Tw: update on me

[Jalapeñomel]

Aug 13, 2021 12:08:20 GMT -5 pinkpeony08 said:

Update: all still looks good on ultrasound. Waiting on labs. Will probably feel like we are holding our breaths until 15 weeks, but getting there. Thank you all for your support ❤️

Woohoo! Congratulations!

[pinkpeony08]

Now past all but the date of the latest loss. First trimester screen ultrasound at 13w2d today - all was good! Now waiting for the screen blood work since I’ll be 40 by the time this one is due.

[achi]

I haven’t been on the board in awhile but I’ve been totally creeping your post. Congratulations, I’m so happy for you!!

[Mushe]

I’ve been stalking this thread for your updates, and I’m so excited to see this! Keeping you in my thoughts.

[Jalapeñomel]

[mention]pinkpeony08 [/mention] These milestones you’re surpassing…! I’m so happy for you, and I’ll keep you in my thoughts for each new milestone coming up.

[pinkpeony08]

Thanks all. Feeling nervous - my ANA just switched to positive for the first time ever and my anti-dna antibody also just turned positive. Hopefully the meds will take care of it, but I was just feeling like I was maybe going to turn kind of corner.

[pinkpeony08]

I don’t fully know… I have an appointment with the reproductive immunologist Wednesday to learn more. She said it’s not uncommon for them to see labs change like this in patients with a history of recurrent loss. They manage with ivig. When I look on pub med, it looks like the anti-Ss dna is linked to heart defect, pre eclampsia and other issues. I’m seeing recommended treatment is ivig. My insurance refuses to pay for ivig, so ive been paying out of pocket for ivig. I’m hoping this may push the appeal to get covered, but the immunologist (not reproductive immunologist) office is a huge pain. I’ve already started calling, but it just feels like so much stress. I continue to brace myself for bad news at every appointment. I see my local ob Thursday, which sort of feels a long way away right now.

[pooh8402]

I wonder with the recent lab changes, y'all (meaning your provider) could appeal to your insurance for coverage of the ivig? This is new information and a change in your health status.

[pinkpeony08]

Aug 23, 2021 14:49:19 GMT -5 pooh8402 said:

I wonder with the recent lab changes, y'all (meaning your provider) could appeal to your insurance for coverage of the ivig? This is new information and a change in your health status.

That’s my hope! I called again today but this immunologist office is really something else. I’m a health care provider myself, and it’s honestly pretty unbelievable. I’m going to ask the np on Wednesday about other suggestions if I still don’t hear back before then. I have a rheumatologist locally (who didn’t find anything before) and wonder if he might be willing to submit with this new information. Though unsure. Removing an every two week $2200 bill would be amazing.

[pooh8402]

Good grief. Hoping that someone in the office gets moving! Getting rid of that bill would be amazing.

So glad this one is sticking so far! I'm continuing to monitor this thread and sending you all the good juju!

[pinkpeony08]

Latest update: 15.5 weeks, measuring 3 days ahead at scan today. Waiting for labs, hoping to wean down on some of these meds bc I’ve been feeling lousy. It still doesn’t feel real. My maternti21 came back less than 1:10,000 (yay)!

Still dealing with the immunologist office, who wants me to come back to their office. I’m waiting to hear from the infusion clinic office if their dr will appeal if I send articles for them to use.

[Mushe]

Oh my gosh, great update! Continuing to send you good thoughts.

[choppinbroccoli]

pinkpeony08, I am a newb over here, but I just read through this whole thread, and I am cheering so hard for you!!

I'll have my first appt with Dr. Derbala on 9/13! I thought I'd ask something regarding the IVIg.

A fellow RI patient mentioned having success in getting IVIg covered going through MIDC (Metro Infectious Disease Consultants). Have you heard of them? This girl said that she had denials for it, but after going through them, got it covered! I know it's such a pain, so I wanted to offer that in case it might help. Please feel free to tell me to STFU if I'm overstepping!

Best wishes for continued success. Praying that those of us down this road get our rainbow babies. <3

[pinkpeony08]

Sept 2, 2021 16:06:11 GMT -5 choppinbroccoli said:

pinkpeony08 , I am a newb over here, but I just read through this whole thread, and I am cheering so hard for you!!

I'll have my first appt with Dr. Derbala on 9/13! I thought I'd ask something regarding the IVIg.

A fellow RI patient mentioned having success in getting IVIg covered going through MIDC (Metro Infectious Disease Consultants). Have you heard of them? This girl said that she had denials for it, but after going through them, got it covered! I know it's such a pain, so I wanted to offer that in case it might help. Please feel free to tell me to STFU if I'm overstepping!

Best wishes for continued success. Praying that those of us down this road get our rainbow babies. <3

Thanks!  I am actually going to MIDC for my infusions!  I just left a message for them to see if they would appeal because they are so much easier to work with.  I haven't heard back yet, but hoping someone will call me tomorrow?  

I hope you get answers and your rainbow with Dr. Derbala!!

[Jalapeñomel]

Such a great update [mention]pinkpeony08 [/mention] !!

[pinkpeony08]

Ugh, the prednisone makes me feel miserable, and I told the RI clinic such this week. She was hoping to taper if my immune labs were improved, but they are worse. She wants me to go up again for a few days then back to the same dose. It makes me cranky and @@@ short with my kids, which is not me @@@, can’t sleep past 5:30 am. I feel like it’s never ending right now - I just want to go down on the dose and I’m seeing that some people are on it for another 10 weeks. Every time the labs aren’t good, I feel panicked that it means I’m going to lose this one too. We really haven’t told many people at all because we are so afraid of another loss, and honestly dread telling people. I just want to hit fast forward.

[stellelinds25]

pinkpeony08 I strongly dislike prednisone...and I can't imagine being on it while pregnant. Sending you lots of good vibes that you can taper/stop it soon. And sending hugs for the mental toll this is all taking, one day at a time <3

[choppinbroccoli]

Sept 4, 2021 6:44:31 GMT -5 pinkpeony08 said:

Ugh, the prednisone makes me feel miserable, and I told the RI clinic such this week. She was hoping to taper if my immune labs were improved, but they are worse. She wants me to go up again for a few days then back to the same dose. It makes me cranky and @@@ short with my kids, which is not me @@@, can’t sleep past 5:30 am. I feel like it’s never ending right now - I just want to go down on the dose and I’m seeing that some people are on it for another 10 weeks. Every time the labs aren’t good, I feel panicked that it means I’m going to lose this one too. We really haven’t told many people at all because we are so afraid of another loss, and honestly dread telling people. I just want to hit fast forward.

I'm sorry for the pred side effects. I'm dreading being told to start it eventually. I already have a moon face, so you want me to have a SUPERmoon face?? Haha.

And I so understand the "hit fast forward" mindset. Loss ruins all future pregnancies, I swear. You're just constantly waiting for the other foot to drop. I often tell people I wish that I could just be put in a coma until I'm in the clear.

Hang in there. You're passing milestones and this will all be worth it eventually!!

[pinkpeony08]

Just coming back for an update.

I had a panic moment earlier this week with this weird pelvic pressure and panicking that it was contractions and something was wrong. Thankfully my OB office (even though my OB wasn't there) got me in with an NP within a few hours and she checked everything - looked great - and she didn't make me feel crazy for coming in.

I was at the RI today - things look fine on the ultrasound, growing appropriately still. They did see an echogenic spot on the heart, but because my Materniti21 was so low risk for Downs, they think it will probably just go away. Now I'm waiting for lab results. I was able to stop PIO last week - hoping I can stay off it pending my progesterone level. And was able to go down a tiny bit on my prednisone bc they want me off before my glucose screen, so crossing my fingers my labs are ok today. Going to my great grandmother's memorial service this weekend, and I think still holding off on telling extended family/family friends but will likely spill the beans at work next week, etc.

[pinkpeony08]

Anatomy scan today- everything looks good.

My nk cells are improved my cytokines/inflammation is still high. Still doing ivig, but grateful to be this far. Still sort of feels unreal and still can’t fully relax though better than we were at the beginning

[pandora89]

Oct 7, 2021 11:37:12 GMT -5 pinkpeony08 said:

Anatomy scan today- everything looks good.

My nk cells are improved my cytokines/inflammation is still high. Still doing ivig, but grateful to be this far. Still sort of feels unreal and still can’t fully relax though better than we were at the beginning

So glad the anatomy scan went well!! I’ve been checking back almost everyday for an update from you.

[achi]

I’m so happy to see that it went well. PGAL is just awful.

[woowoo]

pinkpeony08, I just saw this latest update - I was on here at the same time as you a few years ago. Congrats to you and I'm hoping so much this is it for you. Hugs, I don't blame you for feeling the way you do.

[choppinbroccoli]

pinkpeony08, I hate the worry that you face with PGAL, but if it gives you any warm fuzzies, your updates give me such hope. I am so happy for you.

[pinkpeony08]

Thank you all so much. I really appreciate all your good thoughts. I’ll keep updating if you’d all like!

I know we won’t really feel like we made it until we are holding a baby in our arms. But the scans and feeling movement definitely help.

[Jalapeñomel]

Such a great update! Every day is one day closer. Sending you so much love.

I swear I have PTSD from IF and my loses. It’s no joke.

[pinkpeony08]

Just circling back with an update- 23 and a half weeks, measuring on time today at the RI office. It drives me crazy how doom and gloom they are, but I had a decent visit today! I'm tapering my prednisone and estradiol, hopefully progesterone as well pending my labs today!

[Jalapeñomel]

Oct 28, 2021 19:51:11 GMT -5 pinkpeony08 said:

Just circling back with an update- 23 and a half weeks, measuring on time today at the RI office. It drives me crazy how doom and gloom they are, but I had a decent visit today! I'm tapering my prednisone and estradiol, hopefully progesterone as well pending my labs today!

23 weeks?! OMG! So exciting!

[pinkpeony08]

Oct 28, 2021 20:12:29 GMT -5 Jalapeñomel said:

Oct 28, 2021 19:51:11 GMT -5 pinkpeony08 said:

Just circling back with an update- 23 and a half weeks, measuring on time today at the RI office. It drives me crazy how doom and gloom they are, but I had a decent visit today! I'm tapering my prednisone and estradiol, hopefully progesterone as well pending my labs today!

23 weeks?! OMG! So exciting!

I still sort of don't believe it!

[dove]

pinkpeony08 almost there - past the halfway mark! I am so happy for you!