Jun 16, 2012
Apr 2, 2012
Long time no post!
We treasure the time home that much more, it feels like!
Anyway, my health...interesting....the neverending saga.
Well I have an official diagnosis (besides the Mitral Valve Prolapse, which isn't such a huge deal)...it is Celiac Disease!
I was bloodtest positive as well as biopsy positive as well. The whole story is, I had had this longstanding issue with my nerve endings, always feeling tingly and numb, itchiness under my skin--an itch that literally couldn't be scratched, frequent stomachaches, tense muscles, restless leg syndrome, weight that clung to me for dear life---couldn't drop weight, tired all the time. Well I was finally diagnosed from my general MD with fibromyalgia, and given some drug to take. I was grateful to have a diagnosis. I was somewhat familiar with the illness, and it sounded plausible to me. Well I started the drug, and I think 3 days in, was having some very unpleasant side effects. I started Googling homeopathic remedies for fibromyalgia, and read tons online about going Gluten Free. I had no idea what gluten was.
I threw it out there on facebook, and learned from a friend, that fibromyalgia is often a misdiagnosis for Celiac. That I should try going Gluten Free and see how I felt. Well I looked into it, and it sounded like a way to cut the weight too, so why not. Literally, within 2 days or so, my restless legs STOPPED. I thought....whoa. Maybe I do have this. Maybe there's something to this. So easy as pie, I asked my doctor to test me for it, she said sure, why not? She ran the blood panel, and about 5 days later called me back, that I had a positive Celiac panel. Whoa! I diagnosed myself!
I relentlessly pursued this diagnosis, from six weeks postpartum, I knew something was wrong. I mean I was sick right afterwards with Postpartum HELLP Syndrome, but so many things lingered.
So that was October, and now I am officially six months gluten free.
Is it easy? Hell to the no.
I will post again about it more specifically. But it is now a way of life, and I have a lot of my health back on track. I sleep better, I lost 12 pounds, and I don't have the tingling and the restless legs, and constant stomachaches, oh, and more energy!
I do think there are some theories out there about what came first, the Preeclampsia, or the AutoImmune Disorder? I don't know. But in my opinion, my pregnancy unearthed this condition in me, I do not believe I have had it for life.....
Interesting stuff. I hope it helps someone out there in internet blog land:)
Jan 29, 2012
University of Vermont: Preeclampsia Study
What it Involved:
The goal of the study is to identify what the cause of Preeclampsia is and whether there are markers that can be perceived prior to conception, therefore making it possible to one day have testing available to determine whether a mother was at risk for developing this disease later in her pregnancy.
It took several months to plan, but my husband and I made a fun getaway out of it, and drove 5+ hours up to Vermont to participate in the study. It was incredible!I had everything from a DEXA scan that shows bone density in addition to body mass and fat content. That was basically a full body XRAY and showed some interesting data. It only took a few minutes and was fascinating to learn about. Apparently, in your lifetime, your bone density as a woman, decreases dramatically.
Blood flow studie was another critical part of the testing that they did and it determines and examined blood flow to the uterus, kidneys, one arm and one leg as well as the blood flow to the heart. These were timed tests. What they were doing was almost simulating the symptoms of the disease, by having an inflated blood pressure cuff on one arm and one leg for a solid 5 minutes, blocking blood flow, and then allowing the blood to rush back to the arm or leg, and measuring along the way. It was similar in feeling to sitting on your foot too long and having it fall asleep, and then magnifying that feeling, so that it puts stress on the blood flow. What they were doing was very measured and exacting. There were several physicians in the room and each one had their roles, whether it was using the stop watch, providing the pressure, administering the blood draws, and the main doctor, and head researcher, Dr. Ira Bernstein. I was the 26th participant to do this study, and by the end of 5 years, 160 women will have participated.
As a part of this study, there were also ultrasounds of the heart that they did, as well as ultrasounds of the uterus.
Before testing began, I was on a strict 72 hour diet of low/no sodium so that testing would be extremely baseline. I also had to complete a 24-hour urine collection before coming to the center, so I had a jug and a kit that I carried on our trip up to Vermont. All in the name of science, I tell you!
Then there was something called Sympathetic Tone Measurements. They did something called Valsalva maneuvers which is measuring heart rate and blood pressure and blowing into this mouthpiece for 20 seconds which doesn't sound like much, but it took some serious endurance. The goal was to keep the pressure consistent the entire 20 seconds at a designated pressure, then release, and do this again and again and again. This is similar to clearing your ears when you are scuba diving, or in an airplane. There's no discomfort, but it does require some effort. The idea here is that the blood pressure response to these measurements helps them understand how our nervous systems work.
The next test was something they called the Volume Challenge. While measuring my blood pressure continuously, they also gave me 500ml of a salt solution through an IV over 15 minutes to examine blood pressure response to this extra volume in the vascular system. After having been to Labor & Delivery 15 times before actually having Julia, I can tell you, 15 minutes for this IV was incredibly fast. They usually did this to me about once a week leading up to my birth and it would take an hour or more! I told this to Dr. Bernstein, who said that its funny there isn't a lot of evidence to suggest that an IV will actually calm a uterus or stop contractions. So funny, all those IVs were for nothing! Well you never know, maybe it helped me stay pregnant longer! I will never know!
Plasma Volume Estimates: EVANS Blue Dye test. An additional part of the research was to inject a blue dye through the saline lock catheter. Blood samples were then obtained both before and at 10 and 30 minutes following the injection of the blue dye. This test measures your plasma volume, or the volume of fluid in your vascular system. If they hadn't told me they injected a blue dye, I would have not known. This was cool to learn about.
Clotting TestsUsing the same intravenous line, they did several test and checked several markers for how blood clots at rest. They did a blood draw, after I rested for an hour, which was easy enough for me, I just watched TV and hung out and tried not to fall asleep though that would have been fine too. One of the things they were measuring is endothelial function, the lining of the blood vessels.
Exercise Tests: One of the last steps in the test was exercise testing that was on a bicycle and would show my maximum level of effort. The measured the heart at this point, with sticky pads on the chest, an external heart monitor, and a device that measured breath in and out.
The final step was an MRI of the head. The purpose of the MRI is to collect data on how preeclampsia causes changes in a woman's brain. Understanding how the brain is affected will help the medical community work towards preventing eclampsia, or seizures.
No, I don't think a person off the street would ever wake up one day and say they wanted to do all of this, but I definitely had motives, as in I still had so many questions that came from having Preeclampsia/HELLP and the desire to know that I was now considered ok enough to try to conceive myself, or ok enough in that I didn't have any lasting damage to my heart, liver, kidney or uterus, arteries, or something else!
All in all, it's an amazing thing what the University of Vermont is doing, and the research that they are getting through all of this, I am sure is going to shed so much light on the disease and hopefully can really change and save lives of women and their babies
--------------------------------------------------------------------------------
The goal of the study is to identify what the cause of Preeclampsia is and whether there are markers that can be perceived prior to conception, therefore making it possible to one day have testing available to determine whether a mother was at risk for developing this disease later in her pregnancy.
It took several months to plan, but my husband and I made a fun getaway out of it, and drove 5+ hours up to Vermont to participate in the study. It was incredible!I had everything from a DEXA scan that shows bone density in addition to body mass and fat content. That was basically a full body XRAY and showed some interesting data. It only took a few minutes and was fascinating to learn about. Apparently, in your lifetime, your bone density as a woman, decreases dramatically.
Blood flow studie was another critical part of the testing that they did and it determines and examined blood flow to the uterus, kidneys, one arm and one leg as well as the blood flow to the heart. These were timed tests. What they were doing was almost simulating the symptoms of the disease, by having an inflated blood pressure cuff on one arm and one leg for a solid 5 minutes, blocking blood flow, and then allowing the blood to rush back to the arm or leg, and measuring along the way. It was similar in feeling to sitting on your foot too long and having it fall asleep, and then magnifying that feeling, so that it puts stress on the blood flow. What they were doing was very measured and exacting. There were several physicians in the room and each one had their roles, whether it was using the stop watch, providing the pressure, administering the blood draws, and the main doctor, and head researcher, Dr. Ira Bernstein. I was the 26th participant to do this study, and by the end of 5 years, 160 women will have participated.
As a part of this study, there were also ultrasounds of the heart that they did, as well as ultrasounds of the uterus.
Before testing began, I was on a strict 72 hour diet of low/no sodium so that testing would be extremely baseline. I also had to complete a 24-hour urine collection before coming to the center, so I had a jug and a kit that I carried on our trip up to Vermont. All in the name of science, I tell you!
Then there was something called Sympathetic Tone Measurements. They did something called Valsalva maneuvers which is measuring heart rate and blood pressure and blowing into this mouthpiece for 20 seconds which doesn't sound like much, but it took some serious endurance. The goal was to keep the pressure consistent the entire 20 seconds at a designated pressure, then release, and do this again and again and again. This is similar to clearing your ears when you are scuba diving, or in an airplane. There's no discomfort, but it does require some effort. The idea here is that the blood pressure response to these measurements helps them understand how our nervous systems work.
The next test was something they called the Volume Challenge. While measuring my blood pressure continuously, they also gave me 500ml of a salt solution through an IV over 15 minutes to examine blood pressure response to this extra volume in the vascular system. After having been to Labor & Delivery 15 times before actually having Julia, I can tell you, 15 minutes for this IV was incredibly fast. They usually did this to me about once a week leading up to my birth and it would take an hour or more! I told this to Dr. Bernstein, who said that its funny there isn't a lot of evidence to suggest that an IV will actually calm a uterus or stop contractions. So funny, all those IVs were for nothing! Well you never know, maybe it helped me stay pregnant longer! I will never know!
Plasma Volume Estimates: EVANS Blue Dye test. An additional part of the research was to inject a blue dye through the saline lock catheter. Blood samples were then obtained both before and at 10 and 30 minutes following the injection of the blue dye. This test measures your plasma volume, or the volume of fluid in your vascular system. If they hadn't told me they injected a blue dye, I would have not known. This was cool to learn about.
Clotting TestsUsing the same intravenous line, they did several test and checked several markers for how blood clots at rest. They did a blood draw, after I rested for an hour, which was easy enough for me, I just watched TV and hung out and tried not to fall asleep though that would have been fine too. One of the things they were measuring is endothelial function, the lining of the blood vessels.
Exercise Tests: One of the last steps in the test was exercise testing that was on a bicycle and would show my maximum level of effort. The measured the heart at this point, with sticky pads on the chest, an external heart monitor, and a device that measured breath in and out.
The final step was an MRI of the head. The purpose of the MRI is to collect data on how preeclampsia causes changes in a woman's brain. Understanding how the brain is affected will help the medical community work towards preventing eclampsia, or seizures.
No, I don't think a person off the street would ever wake up one day and say they wanted to do all of this, but I definitely had motives, as in I still had so many questions that came from having Preeclampsia/HELLP and the desire to know that I was now considered ok enough to try to conceive myself, or ok enough in that I didn't have any lasting damage to my heart, liver, kidney or uterus, arteries, or something else!
All in all, it's an amazing thing what the University of Vermont is doing, and the research that they are getting through all of this, I am sure is going to shed so much light on the disease and hopefully can really change and save lives of women and their babies
--------------------------------------------------------------------------------
Subscribe to:
Posts (Atom)
