High Risk

     I haven't really had time to post about much of what is going on with my current pregnancy.  I am very grateful to be at the point I am at right now in the pregnancy.  Really, all things considered, it is a miracle that I have made it this far.  I am not exactly having your average pregnancy.  At about 19 1/2 weeks I started to have a very itchy rash form around my belly button and then later that week it spread a little over the rest of my stomach.  I know abdominal itching is fairly common in pregnancy, but this felt like a little more than that so I made an appointment with a Dermatologist.  At that appointment he told me it was probably normal pregnancy itching and he sent me home with some cream to treat it.  I put the cream on every day, but the rash continued to spread throughout my stomach and then down to my legs.  I went in again the the Dermatologist and this time he told me it was probably bug bites.  He told me to check our mattress and possibly sleep in long pajama pants and high socks so I wouldn't get bit at night.  I checked our mattress and found nothing.  We practically dismantled our whole bed actually and couldn't find a thing.  I slept the way he told me to for a week.  I was still getting worse every day and Jason had absolutely nothing which was odd because we sleep in the same bed.  At this point I really didn't think it could be bug bites.
     I decided to do my own research.  I spent several days and many hours looking up all sorts of pregnancy related rashes.  At one point I stumbled across one that seemed like a possibility.  It is called Pemphigoid Gestationis.  It is an extremely rare pregnancy related rash that not many doctors have every even seen or heard of.  Some of the symptoms really raised red flags for me.  It is an autoimmune disease which means it is genetic. Autoimmune diseases really run in my family.  It said it often starts around 20-21 weeks gestation which was very close to when this started.  It also more common when you are carrying a boy.  It said it often starts in the belly button and then spreads to the rest of the abdomen and then the legs, back, and arms which is exactly what this was doing.  The pictures I could find online of other cases resembled my rash as well.  I really had a strong feeling that this was what I had.  I went into the dermatologist a third time with a print out of information about Pemphigoid Gestationis for him to read since it was really rare and there was a good chance he has never heard of it.  He barely glanced at the paper and put it aside.  He told me he really thought it was bug bites, but 'to be sure' they would do a skin biopsy.  The did the biopsy and he called me with the results a week later.  It came back 'suggestive of arthropod (bug) bites.  He again told me to check out mattress and continue sleeping in pajama pants.  I told him that my husband wasn't even getting bit and I really didn't feel like the diagnosis was right.  I he said was 'bug bites' and 'I don't know what to tell you'.  I continued to sleep that way for two more weeks, which by the way was extremely uncomfortable in the early summer heat.
     After two weeks of absolutely no change and the rash spreading even more I decided I had enough and decided to get a second opinion.  I went to another dermatologist and explained what was going on.  I brought in the same printout and told her I really felt like I needed to be tested for this skin disease.  She was a little skeptical like the other dermatologist.  She told me it really could be bug bites, but I pushed her hard enough and she did another biopsy.  She told me that the biopsy the other dermatologist has done was a 'basic' biopsy and that you had to do a very specific biopsy to test for this disease.  That really made me mad because that is what the first dermatologist should have done!  A week later I got my results and sure enough, I have Pemphigoid Gestationis.  The dermatologist told me it is extremely rare.  Only one in every 50,000 pregnant women get it.  She had never seen it or heard about it, so she wanted me to go to another dermatologist who had.  It is so rare that no one at my OBGYN's office had ever seen or heard about it either.  He asked me if he could bring in several of his colleagues while I was there so they could see my rash and learn about it.  I felt like a side show freak with all of them walking around me and asking questions.     The dermatologist had faxed my OBGYN my results and I told him I really wanted to to go to my mom's dermatologist that she has been seeing for years.  He is very hard to get into or else I would have gone to him in the first place.  My OBGYN called him on the phone while I was there and he agreed to see me two days later.  He has seen this disease about 30 times in his career.  It may not seem like a lot, but for such a rare disease, that is actually huge!  He started treating my right away with oral steroids.  The steroids have helped lighten the rash a little and it doesn't itch quite as much, but it is still very uncomfortable.  This new dermatologist also tested me for Celiac Disease which is another autoimmune disease that my mom and sister have so I have a much higher chance of getting it.  One of the symptoms of it is a terrible rash and he thought it would be a good idea to rule it out as a contributor to my rash I already had.  I was tested 5 years ago, but you can develop it at any time.  I am glad I am seeing my mom's doctor because he knows her history and I know any other doctor wouldn't even think of testing me.  The results came back positive and I am now on a gluten free diet.  The dermatologist thinks it will really help lessen the effects of my rash since all these autoimmune diseases are inter related and there is a good chance that being gluten free will help.  It is a total lifestyle change and I am really missing some of my favorite foods, but if it will help in any way I am more than willing to do it.  Jason has been really supportive and is willing to eat the way I do so I don't have to make separate meals.  It has been a little difficult because all the things I have been craving lately have gluten in them.  But, I know there are worse things than not being able to eat a doughnut or cookie!  My doctor has me taking extra folic acid now that I have been diagnosed because apparently you have a harder time absorbing it when you have Celiac Disease and it can harm the baby.  I feel like an old person now because I take 6 different pills in the morning, 4 pills in the afternoon, and 2 more at night.  It's crazy!  In just a few short weeks I found out about two autoimmune diseases that I didn't even know I had and I have a greater chance of developing more.
     The dermatologist was very honest with me and he told all about the risks to the baby and I associated with this rash.  The whole reason the rash even forms is because there is a problem with antibodies crossing the placenta.  The placenta doesn't function the way it should in a normal pregnancy.  Sometimes the baby stops getting the nourishment it needs through the placenta and you can go into preterm labor and in some cases have a still born baby.  That part really scared me, because I have done that already and I don't think I can do it again.  It can also cause a lot of extra problems and infections for me.  I have to have a c-section and I can get really infected if they have to cut through one of the sores.  It can also cause problems for the baby too.  They are often born with the rash  and they are usually a much lower birth weight from not getting enough nourishment from the placenta.
    I talked to OBGYN who had never heard about or seen this disease either decided to send me to a Maternal Fetal Specialist who deals with high risk pregnancies to treat me as well.  So, now I am seeing three separate doctors and I have several appointments every week.  After a consultation with the high risk specialist we left feeling even more worried than before.  He told us that starting at 32 weeks I need to do non stress tests and ultrasounds every two weeks to monitor the babies heart rate and growth and check my cervix and the amount of amniotic fluid around the baby to make sure the placenta is still functioning okay.  If there is ever a concern I will have to go in every week.  He also said that there is a very good chance they will have to take me early with this pregnancy to make sure the placenta doesn't stop functioning.  However, there are risks with that because we don't want to take him too early because he will probably have a lot of health problems and less chance of survival.  I am 29 weeks right now and they really want to see if I can make it ti closer to 34-36 weeks unless the baby is under a lot of stress.  He also told me that I have to really take it easy because the steroids I am taking can have the dangerous side effect of thinning out the membranes around your cervix and they can rupture early and send you into preterm labor.  I am not necessarily on bed rest, but I have to take it much easier than someone with a normal pregnancy.  One thing he did say is that he is amazed that I have made it this far with all these complications.  He said that if he would have saw me much earlier on in this pregnancy he wouldn't have given me much hope for making it beyond 18 weeks or so.  There are also other risky side effects from the steroids.  It can thin your bones, cause problems with your vision, make you really nauseous, lower your immunity, etc.  Hopefully I won't be affected for too long because I will only taking this medicine for the rest of the pregnancy and then the rash should go away.  But, it often will flare up again when you have your first menstrual cycle after the pregnancy.  Yippee!
   A week and a half ago at my last OBGYN appointment he brought up the fact that this skin rash will almost definitely happen again in another pregnancy and it will probably come on much stronger and much earlier and cause even more problems for us.  He said that if we wanted to, he could tie my tubes while they are doing the c-section and prevent a future pregnancy.  I really didn't want to hear this because it makes me feel like my family planning is being decided for me.  I understand that there are many risks and complications associated with my condition, but It makes me sad to think that we may not even have the chance of having any more biological children.  Ultimately it is our choice and we still need to discuss it, but I really don't like the position this puts us in.  WHY CAN'T I HAVE A NORMAL PREGNANCY??????  Now, whenever I am around women who are experiencing normal pregnancy symptoms like swelling and back aches and they complain about it I want to laugh in there face!  They have NO IDEA what REAL COMPLICATIONS are!!  I understand that being pregnant is not always fun, but I have all the back aches and swollen ankles, nausea etc. too along with this horrible rash that is ALL OVER my body.  And it's more than just an itchy rash, I wouldn't exactly call it 'painful', but it is much more than regular itching.  Sometimes I wake up scratching myself to death in my sleep without even knowing it and there will be blood all over the sheets.  The only thing that somewhat relieves the itch is ice packs.  I sleep with them every night and change them multiple times.  Creams and Antihistamines don't help at all because the rash runs so deep beneath my tissue.  Really the only treatment is these oral steroids and ice.
     I know some of you may not want to see this because it is kind of gross, but this is what I have to deal with.

This picture was taken almost a month ago, the rash has spread much more since this.....

Sorry, I know these pictures are gross, but people really don't understand that this isn't some silly little rash.  This is what my entire body looks like.  And it has spread a lot more since these pictures were taken. Many of the sores are lighter in color, but they have gotten much bigger. My dermatologist takes pictures every two weeks when I come in to monitor them.  I feel like a freak of nature every time I go in there.  It is a very serious not to mention uncomfortable condition.
     All of this has REALLY made me mad at the first dermatologist.  If he would have listened to me when I came in with my concerns he could have tested me with the RIGHT biopsy and we could have caught his and been treating it almost a MONTH earlier.  I will NEVER recommend him to anyone!  I had even done the research for him and he didn't even listen to me!  I still need to write him a letter!
     I really try not to complain too much, so this post is a little to the contrary of that.  But, I really want everyone to know that in spite of all this I really am grateful that I am still pregnant.  I know there are a lot of people out there that would choose this if they could have the possibility of having a baby at the end even with all the pain and suffering and no sure guarantee that it will work out.  And, the more I think about it, if I had to go back and was given this as my only option of possibly having another baby, I would choose it every time. As awful as it is, the pain and suffering of not being able to conceive a child is much worse.  I have really tried hard not to complain too much about this even though it keeps me up at night with worry because I know that there are others out there suffering even more than I am and I need to count myself 'lucky'.  I truly am grateful for this little baby and I really hope and pray we get to meet him in just a few short weeks!  I am really praying to see the end of this rainbow!!