Dr KK's IVIG ladies

Km672

@Twinkie0612 & @Runcc37 & anyone else with any experience/advice-

 Hey ladies,

My KK appt isnt until January at the earliest, most likely as late as march, if I change jobs.

I'm thinking she may prescribe IVIG for my elevated NK cells (were 12.7). I know the 1st infusion has to be done in Chicago, but I'm trying to think ahead and if I take this m-f job, I don't think it will go over well if I am doing IF treatments and I'm having to travel or miss work frequently. Are either of you working with a clinic or service which will provide these services on an evening or weekend?

Also, which lab does she use to monitor you during treatment?

Do you mind if I ask you what insurance you have? I know it varies by plan, ect. but obviously I am hoping it would be covered.

I know if you are on lovenox during a cycle for poor uterine blood flow that also needs to be done in Chicago.

While I am no where mentally or physically ready to start again, I'm trying to sort out the logistics and see how I could potentially balance this treatment.

Best of luck on your cycles ladies! I'm rooting hard for you both!

 

 

luvboston

IVIG gets done in my home by a nurse it's $300. IVIG is $2700. You can get IVIG whenever you want they ship it to your house. Lovenox you take yourself every day at home. My insurance doesn't cover IVIG at all.

Km672

@luvboston‌ - do you know what kind of hours this can be done? Can you pm me the clinic info, as I am in MA too. Thx so much

Twinkie0612

KK does want you to have your first infusion in her office, then after that she will prescribe through a home infusion service fo out of town patients.  You might be able to get her to let you do your first infusion locally if you use an infusion center instead of a home nurse.  The big issue is making sure you don't have a reaction to the IVIG.

If you have blood flow issues, she will want you to have a Doppler u/s during your cycle to make sure the lovenox is working well.  

Some cycle blood work can be done at any lab, but NK and cytokine monitoring must be done through her lab at RFU.  They will mail kits that contain vials for the blood then you overnight them to the lab.  This can get tricky since most labs won't draw your blood and then give the vials back to you.

I have Cigna and KK is in network for me.  All of my initial blood work was covered as well as my follow up NK cell and cytokine monitoring.  I am still trying to get my blood work through quest resubmitted.  Their financial person at KK's office is nearly impossible to get a hold of.  Amazingly they got IVIG covered for me, but that coverage will depend on your insurance and diagnosis.

hmz819

I have UHC. I'm waiting to see if my ivig claim is approved. I am not doing the first dose in Chicago. My RE here is on board with the treatment plan so I will get ivig here through infusion in my home (at least that's the plan for now). I also found my local mfm can do blood flow us so I can get that done here as well. (Blood flow hasn't been an issue for us in the past. We did decide I will go to Chicago for an us for upcoming fet since its been over a year since my us with them but after this one any other blood flow us I will have done here).

Let me know if you have any other questions.

RunCC37

Twinkie basically covered it. It was completely overwhelming to figure it all out, so feel free to PM me if you want to connect and talk about it. 

I live 800+ miles away from Dr. KK's office, and have managed to only go in twice so far. The initial work up and the Doppler/first IVIg. I was able to do my follow-up over the phone, and email regularly through the portal to address questions as we go. 

I found an in-home nurse to administer my weekly infusions (Accredo). It's definitely a bit surreal to have an IV pole in my home. I, of course, decorated it for the holidays with garland and lights. 

Feel free to PM me if you want to talk more I was definitely skeptical about the whole thing (I think impatient was more like it), but as it turns out, I have an autoimmune disease... I probably would've gone years without knowing.

poohniki

**paif response**
I am under dr KK's care. I have been in lovenox since 6 days after my last period. I could not swing going out there for a doppler to check bloodflow so I never went until I was 8 weeks pregnant.
I also have in home IVIg infusions on Saturday or Sunday. I lucked out as my nurse works in a school so she is only available nights and weekends.
I know dr kk initially wants weekly scans early in pregnancy- but they understand if you can't do everything. I deal with Michelle in the office and she is really good and gets it.
I have bcbs in NJ. I was denied a few times but it eventually got approved (not until after my cycle) and I also use accredo for my infusions. Good luck! @Twinkie0612‌ and @runcc37 covered everything and I'm probably just saying the same thing.

Km672

Thank you ladies... I have a lot of anxiety about going down this route.

I called my new health insurance to verify if I can get my labs drawn at my new job site and they said that because she is in network, all of it can be done and will be covered wherever she orders it.
As for the lab work that must be done in her office, fortunately I have plenty of friends who are nurses and can draw it for me.
I guess it won't be too big of a deal to have a day off to travel and get an infusion and u/s if needed.. Oh and a couple of days for transfer...

@poohniki- thank you for pointing out that they will understand if I can't do everything. I can't imagine being able to do weekly scans. I'm nervous about the prep to just make it to transfer!! Huge congrats to you, lady. I've been following your blog and I'm so happy for you-

luvboston

Km672 said:

Thank you ladies... I have a lot of anxiety about going down this route.

I called my new health insurance to verify if I can get my labs drawn at my new job site and they said that because she is in network, all of it can be done and will be covered wherever she orders it.
As for the lab work that must be done in her office, fortunately I have plenty of friends who are nurses and can draw it for me.
I guess it won't be too big of a deal to have a day off to travel and get an infusion and u/s if needed.. Oh and a couple of days for transfer...

@poohniki- thank you for pointing out that they will understand if I can't do everything. I can't imagine being able to do weekly scans. I'm nervous about the prep to just make it to transfer!! Huge congrats to you, lady. I've been following your blog and I'm so happy for you-

They might understand but from experience if you don't do everything they say things usually don't turn out well. Also depending on your issues it is essential they get the ultrasound info every week of the first trimester.

Km672

I guess I'll just have to see what issues I'm dealing with.

These scans can be done @ an OB office, they don't have to be in Chicago, correct?

poohniki

The doppler blood flow test isn't typically done in an OB's office and the MFM won't do them until 26 weeks. I found an out of pocket doppler place in NYC (which is close to me) just in case I needed one- but I was having growth scans every week until 8 weeks- went to Chicago at weeks 6 & 10 and had an appt with the MFM at 14 weeks (earliest they would see me). I was getting weekly bloodwork, biweekly infusions, and follow-up bloodwork for that. Luckily my blood flow improved a lot from the lovenox quickly and they were comfortable with being monitored by the OB/MFM as long as I could come back if any of my numbers became really off.

Good luck!