tag:blogger.com,1999:blog-87714262346619273812023-11-15T07:28:14.669-08:00This gene is a MTHFRShawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-8771426234661927381.post-9776423402395315172012-09-10T15:34:00.002-07:002012-09-10T15:35:27.190-07:00A new chapter of (what I hope is) a wonderful new bookJune 13th- Interview with dream job.<br />
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June 14th- We brought home a 6 week old German Shepherd pup, who didn't sleep all night long. Got offered said dream job.<br />
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June 15th- BFP pregnancy test! <br />
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June 15th- later in the day. Results from first HCG quant...24. The nurse called to tell me it the numbers weren't were they wanted them to be and "not to get my hopes up". As if I needed anyone to tell me that!! I promptly called back and screamed at her. Besides that fact that 24 is a perfectly acceptable number for someone who is as early as I was! Geesh!<br />
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June 22nd- 1st ultrasound. All they could see was an empty sac. The doctor told me to "keep my fingers and toes crossed" and then he told me to come back the following week for another scan. I said "no". No. No. No. I wasn't going to do this again. The coming in every week and watching for the slow or no development only for it to be determined at 8-9 weeks that it was "viable". No. I told him I will see you in 3 weeks. By then we will know what is what. I can't deal with all of these scans and appointments. <br />
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July 10th- 2nd ultrasound. Hal went with me. We were bracing for the news when....we saw something that looked like a baby and what looked like a flicker in the middle of it. The doctor said 'and there's the heartbeat'! A HEARTBEAT! Hooray!! Yippee!!!<br />
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September 10th- Feeling great. 16 weeks pregnant. No complaints. Just keeping our fingers and toes crossed and praying each night for a healthy little one. It still doesn't seem real...I am so so thrilled that it is!! Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com1tag:blogger.com,1999:blog-8771426234661927381.post-27206175542566956502012-09-10T14:27:00.004-07:002012-09-10T14:27:38.317-07:00Overdue UpdateWe did end up heading to Chicago and seeing Dr. Kwak-Kim...yes a specialist named Dr. Quack...how perfect. Lol. <div>
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She took about 40 vials of blood (not an overestimate) and did a through record review and other testing. </div>
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All-in-all...she couldn't really find any glaring reasons for the repeated losses. She did believe that my thyroiditis was caused by an auto-immune response and felt that this could possibly be related to the early losses. She felt that overall it was a negative auto-immune response to the pregnancy that was causing the difficulties. She recommended following a similar protocol to the one that I was already on and then adding IVIG infusions ($3000 a shot x about 20!!!) Or steroids. </div>
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We put things on the back burner..ended up moving to Michigan.</div>
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I had to find all new doctors...yippee! </div>
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I discussed the above with 2 specialists. Neither agreed that the IVIG or steroid were a great course of action for me. IVIG is very pricey, with no known benefits and a long-term steroid has many risks. </div>
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The plan....stay on same course and hope for better results. </div>
Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com0tag:blogger.com,1999:blog-8771426234661927381.post-67017548012475071642011-04-20T06:39:00.000-07:002011-04-20T06:50:21.009-07:00Abnormal XY +6In a follow-up meeting with the reproductive endocrinologist last week, we got the results of the genetic analysis of the "products of conception" from the d&c. <div><br /></div><div>It showed a trisomy of the 6th chromosome, which is "incompatible with life". </div><div><br /></div><div>I am thankful that, for at least one of these miscarriages, we now have a documented reason for it. It is a bit frustrating though to throw another variable into this mess. It is also a bit hard to know the sex of the baby. That makes it seem a bit more real, not sure that is the best way to describe it. </div><div><br /></div><div>The next step is for Hal to have a genetic karotype done. I have been fighting with the insurance companies for over a year to get them to cover this, they have finally agreed. They kept denying it saying that "recurrent pregnancy loss" cannot be a male diagnostic code. I have gone round and round with them. FINALLY, I spent about 2 hours on the phone with a lady and I googled ICD-9 codes to see which ones they would accept with that particular procedure code. It was ridiculous, but apparently the magic diagnostic words are "male infertility-otherwise unspecified". Same thing..right?? Stupid insurance companies. And why couldn't my doctor's office be more helpful? Stupid doctors. Oh well. It is being covered now.</div><div><br /></div><div>Also, we are headed to Chicago for Memorial Day weekend to meet with a Reproductive Immunologist. She is supposedly one of the best in the country. Her name is Dr. Kwak....which makes me laugh. I am literally going to see a Kwak. Hahaha. Too perfect. </div>Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com0tag:blogger.com,1999:blog-8771426234661927381.post-5309155192783674062011-03-11T10:04:00.000-08:002011-03-11T10:21:55.072-08:00"Off, but still connected"Surgery is over. Feeling better emotionally and physically today. <div><br /></div><div>I arrived at the hospital only to be directed to 4 different desks for check-in. At one point a lady actually told me to "go to Operating room 7". Um.....don't I need to register and get an IV before I just knock on the OR door?? </div><div><br /></div><div>Finally I ended up on the Maternity ward. Really? Who thought that was a good idea? To put a woman going through a miscarriage on the floor with a bunch of women in labor and new moms?? Unacceptable. I immediately asked for a private room away from all of that. How insensitive! They moved me away from that floor where they said I would be "off, but still connected". I laughed and said, that is exactly the way I feel. </div><div><br /></div><div>Then the fun of starting an iv began. They tried 9 times, 4 different staff members (including the anesthesiologist) and over 70 minutes to start the iv!! 9 times! You should see my arms. During the 5th or 6th attempt the women came in to draw blood for my labs. During them painfully sticking me in my other arm, she asks for me to straighten my other arm so she can draw my blood. I literally snapped. I screamed at her. "NO WAY! You will wait!" </div><div><br /></div><div>After they got the iv going. The anesthesiologist begins to ask about my medical history. At one point he asks me "is there any chance you could be pregnant". I looked at him like he had 6 heads. "Ummm..yeah". That is kind of why I am here...a-hole! Really?! Did you even glance at my chart or look at what type of procedure I am having? At this point, my confidence level is 0. </div><div>After that..things went smoothly. Not much pain. Feeling more sane today. Feeling bad for another friend who is going through her 3 miscarriage. As tough as it is to hear about others becoming pregnant, it doesn't make it any easier to hear about other people having difficulties. That is worse. It shouldn't be so hard for good people to have babies! While people whom are terrible parents have no problems. Doesn't seem fair. Oh well. I am just thankful for the health of my family and for my Jackson. </div><div><br /></div><div>I am thinking that I might forgo further interventions from Western medicine, save my money and buy a flight back to the Amazon. I am pretty sure that swimming with the mystical pink river dolphins is more promising. It is definitely becoming more clear that Jax is going to be the next tribal leader. Haha. </div><div>http://dolphinworld.users.50megs.com/pinkdolphin.html (See paragraph 4).</div>Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com0tag:blogger.com,1999:blog-8771426234661927381.post-10583011268048970872011-03-07T17:18:00.000-08:002011-03-07T17:24:46.112-08:00SurgeryMet with the doctors again for a final ultrasound to "confirm". No change. D&C will be later this week. <div><br /></div><div>I am angry this time. I have so many unanswered questions. It is infuriating. The doctors have no answers. They blame it on the MTHFR....but I don't know. I have been doing some research about the H-Y antigen....my doctor (the "expert") was not familiar with the research. There is an experimental treatment, I am not really sure what it entails. Might have to call the University of Chicago to ask some questions since they are leading the research. Might be grasping at straws. I certainly don't have the energy to pursue this at the moment. </div><div><br /></div><div>The doctors say that we have a "reasonable" chance of having a healthy pregnancy. He says that we have have 20% chance. I am not sure if I think that is "reasonable". It sounds like pretty crappy odds to me. </div><div><br /></div><div><br /></div>Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com1tag:blogger.com,1999:blog-8771426234661927381.post-38553763542636965352011-03-02T06:17:00.000-08:002011-03-03T15:49:22.401-08:00Again.<div>***For obvious reasons, I did not post this until I was ready.</div><div><br /></div>February 11, 2011: I am pregnant. I am happy, scared, anxious and just about every other emotion that one can experience. FOUR of my good friends also found out they were expecting in the last 2 weeks....this excites and terrifies me. <div><br /><div>February 23, 2011: I had my first u/s today to determine "placement" at 5 weeks all looks good. The baby is in the uterus, there is a gestational sac. That is all they could see. I haven't told anyone this time. I literally can not bring myself to tell anyone. There have been a few times where I have tried to tell someone and my mouth will not obey my brain. </div></div><div><br /></div><div>March 2,2011: Tomorrow is my follow-up u/s. I am so scared. I truly feel that this pregnancy is different and that tomorrow I am going to see the tiny flicker of a heartbeat. That feeling also terrifies me, because what if I am wrong?? Jackson has no idea that I am pregnant, but he keeps asking me when he is going to get a brother or a sister. I told him that was up to God and he said that he hopes God hurries up.I wish that people would stop complaining about their current pregnancies. I can barely read some fb posts or talk to others on the phone. I don't care about how tired you feel, how many times you threw up, etc ...BE THANKFUL!! I welcome my nausea! I am pregnant! Praying for good results tomorrow. PLEASE GOD.</div><div><br /></div><div>March 3,2011: No heartbeat. Impeding miscarriage. Non-viable pregnancy. Spontaneous abortion. All terms to mean the same thing....no baby. Crushed...again.</div>Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com0tag:blogger.com,1999:blog-8771426234661927381.post-31000397655695153452010-08-25T07:02:00.000-07:002010-08-25T19:00:26.822-07:00"That's weird".....<div>Let's put this on the list of things that you DO NOT want to hear from Doctor....especially when in stirrups.</div><div><br /></div>Another surgery. Yes folks, another surgery. I have been spotting/bleeding since May. The doctor had said that I could bleed for a few weeks, but I thought this was excessive. I made an appointment. Yesterday they did a water ultrasound (doesn't sound bad...but IT SUCKED) and they determined that I have a large uterine polyp. The polyp is either a normal polyp, placental tissue that is still growing or a tumor. Surgery to remove it scheduled for next week. Ugh.<div><br /></div><div><br /></div>Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com1tag:blogger.com,1999:blog-8771426234661927381.post-44144803647459924882010-06-17T13:02:00.000-07:002010-06-17T18:13:44.978-07:00Roller coaster sized drop!Met with the oncologist again today. There was a HUGE drop in my HCG! Yippeee! I am now at 3700, which is a significant improvement. I don't need to meet with him again. I have never been so excited to have someone leave my life (and I told him that..lol). <br /><br />My OB can follow me now. I still have to have weekly blood work to make sure it goes to negative, but this is amazing news. I honestly think it is divine intervention. <br /><br />They didn't even tell me this was a possibility two weeks ago. The best and craziest news is that he said today that they do NOT believe it was ever a molar pregnancy...just a normal miscarriage behaving like a mole. Amazing news. Believing in the power of prayer!Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com4tag:blogger.com,1999:blog-8771426234661927381.post-62649354260853634312010-06-11T19:53:00.000-07:002010-06-11T19:53:56.100-07:00Good-ish newsYesterday I met with the oncologist for the follow-up appointment. It was encouraging and confusing all at the same time. The pathology report DOES NOT suggest a molar pregnancy, although it can not be completely ruled out. My HCG levels have gone down slightly...which we are hoping is a good sign. Won't really know what all of this means until next weeks appointment. More waiting and seeing. My favorite. At this point, I am clinging to the GREAT news that I am not starting chemo this week and maybe not ever (please God!). So...keep the prayers and good thoughts coming my way. I think they are paying off!Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com1tag:blogger.com,1999:blog-8771426234661927381.post-87810792596050089792010-06-05T13:41:00.000-07:002010-06-05T13:44:17.078-07:00The waiting game....Met with the oncologist yesterday. He is waiting for some more test results and the pathology report to come back. We meet again on Thursday to discuss "options". We'll see. Right now, I am hoping it was a lab error. I realize the likelihood of this isn't great, but hey....it is getting me through the weekend. <br /><br />My friends and family have been awesome this week. Thanks for all the phone calls/emails/texts/cards. You all rock. Thank you. I am blessed.Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com1tag:blogger.com,1999:blog-8771426234661927381.post-77697732221331103602010-06-04T05:31:00.000-07:002010-06-04T05:34:50.515-07:00Levels on the rise...AGAINWell, I had the second d&c and all seemed to go well. I have still been having the pregnancy symptoms, but it seemed that everything was ok. Until yesterday. My hcg is back up to 18000. Today I have to drive to Cleveland and meet with my doctor and the oncologist. This is a doctor that I was never hoping to have to meet. We will talk about my "options".Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com0tag:blogger.com,1999:blog-8771426234661927381.post-85617685036141259042010-05-25T18:05:00.000-07:002010-05-25T18:15:47.339-07:00Surgery: Take 2Had the d&c on Saturday. I seemed to be doing ok over the weekend.<br /><br />Yesterday though, I started "feeling pregnant" again. I have been pregnant enough to recognize the signs and symptoms by now. Mine first symptom is always heart palpitations. I know, it sounds crazy, but it is my first sign. <br /><br />So, yesterday I called the doctor to try to explain this to her. She thought I was a total nut job. I asked her to humor me and order another HCG quant. She reluctantly agreed after suggesting that I see my primary care doctor about the palpitations (I am sure she thought about suggesting a psych consult too). I said, "the best it is going to prove is that I am crazy, the worst it will prove is that I am right".<br /><br />Sure enough, I was right. After the d&c my levels have doubled AGAIN! They called me this morning with the results and told me to head to Cleveland asap for "more testing". She gently suggested that this could be the molar cells and that chemo may be the next option.<br /><br />I, of coarse, freak out. I called Hal. We drove together up to the hospital. I met with 2 doctors. They immediately repeated the ultrasound. Where they promptly discovered that my uterus has a septum and at the top is neatly divided into 2 halves. The d&c on Saturday removed the "products of conception" from the left side, but not the right. How they have not noticed this on the 100 ultrasounds I have had previously....I have no idea.<br /><br />Tomorrow I get to go and have ANOTHER d&c.<br /><br />I actually left the doctor's office happy and in great spirits though. I never thought I would be excited about a botched medical procedure, but it sure beats chemo!Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com3tag:blogger.com,1999:blog-8771426234661927381.post-88604693184703620142010-05-23T07:46:00.000-07:002010-05-23T07:49:37.655-07:00Post-opSurgery went "as well as could be expected". I am feeling ok today. Feeling grateful for my friends and family. Lots of love flowing our way.<br /><br />Won't find out the details of the pathology report for about 10 days. So, for now. I sit and count my blessings, which are many.Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com0tag:blogger.com,1999:blog-8771426234661927381.post-32159213197043396072010-05-20T16:06:00.000-07:002010-05-21T08:22:48.604-07:00Damn the moles!Well....my levels doubled again. They called me in for a repeat u/s today. Turns out I have another molar pregnancy, this one is a complete molar pregnancy. I am devastated. Just crushed. D&c scheduled for Saturday.<br /><br />They did a chest xray and a boat load of blood work today to try to make sure that the molar cells haven't spread. These cells can cause metastatic cancer. They are not sure if this molar pregnancy was a new pregnancy or whether it was my previous miscarriage regrowing (this would be really bad). After the d&c I will need weekly blood work down until my HCG levels reach zero and then I will need monthly labs after that for the next year. All I can do now is pray (and ask others to pray) that my levels drop quickly and that they don't regrow. If they do, I will have to have chemo. I don't want chemo.<br /><br />Apparently now my odds of having another molar pregnancy are now 1 in 4. Molar pregnancies are completely unrelated to MTHFR, so this is just something else to battle against.Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com1tag:blogger.com,1999:blog-8771426234661927381.post-47073428749588744782010-05-18T17:06:00.001-07:002010-05-18T18:13:43.233-07:00No "evidence"I went to the doctors yesterday for the ultrasound. They could not find "evidence" of a pregnancy, which is a problem when you are 5.5- 6 weeks pregnant. I left the ultrasound devastated and assumed I had already miscarried. The doctor wanted to follow up with some blood work to make sure my HCG levels were dropping. <br /><br />4 hours later the doctor calls and says that my HCG levels are continuing to rise, as they would in a healthy pregnancy. My HCG levels are now over 8000!!! One of three things is happening #1) the most likely, I am miscarrying and my body hasn't figured it out yet 2) it is an ectopic pregnancy and they haven't been able to find it yet 3) I am pregnant but not as far along as I think. <br /><br />This last option KILLS me because it gives me a shred of hope. Hope is dangerous. Logically, I know that I have been through this 3 times already. I know what happens. But that damned hope. <br /><br />"Hope is the worst of all evils, for it prolongs the torment of man" -Friedrich Nietzsche<br /><br />So now I get to play my favorite game. Sit and wait. Sit and wait. Sit and wait. Oh and continue to give myself the super duper fun injections into my stomach.Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com0tag:blogger.com,1999:blog-8771426234661927381.post-25085039476398318062010-05-16T13:00:00.000-07:002011-03-09T12:04:04.876-08:00This gene is a MTHFR<div>As I sit here on bed rest at 5 weeks pregnant, I am hopeful, scared, bored and lonely. I decided to write this blog to capture my past, present and future battles with recurrent pregnancy loss.<br /></div><br /><div>January 2005 while living in Brazil, I became pregnant with my son. He is now 3 (he would add "and a half" here with every ounce of pride that a 3 year old can muster). Simple, easy. I give these details because only in hind sight do I think that something about living there allowed me to get pregnant and carry a healthy baby. Was it diet, caipirinhas, or the Brazilian way of life? Possibly it was it the magical pink dolphins we swam with in the Amazon that are supposed to impregnate the village women? I am still pondering these questions. </div><br />In 2008 we became pregnant for the second time. We rejoiced and told EVERYONE. (Lesson #1 learned.) Then at 8 weeks, I began spotting and spotting turned into bleeding and I went to the ER where they said there was no evidence of a pregnancy and it was deemed a blighted ovum.<br /><br /><div>A few months later we conceived baby #3. At about 6 weeks pregnant, I began having serious pain on my right ovary. Blinding pain. I thought my ovary was going to explode. Those of you with ovaries know that you KNOW when it is your ovary. It isn't indigestion or sciatica, like they tried to convince me. It is a OVARY! I went to the ER. There I met the most horrible of all OBGYNs, Dr. Golden. She ran some blood work and then did an ultrasound where she told me with absolutely no feeling in her voice and without an ounce of concern or compassion that she "highly doubted this was a viable pregnancy" and then she turned around and walked out the room. Not even addressing the searing pain in my side (which was later diagnosed as a bleeding corpus lutem cyst). Although my HCG levels were still fine, the ultrasound was showing an empty sac. The next few weeks were MISERABLE. I think I had 1-2 ultrasounds a week for the next 3 weeks. The doctors could never tell me beyond a shadow of a doubt that the pregnancy wasn't healthy. Each scan revealed a slight change with the fetus. First there was an empty sac, then a small yolk sac, then a "possible" fetal pole. In the end, at 11 weeks gestation, we had a d & c. Super fun. When we went back for our follow up appointment after the "procedure", the doctor informed me that the lab results were showing that I had a partial MOLAR pregnancy (insert the dun-dun from Law & Order).</div><br />I dare you to google molar pregancy. Go ahead do it.<br /><br /><div>The doctor began explaining the follow-up treatment. This included chest x-rays, weekly blood work and waiting a least 6 months before attempting pregnancy again. The worry here is that apparently the "molar" cells can regrow. These rouge cells can multiply and potentially cause CANCER. Yes, it is possible to get cancer from getting pregnant. Who knew? Who the %$# knew?</div><br />After getting the go ahead from the physician, we quickly became pregnant with #4. The ultrasounds at 6, 7 and 8 weeks revealed no fetal pole. The pregnancy was once again deemed "not viable". A d&c was scheduled, but the night before I was supposed to go in, I miscarried on my own. I will withhold the details or this. Let's just say 'yuck'.<br /><br /><div></div>After the 3rd miscarriage, we decided to seek the advice of a fertility doc. I asked my OB for my records, she copied them and sent me on my way. In the parking lot of the doctor's office, I decided to face my medical records and read about all the crap that has happened. This is when I read through my labs, ultrasound reports, surgical reports, office visit summaries. When reading through these documents, I found a lab report. On the top of this report I saw ***Patient is homozygous for methylenetetrahydrofolate reductase***. This was the first time I had ever heard these words. Needless to say I didn't understand a word of it. I figured must not be important if my doctor hadn't mentioned it. The asterisks on the page did bother me, though.<br /><div>Met with the fertility doctor. I handed him over my medical records. He asked me to give him 5 minutes to review. He came back in the room after 1 minute and said "I found a problem". He said I have what is commonly called MTHFR. My husband and I laughed out loud. I have been called a lot of things in my life. MTHFR??? Couldn't they have thought of a better acronym?? He looked at me like I was a martian and didn't get the comedy. I gently tried to explain that the acronym was funny, not the diagnosis. Still lost on him. All business this one.</div>He then explained the implications of the MTHFR.<br /><br /><div></div>Go ahead, google that, I double dare you!<br /><br /><div></div>MTHFR has a host of super fun implications. Some of my favorites: stroke, heart disease, Alzheimer's, drug addiction, Parkinson's, diabetes, and recurrent pregnancy loss (dun dun).<br /><br /><div></div>His suggestion was to 1) follow up with a hematologist to make sure there are no clotting issues 2) immediately begin taking Folgard, 81 mg of aspirin and a prenatal vitamin. 3) once pregnant begin with twice daily shots of Heparin (in the stomach, fun times) and prometrium (Progesterone taken intravaginally, no less).<br /><div> </div><br /><div>We found out we were pregnant again at the end of April, 2010. I immediately made an appointment with the fertility doctor to begin with the treatment plan. About a week later, I began spotting. I had an ultrasound at about 5 weeks pregnant and they said there was a "questionable sac". They want to repeat the ultrasound in a week. Now I have been spotting/bleeding for over a week, which is why I am on bed rest, and I am anxiously awaiting the ultrasound scheduled for tomorrow. Fingers crossed. Stay tuned.....<br /></div>Shawnhttp://www.blogger.com/profile/07895459826811259913noreply@blogger.com0