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Autoimmune disease and Dr. Kwak Kim *pg, child and loss ment

For discussion of male/female diagnostic fertility testing, corrective surgical procedures (HSG, HSC, LAP, ultrasounds, biopsies, analysis, varicocele surgery, etc.), and related medical issues.

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Postby catwoman » Thu Dec 06, 2012 9:18 pm

Hi, Wendy,

I just happened to be online when I got an email saying someone had posted to this site.

First, I am SO SORRY for your many losses. I can only imagine how devastating that must be. I'm so glad you found out about Dr. Kwak!!

Thank you for your words of congratulations. I enjoy sharing about Dr. Kwak because she is very helpful, compassionate and brilliant.

Below your questions are my answers:
1. Will Dr. KK still treat me if I am in the middle of an IVF cycle (but prior to transfer)? I'm on her waiting list but not hopeful because of the holidays.

Answer: I think it's a good question to ask her. Personally, I would wait and be on her protocol 1-3 months before beginning IVF treatments because her treatment will help strength your eggs' quality, will help your body to respond better to the RE's treatment and will help in staying pregnant. It's always best to ask her, but that's my suggestion.

2. Those that did IVIG, how did you afford it? I'm not sure my insurance (Aetna) will cover it, but maybe using an immune diagnoses code will help.

Answer: Stacy is a good one to talk to on this. I'll send her a note to view this thread.

3. Would a Rheumatologist help more than Dr. Kwak-Kim or should I still go see her in January? I really want to see her and be under her care, but I think I also need someone local to administer the IVIG because I'm not willing to fly to Chicago everytime I need IVIG (every 3 weeks) or have an ultrasound.

Answer: You can get the ultrasound done in the city where you live as I did. When you are at that point, please let me know and I can explain to you how I went about that. It's a different type of ultrasound, but I found an ultrasound group willing to learn it.

If you think the rheumatologist will be open to working with another doctor and can do IVIG, it's not a bad idea to visit with one. You just never know how open doctors will be to working with another. You'll definitely want to find a local spot to do it. Stacy lives near Dr. Kwak's office so was able to drive to her office for it.

The rheumatologist will not want to prescribe any medications while you are trying to get pregnant, so I think Dr. Kwak is your best bet in terms of treating a disease process and diagnosing an underlying condition for right now.

----
Be sure to take a copy of all your blood work. I am sure much of it won't have to be re-run. Though you are on a wait list for earlier, when is your appointment scheduled as of now?

Please keep us updated and let us know if you have any other questions. We're praying for you!!
catwoman
 
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Postby WendyM » Thu Dec 06, 2012 9:28 pm

Catwoman,
Thank you so much for your answers. But to give you a little more information, I've done IVF several times and now have 11 frozen embryos just waiting for a home in my tummy! It's a good thing too because I now also have ovarian reserve failure. Of course I wont transfer that many, probably only 2, but that gives me a fighting chance for those to survive thawing. They are perfect little embies too!

As for the rheumatologist not prescribing anything while I am pregnant, you are probably right and I didn't think of that. So thank you! Now I can't wait to go see Dr. Kwak-Kim next month!

I will definately keep you updated and hope that I have a BFP in my near future.

Wendy
WendyM
 
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Location: Southern California
Gender: Female

Postby AceMom » Thu Dec 06, 2012 10:58 pm

Wendy,

I hope we can be BFP buddies too!!! And soon! I do like Dr. KK's office, but do have some different problems than you. It is funny, I also found Dr. Braverman first online and spoke to him on the phone but then went with Dr. KK since I could drive to her (6 hours).

Hopefully she won't have to repeat too many tests, but I went in Sept. and only had to wait 2.5 weeks for all of my results and my phone consult. My only advice would be to schedule your phone consult now for after your initial appt. that way they can always cancel if they don't have all your results back but if they do then you are already on the schedule!

I am not sure about the IVIG, I have not heard of anyone's insurance covering it. As of now, I haven't needed it.

Kathleen
TTC since '06
5/09- IVF #1 w/ ICSI- BFP, DS born 1/4/10
1/12- IVF #2 w/ ICSI- BFN
6/12- IVF #3 w/ ICSI- BFN
Became a Dr. Kwak Kim patient (blood clotting & auto-immune)
1/13- FET- BFP, 1st beta 85
2/19/13- HB 125!!! Measuring right on track!
2/26/13- M/C 8 weeks
9/13 new RE, FET, 2 embies transferred, BFP! DS born 6/10/14 (3 frosties waiting)
AceMom
 
Posts: 278
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Gender: Female

Postby catwoman » Thu Dec 06, 2012 11:40 pm

Hi, Wendy,

I didn't catch that they were frozen embies. It sounds like a wonderful question for Dr. Kwak as to when she would start treatment, but I think she'd start right away.

I believe Stacy's insurance first denied her coverage, and she jumped through some hoops to get coverage. I know she will have many tips.

Please keep us posted!!
catwoman
 
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Postby stacy_brooke » Fri Dec 07, 2012 11:18 am

--------------Pregnancy and child mentioned-------------------


Wow, its been a long time since I've updated here. Thanks to catwoman to alerting me that this thread was still active! A lot has happened since I last posted, my Dr. Kwak baby girl is now nearly 2 1/2 years old and I've since had a baby boy who is 4 months old today. He surprised us and came into the world early at 31 weeks gestation so he had to spend 6 weeks in the NICU, but he is doing great now and seems to have no issues from his prematurity. I was under Dr. Kwak's care for his pregnancy as well.

As far as getting IVIg coverage, I was able to get it covered on 2 different Blue Cross Blue Shield plans for both my daughter and son's pregnancies. Both were PPO plans. With my daughter, I initially ordered my IVIg through Columbia pharmacy (the one Dr. Kwak's office recommends) and when they put it through insurance it was denied. I paid for the first 4 treatments out of pocket which was tough because it was SO expensive and Dr. Kwak wanted me to do IVIg frequently. I had to get some of my other medications through a specific mail order pharmacy, so I decided to try sending my IVIg prescription to them to see if I had any better luck. They wanted some more info and a letter of medical necessity which Dr. Kwak's office happily sent them and they agreed to cover it! That was amazing news as I would not have been able to afford to continue it throughout my pregnancy had they not agreed to cover it.

My husband's company merged with another company by the time I had my baby boy so I was worried about getting it covered again. It was still a Blue Cross Blue Shield plan, but a different plan from what I had with my daughter. This time, I was a little more seasoned on how to get it covered so I went directly to the mail order pharmacy my insurance required me to use (Caremark) and they again needed some info from Dr. Kwak's office and they were great about giving them everything they needed and they agreed to cover it again for a $50 copay! Amazing!

So I really don't have any secrets other than calling your insurance and finding out what specialty pharmacies they require you to use. From there, Dr. Kwak's office is awesome about writing letters of recommendation and sending them supporting info to get it covered. As catwoman mentioned, I live about an hour and a half from Dr. Kwak's office so I was able to have all my treatments done there so I'm not much help in finding someone local to administer the IVIg since I never had to go that route. I have heard there are nurses that can come to your house and administer it though, or possibly getting your OB or RE on board to administer it. Good luck and I will be keeping you all in my prayers!
Stacy
DS1 - 5/2006
followed by 4 losses - 12/07, 7/08, 2/09, 7/09
testing with reproductive immunologist = success!
DD - 7/2010
DS2 - 8/2012
stacy_brooke
 
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Postby gingerale » Fri Dec 07, 2012 9:48 pm

What is IVIg?
Allie 32- :)
DH 32- low everything :(
TESE 9/16/11 sperm found! :)
IVF/ICSI Dec 2011 BFN :(
IVF/ICSI July 2012 BFN :(
IVF/ICSI Mar 2013 CANCELED
DH - Clomid 3 months
IVF/ICSI/TESE July 2013- 9 embies died on Day 3, no transfer :(
DS arrived 11/4/14 :)


"Jesus said . . ., 'Don't be afraid. Just believe.'" Mk. 5:36
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Postby stacy_brooke » Fri Dec 07, 2012 10:26 pm

IVIg is a treatment that is used for women with autoimmune issues that are either preventing pregnancy from happening or causing recurrent miscarriages. Its a blood product that contains antibodies from many different donors. It calms the immune system and keeps it from attacking the embryo. It tells more about it here:
http://www.sharedjourney.com/articles/ivig.html
Stacy
DS1 - 5/2006
followed by 4 losses - 12/07, 7/08, 2/09, 7/09
testing with reproductive immunologist = success!
DD - 7/2010
DS2 - 8/2012
stacy_brooke
 
Posts: 23
Joined: Fri Jul 10, 2009 8:46 am
Location: Chicago suburbs
Gender: Female

Postby HolliS. » Sat Dec 08, 2012 11:03 pm

Hi Ladies,
I am new to this forum and I wanted to share my happiness and success with Dr. Kwak-Kim as well! :D After 6 years of undiagnosed infertility, we had our testing done in Aug 2010 and she found that I had many immune disorders including: Idiopathic Thrombocytopenia (Low platelets), Natural Killer cells, and low folic acid. We have had many very faint pregnancy tests and two miscarriages at 6 and 8 weeks, so getting answers was just so wonderful. Every doctor in our town said "We don't know....just do in-vitro." That answer was unacceptable to me. They even went so far as to call me crazy when I said I had an appointment to see Dr. KKim.

Christmas Day 2010, we found out we had naturally conceived and I immediately called Dr. KKim's office. The on-call nurse called Dr. KKim (she was on vacation to see her family in South Korea!) She called me back PERSONALLY (from South Korea!) and told me to take a baby aspirin, Prometrium, and a crazy dose of folic acid and get up to see her as soon as possible! THIS WAS THE DOCTOR FOR US!!!!

Long story short, we drove the 8 hours round trip every Friday for 6 months to receive ultrasounds and blood work. I received 12 IVIG treatments during my pregnancy. The first 2 double doses were $8,000 out of pocket. We panicked realizing that we would NEVER be able to afford the treatments! I fought the insurance company hard-armed with info from Deljuanna (Dr. KKim's nurse)- and WON! I received the rest of the IVIG treatments in my own home. Such a blessing! Our wonderful family also held a benefit to help us pay for my outragous out-of-network deductible. God is so good!!!! Our miracle, Lydia Rose came 6 weeks early at 4lbs 14 oz and needed just 10 days of NICU. She's now a very healthy 16 month old! She is the joy that we have been missing in our lives!

EVERYONE should consider Dr. Kwak-Kim to find out why they are having miscarriages or undiagnosed infertility! She AND her staff are amazing and treat you like family the entire time! We would do it all again in a heartbeat! My high-risk OB/GYN was amazing helping to get Lydia here, but he totally thought I was crazy for going to Chicago every week. He did not agree with a single thing I was doing, but backed me up and did every
thing Dr. KKim told him to do. He even sent one of his patients up there! He said there was no proof in what I was doing and it was "Way out of the box!" I told him obviously it's working! He was so relieved when I delivered (my cervix thinned very fast and strict bedrest didn't work, so he did an emergency C-section since my platelets were not always stable from week to week). Remember ladies, you have to be your own advocate. My gut said "Dr. Kkim has my best interests in mind" and she would not jeapordize my health or the babies by prescribing something dangerous!

I also have two more happy stories of success from Dr. KKim's. My good friend and her hubby also had auto-immune (thyroid, blood clotting disorders) and both her sons (Gus is 2 and Eli is 7 weeks) are little miracles from IVIG, Metanx, and Lovenox, Prednizone, and Progesterone and Estrogen. Her immune problems got better with her 2nd pregnancy. She had 6 IVIG's with Gus, and only 1 with Eli!

We just celebrated my cousin's miracle twins birth yesterday (Winnie-after our grandma- and Hank)! She was treated for thyroid, blood clotting, and immature eggs. They did IVF, but were told they could conceive on their own if they chose to. She didn't receive any IVIG but did take Metanx, Lovenox, Prednizone, and Prog/Est when needed.

Infertility is such a terrible suffering-especially for those having miscarriages. It made me struggle with my faith in God. But God helped guide her into our lives. Dr. KKim is such a blessing because you are not just a number to her you are a human being desiring to be a mother. I hope that I have given you hope to go to Chicago. It's worth everything just to know the cause of your infertility. Sorry so long! Just wanted you to know that there are so many success stories out there! Too many to count! Just look at her office wall and see the pictures!
Love and prayers for those still waiting,
:D Holli :D
HolliS.
 
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Postby AceMom » Sun Dec 09, 2012 3:49 pm

Thanks Holli! It is great to hear! I think I have to drive out this week for bloodwork (6 hours) since I can't find anyone in MI that will draw the blood and give it to me to ship to her (or ship directly to her). But I know it is worth the hassle.

Kathleen
TTC since '06
5/09- IVF #1 w/ ICSI- BFP, DS born 1/4/10
1/12- IVF #2 w/ ICSI- BFN
6/12- IVF #3 w/ ICSI- BFN
Became a Dr. Kwak Kim patient (blood clotting & auto-immune)
1/13- FET- BFP, 1st beta 85
2/19/13- HB 125!!! Measuring right on track!
2/26/13- M/C 8 weeks
9/13 new RE, FET, 2 embies transferred, BFP! DS born 6/10/14 (3 frosties waiting)
AceMom
 
Posts: 278
Joined: Mon Jul 16, 2012 4:02 pm
Gender: Female

Postby HolliS. » Sun Dec 09, 2012 11:50 pm

Kathleen,
I was always able to have my blood drawn at a hospital lab and since Dr. KKim's order stated that I was to send it myself, they gave me the blood and I Fed-Ex'd it for like $8.00 overnight. I had to be kind of rude to one nurse that was confused by my order and didn't want to send it with me. Since I had to get my blood drawn a lot in my 3rd tri-mester, this was by far easier and safer than traveling 8 hrs to her office. Talk to the office about your situation and I hope they can help! Good luck! Still praying for you!
Holli :)
HolliS.
 
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Postby KatieJ » Mon Dec 17, 2012 2:41 pm

Good afternoon everyone,

I just started researching Dr. Kwak-Kim and a search led me to this board. I thank you all so much for being willing to share your stories and knowledge! After many years of primary infertility, I'm afraid we're reaching the end of the line and I need to figure out if we should pursue this.

I do have some quick questions, what is the best way to get in contact with Dr. K? It appears she works at Rosalind Franklin University - do I just email or call her there? Or is there an IVF clinic she is affiliated with that I call? It appears that she has you come to Chicago for your initial bloodwork/exam, then after your diagnosis, she supplements your treatment plan as you cycle back home. Is that correct?

Thank you in advance!
KatieJ
 
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Joined: Mon Dec 17, 2012 2:14 pm
Gender: Female

Postby AceMom » Mon Dec 17, 2012 5:19 pm

Katie J,

Yes, call there first. There is an online new patient form you must fill out, very detailed, and then you must get all your medical records to them BEFORE you can even schedule an appt. Then once you can schedule, there may be a few week delay before her first opening.

She does not perform IVF, so the treatment is combined with what your RE is doing.

Kathleen
TTC since '06
5/09- IVF #1 w/ ICSI- BFP, DS born 1/4/10
1/12- IVF #2 w/ ICSI- BFN
6/12- IVF #3 w/ ICSI- BFN
Became a Dr. Kwak Kim patient (blood clotting & auto-immune)
1/13- FET- BFP, 1st beta 85
2/19/13- HB 125!!! Measuring right on track!
2/26/13- M/C 8 weeks
9/13 new RE, FET, 2 embies transferred, BFP! DS born 6/10/14 (3 frosties waiting)
AceMom
 
Posts: 278
Joined: Mon Jul 16, 2012 4:02 pm
Gender: Female

Postby KatieJ » Mon Dec 17, 2012 5:33 pm

Thank you so much for the quick reply. After a long break, I finally got the courage to schedule an appointment with my RE to discuss our options. It's scary because DH and I have never had success, and we have just one frozen embryo left.
KatieJ
 
Posts: 2
Joined: Mon Dec 17, 2012 2:14 pm
Gender: Female

Postby AceMom » Mon Dec 17, 2012 5:46 pm

I would call Dr. KK now and get started on the paperwork and then talk with your RE in the meantime. Most REs aren't going to be a fan of or believe in what Dr. KK practices. If they did, they would be practicing it themselves. But there is some research and alot of stories to show that it helps.

Have you had the recurrent loss screening done at your RE? That can be a good starting point. They should be willing to do it even if you have only had BFNs.

Also, read the book Is Your Body Baby Friendly by Dr. Beers. Dr. KK treatment protocol is based on it.

Kathleen
TTC since '06
5/09- IVF #1 w/ ICSI- BFP, DS born 1/4/10
1/12- IVF #2 w/ ICSI- BFN
6/12- IVF #3 w/ ICSI- BFN
Became a Dr. Kwak Kim patient (blood clotting & auto-immune)
1/13- FET- BFP, 1st beta 85
2/19/13- HB 125!!! Measuring right on track!
2/26/13- M/C 8 weeks
9/13 new RE, FET, 2 embies transferred, BFP! DS born 6/10/14 (3 frosties waiting)
AceMom
 
Posts: 278
Joined: Mon Jul 16, 2012 4:02 pm
Gender: Female

Postby catwoman » Wed Dec 26, 2012 2:12 pm

Hi, Katie!!

Definitely call Dr. Kwak as soon as possible so you will have all options available to you. She's awesome!! Please keep us posted!!
catwoman
 
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