Dr KK's IVIG ladies — The Bump
Infertility Veterans

Dr KK's IVIG ladies

Km672Km672
500 Love Its 1000 Comments Fourth Anniversary Photogenic
member
edited November 2014 in Infertility Veterans

@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!

 

 

Me (32) DOR, elevated NK Cells/ 2 copies of MTHFR mutation/ MH (35) azoo/high DFI   (TTC#1 since 2009)

IVFs#1-4: (4/10-2/12) all BFN

Surprise Bfp (9/11) - c/p

DS IUI#1-2 (9/12, 10/12) - BFN

DS IVF: (11/12) - BFN

DE/DS IVF#1: (10/13) - 2 day 3 embies transferred-BFFN

FET of 2 day 6 blasts: (12/13) - c/p

DE/DS IVF #2: (4/14) - 1 day 5 blast transferred...BFFN...again.

FET 5/14: 1 day 5 hatching blast transferred...another BFFN

Repeat SHG 6/14-normal / Endometrial Receptivity Array biopsy 7/14-Receptive Uterus

New RE, additional testing reveals elevated NK Cells

FET of 1 day 5 blast (RE recommends transferring 1 due to elevated NK cells) with lovenox, steroids & intralipids in October

 

 

 

Re: Dr KK's IVIG ladies

  • luvbostonluvboston
    2500 Comments 500 Love Its Third Anniversary Photogenic
    member
    edited November 2014
    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.
    6 m/c
    Anovulatory cycles, increased Synthroid Diagnosed Sep 2010
    Natural cycle Dec 2010 BFP M/C 6 1/2 Weeks, D&E Jan 2011
    1 Clomid/Ovidrel BFN May 2011
    Natural cycle Aug 2011 BFP M/C 4 Weeks
    1 IUI Sept 2011 BFP M/c 7 weeks
    Provera Dec 2011 BFP M/C 3 Weeks
    DQ ALPHA HLA MATCH, High NK Cells Diagnosed Dec 2011
    IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone)
    IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone)
    Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells
    Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone) 
    Went to Beer Center- high tnf, low lad, implantation failure
    Nov/Dec 2012 LIT Treatment
    Dec 12 Humira
    Jan 2013 BFP
    Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin
    Miracle Born August 2013 Premature

    Yours doesn't have to be a sad story



    image
    image


    Lilypie - (ugiy)


  • @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

    Me (32) DOR, elevated NK Cells/ 2 copies of MTHFR mutation/ MH (35) azoo/high DFI   (TTC#1 since 2009)

    IVFs#1-4: (4/10-2/12) all BFN

    Surprise Bfp (9/11) - c/p

    DS IUI#1-2 (9/12, 10/12) - BFN

    DS IVF: (11/12) - BFN

    DE/DS IVF#1: (10/13) - 2 day 3 embies transferred-BFFN

    FET of 2 day 6 blasts: (12/13) - c/p

    DE/DS IVF #2: (4/14) - 1 day 5 blast transferred...BFFN...again.

    FET 5/14: 1 day 5 hatching blast transferred...another BFFN

    Repeat SHG 6/14-normal / Endometrial Receptivity Array biopsy 7/14-Receptive Uterus

    New RE, additional testing reveals elevated NK Cells

    FET of 1 day 5 blast (RE recommends transferring 1 due to elevated NK cells) with lovenox, steroids & intralipids in October

     

     

     

  • 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.

    imageimageimageimageimage

     

    image

    TTC #1 since August 2011

    My Blog

    September 2012: Start IF testing

    DH (32): SA is ok, slightly low morph, normal SCSA  Me (32): Slightly low progesterone, hostile CM, carrier for CF, Moderately high NKC, High TNFa, heterozyogous mutated Factor XIII, and +APA

    October 2012-May 2014: 4 failed IUIs, 3 failed IVFs, and 1 failed FETw/donor embryos

    November 2014: IVF w/ICSI #4 Agonist/Antagonist with EPP and Prednisone, Baby Aspirin, Lovenox, and IVIG for immune issues.  Converted to freeze all due to lining issues.  2 blasts frozen on day 6!

    January 2015: FET #2 Cancelled due to lining issues

    April 2015: FET #2.1


    PAIF/SAIF Welcome!

  • 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.

    TTC#1 since April 2011
    IVF#1 July 2012 5R, 3 made it to blast, sET c/p
    FET#1 Aug 2012 2 blasts transferred BFN
    IVF#2 Oct 2012
    16R/6M/6F/2-8 cell grade 1 transfer
    Beta 1-237.9, Beta 2-566, Beta 3-8657
    US 6w3d shows one baby w/ HB 115
    US 7w1d no more heartbeat/ D&C 11/30/12 normal karyotype
    IVF#3 Mar 2013
    6R/4M/4F 1 compacting and 2-8 cell transfer
    ectopic pg MTX given 3 month break from TTC

    IVF#4 Sept 2013--BFN
    IVF#5-7 Apr 2014, Jun 2014 and Aug 2014 banking embryos for CCS testing. Praying for normals! Image and video hosting by TinyPic image image

    http://i61.tinypic.com/34zll06
  • 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.
    **SIGGY WARNING**

    Me: 32 DH: 35  TTC#1 since March 2012
    Dx: Poor Embryo Quality, Arcuate Uterus, Poor Uterine Blood Flow, Mild Endo, 
           Protein S Deficiency, Sjorgen's Syndrome 

    IUI #1-5: BFN
    Laparoscopy & Hysteroscopy: minimal endo, partial septoplasty
    IVF #1: 10R/6M/6F ~ Day 3 ET = BFN
    IVF #2: 14R/9M/5F ~ transfer canceled ~ all embryos arrested at 1-2 cell stage
    IVF #3: 9R/5M/5F ~ 1 frosty!
    IVF #4 (FET #1): BFN

    IVF #5 (DE IVF #1 with Dr. KK protocol): Currently PREGNANT!!!!!!
    Synthroid + Prednisone + Metformin + Baby Aspirin + Supplements Galore = 15+ pills a day
    Lupron + Lovenox + Delestrogen + IVIG + B/W = 2-5 pokes a day
    19R, 17M, 17F - transferred two Grade A blasts 11/16, four frosties!!!
    Beta #1 11/24 (13dpo/8dp5dt) = 367 ~ Beta #2 11/26 (15dpo/10dp5dt) = 709
    Beta #3 11/29 (18dpo/13dp5dt) = 1,997 ~ Beta #4 12/1 (20dpo/15dp5dt) = 3,403

    imageimageimage

    My Blog: Running and Dreaming for Two ~ All are Welcome!
  • **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.
    ***WARNING***

    TTC Since 12/2008;  DH: 32, Azoospermia     me: 33, DX during IVF #4: Low AMH (Normal FSH) / SER due 
    to IVF Meds (causing failure to fertilize) Recent DX: Hashimoto's, Lupus Anticoagulant, White Blood Cell Disorder 
    High ANA, ATA, & APA, PAI-1 Heterozygous= blood clotting disorder; connective tissue disorder 
    IVF w/ ICSI #1 2/2011     IVF w/ ICSI #2 5/2011    IVF w/ ICSI #3 12/2012   *New RE* IVF w/ ICSI #4  5/2013
    IVF w/ ICSI #5 8/2013 (Natural Cycle- No drugs)- One follicle->one blast. CCS normal. FET 9/10- 6BB blast. m/c @ 5w
    IUI #1 12/23- BFN  IUI #2 Cancelled (ovulated during AF)  Prep:CoQ10 (300 mg); DHEA (25 mg); Melatonin (3 mg), Folgard 2.2, Metformin 500 2x, Levothyroxine 50mcg, Aspirin 81mg w/ calcium, B12,  Vit. D 4000 & Prenate Elite Daily; Cabergoline 1/2 pill 2x week-  Cycling: Estrace Priming; Prednisone 10mg, Lovenox 40mg 2x,  Femera & Menopur   
    IUI #2.1 6/30 & 7/1. 1st Beta: 90 (7/15); 2nd Beta: 226 (7/17); 3rd Beta: 766   EDD: 3/23/2015

       **ALL WELCOME**                                    My Blog 
    image
    image


    Twinkie0612
  • 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-

    Me (32) DOR, elevated NK Cells/ 2 copies of MTHFR mutation/ MH (35) azoo/high DFI   (TTC#1 since 2009)

    IVFs#1-4: (4/10-2/12) all BFN

    Surprise Bfp (9/11) - c/p

    DS IUI#1-2 (9/12, 10/12) - BFN

    DS IVF: (11/12) - BFN

    DE/DS IVF#1: (10/13) - 2 day 3 embies transferred-BFFN

    FET of 2 day 6 blasts: (12/13) - c/p

    DE/DS IVF #2: (4/14) - 1 day 5 blast transferred...BFFN...again.

    FET 5/14: 1 day 5 hatching blast transferred...another BFFN

    Repeat SHG 6/14-normal / Endometrial Receptivity Array biopsy 7/14-Receptive Uterus

    New RE, additional testing reveals elevated NK Cells

    FET of 1 day 5 blast (RE recommends transferring 1 due to elevated NK cells) with lovenox, steroids & intralipids in October

     

     

     

  • 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.
    6 m/c
    Anovulatory cycles, increased Synthroid Diagnosed Sep 2010
    Natural cycle Dec 2010 BFP M/C 6 1/2 Weeks, D&E Jan 2011
    1 Clomid/Ovidrel BFN May 2011
    Natural cycle Aug 2011 BFP M/C 4 Weeks
    1 IUI Sept 2011 BFP M/c 7 weeks
    Provera Dec 2011 BFP M/C 3 Weeks
    DQ ALPHA HLA MATCH, High NK Cells Diagnosed Dec 2011
    IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone)
    IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone)
    Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells
    Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone) 
    Went to Beer Center- high tnf, low lad, implantation failure
    Nov/Dec 2012 LIT Treatment
    Dec 12 Humira
    Jan 2013 BFP
    Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin
    Miracle Born August 2013 Premature

    Yours doesn't have to be a sad story



    image
    image


    Lilypie - (ugiy)


  • 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?

    Me (32) DOR, elevated NK Cells/ 2 copies of MTHFR mutation/ MH (35) azoo/high DFI   (TTC#1 since 2009)

    IVFs#1-4: (4/10-2/12) all BFN

    Surprise Bfp (9/11) - c/p

    DS IUI#1-2 (9/12, 10/12) - BFN

    DS IVF: (11/12) - BFN

    DE/DS IVF#1: (10/13) - 2 day 3 embies transferred-BFFN

    FET of 2 day 6 blasts: (12/13) - c/p

    DE/DS IVF #2: (4/14) - 1 day 5 blast transferred...BFFN...again.

    FET 5/14: 1 day 5 hatching blast transferred...another BFFN

    Repeat SHG 6/14-normal / Endometrial Receptivity Array biopsy 7/14-Receptive Uterus

    New RE, additional testing reveals elevated NK Cells

    FET of 1 day 5 blast (RE recommends transferring 1 due to elevated NK cells) with lovenox, steroids & intralipids in October

     

     

     

  • 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!
    ***WARNING***

    TTC Since 12/2008;  DH: 32, Azoospermia     me: 33, DX during IVF #4: Low AMH (Normal FSH) / SER due 
    to IVF Meds (causing failure to fertilize) Recent DX: Hashimoto's, Lupus Anticoagulant, White Blood Cell Disorder 
    High ANA, ATA, & APA, PAI-1 Heterozygous= blood clotting disorder; connective tissue disorder 
    IVF w/ ICSI #1 2/2011     IVF w/ ICSI #2 5/2011    IVF w/ ICSI #3 12/2012   *New RE* IVF w/ ICSI #4  5/2013
    IVF w/ ICSI #5 8/2013 (Natural Cycle- No drugs)- One follicle->one blast. CCS normal. FET 9/10- 6BB blast. m/c @ 5w
    IUI #1 12/23- BFN  IUI #2 Cancelled (ovulated during AF)  Prep:CoQ10 (300 mg); DHEA (25 mg); Melatonin (3 mg), Folgard 2.2, Metformin 500 2x, Levothyroxine 50mcg, Aspirin 81mg w/ calcium, B12,  Vit. D 4000 & Prenate Elite Daily; Cabergoline 1/2 pill 2x week-  Cycling: Estrace Priming; Prednisone 10mg, Lovenox 40mg 2x,  Femera & Menopur   
    IUI #2.1 6/30 & 7/1. 1st Beta: 90 (7/15); 2nd Beta: 226 (7/17); 3rd Beta: 766   EDD: 3/23/2015

       **ALL WELCOME**                                    My Blog 
    image
    image


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