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...
Showing posts with label tnfa. Show all posts
Showing posts with label tnfa. Show all posts
Monday, July 25, 2016
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...
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...
Tuesday, June 7, 2016
New plans
I had my followup with my doctor last week. We went over the upcoming plans that we will need to prepare for TTC again in July. Basically, with the LIT procedure being effective, my only real obstacle that I have left is the high TNFa. I need to get that number down below 30. I have already been able to drop it down from 61.5 to 37.1 with supplements which is amazing. My doctor was really impressed - but it's not quite there. So I will keep on the supplements - even adding a few more in the cocktail - and retest everything in 2 weeks to see if there is any more improvement.
If there is improvement - she will likely put me on intralipids to hopefully keep it down. However, she said the most effective thing to do to specifically target TNFa would be the IVIg. Which would suck because it's $2500 a shot. I feel I will have to do this regardless if it comes below 30 or not because inflammation can increase once pregnant and it can't come back up again. Sucks. '
It's all so scary. One little thing can go wrong and boom, it's all over again. I have allowed myself 6 months to mentally prepare myself again. I gave myself a lot of time to get my mind right. While also clearly doing things to hopefully prevent it from happening again. But the thought will forever my engraved in my mind that nothing is guaranteed, and that another miscarriage is still very real and very likely. But it cannot stop me from trying again. I will do everything I can to try and prevent it. But it's just a sad fact I have to face that it just might happen again.
Anyway, one step at a time. Right now, I am trying to eat better, exercise, and just live in the moment as best as I can. We will see where I am at in 2 weeks. From there, I will decide what the best course of action is. Baby steps. Yep. Baby steps to hopefully get baby steps one day. :)
If there is improvement - she will likely put me on intralipids to hopefully keep it down. However, she said the most effective thing to do to specifically target TNFa would be the IVIg. Which would suck because it's $2500 a shot. I feel I will have to do this regardless if it comes below 30 or not because inflammation can increase once pregnant and it can't come back up again. Sucks. '
It's all so scary. One little thing can go wrong and boom, it's all over again. I have allowed myself 6 months to mentally prepare myself again. I gave myself a lot of time to get my mind right. While also clearly doing things to hopefully prevent it from happening again. But the thought will forever my engraved in my mind that nothing is guaranteed, and that another miscarriage is still very real and very likely. But it cannot stop me from trying again. I will do everything I can to try and prevent it. But it's just a sad fact I have to face that it just might happen again.
Anyway, one step at a time. Right now, I am trying to eat better, exercise, and just live in the moment as best as I can. We will see where I am at in 2 weeks. From there, I will decide what the best course of action is. Baby steps. Yep. Baby steps to hopefully get baby steps one day. :)
Tuesday, May 31, 2016
Results!
Got some great news today! I received the results for my LIT treatment as well as my updated TNFa tests, and LIT worked!! My numbers look amazing!
LIT treatment before (top) and after (bottom)
Needless to say there have been some major improvements here. I will start with the LIT. The most important aspect of this test apparently are the B-Cells IgG. Specialists say they prefer this number to be above 50% and anything less than 30% can lead to miscarriages. Clearly, mine were insanely low at 1% before the LIT treatment. Which means my body wasn't producing any protective antibodies when pregnant to help protect the embryo from my insanely active immune system. So in turn, my body was attacking the embryo and viewing it as a foreign object. Now my numbers are 99.9% which means I have developed the antibodies needed to protect the embryo for future pregnancies! Amazing news!! You can see the test went from negative to positive! So I am naturally ecstatic over these results! Those trips to Canada were not for nothing and I am excited to see if this will really be the difference we needed!
TH1/TH2 (TNFa results) before (top) and afrer (bottom)
Now on to this other important test. As you can see my before numbers were off the charts high at 61.5%. They say anything above 40% can damage eggs and anything over 30% can cause miscarriage. So I have been taking the natural supplements (3 grams of omega daily, 1200mg of NAC daily, 100mg pine bark, and 600mg Reservatrol daily). I was on these supplements for probably a month before I retested and I am really happy to see that the tests came back much lower. Now it's still in the high zone...we need to get this below 30 before I can start trying again. But I feel now with neupogen or humira - that it will help get this down where it needs to be. I don't understand why my TNFa is so high to begin with. They say it can be flared by Rheumatoid Arthritis, Endometriosis, or Crohn's disease. I wouldn't be shocked if I had Endo. I have always had painful periods so it wouldn't surprise me. It also wouldn't shock me if I have Rheumatoid Arthritis. My mom has that so it very well could be inherited. Whatever it is, I am glad my body is responding well with the natural supplements. And hopefully more specific medication for this issue can knock it down under 30.
I have my followup with my doctor on June 2nd to go over everything. I want to begin trying again in July - so we have a month to get this all situated. But I am really optimistic for the future now and eager to see if everything works. I am still staying grounded because with my history - how could I not? Nothing is guaranteed and I can't expect that these will be my golden tickets to pregnancy. But I am so excited to finally be moving in a direction!! :)
LIT treatment before (top) and after (bottom)
Needless to say there have been some major improvements here. I will start with the LIT. The most important aspect of this test apparently are the B-Cells IgG. Specialists say they prefer this number to be above 50% and anything less than 30% can lead to miscarriages. Clearly, mine were insanely low at 1% before the LIT treatment. Which means my body wasn't producing any protective antibodies when pregnant to help protect the embryo from my insanely active immune system. So in turn, my body was attacking the embryo and viewing it as a foreign object. Now my numbers are 99.9% which means I have developed the antibodies needed to protect the embryo for future pregnancies! Amazing news!! You can see the test went from negative to positive! So I am naturally ecstatic over these results! Those trips to Canada were not for nothing and I am excited to see if this will really be the difference we needed!
TH1/TH2 (TNFa results) before (top) and afrer (bottom)
Now on to this other important test. As you can see my before numbers were off the charts high at 61.5%. They say anything above 40% can damage eggs and anything over 30% can cause miscarriage. So I have been taking the natural supplements (3 grams of omega daily, 1200mg of NAC daily, 100mg pine bark, and 600mg Reservatrol daily). I was on these supplements for probably a month before I retested and I am really happy to see that the tests came back much lower. Now it's still in the high zone...we need to get this below 30 before I can start trying again. But I feel now with neupogen or humira - that it will help get this down where it needs to be. I don't understand why my TNFa is so high to begin with. They say it can be flared by Rheumatoid Arthritis, Endometriosis, or Crohn's disease. I wouldn't be shocked if I had Endo. I have always had painful periods so it wouldn't surprise me. It also wouldn't shock me if I have Rheumatoid Arthritis. My mom has that so it very well could be inherited. Whatever it is, I am glad my body is responding well with the natural supplements. And hopefully more specific medication for this issue can knock it down under 30.
I have my followup with my doctor on June 2nd to go over everything. I want to begin trying again in July - so we have a month to get this all situated. But I am really optimistic for the future now and eager to see if everything works. I am still staying grounded because with my history - how could I not? Nothing is guaranteed and I can't expect that these will be my golden tickets to pregnancy. But I am so excited to finally be moving in a direction!! :)
Monday, May 16, 2016
And more changes
Things keep getting delayed but this time it's my doing. I have decided to start trying again in July. June just seems to rushed - and on top of that, we are going to be traveling to my Dads in Tennessee for the 4th of July, so I don't want to be in that crucial 1st week of pregnancy while traveling. There would be nothing more horrific than to miscarry again while on vacation. So it is just best to just be home during that time.
Sooooo since there is no longer any rush...I pushed back the retesting of the LAD and TNFa to May 23rd and have a follow up with my dr. on June 2nd. From there we will decide what next steps to take. I am also hoping that will allow enough time for these supplements to start taking effect in hopefully naturally lowering my TNFa. So we will see...
But yeah, I am feeling more comfortable with this plan of action now. As much as I am eager to start trying again...I just simply don't want to rush it, and I don't want to be traveling. After the 4th I am not going anywhere until September so that will be ideal.
So here is to a month of just relaxing and sorting it all out without rushing! :)
Sooooo since there is no longer any rush...I pushed back the retesting of the LAD and TNFa to May 23rd and have a follow up with my dr. on June 2nd. From there we will decide what next steps to take. I am also hoping that will allow enough time for these supplements to start taking effect in hopefully naturally lowering my TNFa. So we will see...
But yeah, I am feeling more comfortable with this plan of action now. As much as I am eager to start trying again...I just simply don't want to rush it, and I don't want to be traveling. After the 4th I am not going anywhere until September so that will be ideal.
So here is to a month of just relaxing and sorting it all out without rushing! :)
Friday, May 13, 2016
Retesting
So I got these supplements that I wanted to take for a bit to help bring down my TNFa, so I was going to push my retests back to the 24th of may to give them some time to maybe take effect in my system before I retested everything, but as it always goes - my doctor will be going on vacation the last week of may/first week of June...so now I need to stick with the original plan of testing on the 16th. Which kind of sucks because now I will not be able to tell if these pills are really benefiting me or not.
And I cannot wait til she comes back because if our plans are to try again in June - then I need to get all of this taken care of before I ovulate again around the 9th. Bummaz. I have been taking the supplements for a week now, so maybe they did SOMETHING to help bring it down. haha...doubtful. I just know I am going to have to take some risky ass shit like Humira or neupogen to get that level down and I really don't want to take those. They apparently give you a higher risk of developing cancer later on because it messes with your bone marrow. Not something you should really f$ck with if you ask my humble opinion.
I am trying to not stress, I am working out, I am attempting to eat better (still have lots of work to do on that lol) and I have been OD'ing on vitamins and supplements especially Omega 3 which I am hoping will help lower my TNFa as well. I am also EXTREMELY nervous to see if the LIT worked or not. But again, trying not to stress or worry - because those things trigger my TNFa as well. Man I can't do anything these days!!!
Well I am just going to have to have the mentality of "whatever will be will be" because as much as I am trying to control this situation...there is only so much I can do. If my body is just simply not on board with all of this...I can't change that. So I have to learn to go with the flow and accept the outcomes as they come. (Again...so much easier said than done). But I'm tryin!
So monday will come. I will retest. Then a weeks agony of waiting for the results and harassing my nurses for them, then my appt with my dr to see where we stand. As always, will keep you updated! :)
And I cannot wait til she comes back because if our plans are to try again in June - then I need to get all of this taken care of before I ovulate again around the 9th. Bummaz. I have been taking the supplements for a week now, so maybe they did SOMETHING to help bring it down. haha...doubtful. I just know I am going to have to take some risky ass shit like Humira or neupogen to get that level down and I really don't want to take those. They apparently give you a higher risk of developing cancer later on because it messes with your bone marrow. Not something you should really f$ck with if you ask my humble opinion.
I am trying to not stress, I am working out, I am attempting to eat better (still have lots of work to do on that lol) and I have been OD'ing on vitamins and supplements especially Omega 3 which I am hoping will help lower my TNFa as well. I am also EXTREMELY nervous to see if the LIT worked or not. But again, trying not to stress or worry - because those things trigger my TNFa as well. Man I can't do anything these days!!!
Well I am just going to have to have the mentality of "whatever will be will be" because as much as I am trying to control this situation...there is only so much I can do. If my body is just simply not on board with all of this...I can't change that. So I have to learn to go with the flow and accept the outcomes as they come. (Again...so much easier said than done). But I'm tryin!
So monday will come. I will retest. Then a weeks agony of waiting for the results and harassing my nurses for them, then my appt with my dr to see where we stand. As always, will keep you updated! :)
Subscribe to:
Posts (Atom)