Well, August is off. It is now being pushed to September! I know, sucks!! But my doctor thinks it's best I wait a month from surgery before trying again. She wants me to allow my body to heal and two weeks after surgery to try again just isn't enough time. I agree, reluctantly.
So with another month to sit around, I have decided to become super proactive to gain a prescription for hydroxychloroquine. That drug that seems to be all the rage in the UK and around the world in helping women bring down their TNF levels. Yet my doctor seems to be completely tunnel visioned on what she wants to do to bring it down, and won't think outside of the box. So looks like I am going to have to for her., I have written my primary care doctor about it, and have made a pretty solid case as to why he should prescribe it to me. He is going to look into it and get back to me on Monday.
Regardless if he decides to prescribe it to me or not, at least he is taking the time to research it and consider it for me. My fertility doctor just shut it down without a second thought which really pisses me off, as I have stated in previous posts. It takes a simple google search. She would rather put me through a treatment plan that my insurance won't cover, and will cost thousands of dollars, vs investigating a drug that my insurance WILL cover and will cost me maybe $10! The drug has stated it has hardly any side effects, is FDA Approved and is even safe to take during pregnancy. So WHAT is the big deal?! Oh let me just answer: it's cheap, and they won't make money off of me. That's why.
So I am praying my primary care doctor - who this really doesn't effect one way or another - will give me the prescription so I can just try it for a month and see. If my levels don't go down in a month of taking it - then I will stop. But I just want to try!!! If he doesn't prescribe it - then I will make an appt with a rheumatoid doctor and try and get it that way. I don't care how many doors I need to knock on. I am determined to get this because from what I have researched and read, it seems to really work for some! I am willing to try anything at this point! GIVE ME THE DRUGS!!! hahaha
I will keep you posted on my mission. I am not going down without a fight. And I am REALLY considering finding another fertility specialist. It just sucks when you have been dealing with someone for a year, to up and start over with another. But I am reaching that point. I need to find someone who will listen. That is key in a situation like this.
Thursday, July 28, 2016
Monday, July 25, 2016
Post surgery
The surgery is done and boy and boy am I in pain! There is good news and bad news. I guess both is good news if you are a half glass full kind of person. I'm not. haha! The good news is that I don't have endometriosis. The bad news, is that I don't have endometriosis. I know what you're thinking....huh?! Let me explain. The point of this surgery was to find an explanation as to why my TNF is high. I was certain it had to be endometriosis. I had all of the symptoms of it and it would be an inflammation disorder which would explain so much. But it's just not the case. They did find one small little patch of discoloration tissue which he went ahead and took a biopsy of. But it wouldn't be enough to trigger this issue. And he had to reaaaallllly look for it, he said. His exact words were "everything in there looks pristine!" which is great! But wtf am I having miscarriages?! Why is my immune system being crazy if it's not endo?!?
So basically, I am still left with no answers. Well, not true - I do have one answer...I know now it's not endo that is causing my TNF. So I can cross it off the list. And I do know now that I have truly looked into everything I can look at to figure this whole thing out. So if I go on to still miscarry - I know I have done all I could to prevent it so far.
Where does that leave me from here? Well, I will go on to have my period this week (if it's not too messed up from surgery) and then I will go in to get my TNF levels retested. I will then decide if I need to do the IVIg and steroid treatment. My husband and I were talking, and this may seem a little wreckless, but we may just want to try again and see if the LIT would be enough to sustain the pregnancy. Either way, we are trying again in August. I have decided that I am going to go ahead regardless. I don't have much time to waste since the LIT is time crunching. And I don't want that to be for nothing.
I will keep you updated on the progress of this month and how it all will unfold. I am bracing myself for whatever will come out of it. Whether good or bad. I know the realities and statistics and I am prepared. But I have to keep trying.
On a side note - I have to give a shout out to my amazing husband. You never really know love until you experience someone who does anything and everything they can to help you in your time of need. I know it's what they are supposed to do. But I have never had any man be there for me the way he has. From just making me food, to helping me use the bathroom. He goes above and beyond anytime without any gripes. I am truly fortunate to have someone like him. He's quite special.
Ok that is enough for now. This upcoming month should get interesting. So stay tuned...
So basically, I am still left with no answers. Well, not true - I do have one answer...I know now it's not endo that is causing my TNF. So I can cross it off the list. And I do know now that I have truly looked into everything I can look at to figure this whole thing out. So if I go on to still miscarry - I know I have done all I could to prevent it so far.
Where does that leave me from here? Well, I will go on to have my period this week (if it's not too messed up from surgery) and then I will go in to get my TNF levels retested. I will then decide if I need to do the IVIg and steroid treatment. My husband and I were talking, and this may seem a little wreckless, but we may just want to try again and see if the LIT would be enough to sustain the pregnancy. Either way, we are trying again in August. I have decided that I am going to go ahead regardless. I don't have much time to waste since the LIT is time crunching. And I don't want that to be for nothing.
I will keep you updated on the progress of this month and how it all will unfold. I am bracing myself for whatever will come out of it. Whether good or bad. I know the realities and statistics and I am prepared. But I have to keep trying.
On a side note - I have to give a shout out to my amazing husband. You never really know love until you experience someone who does anything and everything they can to help you in your time of need. I know it's what they are supposed to do. But I have never had any man be there for me the way he has. From just making me food, to helping me use the bathroom. He goes above and beyond anytime without any gripes. I am truly fortunate to have someone like him. He's quite special.
Ok that is enough for now. This upcoming month should get interesting. So stay tuned...
Thursday, July 7, 2016
July 21st
Well - I got the call from the schedule coordinator for the Endometriosis surgery and turns out, they got me in for July 21st! Which means, this will get done before my next period - which means, we can possibly try again in August!! It's great and terrible timing all in one - because that is the week my sister and her family are coming to visit! But, she understands and we just have to throw a quick surgery into the plans. lol
It will be interesting what they find out. It's good both ways I guess. It's good if I do have endo - because that may give me a reason for my high tnfa and perhaps control it. But it's good if I don't have it - because, well, yay I don't have endo! One less thing! lol. So either way, I am going to be ok. I will either treat it, or I won't have to worry about it.
Thing that sucks is - if I don't have it - then bring on the expensive drugs. Yikes. Not looking forward to that expense. I will retest my TNFa a week or so after my surgery to see if that made any effect. Wish I could wait a bit longer to retest - but my period will be coming shortly after so I need this all squared away so I can prep for August. What a fiasco I tell ya. Everyday it's something different. A bumpy, twirly, up and down roller coaster that doesn't seem to end.
Well, let's see what they discover...stay tuned...
It will be interesting what they find out. It's good both ways I guess. It's good if I do have endo - because that may give me a reason for my high tnfa and perhaps control it. But it's good if I don't have it - because, well, yay I don't have endo! One less thing! lol. So either way, I am going to be ok. I will either treat it, or I won't have to worry about it.
Thing that sucks is - if I don't have it - then bring on the expensive drugs. Yikes. Not looking forward to that expense. I will retest my TNFa a week or so after my surgery to see if that made any effect. Wish I could wait a bit longer to retest - but my period will be coming shortly after so I need this all squared away so I can prep for August. What a fiasco I tell ya. Everyday it's something different. A bumpy, twirly, up and down roller coaster that doesn't seem to end.
Well, let's see what they discover...stay tuned...
Wednesday, July 6, 2016
Frustrated
I went to a doctor for a consultation to see if he could do the surgical laproscopic procedure to see if I have endo or not. I waited almost a month for the consult and now I have found out that they cannot schedule me in until another month (August). Which means I won't be able to try again until Sept. if it all works out. That will be 5 months with LIT and it only lasts about 9 months in your system. Ugh. I don't know what to do. Should I risk trying again and suppressing the TNF - or should I just wait until August to see if this is even an issue?! I'm so sick of waiting!!!! Just more crap upon crap. BLAH.
Tuesday, June 28, 2016
Follow up
I had a followup with my doctor today regarding the results. It seems my NKCells look decent - but TNFa is 41.5 (which I had it wrong by typing 45.7 in the last post). Regardless, still high. My AMH levels came back a little weird too. They came back at 10.45 which is really high for someone my age. The last time I got tested for AMH last year in Sept it was 3.71 which is normal...so I have no clue how or why it bounced to 10.45! But from what I read - it could be an indicator of PCOS. Which I haven't been diagnosed with ever and don't think I have. I have regular periods, and ovulate regularly. So it's a little weird to me. My doctor thought it was an excellent number - which made me scratch my head since I am 37 with an AMH that bounced to a number that perhaps an early teenager would have. I am sure my doctor is sick of my constantly questioning things - but I don't care. This is my body and if I want to know more - or have more questions...I'm going to ask. I am not shy and the way I see it - is she is working for me. I am paying for her services. So I don't care if I am a bug-a-boo when it comes to my health.
Anyway, my doctor. That is another story. I like her, she is really nice...but sometimes I feel that she isn't that clued in. There is this drug that is commonly used in the UK that has proven to help bring down TNFa significantly. And I asked her about it at my appt today. She heard of it but never used it or prescribed it before. So when I got back to work - I saw that it is avail in the US and the price of it isn't that much. I wrote to her to see if it's something we could try and she shot it down. Stating that she was unfamiliar with it and doesn't want to prescribe something she is unfamiliar with. Ok, that's respectable. I get that. BUT. Here is my issue. If something is commonly used amongst reproductive immunologists around the globe and has proven to work - and it's available here. Wouldn't you, as a doctor, do some research on the drug. Find out more about it and perhaps see if it could be helpful to your practice? She just shot it down because she didn't know much about it. But this could be a cure for me! LEARN about it - and then if you feel it's too risky - deny it. But don't just shut it down and remain naive.
Ugh. It's really frustrating when I am doing basically homework to figure all of this out for myself, but I can only go so far with it because another person who could help - doesn't care to do any research to help. Sometimes I wish I could find a new Dr. but there are very few in the area - and I don't want to go down another long twisted road when I have already gone so far with this one.
Anyway, so I have to now go to a consultation tomorrow with a Dr. to discuss Endometriosis laproscopy. I am nervous for that. I don't feel comfortable with someone poking around in that area. But I guess it needs to be done so I will do what I have to do. So we will see how long it will take for me to even get an appt for the procedure. Shit, the consultation took 3 weeks to get! Very annoying.
So July clearly is a bust for trying again. Doubt August will be in the cards too if I don't get this surgery done right away. But I am glad that perhaps I am doing something to maybe nip this TNFa shit in the ass. Because if this can cure it - everything else should be quick to follow. But if it's not the issue...I am up a long hill battle. I will post more tomorrow when I wrap up with the Dr.
Stay tuned...
Anyway, my doctor. That is another story. I like her, she is really nice...but sometimes I feel that she isn't that clued in. There is this drug that is commonly used in the UK that has proven to help bring down TNFa significantly. And I asked her about it at my appt today. She heard of it but never used it or prescribed it before. So when I got back to work - I saw that it is avail in the US and the price of it isn't that much. I wrote to her to see if it's something we could try and she shot it down. Stating that she was unfamiliar with it and doesn't want to prescribe something she is unfamiliar with. Ok, that's respectable. I get that. BUT. Here is my issue. If something is commonly used amongst reproductive immunologists around the globe and has proven to work - and it's available here. Wouldn't you, as a doctor, do some research on the drug. Find out more about it and perhaps see if it could be helpful to your practice? She just shot it down because she didn't know much about it. But this could be a cure for me! LEARN about it - and then if you feel it's too risky - deny it. But don't just shut it down and remain naive.
Ugh. It's really frustrating when I am doing basically homework to figure all of this out for myself, but I can only go so far with it because another person who could help - doesn't care to do any research to help. Sometimes I wish I could find a new Dr. but there are very few in the area - and I don't want to go down another long twisted road when I have already gone so far with this one.
Anyway, so I have to now go to a consultation tomorrow with a Dr. to discuss Endometriosis laproscopy. I am nervous for that. I don't feel comfortable with someone poking around in that area. But I guess it needs to be done so I will do what I have to do. So we will see how long it will take for me to even get an appt for the procedure. Shit, the consultation took 3 weeks to get! Very annoying.
So July clearly is a bust for trying again. Doubt August will be in the cards too if I don't get this surgery done right away. But I am glad that perhaps I am doing something to maybe nip this TNFa shit in the ass. Because if this can cure it - everything else should be quick to follow. But if it's not the issue...I am up a long hill battle. I will post more tomorrow when I wrap up with the Dr.
Stay tuned...
Friday, June 24, 2016
Bad news.
Well not even 5 minutes after writing the last post, I got some results back. And it's not good. My TNFa came back at 45.7 which is up from 37.1. Not good. Anything over 40 can damage egg quality they say. Clearly I am beyond disappointed. I really wanted to try again in July and now that has completely gone to shit. This has been the most frustrating ordeal I have ever experienced.
I definitely am keeping the consultation for the Endometriosis laproscopy to see if that is what is causing the issues. I pray it is - because then I will finally have a reason. Because I am baffled as to why this is so high. It really sucks. So now, depending on when they will even schedule me in for the surgery - things are starting to get pushed back into the Aug/Sept timeframe. Which makes it 4-5 months since the LIT treatment which only lasts in your system for 9 months. Clearly time is an issue here.
I feel like I have been gut punched. I feel like any hope to having my own child is just getting to be a dream that will never come true. I get so angry that so many women can get pregnant and enjoy their pregnancies. But I will NEVER get to have that. Even if I do get/remain pregnant - I will never enjoy it. Those entire 9 months will be lived in pure fear and worry. I won't get to joke about "no more after this!" or "This one was an accident" or even get to decide "we were only going to have one, but now we might go for another". I will be lucky if I get one.
I am sorry. I am having a pity party for myself, and just downright sad. I am just so beat up. You can only be kicked so many times before you can no longer pick yourself up off the ground. I'm tired of getting up. I'm just so sick of it all.
But I will pick myself up this time. And I will keep going. I have a little fight in me still, and I am going to do this for me and my husband. I cannot give up now, I have gone way too far. So I will just keep on doing what I need to do. Hopefully, someday, it will work out.
I definitely am keeping the consultation for the Endometriosis laproscopy to see if that is what is causing the issues. I pray it is - because then I will finally have a reason. Because I am baffled as to why this is so high. It really sucks. So now, depending on when they will even schedule me in for the surgery - things are starting to get pushed back into the Aug/Sept timeframe. Which makes it 4-5 months since the LIT treatment which only lasts in your system for 9 months. Clearly time is an issue here.
I feel like I have been gut punched. I feel like any hope to having my own child is just getting to be a dream that will never come true. I get so angry that so many women can get pregnant and enjoy their pregnancies. But I will NEVER get to have that. Even if I do get/remain pregnant - I will never enjoy it. Those entire 9 months will be lived in pure fear and worry. I won't get to joke about "no more after this!" or "This one was an accident" or even get to decide "we were only going to have one, but now we might go for another". I will be lucky if I get one.
I am sorry. I am having a pity party for myself, and just downright sad. I am just so beat up. You can only be kicked so many times before you can no longer pick yourself up off the ground. I'm tired of getting up. I'm just so sick of it all.
But I will pick myself up this time. And I will keep going. I have a little fight in me still, and I am going to do this for me and my husband. I cannot give up now, I have gone way too far. So I will just keep on doing what I need to do. Hopefully, someday, it will work out.
Reproductive Immunology
I stumbled upon this very interesting website regarding Reproductive Immunology. It's really informative because it describes exactly what everything is, and describes the treatments for each immune issue. For anyone who is reading this and thinking I am speaking a foreign language when I talk about immune issues or anyone who is actually GOING through immune testing...I highly suggest you read it. I have a lot of these issues and I talk about them often on here!
http://www.immunologysupport.com/treatments.html
P.S. Hopefully will get my results back today or Monday the latest! I moved my follow up with my Dr. to Tues the 28th! I am still keeping the consultation with the other doctor regarding Endometriosis - because if that is something I want to look into the future - then at least I got the consultation part out of the way, ya know?
Anyway - stay tuned for hopefully good news!
http://www.immunologysupport.com/treatments.html
P.S. Hopefully will get my results back today or Monday the latest! I moved my follow up with my Dr. to Tues the 28th! I am still keeping the consultation with the other doctor regarding Endometriosis - because if that is something I want to look into the future - then at least I got the consultation part out of the way, ya know?
Anyway - stay tuned for hopefully good news!
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