sad day

[anonymous]

Well, I knew I could come here to share some sadness and ask for some support so here goes.

Mark and I are scheduled to do IVF in October of this year. He is scheduled for this Monday (16th) to have a MESA sperm retrieval done and then frozen to wait till October. We were going to use a military doctor free of charge but then his testosterone and FSH levels dropped (I believe due to colistin-but that's a whole other story) so he referred us to an outside reproductive urologist. They preauthorized the MESA retrieval and by golly Tricare (our insurance) authorized it, so we decided to stay there instead of going back to the military doctor.
So it was going to cost us $2500 if we stayed with the civilian, but now insurance was going to cover it. Then I get a phone call this afternoon, 2.5 working days before the procedure. "oh, we had them preauthorize the wrong thing so last week we resubmitted the correct preauthorization and they denied it". I went back to the military doctor to see if he could help but due to all the deployments to Iraq and the Mercy being deployed for the Tsunami relief, they are short staffed and are not currently performing elective procedures. So I called the civilian doctors office, asked about billing, and was also informed "oh, well we never explained this before because tricare said the would cover it, but in addition to the doctors fee of $2500, there is an $1800 fee for the surgery center and anestesia". We are now looking at $4300 to just get sperm out of his testicles, not including $$$ for the IVF.

Mark and I are both heartbroken because we have made the decision this afternoon that we can not afford to go through this procedure. I am absolutely crushed and am just finishing up a rare early day at work (thank god) and it is taking all my composure to hold it together. I just wanted to write on here, writing always helps me when I am upset.

Thanks for all those who can listen.

Julie (wife to Mark 24 w/cf)

 

[Emily65Roses]

I'm sorry. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Insurance is the devil. Hang in there, hopefully you can do it soon enough. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Julie,

I am so sorry to hear about your news today. You are such a wealth of knowledge and so helpful to everyone on this site.

I know that you and Mark have made your decision, and I respect that. I know you have extensively studied this before you decided to proceed. So you have probably already researched this, but: How long can the sperm stay frozen? Would the dr accept a payment plan? Even if Mark's part isn't covered, are you sure they would refuse your part in October? Would it be possible to have Mark's part done as a civilian and then wait just a bit later if needed for the IVF from the military dr?

I just hate to see you have to put your plans on hold because of money and faulty insurance information.

I am thinking of you and Mark.

 

[anonymous]

Hi Julie,

I too am so sorry to hear the news but don't give up. Like the last poster mentioned maybe you guys can come up with a payment plan. Keep the faith as you have always been an inspiration to me. You are both in my prayers .

Keep us updated ok.

Denise

 

[anonymous]

Thank you all for your kind words, it is much appreciated.

as far as the sperm freezing, it can be cryopreserved (frozen) indefinetly. They have some sperm that has been frozen for more than a decade so the time in freezing it really isn't a problem. It was our intention to have Mark's sperm retrieved now and frozen until October. Then in October they were going to retrieve eggs from me fertilize them with the frozen eggs, do the ICIS procecure where they inject the sperm directly into the egg. Then they monitor them to become embryos, usually three days, sometimes 5. Then they would implant 1-2 of the best into me after those 3 or 5 days and freeze the rest of the embryos for a future implantation.

I did call the doctors office after talking it through with mark to tell them we were canceling for sure and the billing lady said she was going to talk to the doctor first to see if htere was anything he could do about it. She said they usually never offer payment plans put under the circumstances maybe he would be willing to split the payments in 3 over the next 9 months or do something like that, and all we would have to pay now is the $1800 to the other surgical facility. I told her that while I really appreciate her being so willing to assist, I have to be frank and we can't afford to pay for it. We took the $2500 we did have set aside and used $1200 of it to repair our car this week (go figure, new battery, new timing belt, water pump, motors for windshield wiper fluid, batter attachments...of course it had to be this week-murphys law). Not that anybody really cares about the financial aspect but I make about $30,000 a year, rent in San Diego is outrageous and there are no open spaces in military housing right now, Mark is a full time student and we are putting him through school on some scholarships, and some loans. The military doctor has a contract with a local infertility clinic where our fee is about $7000 instead of $10,000-$12,000 (or more) dollars. So our income, minus our rent, some expenses that our military insurance doesn't cover, minus the $7000 fee-we just can't afford anything else. We can hardely afford to consider $7000 in October but we were going to make it happen, now this just throws a wrench into everything.

Part of me is telling myself to see the positive, maybe it jsut wasn't a good time, maybe something is going to go on in the next year or so that we couldn't do if I was pregnant or if we had a baby. Maybe we'll go on a vacation.... then the other part of me just really wants to be a mom. I know I'll be ok, I am just so distraught right now. Thanks to all for listening and thanks for the support@

Julie

 

[anonymous]

I'm so sorry to hear that Julie! But hang in there. Keep on nagging that insurance companies, and find a lawyer if you have to. I know it's a big pain, but a child is worth it.
Oh, and thanks for your response to my surfing question. Tell Mark it's not hard to learn, and surfers love to teach!!

Emily aka schmemi

 

[anonymous]

Julie,
What a bummer for you and Mark to deal with<img src="i/expressions/face-icon-small-sad.gif" border="0">
As a last resort, have you thought of adoption? It can get expensive to do it privately, I'm sure, but there are children in foster care waiting to be adopted & I'm not sure how much (if any) that would cost, but do know there is a lot of red tape to go thru as my brother & his wife are in the process of trying to adopt out of foster care.
Also, have you ever contacted Beth Sufian? She is an atty with CF and if I'm not mistaken, she has adopted a child. She may have some pointers for you on how to deal w/ the doctors with fertility and also let you know if you have any recourse since they told you something that just wasn't true, (they would cover procedure, etc).
Let me know if you need her contact info.
Elle

 

[anonymous]

Emily, Get this, his cousin who he has't talked to in a few years just emailed us (grandpa was emailing the family, we were on the list, they were on the list...) just emailed and he lives an hour north of us (we are in San Diego). He is a surfer and wants to teach mark this summer-mark is just thrilled. I think that is a very interesting question you posed and I think a lot of people would enjoy it.

I got a call from the insurance company a bit ago about this whole fiasco. We can appeal the decision, and the tricare nurse/benefits advisor suggested if we do that we reference the CF as his reason for infertility and argue that based on that circumstace it should be a covered benefit. I am going to give it a try though.

I appreciate all the support you guys, thanks!!!!!!!

Julie

 

[anonymous]

Elle, I have Beth's contact info-thanks though. I had to ask for her assistance when mark was fighting SSA she is a wonderful woman! My only fear of getting any lawyer involved is that this is military insurance, the freaking government. It is rare that anybody wins against them. I am going to appeal on my own though. I do advocate for Washington (my home state-forever) and CA (where I live now) for the states to start mandating employers to offer or provide infertility (including in-vetro) coverage. I have also contacted representatives for the fedreal and state employees to advocate (www.inciid.com is a great site to find congress people, example letters, example phone scripts). I sent letters explaining very breifly, our bout with infertility and how important coverage is. I can only hope and pray that my efforts, along with many others who advocate can make a difference.

Thanks again to everyone,


Julie

 

[anonymous]

Hey Julie,
I am in that kind of position! Well, we can get the money from friends and family but it is just sooo expensive! I think that our quote was 12,000. We have already wracked up 800 in jst consoltations and ultrasounds and semen analysis... It sucks! I think that tri-care should allow us since it is a birth defect... Dont they cover stuff like that? My hubby is in Thailand right now but when he gets back on the 20th we are going to decided whether or not to go through with it! I really want to be a mother but there are so many bumps in the road! I understand what you are going through totally!!! I think I am going to call tricare and tell them how I feel about this situation! Anyways, you are such an awesome person and i can really relate to you and your situations!!! Thanks for always sharing and helping me out when I need help...


Cariann 20 w/ cf cfrd mrsa

 

[anonymous]

Have you thought about going to another military location to have them do the procedure? Where are you stationed? I know the DC area and San Antonio areas may be able to provide the support you need.

 

[anonymous]

I am stationed in San Diego. I know there are military infertility clinics (they still work with civilians at a reduced cost though) in San Diego, Washington state and DC for sure, other than that I am out of luck. The thing that's so frustrating is it took me 5 months on a waiting list to get into the military infertility clinic just for evaluations, and another 13 months on the waiting list before we could have our IVF. If I go somewhere else (at least military wise) it is going to be the same situation. The military doctor only does IVF in February and October because he essentially "rents" the procedure space and medical personnel from the civilian practice and the rest of the time he is the only doc running the military infertility clinic.

Cariann, my dear, where are you going to have the ultrasounds and semen analysis. What I would recommend you do to save some $$$$ is do what the doctor (you are going civilian right) has recommended, but have him write a list of orders for you, like you need an ultrasound, your husband needs a semen analysis, you both need blood work...take that back to your primary care doctor at the military hospital (are you going to tripoli?) and have him order it all and do it all through the military. That way you aren't paying anything out of pocket until you absolutely have to.

I am appealing tircare's denial-no dobut about that. I am also appealing the tricare regulation, requesting that they make exceptions for situations where they know the diagnosis and reason behind the infertility. Especially if it is genetic and there are NO other options avilable to the couple. And as I stated above, www.inciid.com is a great website for advocacy. I pulled some example letters off of there and kind of modified them to my particular situation. I sent them out to my congress and senate representatives and also to those who make regulations for insurance coverage for state and government employees.

Thanks to all of you for the support,

Julie

 

[anonymous]

Julie,
I am so sorry to hear your news. I feel badly I didn't see it until now. Please don't give up hope! Keep working on it, and it will go your way. If there is anything I can do to help let me know (write letters to the gov. or anything). I would also talk to your local CF chapter social servies worker and see if they have any ideas (if you already haven't)
Take care,
Lynsey

 

[anonymous]

Julie,
That is such a freaky coincidence about Mark's cousin. Tell him he better rent a really warm wet suit! Anymore news from insurance?

Emily

 

[anonymous]

Julie - I too am sorry to hear your news...being a mother for me has been the best thing I have done with my life...so I hope it works out for you (and Mark).

As a side note, I understand you are currently in the military...I don't know if you always plan to be or what your nursing specialty is, but I have a friend who's an RN who experience fertility issues (not CF related), but went to work for a fertility clinic, because one of the benefits (at least at this clinic) is FREE IVF. Again, don't know all the particulars of your and Mark's situation, but thought I'd throw this out there!

Amy
36 w/CF (and 16 yo daughter wocf)

 

[anonymous]

Hi Julie,

I am so sorry. I can totally relate to what you are going through. My husband and I as well were determined to be parents, no matter what. Before I knew I had CF, we had attempted getting pregnant through intrauterine insemination. All 3 attempts had failed. We were at the crossroads as to whether we would proceed with IVF. We came to the conclusion that we were not willing to risk failure again. Given the costs associated with IVF, we wanted a sure thing. Given that, we turned to International Adoption.

I don't know how open you and Mark are to International Adoption: but here is some information.

International Adoption can run anywhere from $14,000 to $18,000 Cdn or approx. $12,000 U.S. to $15,000 U.S. (1.2 exchange rate) depending on the country of adoption. Unbelievably, where I live, banks do provide financing to adopt a child and I know of many families that have taken out loans to adopt a child. I do not know if banks in the U.S. will do the same. Maybe it is worth looking into.

Our daughter is the best thing that has ever happened to us (although sometimes she drives us crazy). It does not matter that she is adopted. She is our little girl.

There are so many children out there that need a home. I left China feeling helpless, but at the same time knowing that we had saved a little girl in the hopes of her having a better future.

This post is not for purposes of promoting International Adoption. After all, having a child is a very personal thing. However, I just wanted to make you aware of another option that perhaps you may not have thought of.

Dxat35.

 

[anonymous]

Hi Julie,
Well, i have not seen a regular family doc yert but i think that i am going to. We have already done the semen analysis and the ultrasound! that is why we have a biil of like 1000!!! I should have done that first!!! Oh well, i guess we pay the penelty of it all! Anyways, thanks again..


cariann 20 w/ cf cfrd mrsa

 

[anonymous]

Dxat, I am open to the adoption idea by my husband is really determined to have a child of his own. I don't know why he is so resistant to it-to each his own I guess, but at the same time I don't want to push it and make him agree to it just to satisfy me then have him end up resenting me and the child.

UPDATE!!!!!

We got some encouraging news today though, the doctor is willing to eat a large chunk of money and only charge us $2000 (instead of his $2500 fee and the facility's $12-1800 fee). And about $1200+ of that would be going to the facitility and anestheologist (i cannot spell today) so instead of him recieving his usual $2500 fee, he will be getting a couple hundred. I told him we would accept his more than generous offer. In return, the only thing he asked is that we give him a good mention. There is a local SD radio station (am600) which takes time everyday to mention (through nomination) local businesses who help military members (like reducing a fee to repair a car, assisting with surprise medical bills, donating groceries to a big family...). He asked if we would be willing to do an interview (if they wished to do one) and I said we would be more than happy to nominate him, refer friends to him (if we ever run across people in this area), have an interview and he is mentioned a lot of times in the website I am creating. I just cannot believe that he would be so generous in offering to assist us in this way, I can't even think of how I am going to thank him, a big thank you card is in the works though.
So, if they can still book the surgery center for this Monday we are going to go through with it and figure out the financial portion somehow, even if it takes 3 credit cards.

Cariann, my dear you must see the military doctor. Are you Tricare Prime? They will cover almost everything except for the freezing of sperm (if your hubby has to freeze it) or freeze embryos, an egg retrieval, sperm retrieval and any sort of implantation, (IVF, IVF with ICSI, IUI...). you may even get lucky and find that there is a military infertility clinic in HI. You never know until you ask, but you should really be doing things like ultrasounds and semen analysis (semen analysis can be done at the urologist) at the military location and pocket the money for when you will really need it. Just my thoughts but why pay for something that is free??

Thanks to all for the support, I'll keep you updated.

Julie

 

[anonymous]

Julie - keep up the fight! It looks like you are making GREAT STRIDES (just like the CF walk <img src="i/expressions/face-icon-small-smile.gif" border="0"> My husband and I fought with our insurance to cover PGD because we have a child with CF, but of course they said no...it was heart breaking to us, so I know what you are going through. We were fortunate enough that we could try the old fashion way and we did have a baby girl who is only a carrier. Although our situations are different, my advice to you is to hang in there because I believe you will have your chance to have a baby! You are a very determined person and you will win, believe that <img src="i/expressions/face-icon-small-smile.gif" border="0">

Best of luck to you!!!!

 

[anonymous]

Hi Julie,

Your update sounds promising. Hope to hear more good news by Fall/Winter 2005.

Dxat35