So Ryan has been pushing me lately to be more aggressive on the medical side of things. At first I wasn't sure how I felt about this. I mean, I feel silly to keep this dream alive after five years. I wanted to move on, whatever that means.
But I make it a point to always listen to my husband's wishes when it comes to infertility. I think part of it is being a submissive wife, but I think a large part of it is hoping it's the Holy Spirit working through him. Maybe we are supposed to keep pushing things medically. Maybe it's not even to conceive but to diagnose and treat another problem.
He just feels strongly that we should give it one last shot. And I do see his point. I haven't even tried many of the seemingly basic treatments that nearly all other infertile women have (injectibles, trigger shot, HCG, any ovulation drugs other than tamoxifen). Yes, I have tried for five years, but in that time all I've done is have surgeries, treat diseases with medication and take Tamoxifen. That's it. Should I throw in the towel after only trying Tamoxifen? I don't know how I feel about that.
So yesterday before leaving for work he basically instructed me to call Tep.eyac and demand a trigger shot and ultrasounds, and to call PPVI and see about becoming a patient again.
I have no problem with asking for a trigger shot, but I am a little hesitant to work with PPVI again. As you may recall, I ran into major roadblocks a year and a half ago with them and I believe I really fell through the cracks. I appreciate what they do, but they really dropped the ball with me. I did get a surgery, but in the months that followed all I did was pay $40 for a monthly cycle review and was told each time to learn yellow stamps. Really? Again? How about diagnosing the PCOS that is probably causing the excess mucus that requires learning yellow stamps?
Sorry. Off topic.
Anyways, I called Tepeyac and left a message asking for ultrasounds and a trigger shot. Today, a nurse called back and said Dr. L wanted me to schedule an ultrasound for day 12 or 13. I asked if that meant she would do a trigger shot and the nurse said all the note called for was scheduling an ultrasound. That's fine. I don't think she'd do the ultrasound if she wasn't at least considering a trigger shot.
So I have an appointment for next Tuesday morning. Ryan said he has no problem making the long drive there and back multiple days in a row if need be. Okay. I can do that if he can.
Then I called PPVI yesterday and spoke with someone who updated my information and said she'd have a nurse call me today. I did talk with a nurse today and she basically just asked what I was interested in. I explained that I was hoping to start working with them again and asked if she wanted any information, medication I was on, etc. So she asked for my medications, but honestly I'm not sure she would have if I didn't offer it. She asked about my hormone levels, I told her my progesterone and estradiol have been great the past year, and when I asked if she wanted any of those results she said no, that Dr. H would want them tested in the future.
So the nurse then said she'd have Dr. H review everything ("everything" meaning none of my records, just a few tiny details about the last 18 months, although I did make sure to stress that I had a recurrence of an endometrioma, which he told me at my post-op wouldn't happen for many, many years) and get back to me.
I know I shouldn't go into a situation with preconceived notions, but I can't help but think that doors are going to be closed to me when it comes to working with PPVI. My two main worries are that 1) I'm, again, not going to be able to have my blood drawn and mailed to them in Omaha, and 2) that Dr. H is going to want me to start taking T3 again.
I am not, under any conditions, starting over from scratch taking my stupid temps and pulses for months on end! Remember this statement! No way, no how!
Sorry.
Maybe they won't demand that. Maybe it won't be a deal breaker.
So I'm not sure how I feel about this. I guess I don't mind too much if doors continue to be opened. While I have felt called to be patient when it comes to adoption, I never really felt called to stop things medically. That was more my self-preservation kicking in (and my desire to not grow any more painfully large cysts. Is that too much to ask?). I mean, common sense would tell you that a pregnancy is not in my future, but I do feel uncomfortable stopping everything for good when we don't even know why I'm not conceiving.
It also helped that I watched a marathon of Mystery Diagnosis the other day. These people fight and fight for a diagnosis until they get one (actually, it usually seems like they just luck out with calling the right doctor). It was kind of inspiring.
We'll see. I guess it's something to do while I endure the terribly long excruciating adoption wait. I just hope it's not too difficult to go through the motions of acting like I think there's still a shot of getting pregnant. It was kind of humiliating having the RE the other day tell me repeatedly that "five years is a looooooong time." But I guess if something is humbling, then it is only good for me, right? Maybe continuing on with treatments will all be one big lesson in humility.
Who knows what this will bring. All I can do is just pray and ask the Lord to lead me in the right direction. Speaking of that, I'm off to start my novena to St. Therese.
Before I go, I just wanted to say that I loved Glee tonight (already downloaded 'Taking Chances' on iTunes.. LOVE her voice!) but why does the infertile woman always have to be nuts?!
Wednesday, September 23, 2009
Listening to my husband
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I love Mystery Diagnosis! The things those people have to go through is terrible, but I always admire them.
ReplyDeleteI think it's a good thing to exhaust every medical opportunity you can (within the bounds of religion, money, emotional health, etc).
When we set out to do this, I knew that I would never be able to live with myself if I didn't feel like I had tried everything I could. I knew it would be hard (I suspect I'm in the midst of miscarriage #3 now - but not yet confirmed), but I didn't want to put it to bed just because I was tired of it all and then wake up in my late 40s (or whenever) wishing I would have tried just one more thing. Regret is a horrible thing.
Again, that's me, but I just wanted to share my perspective as you guys seem to be in a place where you're not ready to "give up" on the conceiving dream(I hate that phrase "give up" and it isn't applicable here at all, but I can't think of another way to say what it is I'm thinking). Everyone has different limits and emotional thresholds. At one point, I even wanted to set an age limit, but my DH was against that. Now, I agree. I think I will know when it's time to throw in the towel. And it probably won't be a decision made in one minute, but over time. Once thought, prayer, and discussions convince me that I won't have that regret later.
I truly admire you, TCIE, & GIMH and others for taking a road to adoption. I honestly don't know if I could handle 2 roller coasters like that at once.
Sorry for the long comment. Prayers for you and Ryan tonight.
I think you are wise for listening to Ryan! Any combination of prayer, waiting, prayer, doctors, prayer, adoption and prayer is great! :) I also feel called to different paths on different days. I don't think anything is wrong with that. We are all trying to humbly submit to God's will... while at the same time do our part to fulfill the desires of our hearts to grow a family. We know that God can walk through a variety of different doors, so we're just trying to open all of them, right?
ReplyDeleteKeep me posted on how it goes with Dr. L and the sonograms and the HCG shot. You know that I had to be pushy to get it! We'll see if I can actually make it work this month.
xoxo
Husbands are usually the logical ones. Not to say that we aren't, but I think a lot of times we tell ourselves things or think things due to emotion and like you said, self preservation. I'm glad Ryan was able to reason this out- it sounds like there are a few more things you can try. I don't blame you at all for continuing until you exhaust all possibilities! While many of us probably will never get the answers we want to our mystery diagnosis, at least you'll know in your heart you tried everything. Praying for you, K...
ReplyDeleteSo interesting what you say about your experience with PPVI. I'm still technically a patient of Dr. H (not quite a full year post-op) and he's still prescribing a handful of drugs but I can't help but feel like he's already given up on me. I totally fell through the cracks with the T3 and stopped taking that this summer and now I feel like I've fallen through the cracks with Hydrocort.
ReplyDeleteI wish I didn't have such negative feelings towards him and PPVI in general after all the good they've done for other people, but I don't think they manage their long distance patients--or perhaps more specifically their long term IF patients?--very well.
Regardless, I think you would do well to follow your DH's lead on this. I really believe the Holy Spirit so often speaks to us through our husbands.
I will be praying for you. I know that it is hard to be patient. I have been ttc for over seven years now and I would never go to the Dr. for it. When I did go I was diagnosed with PCOS, not understanign then what that was I just didn't try to have anything done. My Gyn mentioned that I should go to an RE and it has taken me over a year to go and do that. So right now I am on clomid and prometrium. I know that after years and years its hard not to give up. We know that the Lord is able to do all things and if we let him lead and direct our lives He will never lead us in the wrong direction. Is there any other Dr. that you can go to besides the one you were talking about? The Lord can lead us through other people esp. our husbands and sometimes all we need to do is just follow. Please know I am really praying for you. Miracles can happen.
ReplyDeleteI think that because every woman responds differently to different drugs there is no way to say where you should throw in the towel. Tamoxifen is one drug, but there are a lot of other ones out there - some of which may be better than others for people with PCOS. The way that I've looked at it is that I don't know what's going to happen until we try something.
ReplyDeleteAnd there's nothing wrong with trusting Ryan and letting him be the voice. I don't think that it's part of being a submissive wife - I think that it's about being equal partners in the creation of a child. So many men feel like just the sperm donors in Infertility that it's nice to be able to say "today, I'm going to listen to what you want in this and accept your guidance."
I think you're doing the right thing by trusting him.
JMHO.
I'm so scared to watch Mystery Diagnosis!!! After my experience last week I think I could be on the show!
ReplyDeleteI'm glad that Ryan wants to be so proactive. Mr. JB really takes a back seat to what I want to do, but he does have 100% faith in the doctors that we are seeing.
I'm praying for you!
as if in infertility isn't hard enough, the decisions and the medication just add to it.
ReplyDeletei have wanted to be done with it all the past couple months, but i have to echo what ann says.. i know myself, and i know that i would regret not trying whatever i could (that we were comfortable with), always wondering "what if?"
the injections were hard on me the last cycle and i said i was done, but we had never added the progesterone, so here i am again.
looking forward to hear what each dr says as protocol for you next...
in the end, it is just getting to the point where you both can say you gave it all you had with no regrets. finding that time is just the hard part.
I am a Glee fan too! But, I have to say that everyone seems to be a bit wacky on the show! Ha!
ReplyDeleteIt sounds like you are very uncomfortable with PPVI and not confident in the care you received there. Go somewhere else. Or at least look into otehr clinics. There are so many options- no need to be the forgotten patient. If you do decide to stay with PPVI, I'd definitely (gently-so as not to piss off the staff) voice your concerns about the standard of care you received there. So important to feel you are in the best hands, especially if you're planning to move forward along the IF treatment line. Good luck :)
ReplyDeleteI admire enormously your openness in following Ryan's ideas. I have to admit, once I come up with some policy I can deal with on the next bit, I'm almost totally unwilling to reverse course. And I doubt if my DH would dare even make a suggestion as to what to do next - I tend to be a basket case whenever we're discussing the subject, and I upset him so much I've tried just to take care of things myself.
ReplyDeleteI appreciate your point about the tamoxifen-only treatment. Truth be told, when I have my next visit with Dr. L post-surgery, I'll want to know what further treatments are open to me, and whether there's an appreciable chance of success - and emphasize that my top priority at this point is to be free of treatment unless there is a really good reason to do more. Tamoxifen, surgery, charting, changing your diet, and taking medication for PCOS may sound like relatively little (not to a healthy person, they wouldn't), but I think that's pretty impressive already. Of course other IFers have done more, but...I applaud you for looking into more options and see whether there are things you'd be open to trying that might work. But I don't think we're *obliged* to keep doing treatments until we've exhausted the menu. In my (historically successful) paradigm of bargaining with God, since He can get me pregnant by force of will, and many treatment options (including just being in treatment) threaten the stability of my marriage and my faith, I think I have a sort of theological right to throw in the towel when the costs outweigh the benefits for me, and put the ball in His court (sorry for the mixed metaphor)if he wants me to have kids. Sovereignty entails responsibilities as well as rights!
I think you are wise to listen to your husband. There are many more options available to you for medical treatment. I would definately seek out a reproductive endocrinologist who is board-certified in that specialty. They have done a 3 year fellowship, after a OB/Gyn residency, dealing specifically with infertility issues. You can be clear about your religious preferences from the begininning-just bring a copy of the bishops' statements with you and tell them what you will and won't do. There are injectables, serial ultrasounds, other drugs besides tamoxifen (Have you heard of Letrozol, aka, Femara?), trigger shots, luteal progesterone-so many things they can do to optimize your chances each month. I don't know if you're against IUIs but when I looked into it, that was still in the "okay for now, still being decided" category. God can work through a doctor you may not have considered just because they're not at a "Catholic" clinic. Your example of faith may even be something the doctor can learn from. You have a couple of diagnoses (PCOS and endometriosis) that will make fertility a challange, but it's not impossible. You really need to see a specialist who is familiar with your diseases. Keep your faith but expand your medical options.
ReplyDeleteoh that's really disappointing about PPVI and feeling like you fell through the cracks. I would give them an honest evaluation, if you go back or not.
ReplyDeleteGo Ryan!!!!! :) I agree with the other ladies they are very much the voice of reason.... :)
ReplyDeleteI know my DH is...He makes a lot of sense! I'm emotionally driven all the time.... :) hahaha I didn't have to tell you that...hahaha
Glee was great, wasn't it?? I almost peed my pants when the football players did their dance!
ReplyDeleteMaybe you could be a long-distance patient of Dr G-T?? She already has some of your files... just a thought. She wouldn't make you go back on T3 if you were opposed to it, and she doesn't prescribe Tamoxifen ever. And the best part is, if you ever did want to go see her face-to-face, you could stay with ME!!
i must have commented on this post in my head haha, b/c it didn't end up on your blog!
ReplyDeleteI'm so glad you are able to listen to your husband... seriously, you both inspire me!
Just my 2 cents, but I think you should consider scheduling an appt. with Dr. Stegman in PA. I have seen 4 different doctors, all Catholic, and I have by far had the best standard of care with him. He seems to follow Dr. Hilgers very closely, but is easier to work with. For instance, you can do the month long hormone profile at your own lab instead of having to send it to Omaha. He will also let you work with local ultrasound techs if necessary. And he does monthly cycle reviews for free! Also, he gave me his email address and he always responds or has a nurse respond. I feel like I talk to his nurse at least once a week, but I have had some wacky stuff going on the past few months. As much as I love TFC, I really don't think they have the expertise needed in IF, especially more difficult cases like your own. A change would be good, even if just to get another opinion.
ReplyDeleteTucked - This is like the third time in the last week someone has suggested that, so maybe I should! You make some extremely good points. I think I'll call there after this cycle. Thanks!
ReplyDelete