal I know. Good luck with the surgery and recovery.

meredithcarole

Davie813 said:

I know it sounds daunting, but I'm so glad you have some answers and a concrete plan of action.

Is the 4-6 weeks off work an actual requirement after the surgery, or just an estimate of how long it will likely take you to recover?

Very best wishes going forward!

Estimated recovery time (away from work - I have a very active job).

kindershlitz

Wowza girl. Lots to think about but a very good plan in the works indeed.

URMySunshine77

I'm glad that you got the information you needed to move forward; however, I am sad that you need such invasive surgery! I hope that you can find a satisfactory game plan moving forward. 

Good luck with the future blood tests.

kelley72

First, the pupcakes are adorable and I want to eat them all!

Second and most important, so glad you like your RE, have a lot of information to digest and a game plan to move forward!  I hear you on the fainting issues with giving blood... best wishes on your next visit!  Sometimes more information =s more decisions/questions.  I wish you the best!

Davie813

meredithcarole said:

Davie813 said:

I know it sounds daunting, but I'm so glad you have some answers and a concrete plan of action.

Is the 4-6 weeks off work an actual requirement after the surgery, or just an estimate of how long it will likely take you to recover?

Very best wishes going forward!

Estimated recovery time (away from work - I have a very active job).

You may actually recover a lot faster (strong core muscles can only help)!

I was given a similar time frame for my c-section, but it didn't actually take anything near that long.

meredithcarole

Davie813 said:

meredithcarole said:

Davie813 said:

I know it sounds daunting, but I'm so glad you have some answers and a concrete plan of action.

Is the 4-6 weeks off work an actual requirement after the surgery, or just an estimate of how long it will likely take you to recover?

Very best wishes going forward!

Estimated recovery time (away from work - I have a very active job).

You may actually recover a lot faster (strong core muscles can only help)!

I was given a similar time frame for my c-section, but it didn't actually take anything near that long.

I really hope so. I will be super stir crazy after a month of medical leave!

wvarn

Sounds like a very thorough and good appt. I hope all the blood work comes back good. It sounds like you have a very good Dr. I hope things work out the way you need them to.