Saturday, August 21, 2010

Update from our appointment in Seattle

Today we got to meet our new doctor in Seattle, WA. Her name is Dr. Thyer and our nurse’s name is Lora. They were both very wonderful and willing to explain everything to us. When we first got there they did the regular vitals. Then we got to meet our doctor and went to her office to talk about our history and what we would like to do.

After talking about our history she started to explain to us what she sees from our history. She confirmed the diagnosis of PCOS (Polycystic Ovarian Syndrome). She thinks that I am pretty far along in the prognosis since I’m showing problems with handling insulin and already having signs of hypertension. She explained the course of PCOS and the problems that come along with it. She said that she was going to do some labs to confirm what stage I am at. She talked about what they can do to help treat the disease. The main treatment is a very special diet at is focused on the course of PCOS, exercises, weight loss and meds.

I was already put on metformin as a treatment but my body did not take it well. She said that there was one other med that they can put me on but she wants to wait to see what the labs say and wait to see how these other things work first. Thankfully she went into stats without me even having to ask. We talked about it for quite some time about what we wanted to do. People at my BMI can be on drugs for a year and a half and only 10% of them will conceive. If I can also decrease my BMI it decreases our changes of having a mischarge. She was very knowledgeable about the disease and specializes in treating pts with PCOS.

So we made a hard decision. The baby thing is going to go on the back burner for at least 3 months but with the goal in mind of fewer treatments which equals less money and faster results. So for the next 3 months I am going to be working closely with this Nutritionist to work on a PCOS diet which is really going to be a life style change and hopefully with the change we will be able to decrease the about on fat my body wants to store. Due to the course of PCOS our bodies want to store more fat then normal. At my appointment we went over a typical day of eating and the first thing the doctor said was that I wasn’t eating enough. I have to start eating 6 small meals a day which is going to be very hard for me and change most of my food to protein food. The more protein the less fat my body is going to want to store. She said that since I am not eating enough that my body wants to store everything I eat which is why my fasting glucose level is so high. We are also hoping that if we get results it will also decease my hypertension….It would be so nice not having to take BP meds exspically at my age. She said that if the diet, exercise and meds do not work that I would need to see an endocrinologist to see what else they can do or what else is causing any problems.

We also talked about doing another surgery to remove the endometrium that has grown back at this time. Since exercises is one of the other key factors the surgery is becoming more realistic and needed now to decrease the daily amount of pain and fatigue. The doctor is going to wait for more paper work from South Dakota and then she will be talking to another doctor in the building about doing a surgery on me. She said that she was able to perform the surgery but since the endometriosis has gotten so serve and considering I’m already at stage 3 out of 4 she wants someone with more experience. The surgery could also increase our chances of becoming pregnant.

I have to call the doctor back in 2 to 3 weeks for a telephone appointment to go over my labs that they drew. It took 2 people to do my labs because they needed 8 things of blood to run the entire tests they needed. So before I talk to the doctor I have to get set up with the nutritionist to get set up on the PCOS diet and hopefully I can start getting my weight and BMI down. My goal is to get to a BMI of 35 which means I have to lose 40 pounds. But I’m going to get there and I would like to get there by the end of this year and need to get there due to the increase chances and decreased risks.

I am so thankful that I have 2 wonderful people up there who are going to be helping me. The doctor said that she agreed that I need that level of care. My last doctor never told me any of this other information and was never very informative. So hopefully by Jan of 2011 we can get everything straightened out with my body and get the surgery done if it’s necessary and hopefully will be on a good road to success…Plus Jacob will be happy because we will be able to go snowmobiling this year 

I’ll let you know if I hear anything else back otherwise I’ll post again after our phone appointment in 2 to 3 weeks.

Wednesday, August 18, 2010

Update on ER visit today

So today at work I started feeling like I did 2 Fridays ago when I passed out at work. I ate a cookie and then started feeling funny and sick. I waited a few minutes to see if it went away but it didn't. Things also started spinning and that’s when I started to worry but that’s what happened last time. So I went down the hall at work to find someone to check my blood sugar. I found a CNA to take my blood sugar and it was 53. Lucky for me my favorite and wonderful nurse was working so I went down to see her. I told her what it was and she told me I need to intake sugar. So I wanted back to the OT room and started to drink some sugar but it was getting worse. So I called my doctors nurse and lucky me they actually answered I told her what was going on and that I was very worried because of how low it was and how it was much worse than last time. She told me that my doctor was gone until Friday and she said the only thing she could tell me to do was to drink sugar. I told her that I was already doing that and it wasn’t working. She told me until she called me back that I was not allowed to drive anywhere and was not to be by myself in case it got worse. Thankfully I have good coworkers. They nurse called me back and she said that she talked to the doctor and I was to go to the ER. So I called my husband’s work 4 times and they didn’t answer so I had no idea how to get a hold of them..Thank God he had his phone and he was able to call me back. By the time he got to work I was so shaky and felt so sick I was really scared. When we got to the ER it had gotten up to 128 thanks to the wonderful nurse at work. After labs and test at the ER the doctor sent me home and told me not to eat any sugar and to only eat protein. He wasn’t even worried about it and wouldn’t even try to figure out what was causing it. My blood pressure was everywhere it was from 176 over 80 to 123 over 62 but he didn’t seem to have a problem with that. I tried to ask them more question but just blow me off so I guess I have to wait until next week for hopefully some kind of answer. I’m going to be pushier with my doctor and tell them that I want a heart monitor too because I know something is wrong. Hopefully no more bad news but I’ll update after my appointment with the fertility clinic on Friday…Hopefully there will finally be some good news.

The History and Current Situation since I'm starting this in the middle of the Journey

On December 4th, 2008 we found out we lost our first baby girl at 20 weeks due to medical complications. She was due on May 7th, 2009. We miss her so much...she would be a year and a half now. In Sept 2009 we started trying for our second child which started our current journey we have been on for almost a year now.




In October 2009 I had to received 2 weeks of iron transfusion due to blood loss. I needed blood transfusions but they didn't want to do it since I was so sick and weak they wanted to wait and see how the iron transfusions went. After 2 weeks they did labs again and it wasn't much better. My body was not taking to the iron transfusions. So they decided not to do anymore and to try oral meds again. After 2 months they referred me to a second doctor to try to get the iron level up. They started me on hormone pill to try to stop the bleeding. After another 2 months they finally got everything under control and they thought I was finally healthy enough to start trying. After 2 months of nothing happening they started me on my first fertility treatment of clomid. The first dose was 50mg and it didn't work so the second month they upped it to 100mg. Well that didn't go so well and set me back again. I had a reaction to and was no longer able to take it. I was then referred to the clinic in Spokane, WA.



I was keeping my fingers crossed that everything was going to go good and we could actually be able to get prego's again. We went up for our first appointment and they told us they were going to have us try another oral med first and after 3 months if that didn't work then we were going to try injections and then from there was IVF treatments. When they were doing the ultrasound they found that my left ovary was not longer functional due to the course the endometriosis has taken on it but the right side seem to be fine. Then after 2 weeks I got the call that set us back even more. They told me that the insulin level in my blood was really high due to PCOS and they would need to put me on metformin to help lower the level. I also had an infection and would need to take antibiotics for 2 weeks. Come to find out they did that just because they were going to be gone and didn’t make sure the meds won’t cause other problems in my body. After 5 days and down 13 pounds they finally told me I could stop the meds. Ever since then I’ve had nothing but problems. I called the clinic back 4 times to ask them questions about the meds and I wanted to know more about why they wanted me on this med and they would never call me. When I was able to talk with them they told me that it was high and would never give me the numbers.



So I asked my OBGYN for a new referral if he did not agree with what the clinic in Spokane was doing. The nurse called me back and asked me if I wanted to go to Boise or Seattle. After lots of research we decided to go with the clinic in Seattle because they will outsource everything they can so we don't have to make so many trips out that way. We have our first appointment in Seattle with this new doctor, so I'm keeping my fingers and toes crossed again in hopes of good news but I want the truth this time. No games.

Right now I am currently dealing with high blood pressure and low blood sugar. It took 6 weeks to get into my regular doctor to talk with her about why my blood sugar is staying in the 70's and 80's and why my blood pressure is all over the place. I finally had an appointment last week and they put me on a blood pressure med and I was suppose to be hooked up to a glucose monitor for 24 hours a day for 3 days. But the doctors are too busy and can't do it until next week. I have an appointment on Tuesday to see how the blood pressure med is working.