Friday, October 26, 2012

Complaining About a Nurse

A pet-peeve of mine: bad doctors or bad doctor staff. It truly drives me insane. When I was younger I would sit by and do nothing, but as I have gotten order I realize the EXTREME importance of being your own advocate. If you don't, then all sorts of problems can arise.

Yesterday I ran into an issue with a nurse at my new OB/GYN's office, that can best be explained by just including the letter I sent to what I hope is my doctor's email address (and compliant boards). Names have been removed to protect identities  (Let's be honest - mainly mine.)  Chime in on your thoughts.

--------------------------------------------------------------------------------------------------

Dear Dr. W,
You may remember me. I am a new patient that recently was locked in a bathroom on my first visit due to a mechanical problem with the door handle. I received your letter recently and I was extremely impressed that you took the time to hand write and send me apologies. In this day in age, that is not only rare, but extremely impressive. Thank you for taking the time to do so; this speaks volumes about you. The door was clearly not your offices fault and just one of those things that sometimes happens.

Unfortunately, I am writing to you today to discuss another issue. Namely your nurse M. W. and her extreme rudeness, as well as cruel words to me on the phone yesterday. Our phone conversation ended with me requesting that either you or someone else, anyone else, from your office call me to discuss my case. Not only was I in tears for a long time after our call, but I am concerned that she will either delay or not have someone else contact me from the office. I will give the details of the situation below.

On Friday I went to the ultrasound that you and I has spoken about previously in your office. The person that did my ultrasound was professional, pleasant, and caring. I'm not sure of her name, but she is an outstanding individual and an asset to XYZ. After my ultrasound, I asked her if there was a cyst on my right ovary. I specified the right ovary because I am familiar with pain that has shown to be related to it and I was having it. The ultrasound technician stated I did not have a cyst, but I did have some free-fluid. When I asked some more questions, she told me that the images would be sent to someone else and a report would be passed to my doctor, who would discuss the findings with me. Perfectly reasonable and professional, as I shouldn't expect her to make a diagnoses.

This week my cramping on my right side became slightly more intense, but as I have also developed the flu, I decided to patiently wait for the call from your office. By Thursday it had not come, so I put a call in myself. My call was returned a few hours later by whom I have since been told was M. W.. What happened over that call not only put me in shock, but others as well.

Ms. W told me that my ultrasound was perfectly normal and showed no problems. I asked about the free-fluid and stated I was concerned, because many years ago I had free fluid that eventually landed me in a 5 day hospital stay with a PID infection. During the period, it took me almost 2 months of dealing with pain to recover. Ms. W's first response was to get extremely curt with me and say the ultrasound technician had NO BUSINESS telling me that the free fluid was an infection and started going on a rant. I interrupted and explained that the technician had NOT said that and had only stated that there was free fluid, but the rest was from my own personal experience  She continued to rant and I again iterated that the technician in NO WAY, had said anything other than free fluid.

I then went to explain to Ms. W., that my husband and I have been going through IVF and we will be starting our last cycle soon. I explained that due to my age, this would be our last cycle, so it was EXTREMELY IMPORTANT, that anything, such as an infection, be taken care of now rather than have it possibly cause a problem with my cycle, or delay it, which is also a problem due to my age. I further explained that the pain in my pelvic region was continuing. Ms W. was combative at every step. While that is bad enough in itself, Ms. W. took it upon herself when given NEW facts regarding my case that should have been considered by my doctor, to diagnose me herself. And her diagnoses was that there was nothing OB/GYN related wrong with me. She stated that the free-fluid came from a cyst bursting. I'm not sure how one could tell if it is from a cyst bursting or possible other infection (without testing the fluid), but she simply didn't allow for such questions from me. She only wanted me off the phone and off her charts.

She told me to call my primary care physician, to which I explain I have just gotten all new doctors due to moving, and the earliest PCP appointment I could get with XYZ was over a month away (already scheduled). She then told me to go see my IVF clinic. This is not practical for me as 1.) My main clinic thus far has been in India, though I am returning to my American clinic 2.) Insurance will not cover these sort of things at an IVF clinic. She then told me to go to the ER if I was in pain. At this point I asked why I could not speak to the doctor or at least have the new information relayed to him. She said that NO doctor calls back his patients. While this may be the policy at XYZ, I can assure you that I've never had an issue with this with any other doctor. I gave her an example of an OB/GYN I had for 20+ years that always called me back when requested, but she didn't really seem to care.

I told Ms. W. that I wasn't trying to take it out on her, but that I didn't understand why she was trying to hem-haw and not let me get the patient care from what I felt was a OB/GYN issue. She dismissively told me that pelvic pain could be from many areas and that she felt it wasn't an OB/GYN issue. I may be wrong, but I really think that it is out of place for a nurse to be making these decisions without conferring with the doctor. Especially if I have introduced new information that the doctor was unaware of.

The pinnacle came on her final berate of me that I can only describe as the most callous and unprofessional interaction I have ever had with a doctor's nurse. She sarcastically said to me "Look. I'm sorry you can't get pregnant......" and I have very little recollection of what she said after that - I was in tears and shock. She doesn't even know my case to be saying if we can get pregnant or not and it is extremely cruel to interject this statement when it has no bearing on the issue at hand. Especially to someone currently going through IVF treatments. I'm not sure what else was said except that I finally interrupted her rant to say I needed to speak with the doctor or someone else from the office. That I could no longer speak to her. Her response was "I have no idea when the doctor can get back to you" to which I responded "Anyone. Have anyone call me back besides you. I need to speak with someone about my case, and I can not speak to you." After about an hour, I was able to collect myself and call back XYZ to find out the name of the nurse whom I had spoken with. The receptionist looked up my notes and said it was M. W..

At this point I have no idea if she even passed on my information to anyone else. I am horrified by her treatment of me, especially given that I am going through infertility. I would expect an OB/GYN's office to be the last place this sort of thing would occur. An OB/GYN staff should be the opposite of this and in my 25 years experience with OB/GYN offices, it always has been.

To recap:
1.) Ms W. took it upon herself to diagnose me without speaking to a doctor about new developments in my case
2.) She was combative and unnecessarily cruel
3.) I have very little confidence that my information was ever relayed to anyone else, much less my doctor. Thus I don't know what the next step for me to take with my care is and I sit in limbo wondering.

I have written very few letters of complaint in my life, but I felt that this was important enough to write one. These are never one time occurrences and nurses who speak to patients like this should not be in such a delicate field as OB/GYN. Please let me know if and when I can expect a call from your office to discuss my case and concerns. Thank you very much.

--------------------------------------------------------------------------------

UPDATE: The office is part of a very large hospital and medical teaching school. My email has already created a stir and I received the nicest phone call from my doctor's office and an email from someone I don't know, but is with the organization. There will be an investigation into the matter and I'm hoping there might be phone records. While I certainly don't like to get people in trouble, I feel much better knowing my complaint is being dealt with quickly and that it's important. Besides my complaint  the person that called today is making it his personal duty to get answers to my medical questions ASAP (doctor is out today). He was really really nice and soooooooo much easier to have a normal conversation with.

UPDATE 2: Doctor called and not only was really nice, but alleviated my fears after lengthy discussion with me and pulling up all my records. He also made a funny comment about the nurse wasn't loved enough as a child as has no business being a nurse. Apparently this was not an isolated incident. 

Thursday, October 25, 2012

Backscatter and IVF

Every since we've started IVF, I avoid the backscatter machines like the plaque. Even a tiny bit of radiation is too much risk in my head. My husband does as well, but for totally different reasons. Turns out I'm not the only one: The New York Times wrote X-Ray Scans at Airports Leave Lingering Worries back in August and it seems to back up my position. Nothing really definitive, but enough to make me continue my avoidance of the backscatter machines. If you are trying IVF (or pregnant) and flying, it may be worth the read.

Interestingly enough, I almost ran into a problem with this on our return flight from India in the Amsterdam airport. They have long had scan machines* in place and from my experience, it is EXTREMELY uncommon for people to opt-out. Caused a bit of commotion last time when I was trying to opt-out and the agents were trying to convince me it was safe. I kept repeating "my doctor specifically told me NOT to go through those." I hadn't really talked to any doctor about it, but it was all I could think of at the moment. The agents then tried to explain that the metal detectors were a higher risk than the backscatter machines (I have found out since then that this is not true in cases of pregnancy; I can't vouch for other medical issues.)

The female of the duo agents finally stated "they are even safe if you are pregnant" to which I gave a notable pause. "Even IF you are pregnant? Because my doctor said NOT TO." Apparently my long pause, semi-panic attitude, and adamant stance made HER pause. "Are you pregnant?" I had to think quick. The line from GhostBusters hopped in my brain "If someone asks if you are a God - YOU SAY YES!" And so I lied. "Yes, I'm 40 years old, high risk for miscarriage, and my doctor told me not to go through those."

At this, the female agent waved off the male agent, pulled me to the side, gave me a pat-down, and said congratulations. Did I feel bad for lying? Yes. No. Maybe. That congratulations was a bit stingy, but ok. I'll take it. Way better than me worrying about the alternative.

Woman are born with a finite set of eggs. We make no  more. We have to protect what we have. There are no long term studies on the effects of these machines and in many cases they aren't calibrated/tested regularly. If something went awry, you would probably never hear about it. When you get an x-ray, even if it is faaaaarrrrrrrrr from your ovaries (like an ankle x-ray I had a few years ago), they place a little protective pad over your abdomen to protect your ovaries. As far as I'm concerned, that pad is there for a reason, and I'm not lowering my chances one single bit.

* The Amsterdam airport is said to use a different technology than the normal backscatter machines we have in the US. They call it "Security Scan" and it uses millimetre waves that bounce
off the skin and do not enter the body. To my knowledge, long term studies have not been performed on them. 

Wednesday, October 24, 2012

The Plague and Me (or is it "in Me"?)

Grouchy, achey, and sick - that's me. (If I've offended anyone about anything, I apologize. My mind has been fraught with sickness, worry, and anger.)

I've had the flu for 3 days now AND my OB/GYN appointment last Friday revealed free-flowing fluid on my ultrasound. Not good. My doctor is suppose to call me with the results (radiology/ultrasounds are done in a different place then his office), but so far he has not. 

Having had an indeterminate* PID type infection many years ago, I know what a problem having free-flowing fluid can be. Last time it included antibiotics for about 6-8 weeks,  trouble walking for weeks, tons of abdominal pain, and admittance to the hospital for almost a week. Not exactly prime for IVF treatment. I'm willing to bet that's what caused one of my fallopian tubes to be blocked. 

If I don't hear from my OB/GYN by tomorrow morning, I'm going to have to call and explain that I need to get on antibiotics STAT. I should have gotten an extra dose of antibiotics after my last IVF treatment. The first cycle I asked for it because of my past issues, but I forgot this last time. Just went with the normal 1 treatment after IVF. Did I mention I don't react well to some antibiotics? Particularly the ones that are usually Rx'd for this sort of thing. Sigh.

And this stupid flu. I have so much to do before I start work on Monday and I'm too exhausted to do any of it. Was suppose to get a cavity filled tomorrow (that I've put off for MONTHS because of IVF) and now that's not going to happen. I certainly won't be able to take care of it when I first start work. Double sigh. 

Found out today that if I had gone to the doctor within 48 hours of flu symptons then I could have gotten an anti-viral that reduced the symptoms and reduce the length of time I was sick. Thought there was nothing you could do for the flu. Now it's been more than 48 hours. Should have gotten the stupid flu shot, but was worried about it with IVF. 

At least I have my wonderful husband. Not only makes the best homemade soup ever, but laughs at my grumpy faces. 

*the doctors never found the cause of the infection though I was later told it probably resulted from a polyp removal I had a month earlier. STDs, the most common culprit, was ruled out. When I asked why my doctor gave a diagnosis of PID, I was told "because that is what we label any infection of the pelvic area regardless if we know the cause or not".

Happy Dussehra!!!



Dussehra is the holiday that celebrates the triumph of good/truth over evil. The defeat of the demon king Ravana by Lord Rama.  After 9-days of fasting, rituals and celebrations to honour Goddess Durga, the 10th day marks Dussehra and also symbolises the triumph of Goddess Durga over demon Mahishasura. Dusshera celebrations will be marked by burning the effigies of Ravana, Meghnada and Kumbhakarna at many places in India.

Celebrations and happiness to my Hindu and Indian friends/family both near and far. 

http://www.bcmtouring.com/forum/photography-f17/dussehra-photographs-t15209/
Click for more pics!

Tuesday, October 23, 2012

A Prayer Answered in the Manner it Was Received

http://nierica.com/prayer/

(This post is based on thoughts running through my head a few weeks ago.) 

Confession time: last cycle I prayed, I visited a temple, and even fed some cows hoping for blessings. (Ok, maybe that last one was just an excuse so I could feed the cows; I can't help myself.) Heck, I even accepted blessings from a relative that involved us later getting stopped at airport security for trying to carry a coconut on an airplane. Have no idea if it violated the 3 oz liquid rule, if it was a fruit issue, or if they just didn't like the shape of it in my backpack under the x-ray (visions of Spy-vs-Spy dance in my head with little black bombs). I tried to ask my husband, but he wouldn't stop laughing in the security line long enough for me to get an answer (it was in my backpack of course).

http://multiplayerblog.mtv.com/2012/07/17/spy-vs-spy-single-player-review-ios/

All of this is a little profound for me since technically I am an agnostic/atheist. I knew going in that it was wrong to "ask for something" without being a believer, but the pragmatic part of me said "well if there is no such thing as God, then it hurts nothing to ask." Yes, I'm aware of the weird logic that this entails on my part.  [As a side note, when I was religious in my younger years I almost never prayed asking for things.]

So I prayed.

Please God, if you just let us have this one pregnancy, I will believe. 

And in typical fashion God answered: we had a chemical pregnancy.

Monday, October 22, 2012

A job, a surrogate, and possibly the flu

http://liannetaimenlore.blogspot.com/2012/08/edbp-movie-review-lion-witch-and.html


“All shall be done, but it may be harder than you think.” 
― C.S. LewisThe Lion, the Witch, and the Wardrobe

Two weeks ago my husband and I decided that I needed to go back to work. Our funds are greatly depleted and the time had come. This made me more than a little nervous on several counts.

  1. I'm rusty in my job field. Not only because I took off 7 months for IVF treatments, but also because my last position had me doing a different area in my expertise. While that's all great and fine, the problem becomes two-fold in that I could either continue in that subcategory (with only 2 years experience) or go back to my old subcategory with well over a decade experience. Going back to the old actually means I have 2 years worth of catch-up to do as you have to constantly stay updated. 
  2. Interviewing terrifies me. I don't know why, very few positions have I ever interviewed for did I not get a job offer, but they still terrify me. Like make me want to vomit type of terrify. Like my voice shakes and my mind can go blank type of terrify. Now that I think about it, maybe I have such a good success rate at job offers because I usually go with the one of the first couple. That gets me out of other interviews. Add on #1, and I simply did not feel ready to interview. 
  3. Wasn't sure how this would fall inline with our IVF treatments. What if our surrogate here doesn't work out? Then we are back to looking at India. Can't exactly take time off to go there for 3 weeks when I'm brand new at a company. We don't save any money by doing IVF in India, only surrogacy, but I don't have confidence that my embryos will make it to freeze. Need to look at things to increase our chances, not decrease.
As my grandfather used to famously say "Oh well, what the hell" and thus I dived into job search mode. Went on a interview last week, felt like puking (before and after!), thought I bombed part of it, and lo-and-behold, they loved me. Took an online technical test and scored high. Job was offered immediately (like within 5 minutes of me completing the test!)  So here I am getting ready to start my contract-to-perm position next Monday. Have a shit load of studying to do before then. 

In other news, we met with our friends (husband and wife) that are considering surrogacy for us. We have to meet with our clinic here in Atlanta to find out some more answers, but I felt really good talking with them. Made me realize that they had thought it through (at least with the information they had) and wanted to think it through some more after we laid all the heavy duty stuff on them. That's actually a really good sign to me. 

The next day my friend emailed me and said she went through the forms and wanted me to check with the doctor about a medical issue she had years ago. We have an appointment with my clinic on the 30th, so I will have my list of compiled questions then. Meanwhile, I also have a phone consultation this week with another clinic via Skype. 

The only big concern my friends really had was insurance. They've had problems with theirs in the past. If we have to buy insurance, pay for a ton of new medical tests for all 4 of us, plus attorney fees, then that may be too cost prohibitive. Won't really know until we speak with some clinics. Don't even know if they will still take me. 

And if this all seems a bit lacking in the segue arena - it's because I fairly certain I have the flu. Sigh. 

Wednesday, October 17, 2012

Another option

http://www.robinurton.com/blog/2008/05/belly-cast-painting/

The other day I received a shocking offer. One that could solve a lot of problems for us. Maybe. If we are lucky - and that's what it usually boils down to in the end. In a Tim Burton kinda twisted way.

Someone close to us has offered to be a surrogate here in the States. 

Interestingly enough, my husband and I had 2 different reactions. He was ecstatic and slowly realized that I... well... wasn't. Don't get me wrong - it will be FABULOUS if it works out, but just a mere offer doesn't turn into a done deal and I guess that's what has me a little nervous.

This person is very close and dear to us. I love her completely and I nearly cried when I read her email. BUT, I'm afraid to get my hopes up.

Today my Atlanta Clinic called and they had my AMH results back: .86. Not good. Not good at all. Not horrible (like in India), but definitely not good. It has dropped over half from January. So I'm fairly certain this will be our last try with my eggs. And that's IF ACRM will even take me now. I'm hoping that the fact I had 3 good embryos last month will help convince them.

The idea of using someone close to us make me nervous for so many reasons. What if we plan everything, go through IVF, and then she decides she can't do it? I would understand why, but that would kill me. What if she isn't approved medically? She smokes, how do I know she will be able to quit? That's a HUGE thing. (I'm guessing she quit 5 years ago when she was pregnant, but I didn't ask.) And how much time to we have to wait for all of these things to align?

Also, how will she feel giving the baby to us and seeing the baby all the time? One commenter on my carrier's perspective story made me feel better about that, but is that the norm? So many questions. We are meeting with her and her husband this weekend to discuss everything.

We also had a super close friend (2 actually) offer to be an egg donor for us. (Yes - we are surrounded by truly phenomenal people.) Not sure if those offers are genuine either, and more importantly, thought out. Am I being too pessimistic? Am I letting MY personality traits (agree to things before really thinking about them) bleed into how I think others would react? I don't know. I just know I can't take much more of the roller coaster. Sadly, it's a roller coaster no matter which way we choose. Isn't it?

Saturday, October 13, 2012

You have questions...We have answers

Actually I need your answers, so if any of this sounds familiar please post your experience/knowledge in the comment section.

On Tuesday night, I attended a seminar at my old clinic ACRM, here in Atlanta. I described some of it here and also pinky-swear promised to post the questions I posed to the new doctor during the Q&A session. (Ok, I didn't really pinky-swear, but I wrote I would, which is almost like the same thing.)

So here are the questions I asked.

1.) Can endometriosis affect the outcome of an IVF cycle if the woman is using a surrogate?
A.) Yes it is possible. [Sadly I have forgotten the reason behind it. I believe she did mention that there could be an effect on the eggs in a follicle and thus less eggs retrieved, but for the life of me I can't remember if she said certain things or if I am confusing it with stuff I have read.]

2.) Besides cost, what are some of the downsides of using ICSI?
A.) There have been studies done of the offspring conceived by ICSI and it was noted that the male children had a higher rate of sperm problems. Whether this is a cause of the ICSI or due to genetics (ie, the father having sperm issues thus ICSI was used) is unknown. 

[This one I already knew the answer to, but I wanted to make sure there wasn't anything else I didn't know about. Primarily because our clinic in India uses ICSI as a default with no extra charge (unlike here in the States).]


3.) How long after a laparoscopy, do you need to wait to start an IVF cycle?
A.) Generally the recovery time is short and we like to do the next cycle as soon as possible. Especially if the woman is older.
[I know they can't do it the same month as IVF, so I'm guessing that means you just have to wait until the next month.]

I'm getting conflicting statements about #1 and I'm a little concerned about it. Everything I read regarding endometriosis and IVF revolves around the woman carrying the baby, there is very little info for women using a surrogate.

My new OB/GYN did not seem to think that endometriosis would be a problem for me (with regards to lowering my IVF success rates) since we weren't using my uterus. In fact he thought there was a low likelihood that I had it since some of my symptoms were relieved with my cryoablation. He advised for me to find out if the cyst I had aspirated during my first IVF cycle was a chocolate cyst. He did mention at the end of our lengthy consultation that he did not specialize in reproductive endocrinology, so I'm guessing that was his out if he was wrong. The only surrogate cases he probably has is if someone walked into his office who IS a surrogate and already pregnant. Also this WAS before they locked me in the bathroom.

Conversely, Dr. GS on SIRM's forum indicated endometriosis could cause a problem in my case, but it was hard to tell if he understood that I would not be CARRYING the child. Even though I definitely mentioned it. (I am awaiting on a response for that clarification.) He mostly pointed me to articles that either talked about the problems in the woman's lining (and toxins activated in it) or in one case a long article he wrote with one tiny sentence that suggested a gestational surrogate would be a better option. That seemed to contradict his reply to me. Anyhow, I've awaiting clarification.  [UPDATE: Dr. GS did reply and state he missed the part about gestational surrogacy. He said that in the case of immunologic implantation dysfunction, it wouldn't apply to me, but an endometriotic cyst would affect egg quality.]

The REASON I'm even asking is because I don't know if I should be tested for it. We have decided to cycle again, but this may be my last one and I want to optimize my chances. If endometriosis can affect my eggs pre-aspiration, then it seems like a good idea to be tested and get any problems fixed. On the FLIP side, scheduling and doing a laparoscopy  plus recovery time could add a couple of months to the process - thus lowering our chances. PLUS some doctors advise against laparoscopic surgery for poor responders as it can further lower your ovarian reserve and raise FSH levels.

What to do, what to do. Time to go have a real one-on-one with our ACRM doctors again.

As I said at the beginning, feel free to chime in. 

Friday, October 12, 2012

Tuesday Catch up

If you are a regular reader of my blog, you know that Tuesday was a bad day for us. It was also a very busy day for me.

After getting our bad news of the failed chemical pregnancy, I had to get up and go to my dentist appt. My dental hygienist is also going through IVF and just had a failed cycle (though she has had success in the past.)  We both gave brief updates of our failures and the all-knowing, strong grieving/supporting smile passed between us. It's weird that after only 2 cycles I feel like some sort of veteran. 

After that appt, I call my vet. She was a few miles up the road from my dentist (but is far from my house) and I had discovered the wonders of tapeworm segments in my friend's puppy that we are babysitting. Fortunately my vet is also my friends vet, so she was able to RX a dewormer without me having to bring the puppy in to see her. As I was leaving, I noticed a Kroger next door and headed over to grab some food/coffee. 

Tuesday Morning was also next door and it occurred to me that I should see if there was something there to pick up for my friend who had a baby that morning. Had told her that I would come the next day to visit her and the baby. I wandered in the store, but somehow couldn't bring myself to buy any baby items. 

Next on the list, was a visit to the DOL. I have entered into my 1st tier EUC unemployment and there are new validation rules I have to follow. Unfortunately there was also a gap when I was informed of these new rules and thus a few weeks had passed without the new information being entered. Not only did I have to turn in a previous weeks validation, but I had to make sure that the other previous weeks validations weren't required. I will spare you that conversation. As with typical government offices, people are trying to process you as fast as possible and rarely listen to what you are actually saying. When the gentleman realized I wasn't going to budge, he slowed down enough to get the right information for me. 

After finally getting through that eye-poker of an errand, I drove across town to pick-up my BFF's dresses she had on consignment at a wedding/formal dress boutique. They are expensive gowns and my one job if she went into labor was to make sure they were picked up. The store is awesome and we had visited when I was wedding dress shopping a few years earlier. I browsed while they found her dresses. Even wandered over to the wedding dress side and was promptly reminded that I must wear gloves to handle the dresses. They are all designer and some of them are quite exquisite. I was happy to see that I still did not see a dress that I liked more than the one I chose. 

Another Tuesday Morning store was next door and I told myself that I needed to try again. In the store I found the most beautiful fake fur bear baby hat. It had bear ears and everything. I bought it not even knowing if I would give it to her or keep it. The only other things I have bought for our [possible] baby is the book The Very Hungry Caterpillar by Eric Carle (English AND Hindi edition). Now that I think about it, I bought that book when I was shopping for her baby shower. 

After that, the time was about 4:30pm and I know I need to get home to let the dogs out. They needed some reprieve from their crates - especially the puppy. I rushed home and let them romp about for about an hour. Meanwhile, I got ready to go to the seminar at our local infertility clinic that I had signed up for the week before. "Free AMH test" the newsletter announced. I really wasn't in the mood to be around a bunch of hopeful infertile couples, but so be it. Yes, I know how awful that sounds. I don't care - it's how I really felt and I just wanted the to take the test. When I left for the clinic I texted my husband where I was going and why. 

The seminar was pretty good. I already knew most of the things they went over, but it was still cool to see the science parts. Most of it was a slide show that we watched in the dark. Non-interacting - yay. There was a super-peppy "success story" lady that spoke and for a moment I secretly imagined punching her. The moment passed. This was followed by a Q&A session with the clinic's newest doctor. (I'll post the questions I asked in a separate blog post, because I'd really like to get your opinions on the answers.) 

The Q&A was followed by the blood test. My recent trips to India gave me some secret tricks to getting ahead in line and getting out of that office as soon as possible. The lady that took my blood was cheery and asked how my day was going. It was going crappy and I kinda told her as much. Pretty sure she wasn't ready for that and she gave me some pre-canned pep talk answer that didn't even apply to me. I just nodded. I didn't really want people to feel sorry for me, but I was DAMNED if I was going to sport a fake smile and act like my day was great. 

Drove home in the dark. Still had not cried. Walked up the flight of stairs to the living room level of our house. My husband greeted me with kisses and a long hug. Then he held me and burst into tears. For a really long time. 

Locked in the Bathroom

Ok, not as dramatic as it sounds, but it is true, I was locked in a bathroom, unable to escape, for 1 whole hour on Wednesday. Went to my new OB/GYN's office and upon leaving I decided to make a quick trip to the restroom. Bad idea.

The door was one of those handle doors that you pull down or up to unlock the push button. I reached for it and pulled handle down. I watched as the lock button popped out, heard a weird clunk, and then nothing. Crap. Did what I think just happen, happen? Shake it a bunch more times - yep, it did.

The only thing between me and freedom


I then proceeded to politely knock on the door. Nothing.
Then  I shake the door. LOUDLY. Still nothing.
Then I see this:

Helpful button by the toilet


Not exactly "intended use", but I really don't want to be stuck in the bathroom all day, so I ring it.

Someone comes and knocks on the door. I explain the situation and after convincing her I do NOT - in fact - have the door locked, she calls in reinforcements. They can't open it either. They shake and wiggle, but that door is not moving.

About this time I realize how hungry I am. I forgot to eat breakfast, but I did have the forethought to throw a yummy, blueberry bagel in my purse (wrapped of course). I'm starving. The bagel napkin peeks out from my purse sitting in the sink. It's after 3pm and I haven't eaten a thing. I text my BFF who I was on the way to visit and let her know my predicament.


Seriously. I could just imagine the door opening and a crowd of people standing there. And me. With my mouth full. Of what - they aren't sure of. I could totally see that happening to me. That's the sort of thing that would happen to me. Kinda like getting locked in a bathroom.

10 minutes later I overhear someone say "we could slip her a really, really thin pizza under the door" which is super weird because
    a.) I never said out loud I was hungry
    b.) girl aim is usually not that great - the floor would be the only place to set down a urine sample container  
    c.) HOW THE HELL LONG DID THEY THINK I WAS GOING TO BE IN HERE?

As the minutes tick by and I hear a new group of people attempt to bang on door handle with a hammer, it occurs to me that I am standing (in one of the few places available), directly across from the door. It occurs to me that this is not the best place to stand and I move to the corner beside the door. So here I am, a 40 year old infertile woman, trapped in her OB/GYN's bathroom, standing in a corner. And somehow the absurdity of it all, makes me smile; when all I have wanted to do for the last 2 days is cry.

At that moment the door handle goes flying across the room at lighting speed EXACTLY where I HAD been standing. POW!

The door still does not open.

video

So they screw around with the door some more. More hammer bangs ensue. I inquire as to unscrewing the hinges, but they seem to think it won't work. I inquire if I should try and use a credit cards - they give the thumbs up and I watch as my marta card splits in the middle for cramming it in the too tight space. I begin to wonder if they are going to have to break out the metal saw. Or if they even have one.

Someone tells me to make sure I'm not standing in front of the door. I refrain from a smart aleck comment. 5 minutes later, the door unceremoniously opens. Hurray!

A crowd is gathered  outside (of course) with my doctor standing in the middle. "Welcome to our practice!" Several people ask if I am ok (I was only in there for an hour folks). Knowing I'm starving and having a severe aversion to people staring at me, I quip "yea, this sort of thing happens to me all the time." As I am handed a free parking validation (woo hoo!), I notice the strange look on the lady's face. I realize she is trying to figure out if I meant I get locked in bathrooms all the time. Perhaps "yea, weird things happen to me all the time - no biggie" would have been a better response, but the moment has passed to clarify and I run out the door. There is a wrapped bagel with my name on it.

Tuesday, October 9, 2012

Failed again

The Beta hcg levels went down to 15: chemical pregnancy, ie. failed cycle.

I knew before I even read the email. I knew when my phone went off at 2:55am to let me know that my BFF's baby made its debut. I knew yesterday when I made my limbo post yesterday, I just didn't want to believe it.

This is the part where I feel like a failure.

My husband and I hugged each other for a long time this morning, but then barely spoke after he got out of bed. As hard as this is for me, I think it's harder for him. I have a son - he does not. He has wanted children from the very beginning and I had to disclose the problems we would encounter (my cryoablation) when we had only been dating 3 weeks. His only question then was if I still produced eggs...

He can't console me and I'm not sure how to console him. A selfish part inside wants me to yell out "you can still have a biological kid - it's ME that's the problem". I wonder if his family, or even he, thinks that marrying me was a bad idea. An illogical part of me whispers that he will leave. What do I bring to the table?

I feel broken.

I can't even do the basic function of a woman.

I haven't cried and just walk around pretending everything is fine. My mom says she is devastated and wondered if this is just what clinics do to get more money out of you. I have to be the strong one and explain the plain fact that clinics in India get more money on successes than failures. Not to mention attract more clients.

Last week I signed up for a seminar tonight at my clinic here in Atlanta. It's a seminar to discuss infertility options, get a free AMH blood test, and get free one-on-one with one off the doctors. I'm curious about my AMH since the one test in India came back so low, thus I will go. Talking with a doctor will help too. I'll probably avoid sitting next to the peppy people. Shouldn't be hard. I've noticed that everyone avoids people with recent failed cycles. I guess it's like the pregnant girl in high school - they don't want to "catch" it. 

Monday, October 8, 2012

Still in Limbo

We were suppose to get the update today. We didn't. Which is not surprising, because sometimes that's just how it is. 72 hours will give a better picture of where we are at anyway.

Woke up a 4:38am and started checking email. Realized around 11am it wasn't going to come. Hopefully I will wake at a normal time tomorrow morning.

Rather than write out a long post (and rather than reread what I wrote yesterday), I will just recap what I sent to my mom this morning.

yea, I know she is looking for the hcg value to double every 48-72 hours, so she may have not been able to do the test today, knowing that tomorrow is just as good (if not better.)

Just as an FYI,
At 14 days
any value over 25 is considered pregnant. 
any value under 5 is not preg
5-25 is indeterminate

Ours was 27.44
The average for 14 days is around 100. The value doubles every 48-72 hours (for many many weeks.) If you do not see the value doubling, then it is cause for concern that the growth may have stopped. This can be from ectopic pregnancy or that the embryo has just stopped growing and the body will usually miscarry it naturally. Happens all the time and of course at my age the chances of miscarriage is higher.

So I guess we are waiting to see if it is still growing properly. From what I understand, a low value could have been caused by the embryo implanting itself a little late, or it could be the embryo that fertilized late (1 out of the 3 did.) .  Healthy babies have been born with initial low hcg values, but it significantly lowers our chances. A statistic I saw said that <35% will be successful when the value is between 25-50 at the 16 day mark. Low hcg has no bearing on the baby's health after it is born.  If it is growing slowly, then there could still be chance and they will just monitor every 2-3 days until the 5-6 week mark when an ultrasound would show if there is a gestational sack and if it is empty. At least this is how it is done in the US. I haven't asked her yet. 

Literally in limbo and I guess it could go either way.


Sunday, October 7, 2012

New Advances in Infertility

Each of these mouse pups was born from an egg scientists created using embryonic stem cells. 
On thursday, NPR had a fascinating story on a breakthrough discovery for infertility. Even more fascinating  they did it with induced pluripotent stem cells (as opposed to the controversial embryonic stem cells). If they can do it for women, then not only will it reduce/eliminate the biological clock worry, but also provide a solution for the dreaded "unexplained infertility" diagnosis that plagues so many women. This will be a game changer for future generations of infertile women. There are even great implications for men with sperm issues, as well  as the many hurdles faced by the LGBT community.

Alas, this will not apply to many of us currently in the throes of infertility. All is not lost. Many doctors are currently working on various cell technologies that apply to infertility. Autologous Endometrial Coculture is one example of a technology promising encouraging results. What does all that fancy wording mean? The short of is that they take cells from the lining of a woman's uterus and use them as a more natural environment for fertilized eggs than the previous methods. Studies have shown that in certain cases embryo development is improved, as are IVF success rates.

Dr. Patel's clinic in India is working with a similar concept: certain clients can qualify for the case study in which natural cells from the IVF patient are used to surround the egg pre-fertilization. They are seeing an increase in fertilized eggs and while it's too early to determine if this results in actual healthy babies born, I can say I was very impressed to learn that 3 out of 4 of my eggs were fertilized with this method. There is more to this method than I am [purposely] describing, but that is better left to the professionals or perhaps, when I can be less emotionally attached to the subject matter.

I have no idea if this will help the quality of my eggs/embryos in the long run, but it is still very exciting. My first cycle ended up with 2 eggs and only 1 of those fertilized. That 1 egg took over 24 hours to fertilize. On my second cycle (with the new protocol) I had 4 eggs extracted and out of those 3 fertilized. Like my first cycle, one of those was a late bloomer, but maybe it's the one implanted now and thus causing a lower hcg. Apparently my case is not an anomaly as the Akanksha Infertility Clinic is seeing really encouraging results with women that qualify for the case study. Even if it doesn't work for me, I will be really excited if this helps improve success rates for women in general.

Science is so cool. 

Saturday, October 6, 2012

Congratulations - you MIGHT be pregnant. Maybe. Kinda sorta.

GAH!!!!!!!!!!

GAH!!!!!!!!!!

GAH!!!!!!!!!!

Ok, I feel  a little better now.

This morning's email:

Dear Kristina,

Hello,

Beta hcg is 27.44 which is low. Report attached. We will repeat it on 8th October.

Which immediately sent me to google of course. In my bed no less. On my iPhone.

The first website that caught my eye was this one: Beta HCG levels - and how to interpret them. Good title right? That's what I thought too. Don't bother reading it. 7 paragraphs to basically communicate this: Beta HCG levels vary according to the gestational age. In a non-pregnant woman, they are less than 10 mIU/ml. They are typically about 100 mIU/ml 14 days after ovulation in a healthy singleton pregnancy. Well that was helpful said NO ONE EVER who had a low Beta hcg.

After perusing a few other websites, I get slightly more helpful information (LMP stands for last menstrual period):

weeks since LMPmIU/mL
35 – 50
45 – 426
518 – 7,340
61,080 – 56,500
7 – 87,650 – 229,000
9 – 1225,700 – 288,000
13 – 1613,300 – 254,000
17 – 244,060 – 165,400
25 – 403,640 – 117,000
Non-pregnant females<5.0
Postmenopausal females<9.5
Another website says anything over 25 is considered a pregnancy. Others saying that low count could be a result of the embryo implanting a day later. 

Lots of websites say that it could be fine, but then I start googling low beta hcg level. Not a good idea. See a lot mentioned about ectopic pregnancy and other non-viable pregnancies. See anecdotal cases where everything is doubling as it should, but it takes weeks and weeks to basically conclude it's not going to happen. 

So basically we're in limbo. And it sounds like if it is a viable pregnancy, then we may be in limbo for another month. 

2ww extended. 

Friday, October 5, 2012

Here we are again - 2ww

Formula for moment of inertia
from: http://www.wikipremed.com/image.php?img=010105_68zzzz111100_12002_68.jpg&image_id=111100


I have about 100 things to write about, but right now I'm stuck with inertia over our pending results for our 2ww. My husband is out of town until Saturday night, and as much as I would like to say if the email comes tomorrow than we will wait to read it together, it's not gonna happen. If the email comes, I'll read it. This last week I've felt like a pressure cooker with every emotion beginning to boil up.

For some reason I thought it was coming on the 6th, but my husband thought it was the 7th or 8th. He remembered that the clinic is normally closed on Sundays, so if we don't get an email tomorrow then it will probably be Monday. In fact, if it isn't in by the morning, then we probably won't get it till Monday morning because of the 9 hour difference: surrogate tests should be done by my late morning time.

Truthfully, if it's bad news, it's probably best that my husband and I don't read it together. Like many men, he doesn't do well with tears and I know that this entire process is probably harder on him then it is me. At least mentally. Never-the-less, if it is bad news then I will surely cry and the last thing I need to add to his woes is my tears. Last time we went through a cycle it was super hard for him with every up and down and when we got the bad news, we could barely speak. I had prepared myself better for the bad news, but not enough that I could console him.

Last time I didn't even tell my siblings and close friends when we got the bad news. I just didn't want to talk about it. My husband called his family and I emailed my mom. She was pretty sad, so I stayed strong. A month or two later everyone else eventually came around and said "I guess it wasn't good news." By then I was already in  mode for my new cycle and had completely forgotten I didn't update anyone. This time we've told more people and gave promises of an update when we find out.

The update is hard enough, but it's the feedback that will really get me. I just don't want to have to have one-on-one conversations with each person on how they are sorry it didn't work out. Look at me. I'm already thinking the worse. I can't help it. Need to think positive thoughts. I left India on a super-positive note and I need to keep it going.

Sigh. Easier said than done. I have so many things I need to work on, but can't seem to do any of them. 2 ww. Bring it. 

Tuesday, October 2, 2012

What a week... wait, it's only Tuesday

Photographer: Jill Greenburg
http://abcnews.go.com/Health/popup?id=2242810


Yesterday morning, I was reading my son's facebook status and out of nowhere I burst out crying. Not a small cry, but one of those full-on crys that makes you think "thank goodness I'm alone" when it's all over.

What was the status you ask? That's the problem. I couldn't read it.

I have ADD (Attention Deficit Disorder). The correct term is actually ADHD (the DSM-IV combined the terms years ago) and now ADD is listed as a subtype. Why do I call it by the sub-type name? ADHD is a controversial topic, thus the last thing I want is for people to say to me "that's baloney - you aren't even hyper", which means I have already lost the argument before I even have begun to explain the difference.

It's an argument I've grown weary of. Fortunately I've known doctors and people that know the reality of how hard it can be to deal with this problem; it can be soul-crushing to be honest with you. In addition to dealing with the multitude of issues it causes, I'll often run into people that will make a snarky comment or worse, self-diagnose it. Do I think it's possible that it's over-diagnosed or over-medicated? Yes, but not nearly as much as you see in the media. For every lame brain, non-researched excuse of why it's not real I can give you solid facts of why it is. It's as maddening as someone telling you that infertility is "all in your head". My absolute favorite is when a doctor (who has never studied it) jumps on the fashionable bandwagon. Thank GOD those are few and far between. Anyone that goes through the torture of not being able to process a conversation IN THE MIDDLE OF a conversation, knows the personal hell that can be ADD.

In addition to using the technically incorrect term "ADD", I also avoid calling it "Adult ADD". I've had it since I was a kid, they just didn't even know what it was back then. Mostly I was called scatterbrained, day-dreamer, or my personal favorite "not reaching her potential". I had no idea what was wrong with me and often just thought I was somehow broken. As a child it was depressing to constantly think I was crazy, lazy, you-name-it, and as an adult it is exhausting. Especially on days/weeks that I am particularly bad. I haven't taken medicine for years as the side effects far outweighed the slight benefits that it gave me, and so I have learned coping mechanisms that effectively make help me make it as a normal, bright, individual. Most of the time (unless I'm in a reading block), I manage quite well. You will never see me use it as an excuse, except on the rare occasion I have a private meltdown in a rush of frustration and insecurity.

If you are a regular reader of my blogs, you will see that I occasionally veer off topic, like I seem to be doing right here and apparently right now. Sigh. That's part of the problem.

Back to my story. 

I couldn't read my son's status. There are times I can't read. I try and it's just jumbled up and my brain won't process what I have read. Even if I read it 5x. Even if I read it 10x. It really sucks. Conversations can be the same. At work I write everything down, record meetings, and make sure anything that is important gets sent to email and immediately put on my calendar.

Having taken time off from work (after getting fired in February when asking about infertility benefits), I've gotten behind and now need to majorly study to get back in the job market. My job is one that I have to constantly stay updated. Not being able to read anything more than 3 sentences long is a MAJOR PROBLEM. Thus the realization of this yesterday morning made me have a meltdown.

This happened just when I have resolved to NOT let the EEOC decision to not pursue my case get me down (they issued me a "right to sue" document if I ever want to deal with that nightmare.) Friday I received that lovely letter, but after I read the letter more closely, I realized that my old company denied that I ever told them about infertility. Point blank said I never came to them. Stated that they had no idea I was going through infertility and denied that they had asked me directly if I had had a miscarriage when I made a statement about stress of some bullying that was causing me medical issues. (Note: I actually have proof that my boss gave me her infertility doctor's information to contact, but again, I don't know if sueing will cause me more grief than it's worth.)

In the back of my head, I think I half wondered if something had happened with my ADD that I just didn't realize. The letter let me know that it really wasn't me. My company stated it was for performance reasons, yet had not ever said there was any problem with my performance. I've won awards for stellar performances at companies before. The very week I was  fired (4 days after our 2 guys returned from paternity leave no-less), our toughest client had given me huge praises - something they never did. It wasn't me. I could be furious at my company, but it at least I receive confirmation that it wasn't me.

But that didn't help yesterday morning. I still had my meltdown. Then I noticed my period had started. Well that figures (and explains the meltdowns better). The day saw me have 2 more meltdowns. The second one  with a doctors office when I was late for an appointment, got lost (ended up being a tornado warning weather), and they cancelled me. Afterwards I had to rush to the DOL and wait hours to reschedule a missed appointment from when I was in India. (They scheduled it for me a few days prior and sent an email when I was halfway across the world.)

The third meltdown came from explaining the whole day to my husband and then simultaneously thinking about how I could be passing off this ADD to our child. I guess I'm carrying a larger load than I wanted to admit to myself. We get our 2ww results either Saturday or Monday and everything hit like a ton of bricks at once.

Today was a better day. My period makes me CRAZY and unable to handle stress for usually around 24 hours. Today seem to pass the 24 hour mark and I went to my volunteer place and was unexpectedly asked to manage 25+ volunteers. That not only helped me feel better about myself, but gave me a warm and fuzzy about helping others. I was profusely thanked by the top people at the end of the day.

2ww. Yea, I thought I was totally beating you this time. Not so much.

On a brighter note: my boobies no longer hurt.