Friday, February 25, 2011

Cycle Review and Update on Supplements

Cycle Review:
Spoke to my wonderful napro Dr today. (Dr KB) for my cycle review. I had so much to tell him about my adventures with the RI. I was also excited to tell him about my progress. This is the first time in a year that my follicle ruptured thanks to the lupron trigger. When I told him, I was finally able to accept success  (You get so used to constant disappointment that you build up a wall to protect yourself. I was scared to admit that this worked, becuase it may not work again next month and I didn't want to get my hopes up and get crushed.) It was nice to be able to celebrate a small victory with someone who understands how hard it was to get to this point.
Then we spoke about my immune tests and how I was diagnosed with elevated killer cells. He mentioned
Low-dose naltrexone. He said that Dr. Hilgers uses it to treat women with Endo. There is another Dr. in Ireland who also has success with it. He did not know exactly what it did, but he said that it interacts with the immune system. He suggested that I go ahead with the RI and do the intralipids first to see what that does. This will also give me time to do some research to see if this would be an option for the future.
When I Googled it, it was very hard to make a decision. Some sites said it raised NK cells, some said it lowered them, and one said it would stop them at first but if you continue to take it then it would raise them. It seems that LDN is used for many auto immune conditions, so it may be hard to tell.
I checked Dr.Beers book and could not find any mention of it. I also posted on my forums to see if someone knows more than me. I am excited becuase I am now making some progress and I am trying the intralipids for the first time next month.
Update on Supplements:
Today is the one month mark of my new supplements. Last month, I was afraid of how my GI tract would handle them. I am happy to report that  nothing bad happened. I have been taking a tablespoon of fish oil every night. It is not too bad, it tastes like lemon. (I opted for one spoonful versus four pills.) The only pill I did not take was the resveratrol becuase when I did some research, it mentioned affecting your estrogen and not to take it if you are sensitive to it. When you  have endometriosis and fibroids you stay away from excess estrogen.

Monday, February 21, 2011

Sock Swap for National Infertility Awareness Week 2011

This is my first attempt at putting together a project so please be kind. The other day I was browsing a forum and came across this website.  (See her project description below)
Based on Emily's idea, I am putting together a smaller project for National Infertility Awareness Week which is April 24-30 2011. Since we all need to be able to focus on the positives, the idea is to give/receive  fun,  colorful, cheery, novelty socks.  My project will run from now to the end of April which gives you about two months. Women will sign up, purchase a new pair of fun novelty socks, and send them to another woman. I am going to gather the addresses and match everyone up. The swap will happen during national infertility week which is April 24-30 2011 
The original project from  focuses on women who are currently infertile. For my project I would like to include all women who have struggled with infertility. No matter what stage you are in, we all need to support each other. I thought this would be a fun way, to share positive thoughts, and help those of us up north get some cheer in this long winter. On the sign up form, I am asking what stage you are in so I can make good matches.
**Please click on this link to sign up. Sock Swap Entry Form.
**The deadline to sign up is April 16. This should give me enough time to match everyone up, send out the addresses, and give you enough time to mail them.

If you do not want to participate in the swap,  please visit Emily's site and consider sending her a donation of socks or stamps.

The following is quoted from her site "There are no magical socks that can cure infertility, but they can lift the spirit of those struggling with the challenge.  I started the Fertility Socks movement as I was dealing with my own fertility problems. When discussing an upcoming procedure I was going to have, my nurse said to me, "Wear fun socks.  It's a good conversation starter." She is so right.  As an infertile woman, my feet spend a lot of time up in stirrups - much more than the average woman.  They are the highest point in the room during an exam, so my feet may as well be entertaining to all those present. So I asked my friends for fun socks for all of my future procedures.  They knew I was suffering, so they liked giving me a gift that made me smile.  I liked taking a symbol of my friends support with me to the hospital... and my feet looked great. Now its your turn.  Infertile?  Let us send you a pair of socks to brighten your procedure. Want to offer support?  Donate a pair of socks, and we'll send them to an infertile woman in need of humorous footwear and a smile."
Best Wishes,

Friday, February 18, 2011

Possible victory

Wow, the past three days have been tough. I called my local RE today and asked about intralipids. The nurse was very nice and explained to me the breakdown of the cost. She said that they charge $100 to do the IV and the meds usually cost about $100. So it would be $200 for the month. There would be no extra Dr monitoring fee. (The RI wants to charge me 200 plus meds, and  would not tell me the cost of the meds.)
She said that sometimes the insurance will cover it, but I should expect to pay in full to be safe becuase they will bill insurance and then I have to pay the left over. They only want me to pay per month and not 3 up front like the RI wanted. Okay, so this felt reasonable and I felt like she was giving me proper attention. I asked her about blood tests to follow up and she said they did not do them.  The nice nurse also said to start next month since I was already post peak and I should take the meds a few days before peak. I agreed especially since I am paying a lot I want to do this right. Later today the pharmacy called me and said it was partially funded by insurance (they called the insurance and checked) so the cost of the meds is now down to 67. They are shipping the meds to the RE. I will not know if they will pay for the iv until after I get it done.
I have to see what I want to do about the blood tests. Do I really need them??? I am still waiting to hear back from my napro Dr, bc I am going to ask him if will write me a prescription for the blood tests. If not, I will have to contact the RI and see what kind of price deal I can make to just do the blood tests and not have him order the meds.My logic is she said it was 200 to order meds, liability, and the blood tests, so I should be able to knock that price down some more to only do blood work
So the possible victory....
I went in for my P+3 US to confirm that my follicle ruptured. Well it was my lucky day bc they asked me which nurse I wanted and my favorite nice nurse J was there. She does not judge me and she takes her time and explains everything. She said my lining looked great and luteal. I think my follicle ruptured which would be a huge victory. My ovary is covered in junk and I have a large pocket of fluid so it was really hard for her to say 100%. But, I did not see the  obvious follicle. Usually I go in and it has grown and will mock me. In fact she said she saw a possible corpus luteum.......Woah!!!!! I have never heard those words before. This is all due to the lupron trigger. This was my first time taking it so I cannot say that it is really working until it happens again. I will take my happy thoughts bc I really needed some today. So if this is true then it will be a huge victory bc I have only had one other possible rupture in a year. I have to remember that I still have to address my new challenge which is the killer cells. BTW: The lupron only cost me $5.00 and it has 14 uses in one that will be a great money saver.......

Thursday, February 17, 2011

I cried at work today

Today I returned a call from the office manager of the RI. I was expecting her to tell me that the intralipids were covered or not and the cost of the home nurse etc. I was excited to get started and was bracing myself for the cost of the meds. It was tough bc if what the Dr was saying about the killer cells is true, then I have no chance until I get this treatment.
I was in total shock when she said, well okay that will be $1,250. Woah, I said so it was not covered, that is a surprise. If that per month? Yes.  Then she says well that is not for the meds. That is for the Dr to monitor you. I had an immediate reflex and started to cry. What? I said, I just paid him 1,000 for two phone calls and I thought he was just going to prescribe the meds and discharge me. This is outregous. The Dr never mentioned any fees, he only mentioned insurance. Then I said he only spent 5 min with me yesterday. So she gets mad and tells me that he spent time before my phone call going over my results....I said, do you realize that you are charging me more than my monthly mortgage payment?
She asks me if I am doing IVF, I said no and  then she puts me on hold. She comes back and says well since you have a financial hardship we can do a 50% discount and it will be for 3 months and not one. Even though 200 a month is now in my price range, I was still really mad that I was ambushed by more surprise sky high fees. So I keep pressing her, and say that I thought I was getting  a prescription. She says well if we give you meds we are liable and have to monitor you. The Dr needs to charge you  to write the prescription, order blood tests, and look at the results. Then I asked her how much the meds cost and she says she doesn't know. So she never even called the insurace company. Then I said wow, so this is going to cost 200 plus meds, and she chimes in "well if you cannot afford this then we cannot treat you" So I told her that I had to talk to my dh and then find out the price of the meds first......
Then I called my dh crying my eyes out. He is super mad at the Dr and calls him the money pit. Since this Dr is a RI he is rare and costly, but this is out of control.
Then I called my wonderful napro Dr and left him a message. I thought I was ok and then I think I started to cry, but I am not sure if he will be able to tell. I don't know what he will do. But I trust him 100% and wanted to get his opinion about the whole thing.
I searched the internet, which is what I do best and found out that my local RE is now offering intralipids. If you asked me yesterday, I would have not been thrilled to go there since he is not RI, but now if I can do it and only pay a copay I might have to. I am going to call their office tomorrow and see what the deal is.
I am not sure what to do about the RI. I don't want to burn that bridge but I am so mad at the way I am getting treated. I also want to make sure that I am getting the correct dose if I go to the RE.
The RI's website says "A follow up consultation with Dr. JB will then take place, at that time he will outline your plan of management. Treatments can be carried out at our facility in New York where we perform full fertility services or care can be coordinated with your fertility specialist anywhere in the world.
So I would think that telling me the dose would be part of the plan that I already paid for. She never mentioned coming into the office so I don't know if that is an option.

Errrrrr I know that I have to endure ups and downs, but I was up yesterday and it only lasted a brief moment. I have my US tomorrow to check that follie. FX that it ruptured, bc then I can have some peace about paying the RI so much, bc the lupron trigger was his idea.

Wednesday, February 16, 2011

Lupron Trigger and Immune Test Results

Recap: I spoke to a reproductive immunologist last month and he ordered immune tests. He also suggested that I try lupron as a trigger. Most people use lupron to suppress ovulation. If you take it once at a higher dose it will trigger LH.
Lupron Trigger:
On Monday my follie was 17mm, so I took the trigger on Tues. Then today I went in to get my LH and Progesterone checked. I did an OPK and it was the darkest blue ever. Well it turns out that my LH was 41 and my progesterone was 3.9. The Dr said those numbers were great and it meant that my body had a great reaction to it. =) He said that it meant I ovulated, but we will see on Friday.
Immune Test results:
I have been waiting for 3 weeks for this day to come. The Dr. said my immune tests were all normal except my natural killer cells were elevated. They are elevated due to my endometriosis. He said this could cause ovulation issues such as my LUFS and embryo implantation issues. It has taken me almost 4 years to discover this, but I am still glad that I went through napro. If given the chance, I would do napro again because it helped me get to this point.   I am overwhelmed at the moment. He is a very smart, busy man and treats women from all over the world, but he does not really have a great bedside manner. He drops this bomb on me and then tells me I have to do Intralipid therapy. When I asked him what it is, he told me to check out his website.....Really????? I paid a lot of money to speak to him and get results and that is what he told me. He only spoke to me for a few minutes. He could have just emailed me what he said and saved me money. Getting my actual test result numbers was like pulling teeth. He kept saying normal, and I wanted to know how normal....I am going to email the nurse and request a copy of my numbers so I can double check them and have them to add to my large file.
Then I started to ask him about the plan for the next few months, such as do I take the same trigger dose etc. I figured that since  I had him on the phone and I already paid him a ton of money, I wanted to make some plans.That is when he made it sound like I was already pregnant. He said when you are will need another dose. I said something again about my plan for the trigger next month, and he said well if you are not pregnant then we have to talk.....I was not sure if he was just really cocky, wanted to squeeze another phone consult fee out of me, or if he was just really confident that his treatment would work....This is his specialty so I guess I have to trust him for now.
In case you have never heard of Intralipid therapy, it  is basically a combination of oils that are given through IV. This is supposed to calm down the immune reaction. I am a little freaked out at the thought of filling my veins with oil. The crazy thing is that I try to avoid soy bc of the estrogen and now he is suggesting that I inject it. He said that a nurse will come to my house to do it. I have to check with insurance and see how much this is going to cost.
Has anyone done this? The Dr was so confident that this was my main issue and that this would cure me. I am kinda freaked out bc  I kind of gave up hope so now I am afraid to get my hopes back up. I am also not 100% sold that this is my only issue. I am still concerned about my Lufs. He said based on my blood test today that I ovulated. I have an us scheduled for Friday to see if that follie is still there.

Sunday, February 13, 2011

update on the Dr. Drama

I love the internet. How did we ever get along before it? I remember needing to go into the library to look books up in the card catalog. You never had access to the number of experts that we do now. The experts are the specialists but I was thinking about  the other women going through the same struggle. If I were going through this back then, I would have given up years ago.
I posted my concerns about the fees onto a few forums and  this blog. I got back some great responses. It seems that reproductive immunologists are rare and they charge a lot. So my first concern about this fee being too much is gone bc it seems average. Then I spoke to another patient of Dr. JB and she said that she had the same exact fees, but then she said that after that there are not really too many other charges. This makes sense bc he has lots of patients that consult with him and then follow up with a local dr. He has to make sure that he gets paid up front. She said he will answer any question for free over email and writes prescriptions for free too. So my fear that he will continue to charge me into the poor house is mostly gone. She did say great things about him and mentioned that she had seen another RI before JB and that one charged her more and never got to the issue. So hopefully I found a good one that is worth the money.
I have my follow up apt on Wed and I am super excited. He ran a bunch of new tests, so maybe we will get a new piece of the puzzle.

Friday, February 11, 2011

Comment from a reader and some Dr Drama

Comment from a reader:
A reader named S emailed me  it was so amazing. She is about my age and has been trying for a little bit longer than me. She told me about her struggles and asked me some questions. A quote from her letter "How do you find you are doing emotionally with NaPro? I feel a sense of relief now that I know more about my fertility issues. Still, infertility can be a lonely feeling, so I am glad I ran into your blog. Well, I just wanted to say hi and let you know that your blog made a difference in my life today. " I am so glad that she said hi. It made me so happy to get that note and find out that I helped her out. This is a lonely silent struggle. This blog helps me to connect with others going through the same thing.  I have my good days and my bad days. It is a major roller coaster for me. I try to remain positive on here. Although I will vent on here when I really need to. I find that when I force myself to say positive things, I feel better and more hopeful.  I am waiting for my turn, but life must go on. I have to find joy in the things I do have. Her note was one of them and it brought some light into the darkness. Thanks!

Doctor Drama:
I had my first consult with a reproductive immunologist last month. He charged me an outrageous fee for a 30 min new patient phone consult. I had to do it bc I really have no other choice. There are only a few around. My immune testing came back so I called the office to make a follow up apt. I was shocked when they told me it would cost an additional $350 to talk to the Dr and get my results. I am sure that he is not going to talk to me for very long. His initial consult was only 30 min Is it normal to charge a follow up fee? I thought it was part of the same new patient consult.
My dh wants to email the Dr and express concern for the high bill and the surprise extra fee. He is going to ask that the Dr spell out his future costs. I would have thought that if he was really that expensive he would have gone over that before I had my first consult.  I made my apt is for wed bc I need to get these results. I already waited two weeks. Hopefully my DH can talk him down in price. It is amazing what he can do. He had a large car bill and he talked the guy down a lot. DH said that most people will just pay what they are told and sometimes when you talk rationally they will want to keep you and strike a deal. So FX that he can do something without offending the Dr bc I do not want to have to find another Dr. I hope I can continue to afford him.

I guess my awesome napro Dr. KB has spoiled me. He spends way more time with me and charges me less. 

Sunday, February 6, 2011

Ovary in distress sending out an SOS

Yesterday I discovered that my FSH level was ridiculously high. In the 30s is considered to be an indicator of pre-menopause. I took that news very hard. Felt very hopeless and depressed. Cried a lot and thought about giving up.
Then I started to search the internet and get some information. It is tough bc most references to high FSH are from women doing IVF. There are many clinics who will not allow women to do IVF if their number is too high bc they do not want to tarnish their success rates.
I also read that endometriomas could cause a high number. It seems that the ovary talks to the brain. If the ovary says it is happy and full of eggs, the brain sends a little FSH. If the ovary sends out a distress signal then the brain tries to help out by sending lots of FSH. My right ovary is not happy right now. There are some things on there (endometriomas or hemmorhagic cysts) and I also have a large 20mm bubble of fluid. These things have growing since Sept. So it is totally logical that my ovay is sending out a SOS signal from the gunk on it and that is why my number jumped from 7 to 37 since Sept.
I have been thinking about what to do. Since lufs is my main problem. I  would like to  ignore the number and focus on using my good ovary and see how the Lupron and G-csf affect my LUFS. Statistically the right ovary goes more often than the left so this may be tricky. I may have to go back on stims to work them both.  If nothing makes me rupture then I am done for good. Then if I do rupture but do not have success then I would consider  having another surgery and get my ovary cleaned up. I have already had 5 and I really do not want to have another. I honestly do not know if my DH could take another one with the expense, travel, time off, emotions etc.

Friday, February 4, 2011

Freaking Out over FSH--updated

I am writing this to vent my freak out. I went in today CD3 for baseline blood work. My FSH was 37.3!!!!
That is the level of a women in menopause......I almost fell on the floor. I emailed the Dr and he wrote me right back and told me to get retested. Hopefully I can get in tomorrow. They are open on Sat but only stay open until the last apt and they may not take me.....My last FSH was in Sept on day 5 and that was 7. Last year it was 3.8. So I am praying that they messed up.......
I do not know if I can handle another issue... I have plenty already........

Update: I went back in today to get it retested. Well it came back a little lower at 32.9 but still in the 30s. Ugh. So that test yesterday was accurate. I have enough problems and don't need a new one. I am trying not to let it bother me too much. I am not doing IVF or any stims so this should not be a real problem. I am going natural and only need one follie.  I am going to ask the Dr to get it checked next month to see if this is going to be my range from now on or if it was just a bad month. I have some gunky stuff on my ovaries. I am wondering if that is stressing them out.  I still have some more tests results to come in.

Tuesday, February 1, 2011

Opportunity to Support Napro

 I often visit the Resolve (national if association) forum to try to suggest Napro to other women. I call it search and rescue. There are many women on there who post about  IVF being their only option. Some of them have done IVF many times and now have nowhere to turn.I emailed the site and asked them to put in a section on IVF alternatives and I was ignored.

Today I saw this request for a survey. I posted the request below.
Can you please take the survey and give your opinions about Napro, IVF alternatives etc. They want to identify the top myths....I say that one of them is that Catholics have no options and that if you have unexplained if that you have to do IVF or else. Please help me to support getting this message out. Maybe if enough of us take this survey they will finally mention Napro Technology on their site. This could be a small first step...
If you don't want to bother with the survey, you also contact them directly and ask them to include information about Napro technology or IVF alternatives on their site.

 I just found out that they have a facebook page with over 4,000 people on it.....Wow. I was going to post something on there but I chickened out. If you post something there, let me know...If I work up the courage I will let you know.  Thank you!
National Infertility Awareness Week® is April 24-30, 2011. RESOLVE needs your help in identifying the top "myths" associated with all family building options. We'll take your feedback and ask experts to share their knowledge breaking down the myths. Our goal is to use this information to increase public education about the disease of infertility and recognize the many ways families are built.

Please give us your feedback here.

If that link does not work, google "resolve infertility survey"