As I said in my last blog we had an appointment with the doctor last Friday (Oct 14th) to do a follicle count and to get the results of my AMH test. Well once again we had good news and bad news, but according to the doctor the good news in this case is out-weighing the bad news.
Bad news is that my AMH level has significantly dropped from 0.48 in June to 0.16, which is almost undetectable. The doctor said if this would have been my first AMH, no one would have even touched me for IVF. But he said it seems that many people who have endometriosis seem to have lower AMH, but many are still able to produce children especially in my case because.... the good news is that the ultrasound showed a follicle count of 9!!!! And since the follicle count is a more important predictor because we can physically see that there are eggs left, the doctor said he is kinda going to ignore the AMH. My previous follicle count in June was an 11, but the margin for error is +/- 2 so it looks like my egg reserve has stayed the same which is AWESOME!
The doctor is puzzled as to how I have 9 follicles on my own this cycle, and 6 last cycle, but during the IVF drug treatment I was only showing 2 follicles. So we had a long talk and the doctor and I are both convinced that my body doesn't react well to the overload of medication I have been on for the last 10 months. He thinks the steroid I was on from January to June might have totally screwed up my AMH levels, since AMH is directly connected to your pituitary gland, and the steroid I was on directly affects that as well. He thinks that all of my hair shedding/loss, the drop in AMH, and the nonreaction to the drugs might all be attributed to the steroid making my pituitary gland shut down. He also added that the combination of all the hormones in the birth control pills and my pituitary gland being messed up could be the reason for no reaction to the IVF drugs. Soooo, what is the PLAN?
Well, we are going to try and prepare my body for IVF as naturally as possible and with as few hormones as possible leading up to another IVF cycle. The doctor is NOT going to give me any kind of hormones like birth control pills or progesterone this cycle to try and force a period to come when they want it to in order to start IVF. He just said we will leave you alone, but you must start on your own no later than Nov 5th, or else we will be forced to push you back into the December cycle. Great no pressure!
The medicine I used last cycle is still being tested, and the doctor said now that he hasn't decided which group of medicines I will do next IVF and he will not decide until those results come back. Which means he NOW isn't opposed to using the same medicines, if in fact the first ones were counterfeit.
We also discussed the hair shedding issue and I told him it was a big concern for me. I told him about my DHEA research and that I had seen several women blogging online talking about their hair loss. The doctor thinks the hair loss is most likely from 1 of 3 things: birth control pills, the predisone steroid I was on from Jan-June, or the DHEA. But that is it definitely from a hormone imbalance of some sort, most likely created by all the stuff I have taken. So I am stopping taking the DHEA for a couple weeks to see if that makes a difference, since that is the only one of the three I have been on most recently. The doctor seemed to have a strong feeling that the hair loss is the bottom fall-out of the predisone. Which to me seems strange because I had hair loss with it in June and July, then it seemed to almost stop in August, and then got really bad again in late Sept/Oct. I wouldn't think that the after effects of something would go up and down like that, but who knows???
My mom found this all natural shampoo, vinegar rinse, and oil spray online that I am going to use to hopefully try and stop the hair shedding/loss. The vinegar rinse says that it is supposed to help remove the excess build up of DHT which is actually testosterone, which is what DHEA is converted into. I read a journal article online that said if women have too much testosterone in their body, either naturally, or they are taking too much DHEA, the body converts it into DHT and then tries to expel the excess DHT out of the body, most of the time through the scalp and hair follicles which leads to hair loss. Ahhh Haaa! I think I may be on to something! So hopefully this stuff will help. Keep your fingers crossed! I am pretty sure by the time we figure this pregnancy hormone thing out I will either have my MD or PhD or some kind of medical research certification!! Ha ha!
Basically I am learning more and more everyday that this journey to have a baby this way is a huge guessing game and really the doctor's don't know much more than I do. They can constantly change up the variables, but when it is all said and done there is no exact science and it is all just a big experiment, that may or may not work. I am glad that the doctor is willing to listen to what I have researched and then we come up with a plan together based on both of our opinions, research, and his experience.
For now we will just go on about our normal lives because there isn't anything we can control and if my cycle decides to come on or before Nov 5th, then we will jump back into IVF mode. If my body decides it isn't the right time, then well..... we will wait. In the meantime, we are sending lots of good energy and love to my friend Dave in New York who suffered a brain aneurysm a couple weeks ago, but is making a miraculous recovery! My problems seem so small next to what you have been through. And Go Cardinals!
Jenny
Monday, October 17, 2011
Monday, October 10, 2011
The Hairy Rollercoaster
Today, I am feeling really sad. I have mentioned in my past blogs how after I stopped taking the steroid predisone suddenly I started experiencing some hair loss in July. The hair loss went up and down for about 6 weeks, and seemed to be getting better in August. I then started the birth control pills (2 a day) for 38 days and then did 6 days of injectible IVF drugs. Well the hair loss has increased noticeably in the last 2 weeks. Every time I wash my hair my hands are covered in hair in the shower. If I brush my hair when it is wet out of the shower the brush is full of hair and I can run my hands through my hair and I have a handful. If I brush my hair while blow drying it my brushes are completely full of hair and when I am done blow drying if I grab the ends of my hair I have another handful. It is really scary! So the last 5 days I have tried not washing my hair as much and not brushing it when it is wet or when blow drying, but I still seem to be shedding large amounts of hair. I have been wearing my hair pulled up because if not, my clothes are covered in hair. I am scared to death! The anxiety when I see it all falling out is almost paralyzing. I feel sick to my stomach. This is not what I signed up for. A girl's hair is her identity, and a part of who she is. I just feel ugly, and well.... like I want to cry. Actually I am crying as I sit here writing this. I have asked the nurse coordinator and the doctor about this and they don't seem too concerned. I have mentioned it in my last two appointments, and they seem to brush it off, and the nurse coordinator even said at my last appt, "Well you just might be a bald pregnant lady." Ummmmm, not cool with me!
So this morning I called the Dr's office again and spoke to the nurse coordinator and cried to her and told her I was really freaked out about how much hair was falling out. She said she didn't know what it was from, as it could be from any number of things, but that she would talk to the doctor about it this afternoon and get back to me. So, I will wait and see what he says. I am hoping he has a solution!!
Update: I just heard back from the doctor and he said I should do two things. One get some Rogaine Women at the store and start using that. Second, he said make an appt with my dermatologist right away to see if there is anything he can suggest. So I will start there.
As far as updates go on the IVF front here is what is new. After being canceled in September, the doctor said I would just go on to have a normal cycle/period. Well that didn't happen. My cycle was 34 days instead of the normal 26-28. Soooo, I thought maybe I got pregnant on my own!? On Thursday this past week (cycle day 32) I went into the doctor for an ultrasound and blood test to see what was going on . The doctor did the ultrasound first and for the FIRST time we had some good news! He looked at my uterus and the lining looked really good, and he thought I might be pregnant, (which we later determined I was not). He then looked at my right ovary and I had 4 follicles on it!!! Well if you remember during the beginning of the cycle with the drugs I only had 2 small follicles. The doctor was very happy to see 4 large follicles on the right and then also saw 2 decent sized ones on the left. He seems to think an answer to why we weren't seeing any growth with the drugs is that the BC pills screwed up my cycle days and what we thought was day 1 of my cycle really was NOT, and so we weren't stimulating on the right days. Anyway, he said this just shows that I am capable of producing at least 6 follicles, so he is confident if we can get the cycle days right we should have good stimulation and follicle response.
In regards to the medicine being tested, we are still waiting to hear. Apparently the process can take up to a month to complete. The doctor said we are still going to go with a different set of medicines for our IVF in November. (Well that is if I am cleared to do November's cycle) What does that mean? Well the doctor wants to try and NOT use BC pills to regulate my cycle this month, to get me on target for next month. He wants to try and have as natural a cycle as possible, because the birth control pills jacked everything up so bad last time. When I spoke with him a few minutes ago he said he wants to introduce progesterone on cycle day 14, for 10 days and then stop taking it and hopefully this will make my cycle start. (I am not sure if it is the big needle injections or just a pill, but I am hoping pills!!??) He needs my cycle to start by a certain day in order for me to be a part of the November cycle. If by chance, it doesn't cooperate and start by the time he needs it to, then we might be pushed back to December cycle. Got all that? Phew, I am exhausted just trying to understand it all myself.
Why can't he just let me or everyone else for that matter just have their normal cycles and be more in tune with what the natural body is doing? Why must everyone be batched into groups? I don't really understand it myself, but he mentioned something about the lab, and how there is only enough space for a certain amount of eggs and if everyone was on their own cycle then they wouldn't have enough space and it would be super confusing and also the doctor would be on call 24/7/365. I guess the batching keeps everyone relatively at the same stage so it is less confusing?? I don't know, that is just kinda what I gathered.
So what's next? Well I have to go to the doctor this Friday to have another ultrasound and blood work done. The doctor is going to do a follicle count again during the ultrasound to see if he thinks my egg reserve has gone down or stayed the same in 5 months. They did some blood work last Thursday when I was there, to also check my AMH levels, which also gives them an idea of what my follicle/egg reserve is doing. So they will compare both of those results and hopefully we will have some more good news, because I am not sure I can deal with any more bad results right now.
Jenny
IVs-2
Blood Draws-6 Vials-23
Needle Injections-16
So this morning I called the Dr's office again and spoke to the nurse coordinator and cried to her and told her I was really freaked out about how much hair was falling out. She said she didn't know what it was from, as it could be from any number of things, but that she would talk to the doctor about it this afternoon and get back to me. So, I will wait and see what he says. I am hoping he has a solution!!
Update: I just heard back from the doctor and he said I should do two things. One get some Rogaine Women at the store and start using that. Second, he said make an appt with my dermatologist right away to see if there is anything he can suggest. So I will start there.
As far as updates go on the IVF front here is what is new. After being canceled in September, the doctor said I would just go on to have a normal cycle/period. Well that didn't happen. My cycle was 34 days instead of the normal 26-28. Soooo, I thought maybe I got pregnant on my own!? On Thursday this past week (cycle day 32) I went into the doctor for an ultrasound and blood test to see what was going on . The doctor did the ultrasound first and for the FIRST time we had some good news! He looked at my uterus and the lining looked really good, and he thought I might be pregnant, (which we later determined I was not). He then looked at my right ovary and I had 4 follicles on it!!! Well if you remember during the beginning of the cycle with the drugs I only had 2 small follicles. The doctor was very happy to see 4 large follicles on the right and then also saw 2 decent sized ones on the left. He seems to think an answer to why we weren't seeing any growth with the drugs is that the BC pills screwed up my cycle days and what we thought was day 1 of my cycle really was NOT, and so we weren't stimulating on the right days. Anyway, he said this just shows that I am capable of producing at least 6 follicles, so he is confident if we can get the cycle days right we should have good stimulation and follicle response.
In regards to the medicine being tested, we are still waiting to hear. Apparently the process can take up to a month to complete. The doctor said we are still going to go with a different set of medicines for our IVF in November. (Well that is if I am cleared to do November's cycle) What does that mean? Well the doctor wants to try and NOT use BC pills to regulate my cycle this month, to get me on target for next month. He wants to try and have as natural a cycle as possible, because the birth control pills jacked everything up so bad last time. When I spoke with him a few minutes ago he said he wants to introduce progesterone on cycle day 14, for 10 days and then stop taking it and hopefully this will make my cycle start. (I am not sure if it is the big needle injections or just a pill, but I am hoping pills!!??) He needs my cycle to start by a certain day in order for me to be a part of the November cycle. If by chance, it doesn't cooperate and start by the time he needs it to, then we might be pushed back to December cycle. Got all that? Phew, I am exhausted just trying to understand it all myself.
Why can't he just let me or everyone else for that matter just have their normal cycles and be more in tune with what the natural body is doing? Why must everyone be batched into groups? I don't really understand it myself, but he mentioned something about the lab, and how there is only enough space for a certain amount of eggs and if everyone was on their own cycle then they wouldn't have enough space and it would be super confusing and also the doctor would be on call 24/7/365. I guess the batching keeps everyone relatively at the same stage so it is less confusing?? I don't know, that is just kinda what I gathered.
So what's next? Well I have to go to the doctor this Friday to have another ultrasound and blood work done. The doctor is going to do a follicle count again during the ultrasound to see if he thinks my egg reserve has gone down or stayed the same in 5 months. They did some blood work last Thursday when I was there, to also check my AMH levels, which also gives them an idea of what my follicle/egg reserve is doing. So they will compare both of those results and hopefully we will have some more good news, because I am not sure I can deal with any more bad results right now.
Jenny
IVs-2
Blood Draws-6 Vials-23
Needle Injections-16
Monday, September 12, 2011
Canceled
Well, things have gone from bad to worse. My IVF cycle has been canceled. Which means I am off all medications as of 4pm today. Why? Well here is how I can best explain it.
I started my stimulation medications last Wednesday. That morning I did a blood test and my estradiol level came back at 42, which is normal but a little low for the beginning of a cycle. All my other hormone levels were very normal, but my overall indicator number of my egg reserve was low.
I did 5 injections of the first medication before I saw the doctor again on Friday morning. The doctor wasn't thrilled with the 42 number, so he up'd my dose of the first medication for the injection Friday night. He did another blood test to test my estradiol level. I also started that second stimulation injection on Friday night.
We repeated the same higher dose (which was the max dose allowed for med 1), and med 2 injections on Saturday and Sunday.
We did the max dose of medicine 1 again this morning as instructed and went in to the doctor for another ultrasound, blood draw appt. I think I mentioned again in my last blog how the doctor had said that he wanted to see that estradiol level increase significantly. Well Friday's results came back and my estradiol level from Friday was at a 30. Lower!! What?? This is crazy! So the doctor said to me today, "You are taking the medications right? You are injecting yourself as we instructed you to with no issues?" I responded a little defensive, because I kinda felt like for a second he was accusing me of not taking the meds. I mean why would we hand him all this money and then not follow the rules? I showed him the bruises on my stomach as proof that we were taking the meds religiously to the minute as instructed. The doctor said it was very puzzling and strange that after that amount of stimulants in my system that my levels would go down. He also thought it was strange that I wasn't experiencing any of the normal side effects of the meds, like swollen ovaries, overly emotional, irritable, nothing! Yes, I did have the 2 small dizzy spells, but that was it.
So, the doctor did another ultrasound and this time, I was down to 2 follicles on the right side that were still very small and again none on the left. He said he was even more puzzled, because not only should my levels be rising, but my follicles, even if there is just 2 should be of a certain size and they are not.
Ugh! Ok, so he said lets do one more blood test today and see where your estradiol level is at. At this point you have been doing 6 days of high dose stimulating meds and your level should be at least at 100. If it is not at 100 or higher, there is no point in moving forward with this cycle since my body was having no reaction to the medication, and the results through ultrasound and blood work were obvious. So we did another blood draw and the doctor said he would call me after 4pm today with the results. And he did......
And that is when he said my test came back and my estradiol was only at a 56. So it had gone up, but not enough to mean anything. He said it is very puzzling because all of my preliminary tests showed that I was going to be a good candidate and progress well. The doctor said his first suspicion is the medicine. He said he has heard of counterfeit medicines getting into this country, especially since the IVF meds are so expensive and not covered by insurance. He said the medicine could have also been a bad batch. So first things first, we have to take all of our empty cartridges into him on Wednesday morning and he is going to investigate and have them tested. If it is the medicine, I would be so relieved! If it is NOT the medicine, we go back to the guessing drawing board to try and figure out why I had no reaction at all.
The doctor in the meantime will review all of my past testing to make sure he didn't miss anything, and he said that if the medicine is ruled out as the cause, then we might have to do some more testing on me to make sure I don't have an auto-immune disorder which would make me immune to the stimulant drugs. In that case, we would definitely need to have a conversation about donor eggs, because obviously I would not be able to use mine. Or we would need to start looking in a different direction like adoption, if donor eggs weren't something we wanted to pursue.
So after all this investigating is done, we are hoping to try another cycle in November with my eggs, most likely with different stimulating medicines.
Here is the big question you are all probably wondering...How am I feeling about all this? Well honestly.....probably the most disappointed I have ever been in my life. I am angry and sad and mad and I want to punch something and I also want to crawl into a hole for a couple days and cry till there are no tears left....but being the kind of person I am I will probably just cry a little and put on a happy face and move on with my life until it is time to try it again. Why? Because this process has taught me that I am not in control even one little bit. I don't know what is going to happen, and I can't MAKE something happen, so I might as well enjoy my life, and not spend it moping around. If it is going to happen it will, and if it isn't then it won't, and I have to be ok with that either way. Because if not I am going to waste this short life of ours that we are given in misery and playing the "what if" game. So I am just going to enjoy each day with what I have.
But I'll be damned if I am not angry about all those needles!!! 16 injections and thousands of dollars down the drain!! My poor bruised and sore belly!
So I am headed back to work tomorrow, to get my mind off of things and maybe go have some fun and a glass of wine this week! I could sure use one. So I will keep up on the blog when I have any updates over the next couple months. Thanks to everyone for their kind words and support over the last several weeks! Keep Justin and I in your baby thoughts and prayers! I will be in touch soon! Until next cycle.....
Jenny
The Needle Warrior
I started my stimulation medications last Wednesday. That morning I did a blood test and my estradiol level came back at 42, which is normal but a little low for the beginning of a cycle. All my other hormone levels were very normal, but my overall indicator number of my egg reserve was low.
I did 5 injections of the first medication before I saw the doctor again on Friday morning. The doctor wasn't thrilled with the 42 number, so he up'd my dose of the first medication for the injection Friday night. He did another blood test to test my estradiol level. I also started that second stimulation injection on Friday night.
We repeated the same higher dose (which was the max dose allowed for med 1), and med 2 injections on Saturday and Sunday.
We did the max dose of medicine 1 again this morning as instructed and went in to the doctor for another ultrasound, blood draw appt. I think I mentioned again in my last blog how the doctor had said that he wanted to see that estradiol level increase significantly. Well Friday's results came back and my estradiol level from Friday was at a 30. Lower!! What?? This is crazy! So the doctor said to me today, "You are taking the medications right? You are injecting yourself as we instructed you to with no issues?" I responded a little defensive, because I kinda felt like for a second he was accusing me of not taking the meds. I mean why would we hand him all this money and then not follow the rules? I showed him the bruises on my stomach as proof that we were taking the meds religiously to the minute as instructed. The doctor said it was very puzzling and strange that after that amount of stimulants in my system that my levels would go down. He also thought it was strange that I wasn't experiencing any of the normal side effects of the meds, like swollen ovaries, overly emotional, irritable, nothing! Yes, I did have the 2 small dizzy spells, but that was it.
So, the doctor did another ultrasound and this time, I was down to 2 follicles on the right side that were still very small and again none on the left. He said he was even more puzzled, because not only should my levels be rising, but my follicles, even if there is just 2 should be of a certain size and they are not.
Ugh! Ok, so he said lets do one more blood test today and see where your estradiol level is at. At this point you have been doing 6 days of high dose stimulating meds and your level should be at least at 100. If it is not at 100 or higher, there is no point in moving forward with this cycle since my body was having no reaction to the medication, and the results through ultrasound and blood work were obvious. So we did another blood draw and the doctor said he would call me after 4pm today with the results. And he did......
And that is when he said my test came back and my estradiol was only at a 56. So it had gone up, but not enough to mean anything. He said it is very puzzling because all of my preliminary tests showed that I was going to be a good candidate and progress well. The doctor said his first suspicion is the medicine. He said he has heard of counterfeit medicines getting into this country, especially since the IVF meds are so expensive and not covered by insurance. He said the medicine could have also been a bad batch. So first things first, we have to take all of our empty cartridges into him on Wednesday morning and he is going to investigate and have them tested. If it is the medicine, I would be so relieved! If it is NOT the medicine, we go back to the guessing drawing board to try and figure out why I had no reaction at all.
The doctor in the meantime will review all of my past testing to make sure he didn't miss anything, and he said that if the medicine is ruled out as the cause, then we might have to do some more testing on me to make sure I don't have an auto-immune disorder which would make me immune to the stimulant drugs. In that case, we would definitely need to have a conversation about donor eggs, because obviously I would not be able to use mine. Or we would need to start looking in a different direction like adoption, if donor eggs weren't something we wanted to pursue.
So after all this investigating is done, we are hoping to try another cycle in November with my eggs, most likely with different stimulating medicines.
Here is the big question you are all probably wondering...How am I feeling about all this? Well honestly.....probably the most disappointed I have ever been in my life. I am angry and sad and mad and I want to punch something and I also want to crawl into a hole for a couple days and cry till there are no tears left....but being the kind of person I am I will probably just cry a little and put on a happy face and move on with my life until it is time to try it again. Why? Because this process has taught me that I am not in control even one little bit. I don't know what is going to happen, and I can't MAKE something happen, so I might as well enjoy my life, and not spend it moping around. If it is going to happen it will, and if it isn't then it won't, and I have to be ok with that either way. Because if not I am going to waste this short life of ours that we are given in misery and playing the "what if" game. So I am just going to enjoy each day with what I have.
But I'll be damned if I am not angry about all those needles!!! 16 injections and thousands of dollars down the drain!! My poor bruised and sore belly!
So I am headed back to work tomorrow, to get my mind off of things and maybe go have some fun and a glass of wine this week! I could sure use one. So I will keep up on the blog when I have any updates over the next couple months. Thanks to everyone for their kind words and support over the last several weeks! Keep Justin and I in your baby thoughts and prayers! I will be in touch soon! Until next cycle.....
Jenny
The Needle Warrior
Saturday, September 10, 2011
Day 5 and 6
How things have changed in a few days. Let me start with yesterday, day 5, Friday. The morning FSH injection was the same as the 4 before it with no big deal.
I headed to the fertility clinic in the pouring rain for my 2 o'clock appt. I waited almost 30 minutes before I was ushered back to the ultrasound room. The wait was actually good because I was trying to organize my thoughts and remember what I wanted to say to the doctor. When I got into the room I did the usual routine and put on my floor length paper skirt and sat on the edge of the ultrasound table and tried not to forget what I had just tried to remember.
The doctor came in by himself first and asked how I was and I smiled and said ok. He said I had a nice white smile and I immediately started tearing up and led with, "Doctor there are some things I need to say to you. When Justin and I left here on Tuesday we were very disheartened, and upset.". Did i mention that everytime I am in a confronting situation or nervous situation i cry? Not sure why, but it just happens. So here i am in tears trying to sound mean and angry and the doctor looked at me and said, "Was I an asshole on Tuesday? Well if he wanted to put it that way, and I shook my head yes with a giggle. So I continued through the tears, "We chose you because we liked your personality, and thought you were very personal, and Tuesday you didn't seem to know our case at all.". I went on to mention my blood work that we never heard results on, the severe endo statement, and everything else that I didn't understand that he had said. His first response was, "I'm sorry. I think out loud and that is a fault of mine. I do have lots of patients, but i do know each persons chart backward and forward. Just because I might not know it that moment because I have seen 6 patients before you doesn't mean I am not putting lots of time and thought into your case. And I'm sorry if I was an asshole."
In the meantime the coordinator walked in and chimed in with some jabs towards to doctor trying to make me laugh. My tears finally stopped and we got to work on the purpose of my visit. The doctor said the results of my 15 vials of blood that I had given had come back and I do not have the disorder, disease, whatever it is that causes reoccurent pregnancy loss. Ok, check one good thing! He also said my FSH level had come back at 3.2 from the blood test I had Wednesday which is a good sign. All I know about that number is you want it to stay under 9 to be normal.
Then he did the ultrasound. He started with my right side again and my right ovary still has between 3-5 visible follicles that are very small. Soooo, not good. There has been no new follicles or growth of the ones that were seen Tuesday since I started the first med, Follistim. He then tried to find the left ovary with some difficulty again, and noticed maybe 1-2 small ones on that side, but he wasn't positive about those because it was so hard to see. Apparently my left ovary is very high and tucked in between some other stuff, ugh! Great!
So here is what he said. Start your second stimulating medicine as planned tonight. We are going to up your dose of the first med the Follistim to the max, 225IU per injection.(Twice a day, so 450 per day). We will do a blood draw today to check your levels and then take both medicines all weekend and Monday morning and come back Monday at 9am for another ultrasound/blood work appt. He said if we don't see any growth of more follicles by Monday or Wednesday we will need to have a conversation. Here come the tears again!
Then I had to go have another blood draw. Really can this day get better? Since I am a sissy I asked one of the nurses who is super sweet to hold my hand while I had my blood drawn since Justin wasn't there. She said absolutely! The nurse had a hard time finding my vein, ugh, I mean really!!!
So I drove home from the appt crying my eyes out. I can't imagine going through all of these shots for 7-9 days just to have to cancel everything. Ok, stop thinking like that and just try to stay positive. I called my mom on the drive home and pretty much cried the whole time. Its amazing how moms always know what to say to make you feel better! Thanks mom! I also called Justin and told him everything since he couldn't be there and he was also trying to be very positive and supportive. I have also decided on a phrase that I hate, "If it is meant to be, it is meant to be.". I think maybe I have said this before, but I hate it because it doesn't actually mean anything! So please don't say that to me. Ha!
Ok, so on to the evening I injections. Wow, I am not sure if it is coincidence or not but the order they give the injections seems crucial. The Follistim is 95% pain free. This next injection we started Friday night, yea not so much! I actually mixed the vials, yea I know, I couldn't believe I did it either, but there is no needle involved, only this plastic cap thing that punctures the vials. So we did the new 225IU dose of FOllistim first, and then we prepared the second one called Menopur. The needle for the Menopur is about the same gauge but a little longer and in a normal syringe. Ok, so here goes the second injection, YIKES! About the same bee sting from the needle, but the medicine burns!! Not horribly bad, but bad enough that I almost jumped. I did a little wiggle pain dance around the kitchen after the shot which surprisingly made the pain better, he he!
So today is Saturday and boy how things have changed in a few short hours. We woke up this morning at 650am to do the morning injection of just the Follistim. The Menopur is only an evening injection, the Follistim is morning and evening. Anyway, we did the injection like normal and within 10 seconds of doing the injection I got super dizzy, nauseous, and clammy. I immediately laid down on the ground because I thought I was going to faint, and then quickly had Justin help me to the bathroom just in case. The feeling went away within about 5 minutes and I thought it was weird because I have been taking the Follistim for 3.5 days now and have never had this happen. We went back to bed this morning and we woke up about 10am and I felt fine. We got ready and wanted to go out and get some breakfast before we went to a relaxing couples massage at 12:15. I called the coordinator on the way to breakfast and told her what happened, and she said sometimes that happens when u start taking higher doses and also adding the Menopur to the equation. We headed to breakfast and we were sitting waiting for a table and again I started feeling dizzy, light headed, and nauseous. We left immediately, called the massage place and canceled and headed home. I went and laid down immediately and felt really tired. I slept for about 3 hours this afternoon and just woke up. We will do the evening injections again tonight and hope for no side effects. The coordinator said to call her again this evening to check in. So it looks like I might be home bound for a couple days if the side effects continue because I am not allowed to drive. Let's just hope all these side effects mean something good is happening on the inside!!
IVs-2
Blood draws-4 Vials-20
Needle pokes-8
I headed to the fertility clinic in the pouring rain for my 2 o'clock appt. I waited almost 30 minutes before I was ushered back to the ultrasound room. The wait was actually good because I was trying to organize my thoughts and remember what I wanted to say to the doctor. When I got into the room I did the usual routine and put on my floor length paper skirt and sat on the edge of the ultrasound table and tried not to forget what I had just tried to remember.
The doctor came in by himself first and asked how I was and I smiled and said ok. He said I had a nice white smile and I immediately started tearing up and led with, "Doctor there are some things I need to say to you. When Justin and I left here on Tuesday we were very disheartened, and upset.". Did i mention that everytime I am in a confronting situation or nervous situation i cry? Not sure why, but it just happens. So here i am in tears trying to sound mean and angry and the doctor looked at me and said, "Was I an asshole on Tuesday? Well if he wanted to put it that way, and I shook my head yes with a giggle. So I continued through the tears, "We chose you because we liked your personality, and thought you were very personal, and Tuesday you didn't seem to know our case at all.". I went on to mention my blood work that we never heard results on, the severe endo statement, and everything else that I didn't understand that he had said. His first response was, "I'm sorry. I think out loud and that is a fault of mine. I do have lots of patients, but i do know each persons chart backward and forward. Just because I might not know it that moment because I have seen 6 patients before you doesn't mean I am not putting lots of time and thought into your case. And I'm sorry if I was an asshole."
In the meantime the coordinator walked in and chimed in with some jabs towards to doctor trying to make me laugh. My tears finally stopped and we got to work on the purpose of my visit. The doctor said the results of my 15 vials of blood that I had given had come back and I do not have the disorder, disease, whatever it is that causes reoccurent pregnancy loss. Ok, check one good thing! He also said my FSH level had come back at 3.2 from the blood test I had Wednesday which is a good sign. All I know about that number is you want it to stay under 9 to be normal.
Then he did the ultrasound. He started with my right side again and my right ovary still has between 3-5 visible follicles that are very small. Soooo, not good. There has been no new follicles or growth of the ones that were seen Tuesday since I started the first med, Follistim. He then tried to find the left ovary with some difficulty again, and noticed maybe 1-2 small ones on that side, but he wasn't positive about those because it was so hard to see. Apparently my left ovary is very high and tucked in between some other stuff, ugh! Great!
So here is what he said. Start your second stimulating medicine as planned tonight. We are going to up your dose of the first med the Follistim to the max, 225IU per injection.(Twice a day, so 450 per day). We will do a blood draw today to check your levels and then take both medicines all weekend and Monday morning and come back Monday at 9am for another ultrasound/blood work appt. He said if we don't see any growth of more follicles by Monday or Wednesday we will need to have a conversation. Here come the tears again!
Then I had to go have another blood draw. Really can this day get better? Since I am a sissy I asked one of the nurses who is super sweet to hold my hand while I had my blood drawn since Justin wasn't there. She said absolutely! The nurse had a hard time finding my vein, ugh, I mean really!!!
So I drove home from the appt crying my eyes out. I can't imagine going through all of these shots for 7-9 days just to have to cancel everything. Ok, stop thinking like that and just try to stay positive. I called my mom on the drive home and pretty much cried the whole time. Its amazing how moms always know what to say to make you feel better! Thanks mom! I also called Justin and told him everything since he couldn't be there and he was also trying to be very positive and supportive. I have also decided on a phrase that I hate, "If it is meant to be, it is meant to be.". I think maybe I have said this before, but I hate it because it doesn't actually mean anything! So please don't say that to me. Ha!
Ok, so on to the evening I injections. Wow, I am not sure if it is coincidence or not but the order they give the injections seems crucial. The Follistim is 95% pain free. This next injection we started Friday night, yea not so much! I actually mixed the vials, yea I know, I couldn't believe I did it either, but there is no needle involved, only this plastic cap thing that punctures the vials. So we did the new 225IU dose of FOllistim first, and then we prepared the second one called Menopur. The needle for the Menopur is about the same gauge but a little longer and in a normal syringe. Ok, so here goes the second injection, YIKES! About the same bee sting from the needle, but the medicine burns!! Not horribly bad, but bad enough that I almost jumped. I did a little wiggle pain dance around the kitchen after the shot which surprisingly made the pain better, he he!
So today is Saturday and boy how things have changed in a few short hours. We woke up this morning at 650am to do the morning injection of just the Follistim. The Menopur is only an evening injection, the Follistim is morning and evening. Anyway, we did the injection like normal and within 10 seconds of doing the injection I got super dizzy, nauseous, and clammy. I immediately laid down on the ground because I thought I was going to faint, and then quickly had Justin help me to the bathroom just in case. The feeling went away within about 5 minutes and I thought it was weird because I have been taking the Follistim for 3.5 days now and have never had this happen. We went back to bed this morning and we woke up about 10am and I felt fine. We got ready and wanted to go out and get some breakfast before we went to a relaxing couples massage at 12:15. I called the coordinator on the way to breakfast and told her what happened, and she said sometimes that happens when u start taking higher doses and also adding the Menopur to the equation. We headed to breakfast and we were sitting waiting for a table and again I started feeling dizzy, light headed, and nauseous. We left immediately, called the massage place and canceled and headed home. I went and laid down immediately and felt really tired. I slept for about 3 hours this afternoon and just woke up. We will do the evening injections again tonight and hope for no side effects. The coordinator said to call her again this evening to check in. So it looks like I might be home bound for a couple days if the side effects continue because I am not allowed to drive. Let's just hope all these side effects mean something good is happening on the inside!!
IVs-2
Blood draws-4 Vials-20
Needle pokes-8
Thursday, September 8, 2011
Day 4
Well today was much like yesterday with little drama with my morning and evening injections. The morning one seems to hurt less than the evening one, but that hurt is still not much. and I think it is because I am half asleep. I haven't really noticed any bloating in my abdomen yet, which they said is to be expected during this process, I am just not sure when that will happen, hopefully not at all. And I think I mentioned already that they said to expect moodiness, irritability, and maybe headaches. I haven't experienced the headaches yet either, and I double checked with Justin about the other 2 and he said nothing yet....
Today was my last day of work, and it was strange that I won't be back there until the end of September, but I am greatly anticipating the relaxing time off. Maybe I can work on finding myself a new career in writing with the time off...Ha!
I am off to the doctor tomorrow afternoon, and I will update later after I give him a piece of my mind!
Today was my last day of work, and it was strange that I won't be back there until the end of September, but I am greatly anticipating the relaxing time off. Maybe I can work on finding myself a new career in writing with the time off...Ha!
I am off to the doctor tomorrow afternoon, and I will update later after I give him a piece of my mind!
Wednesday, September 7, 2011
Day 3
Not to disappoint all of you who might be looking for some really exciting dramatic story of my first injection. Like me passing out or crying.....but honestly it was actually pretty simple, easy, and quick....
I am not sure if it was because I was so tired at 645am, or what but I just shuffled out to the kitchen like a zombie, grabbed the kit out of the fridge, got out the pen, loaded the creamer like plastic thing that holds the needle inside onto the end of the pen, dialed up the
dose, handed the pen to Justin, pinched my right side of my stomach and said ok, go. And he looked at me and I looked at him and I said, "Wait, maybe I should sit down for this.". Then I realized maybe I should sit down, pinch my stomach and close my eyes. Then I said ok go. But I opened 1 eye and said, "wait, wait not ready!". Ok, deep breath, third time same position, eyes closed and baby bee sting, the sound of the pen clicking as the medicine went in, and in 6 seconds it was over. Ok, not so bad. These first medicine needles are the smallest, and I am thinking the best way to build up to the bigger ones down the road.
Then at 930 this morning I had to run to the Lab Corp down the street from my house to get a blood draw. I was nervous as usual, but this Russian nurse guy was funny and calming and was super good at doing it quickly, so I survived having 2 vials drawn, no tears, just lots of deep breaths. Ok, 2 needles down 1 to go.....
The second needle tonight was actually less exciting than the morning. Justin prepared the needle cap this time and we did everything the same. He is very gentle and I told him maybe he should think about a second career as a nurse, he he! Honestly you can barely feel these needles because they are so fine. Great news for me!
So I survived Day 3 with 3 needles.
Here are my needle numbers to date just for IVF (not including any IUI stuff)
IV's- 2
Blood draws-3 Vials-19
Needle pokes- 2
I am not sure if it was because I was so tired at 645am, or what but I just shuffled out to the kitchen like a zombie, grabbed the kit out of the fridge, got out the pen, loaded the creamer like plastic thing that holds the needle inside onto the end of the pen, dialed up the
dose, handed the pen to Justin, pinched my right side of my stomach and said ok, go. And he looked at me and I looked at him and I said, "Wait, maybe I should sit down for this.". Then I realized maybe I should sit down, pinch my stomach and close my eyes. Then I said ok go. But I opened 1 eye and said, "wait, wait not ready!". Ok, deep breath, third time same position, eyes closed and baby bee sting, the sound of the pen clicking as the medicine went in, and in 6 seconds it was over. Ok, not so bad. These first medicine needles are the smallest, and I am thinking the best way to build up to the bigger ones down the road.
Then at 930 this morning I had to run to the Lab Corp down the street from my house to get a blood draw. I was nervous as usual, but this Russian nurse guy was funny and calming and was super good at doing it quickly, so I survived having 2 vials drawn, no tears, just lots of deep breaths. Ok, 2 needles down 1 to go.....
The second needle tonight was actually less exciting than the morning. Justin prepared the needle cap this time and we did everything the same. He is very gentle and I told him maybe he should think about a second career as a nurse, he he! Honestly you can barely feel these needles because they are so fine. Great news for me!
So I survived Day 3 with 3 needles.
Here are my needle numbers to date just for IVF (not including any IUI stuff)
IV's- 2
Blood draws-3 Vials-19
Needle pokes- 2
Tuesday, September 6, 2011
Frustration and the start
Day 1 of our IVF cycle started last night (Monday Sept 5th). I was instructed to call the coordinator as soon as the cycle started so that she could let me know what our next steps were. So I called her around 8pm, and I informed her that my cycle had started and she said ok, then you will begin doing your injections on Wednesday morning. And I responded by saying, "Ok, well when and how do I get those medications?" The coordinator said, "You didn't get your medicine? No one ever called you to get your payment and send you the meds?" I told her I hadn't heard from anyone. She then continued for the next 10 minutes to express how angry she was at some guy named Oscar at the pharmacy who was supposed to call me. And she kept repeating herself over and over. Honestly, I am not sure if she had had some cocktails earlier in the evening or what!? At this point it was obvious to me nothing was going to get accomplished during this conversation, so I just told her we would figure it out tomorrow. She continued to blame it on Oscar as I hung up the phone thinking to myself, well if she would have called me and verified that I had received the medicines last week, we wouldn't be in this predicament. I was totally unaware when and how I was supposed to recieve the medicines, so to me it seemed like she dropped the ball by not following up.
So this morning, Tuesday Sept 6th, Justin and I went into the office for a pre-scheduled ultrasound/blood work appt. When we arrived one of really sweet nurses named Jennifer took my blood pressure and weight. We then waited about another 20 minutes and then were were told to head to the ultrasound room where we would see the doctor and have the internal ultrasound performed. The doctor came in after about 10 minutes and he and Justin immediately began chatting. I on the other hand, clothed from the waist down with only a large paper towel didn't have much to say, can you say akward! Anyway, the doctor began talking about Justin's blood test results and said well it came back that he has a serious disease/illness...... um, um, ok, what??!! And then his next statement was this, "Well when anything like that comes back we immediately re-test it twice and turns out the test was wrong and it was a false positive. So actually Justin is totally healthy and doesn't have anything wrong with him. Um, um, ok? Really great way to start the conversation doc! And honestly why do you tell people these things if the test results were wrong? Just to scare the crap out of people and see their facial reactions? Funny joke!
Then the doctor starts chatting with the nurse/coordinator in the room and mentions that he needs to do this certain "thing" because I didn't have a D&C procedure done. "Whoa, whoa, whoa," I said. "What are you saying? I need a what and why?" I then said, "I had a hysteroscopy and D&C performed by YOU, 3 weeks ago!!!" And the doctor responds with, "Oh yea, ok we don't need to do the "other thing".
Ummm, ok did I just tell the doctor what procedure he had performed on me? Shouldn't he know these things, my history, my infertility issues, procedures HE performed, etc?? Now I am starting to freak out! Then he started the internal ultrasound, mentions something about my lining looking good, and then says this, "Oh yea, you have bad endometriosis don't you? (as he is staring at the screen)." Ummmmm, once again I piped in with, "Well actually NO, I was told I had mild endometriosis, but not on my reproductive organs."
And his response was, hmmm, ok. Once again, freaking out!! Is there something you are seeing, that you want to mention, doctor?? Have you ever looked at my chart or history? Do you even know my name? I wanted to say all of these things, but as I mentioned these situations are very intimidating, embarrassing, and your brain seems to float away from you at times. He finally made it to my right ovary and found 4-5 follicles. He said this is a low number of follicles. He then tried to find my left ovary with no success. After about 5 painful minutes he caught a glimpse of it and very quickly said he didn't see any follicles on it. It seemed a little too quick of a look to judge or count, but hey what do I know? Well wait...... apparently more about my medical history than my doctor at the moment. I asked what this follicle count number meant and he said it is low and I asked if the medicine I was about to begin taking tomorrow would help create new follicles and he said yes. So that was hopeful!
After the doctor left the room I left my oversized paper towel skirt behind and I was told I was done for the day. I honestly don't think I could have taken anything else today considering the level of frustration I was at with the doctor's knowledge of my case. I mean really? I was relieved that I didn't have to deal with a blood draw and a needle. I was told I would start the FSH folllistim injections tomorrow morning (Wednesday) and I would do them twice a day 7am and 7pm until otherwise directed. I was also told I would need to go to a Lab Wednesday morning at 830am for a blood draw to see how my body is initially reacting to the medicine. The doctor also said I would need to come back to the office on Friday for another internal ultrasound and blood draw. Well the only time they had was 2pm on Friday, so I had to take off work. I had planned on taking off work Monday Sept 12- Monday Sept 26th, so it just looks like my medical leave will start a couple days earlier than expected.
I picked up my medicine after work this evening from Walgreens and they were really great about only giving me the smallest amounts at a time because it is so expensive and you don't want to get stuck with medicine you don't need! Let me just say for 3 days of 2 of the medicines it is $1200!!! Crazy!
So tomorrow morning Justin will become my needle adminstering buddy for the first time. Do I think he is a little nervous? Yes. Am I nervous? I think everyone knows the answer to that.
But on Friday you can bet your ass I am headed in to the office and I am going to have a serious conversation with the doctor, just him and I. I have written down my frustrations from today, and all the other questions I have. Because we deserve a doctor who knows us and knows our case. I don't want to feel like a number or something on an assembly line. I really didn't think after our initial consultation with this doctor that this is where I would be right now. Frustrated and confused, and angry! So tonight as I go to bed, I thought my anxiety would be more about this needle waiting for me at 7am (and the one at 830!), but my anxiety now has turned to questioning our choice of doctor and his staff, and putting all of our hopes and dreams into the hands of someone who probably doesn't even know my name.......UGH!!!
So this morning, Tuesday Sept 6th, Justin and I went into the office for a pre-scheduled ultrasound/blood work appt. When we arrived one of really sweet nurses named Jennifer took my blood pressure and weight. We then waited about another 20 minutes and then were were told to head to the ultrasound room where we would see the doctor and have the internal ultrasound performed. The doctor came in after about 10 minutes and he and Justin immediately began chatting. I on the other hand, clothed from the waist down with only a large paper towel didn't have much to say, can you say akward! Anyway, the doctor began talking about Justin's blood test results and said well it came back that he has a serious disease/illness...... um, um, ok, what??!! And then his next statement was this, "Well when anything like that comes back we immediately re-test it twice and turns out the test was wrong and it was a false positive. So actually Justin is totally healthy and doesn't have anything wrong with him. Um, um, ok? Really great way to start the conversation doc! And honestly why do you tell people these things if the test results were wrong? Just to scare the crap out of people and see their facial reactions? Funny joke!
Then the doctor starts chatting with the nurse/coordinator in the room and mentions that he needs to do this certain "thing" because I didn't have a D&C procedure done. "Whoa, whoa, whoa," I said. "What are you saying? I need a what and why?" I then said, "I had a hysteroscopy and D&C performed by YOU, 3 weeks ago!!!" And the doctor responds with, "Oh yea, ok we don't need to do the "other thing".
Ummm, ok did I just tell the doctor what procedure he had performed on me? Shouldn't he know these things, my history, my infertility issues, procedures HE performed, etc?? Now I am starting to freak out! Then he started the internal ultrasound, mentions something about my lining looking good, and then says this, "Oh yea, you have bad endometriosis don't you? (as he is staring at the screen)." Ummmmm, once again I piped in with, "Well actually NO, I was told I had mild endometriosis, but not on my reproductive organs."
And his response was, hmmm, ok. Once again, freaking out!! Is there something you are seeing, that you want to mention, doctor?? Have you ever looked at my chart or history? Do you even know my name? I wanted to say all of these things, but as I mentioned these situations are very intimidating, embarrassing, and your brain seems to float away from you at times. He finally made it to my right ovary and found 4-5 follicles. He said this is a low number of follicles. He then tried to find my left ovary with no success. After about 5 painful minutes he caught a glimpse of it and very quickly said he didn't see any follicles on it. It seemed a little too quick of a look to judge or count, but hey what do I know? Well wait...... apparently more about my medical history than my doctor at the moment. I asked what this follicle count number meant and he said it is low and I asked if the medicine I was about to begin taking tomorrow would help create new follicles and he said yes. So that was hopeful!
After the doctor left the room I left my oversized paper towel skirt behind and I was told I was done for the day. I honestly don't think I could have taken anything else today considering the level of frustration I was at with the doctor's knowledge of my case. I mean really? I was relieved that I didn't have to deal with a blood draw and a needle. I was told I would start the FSH folllistim injections tomorrow morning (Wednesday) and I would do them twice a day 7am and 7pm until otherwise directed. I was also told I would need to go to a Lab Wednesday morning at 830am for a blood draw to see how my body is initially reacting to the medicine. The doctor also said I would need to come back to the office on Friday for another internal ultrasound and blood draw. Well the only time they had was 2pm on Friday, so I had to take off work. I had planned on taking off work Monday Sept 12- Monday Sept 26th, so it just looks like my medical leave will start a couple days earlier than expected.
I picked up my medicine after work this evening from Walgreens and they were really great about only giving me the smallest amounts at a time because it is so expensive and you don't want to get stuck with medicine you don't need! Let me just say for 3 days of 2 of the medicines it is $1200!!! Crazy!
So tomorrow morning Justin will become my needle adminstering buddy for the first time. Do I think he is a little nervous? Yes. Am I nervous? I think everyone knows the answer to that.
But on Friday you can bet your ass I am headed in to the office and I am going to have a serious conversation with the doctor, just him and I. I have written down my frustrations from today, and all the other questions I have. Because we deserve a doctor who knows us and knows our case. I don't want to feel like a number or something on an assembly line. I really didn't think after our initial consultation with this doctor that this is where I would be right now. Frustrated and confused, and angry! So tonight as I go to bed, I thought my anxiety would be more about this needle waiting for me at 7am (and the one at 830!), but my anxiety now has turned to questioning our choice of doctor and his staff, and putting all of our hopes and dreams into the hands of someone who probably doesn't even know my name.......UGH!!!
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