I went to see my rheumatologist yesterday and he said that he thinks he's going to take me off of Coumadin after my next visit, which is in 3 months. I was glad to hear that since being on Coumadin takes a lot of regulating and it's hard to go in for weekly or bi-weekly blood draws with 3 small children.
He said that he feels like he's walking a fine line between 1) wanting to prevent future episodes that may land me in the hospital and 2) staying away from long term side effects of being on Coumadin for life. So he thinks he has come up with a plan that will hopefully keep me from having future episodes, and has less risk for long term side effects. He is thinking about switching me over to plaquenil and a baby aspirin instead. He said that is no way to know whether or not this will work, but he feels confident that it's worth a shot.
So as long as my labwork looks okay in May when I go back to see him, then I will be switching meds and will be praying that it works and I continue to stay healthy.
Tuesday, February 5, 2013
Sunday, January 27, 2013
Update 1/27/13
It's been around 9 months since I last updated this blog, so I thought I'd go ahead and give everyone an update about what's been going on.
I am pleased to say that since my last post in April 2012, my medical issues have been pretty much nonexistent. I haven't had any more episodes and have pretty much only had routine doctors visits. I see my rheumatologist every 3 months or so and he continues to run a ton of tests hoping to get some answers as to what actually happened in March 2012. Unfortunately all of his tests come back with the same answers. The only two definite things that he seems to be sure of is that I have Raynaud's phenomenon (which I was originally diagnosed with in 2006) and antiphospholipid antibody syndrome.
The antiphospholipid antibody syndrome doesn't give me any outward symptoms and I am still on coumadin to try to prevent any future clotting. My doctor will decide in March (the one year mark from my hospitalization) whether or not he wants me to continue on the coumadin for life.
The Raynaud's phenomenon has been giving me a lot of problems since the weather has gotten colder. My hands and feet regularly go numb and turn white or purple. Sometimes it takes a long time for my finger/toes to return to their regular color and to stop throbbing. I've also learned that the coumadin makes me really cold all of the time. There are some days where I have a hard time getting out of bed because I am so cold. I spend a lot of time sitting with an electric blanket! I'm hoping that all of this will go away once the weather warms up again in a few months.
Here's a picture of what my hand will look like. It's not the best picture, but it should give you an idea.
In December I met with my gynecologist and we discussed a hysterectomy. All of my doctors have advised me against getting pregnant again for several reasons - 1) pregnancy may have triggered my hospitalization and could potentially trigger another episode, 2) I am currently on coumadin, which can cause birth defects, 3) I would have to continue on blood thinner throughout my pregnancy, which would mean lovenox shots. So along with a few other reasons/issues, we decided it would be best to go ahead with the hysterectomy and it was scheduled for December 17th.
I had to meet with all of my doctors (rheumatologist, hematologist, gynecologist, cardiologist) and have all of them in agreement before I could proceed with the surgery. It seemed like a lot of coordinating, but I finally got everyone's approval.
The week prior to surgery I met with the cardiologist and had another echocardiogram. He said that my heart function is pretty much back to normal and he doesn't think that I am at risk for future heart health issues, so that was a relief to hear. He wants to see me again in a year and said we may repeat another echo to make sure things still look good.
The week prior to surgery I also met with my hematologist and she devised a plan to bridge me off of the coumadin and onto lovenox for the surgery. So prior to surgery Rob had to give me lovenox shots in the stomach twice a day.
On Monday, December 17th I had my surgery, and the doctor told me that everything went well, but that I did bleed more than she was anticipating. So she wanted me to wait a few days before resuming my lovenox shots post surgery.
I stayed in the hospital one night and then came home. I rested at home the rest of the week while Rob took care of the kids. During the first week I had some soreness and light bleeding which had pretty much stopped by the end of the week. I stayed off of my feet for the rest of the week and on Monday, December 24th we drove to Rob's parents house for Christmas Eve.
Rob's whole family was in town and I spent a good portion of Monday and Tuesday standing on my feet talking to everyone. I wasn't really doing anything else other than standing more than I had been the previous week. Well on Tuesday afternoon I started bleeding again, and it quickly started getting heavier. I passed a clot about the size of a dime and started getting a little concerned. Over the next few hours I passed several clots and they continued to get larger, to the size of a strawberry. We called the on call doctor and explained that I hadn't been bleeding at all, and I'm on blood thinner, and now I was bleeding heavily and passing clots. She said not to worry, that I had probably just over done it, and to get off my feet again.
I already had a follow-up appointment scheduled with my doctor for the next morning, so we decided to just wait it out and see what the doctor had to say in the morning. So the next morning I met with her and she said the same thing, to just get off my feet and take it easy and see if that would help the bleeding to start tapering off again. Then I went to my hematologist to check my blood levels and see if I could stop taking the lovenox shots and just take the coumadin. She told me to stop taking the lovenox immediately because it may have been contributing to my heavy bleeding. So I stopped taking the shots and went back to taking it easy, and things went back to normal over the next week.
It's been 6 weeks since my surgery and I feel a lot better now. I still feel like I tire out pretty easily, but I'm not sure if that's related to surgery recovery, or just being a mom of 3 young kids.
So that's where things stand right now. I go back to see my rheumatologist on February 4th, so I'll see what he has to say. Thanks for all of the prayers, calls, cards, visits, food, and help with the kids during my recovery from surgery.
I am pleased to say that since my last post in April 2012, my medical issues have been pretty much nonexistent. I haven't had any more episodes and have pretty much only had routine doctors visits. I see my rheumatologist every 3 months or so and he continues to run a ton of tests hoping to get some answers as to what actually happened in March 2012. Unfortunately all of his tests come back with the same answers. The only two definite things that he seems to be sure of is that I have Raynaud's phenomenon (which I was originally diagnosed with in 2006) and antiphospholipid antibody syndrome.
The antiphospholipid antibody syndrome doesn't give me any outward symptoms and I am still on coumadin to try to prevent any future clotting. My doctor will decide in March (the one year mark from my hospitalization) whether or not he wants me to continue on the coumadin for life.
The Raynaud's phenomenon has been giving me a lot of problems since the weather has gotten colder. My hands and feet regularly go numb and turn white or purple. Sometimes it takes a long time for my finger/toes to return to their regular color and to stop throbbing. I've also learned that the coumadin makes me really cold all of the time. There are some days where I have a hard time getting out of bed because I am so cold. I spend a lot of time sitting with an electric blanket! I'm hoping that all of this will go away once the weather warms up again in a few months.
In December I met with my gynecologist and we discussed a hysterectomy. All of my doctors have advised me against getting pregnant again for several reasons - 1) pregnancy may have triggered my hospitalization and could potentially trigger another episode, 2) I am currently on coumadin, which can cause birth defects, 3) I would have to continue on blood thinner throughout my pregnancy, which would mean lovenox shots. So along with a few other reasons/issues, we decided it would be best to go ahead with the hysterectomy and it was scheduled for December 17th.
I had to meet with all of my doctors (rheumatologist, hematologist, gynecologist, cardiologist) and have all of them in agreement before I could proceed with the surgery. It seemed like a lot of coordinating, but I finally got everyone's approval.
The week prior to surgery I met with the cardiologist and had another echocardiogram. He said that my heart function is pretty much back to normal and he doesn't think that I am at risk for future heart health issues, so that was a relief to hear. He wants to see me again in a year and said we may repeat another echo to make sure things still look good.
The week prior to surgery I also met with my hematologist and she devised a plan to bridge me off of the coumadin and onto lovenox for the surgery. So prior to surgery Rob had to give me lovenox shots in the stomach twice a day.
On Monday, December 17th I had my surgery, and the doctor told me that everything went well, but that I did bleed more than she was anticipating. So she wanted me to wait a few days before resuming my lovenox shots post surgery.
I stayed in the hospital one night and then came home. I rested at home the rest of the week while Rob took care of the kids. During the first week I had some soreness and light bleeding which had pretty much stopped by the end of the week. I stayed off of my feet for the rest of the week and on Monday, December 24th we drove to Rob's parents house for Christmas Eve.
Rob's whole family was in town and I spent a good portion of Monday and Tuesday standing on my feet talking to everyone. I wasn't really doing anything else other than standing more than I had been the previous week. Well on Tuesday afternoon I started bleeding again, and it quickly started getting heavier. I passed a clot about the size of a dime and started getting a little concerned. Over the next few hours I passed several clots and they continued to get larger, to the size of a strawberry. We called the on call doctor and explained that I hadn't been bleeding at all, and I'm on blood thinner, and now I was bleeding heavily and passing clots. She said not to worry, that I had probably just over done it, and to get off my feet again.
I already had a follow-up appointment scheduled with my doctor for the next morning, so we decided to just wait it out and see what the doctor had to say in the morning. So the next morning I met with her and she said the same thing, to just get off my feet and take it easy and see if that would help the bleeding to start tapering off again. Then I went to my hematologist to check my blood levels and see if I could stop taking the lovenox shots and just take the coumadin. She told me to stop taking the lovenox immediately because it may have been contributing to my heavy bleeding. So I stopped taking the shots and went back to taking it easy, and things went back to normal over the next week.
It's been 6 weeks since my surgery and I feel a lot better now. I still feel like I tire out pretty easily, but I'm not sure if that's related to surgery recovery, or just being a mom of 3 young kids.
So that's where things stand right now. I go back to see my rheumatologist on February 4th, so I'll see what he has to say. Thanks for all of the prayers, calls, cards, visits, food, and help with the kids during my recovery from surgery.
Monday, April 30, 2012
Update 4/30/12
It's been another two weeks since I've posted an update, and I'm happy to say that things are going well. My mom flew back home on Saturday April 14th, and on Monday the 16th Rob's parents came and picked up the boys again. I did fine with Micah for the week and the boys came back Thursday afternoon.
Friday the 20th was my first day with all three kids by myself and it was great. When Rob came home I told him that I felt like it was a normal day. I wasn't overly tired when Rob came home, and I was actually feeling pretty good. So we were hopeful that I would be able to handle the next week by myself as well.
The week of April 23 - 27th all three kids were with me all week and we did fine. I even took all 3 kids with me to my hematologist appointment on Thursday and then grocery shopping. I am so glad that I am starting to feel normal again.
As far as the medical stuff...the rheumatologist said that my blood work looked fine, which can be interpreted as a good thing and a bad thing. Good because nothing else has popped up, but bad because we still don't have any answers. He is still waiting for results for the blood work that he sent off to Texas, so maybe we will get some answers there. He said that the only medication he wants to keep me on is the coumadin (blood thinner), so he started weaning me off of everything else. My steroid dosage has gone from 40 mg to 30, 20, 15, and now this week I'm taking 10. Next week I will start taking 5 mg a day until I see him again and then we will reevaluate that as well. He changed my coreg (heart medication) to once a day instead of twice. So far I haven't noticed any changes as I've started to come off the meds, so we're hoping that's a good sign that they aren't necessary any more.
I've been to the hematologist twice and my INR level has stayed the same, so my coumadin dosage has stayed the same as well. If my levels stay regulated over the next two weeks then I can start going for INR checks monthly instead of weekly.
I have a nephrologist appointment this week and another INR level check at the hematologist, so I will update again later in the week.
Thanks again for all your prayers.
Friday the 20th was my first day with all three kids by myself and it was great. When Rob came home I told him that I felt like it was a normal day. I wasn't overly tired when Rob came home, and I was actually feeling pretty good. So we were hopeful that I would be able to handle the next week by myself as well.
The week of April 23 - 27th all three kids were with me all week and we did fine. I even took all 3 kids with me to my hematologist appointment on Thursday and then grocery shopping. I am so glad that I am starting to feel normal again.
As far as the medical stuff...the rheumatologist said that my blood work looked fine, which can be interpreted as a good thing and a bad thing. Good because nothing else has popped up, but bad because we still don't have any answers. He is still waiting for results for the blood work that he sent off to Texas, so maybe we will get some answers there. He said that the only medication he wants to keep me on is the coumadin (blood thinner), so he started weaning me off of everything else. My steroid dosage has gone from 40 mg to 30, 20, 15, and now this week I'm taking 10. Next week I will start taking 5 mg a day until I see him again and then we will reevaluate that as well. He changed my coreg (heart medication) to once a day instead of twice. So far I haven't noticed any changes as I've started to come off the meds, so we're hoping that's a good sign that they aren't necessary any more.
I've been to the hematologist twice and my INR level has stayed the same, so my coumadin dosage has stayed the same as well. If my levels stay regulated over the next two weeks then I can start going for INR checks monthly instead of weekly.
I have a nephrologist appointment this week and another INR level check at the hematologist, so I will update again later in the week.
Thanks again for all your prayers.
Wednesday, April 11, 2012
Update 4/12/12
I've been home from the hospital a little over two weeks now and wanted to give another update and let everyone know how things are going.
The last two weeks have had their share of ups and downs and we are hopeful that I am continuing to make progress towards a recovery. Although some of the events over the past two weeks have left us wondering what new trials we might be facing in the future.
My first week home from the hospital involved a lot of new emotions. I was dealing with a lot of fatigue and sleep deprivation as well as the emotional roller coaster of learning that we were losing our baby. My mom was here that week and Rob stayed home most of the week and returned to work that Friday. My mom took care of Micah for the week and Rob's parents took Silas and Cullan so that I could try to get as much rest as possible. It turns out that resting was not as easy as we thought it was going to be. I was still taking 40 mg of steroids daily (20 morning and 20 evening) and they were making me have night sweats, continuously hungry, and unable to sleep. I was waking up every hour or so and would either have to get up and eat because I was hungry or I would have to get up and change my shirt because it was soaked with sweat. I don't think I got more than an hour of sleep at a single time during that first week at home.
On Thursday March 29th, Rob and I went to the hematologist and met with her in hopes of being taken off of the Lovenox shots and switching to the Coumadin pills for my blood thinner. She said that she had to have confirmation from my ob/gyn that I was no longer pregnant before she could do that. So we went to the ob/gyn that afternoon for confirmation. The hematologist also said she wanted confirmation from my rheumatologist that he wanted me to continue with blood thinners. So we ran into some phone tag problems and weren't able to get started on Coumidin before the weekend. I was really discouraged that we had to continue with the shots because they would burn every time I got one (two times a day) and my stomach was starting to get really bruised and several knots were developing underneath the skin.
Silas and Cullan came back for the weekend and it was so nice to get to see them again, but was also an eye opener as to how hard it was going to be for me to make the transition back to my "normal" life. Rob and my mom pretty much did everything to take care of all 3 kids and the housework while I continued to try and rest.
On Tuesday April 3rd, Rob and I went to meet with my rheumatologist, which turned into a 3 1/2 hour ordeal. He ordered a whole slew of labs and we will meet with him next week, on 4/17 to review the results. He said that there are still so many unanswered questions in his mind as to how I ended up in the hospital on 3/18 and what caused my hands and feet to look the way they did. He still thinks that the best explanation is that I had some sort of 'micro-clotting' that was happening in my hands and feet and that the best way to prevent it from happening again is to keep me on blood thinners. He said that I could possibly be on blood thinners for life, but that he will definitely keep me on them for the next 6 months to a year and then re-evaluate. He said that his fear is that if I come off the blood thinners then I may have another clot and next time it could be in my leg, or in my brain and I could have a stroke. So he would rather err on the side of caution.
We finally got the Coumadin transfer approved and I started taking Coumadin pills on Wednesday night. We didn't realize what a process it is to get regulated onto a blood thinner like Coumadin. So I wasn't able to stop taking the Lovenox shots because it takes several days for Coumadin to get into your system. I went to the hematologist on Friday and was told that my INR level needed to be at least a 2.0 before I could stop taking the Lovenox shots. On Friday I was a 1.0, so they sent me home to continue the shots until Tuesday when they could test my INR level again.
The rest of my second week home was pretty good and things were slowly starting to get back to normal. I was able to start helping around the house and help take care of the kids. There were certain things I still couldn't do, like pick up Silas, and I wasn't completely comfortable carrying Micah around, but other than that I was starting to feel better physically, even though I still wasn't able to get more than 2-3 hours of sleep at a time. Emotionally, I was still having a lot of ups and downs, but everyone kept telling me it was to be expected after everything I had been through. I was never in any pain during the week, just seemed to fluctuate between having energy one day and then being overtaken by fatigue the next. I figured that I still needed to find a balance between what all I was able to do/handle each day.
On Saturday, April 7th I thought I had reached a turning point. I was having a really good day energy-wise. We ate breakfast, did an Easter egg hunt for the boys, Rob's parents came over for a visit, and we gave the boys haircuts in preparation for pictures on Sunday. The one thing I was most excited about was the prospect of my first good night's sleep!! My rheumatologist had changed my steroid dosage to 30 mg in the morning instead of 20 in the morning and 20 at night. So not only had he lowered my dosage, but I was no longer taking them at night, so I was hopeful that my sleep would start to improve. Little did I know that things were about to change...
Saturday night I was able to sleep from 10:30 - 12:30 and then I woke up with a really strange feeling in my legs. I wasn't sure how to describe it to Rob, but at first it was more annoying than painful. It would be in my right calf, then move to my left knee, then move to my right knee, then to my left calf, etc. It just keep jumping from one leg to the other. Rob asked if it felt similar to restless leg syndrome. I told him no, that it kind of felt like a tightening in my leg. Rob called our primary care physician and talked to the on call doctor because we weren't sure what was going on. We weren't sure if I could be clotting, or if this was a reaction to switching to the Coumadin, or what. We were told that it probably wasn't a clot, but that we should go to the ER if the pain got worse.
I told Rob that I didn't want to go to the ER and instead got up and went in the living room to watch a movie because the feeling was too intense for me to sleep, but I didn't want to bother Rob. As I was in the living room, the sensation in my leg started getting more intense and more painful. Around 5:00 I came back into the bedroom to lay down because I was exhausted. After about 5 or 10 minutes of laying down, the sensation was so painful that I couldn't take it anymore. I woke Rob up and told him that I wanted to go to the ER.
We woke my mom up and told her that we were leaving and drove down to Baptist Hospital East. We checked into the ER at 6:30 and within 15 minutes I was taken to a room. As I laid on the hospital bed I felt as if my knees were about to explode. It was the weirdest sensation, but the pain was rather excruciating. It was strange how the pain had shifted from tightness in the calves to severe joint pain in my knees. The ER doctor came in and told me that they were going to take me for an ultrasound in both legs to make sure I wasn't clotting and would draw some blood to run some labs and see if they could figure out what was going on.
The ultrasound showed no blood clots, which was a good thing. The bloodwork showed that my INR level was at 1.4, which was higher than the 1.0 from Friday, but not up to the 2-3 that I needed to be in order to stop the Lovenox shots. The doctor said that my potassium level was a little low and made me drink a potassium drink before being discharged. He also called my rheumatologist to ask him if he thought the change in my steroid dosage might be interfering with things. The rheumatologist said no, he didn't think so, and to keep me on the 30 mg he had most recently prescribed. We were in the ER from 6:30 - 10:30, and during those 4 hours the pain in my legs would come and go. The times that it would come back would be a pretty intense pain, but it was nice to have periods of relief in between the pain. So basically the ER doctor said he wasn't sure why I was experiencing the pain and gave me a prescription for pain killers and sent me home.
The rest of Sunday was pretty rough. I had such strong joint pain in my knees that I was unable to walk. Anytime I wanted to move somewhere, either Rob or my mom had to help me walk. I wasn't able to do anything to help out with the kids on Sunday.
Monday was pretty similar to Sunday. I wasn't able to get around without having someone there to steady me as I walked. It was a very frustrating set back, and we weren't sure how long this was going to last, or what was causing it. The pain pills didn't seem to help either. They made me sleepy, but didn't take the pain away from my knees.
Tuesday April 10th I woke up feeling better and was able to move around on my own, but still felt the need to hold onto the wall to try to steady myself as I walked. My mom and the kids went with me to my appointment with the hematologist because my mom didn't feel comfortable letting me drive. My INR level was 2.1 so they told me I could stop taking the Lovenox shots and just continue with the Coumadin. I was so happy to get this news, and I know Rob was glad we could discontinue the shots too. The rest of Tuesday I pretty much felt like myself, but occasionally when I would walk I would feel as if one of my knees was about to buckle up underneath me. It was a relief to be able to walk and get around by myself again.
Wednesday April 11th was a pain free day and I was able to walk around again with just the occasional feeling that my knee was going to give out underneath me. So I don't feel comfortable carrying Micah around and I don't feel comfortable going up and down stairs. Hopefully my knees will continue to get better to where I'll feel comfortable doing those things again soon. I was able to get out to mid-week Bible study last night and it was great to see everyone.
I have a hematologist appointment this morning and then go back to the rheumatologist on Tuesday. The boys are at Rob's parents house until Friday afternoon, and my mom flies back to Dallas on Saturday afternoon. I am definitely going to miss having my mom here, she has been a great help to all 4 of us over the past few weeks. I am just continuing to take things one day at a time and appreciate everyone's thoughts and prayers.
The last two weeks have had their share of ups and downs and we are hopeful that I am continuing to make progress towards a recovery. Although some of the events over the past two weeks have left us wondering what new trials we might be facing in the future.
My first week home from the hospital involved a lot of new emotions. I was dealing with a lot of fatigue and sleep deprivation as well as the emotional roller coaster of learning that we were losing our baby. My mom was here that week and Rob stayed home most of the week and returned to work that Friday. My mom took care of Micah for the week and Rob's parents took Silas and Cullan so that I could try to get as much rest as possible. It turns out that resting was not as easy as we thought it was going to be. I was still taking 40 mg of steroids daily (20 morning and 20 evening) and they were making me have night sweats, continuously hungry, and unable to sleep. I was waking up every hour or so and would either have to get up and eat because I was hungry or I would have to get up and change my shirt because it was soaked with sweat. I don't think I got more than an hour of sleep at a single time during that first week at home.
On Thursday March 29th, Rob and I went to the hematologist and met with her in hopes of being taken off of the Lovenox shots and switching to the Coumadin pills for my blood thinner. She said that she had to have confirmation from my ob/gyn that I was no longer pregnant before she could do that. So we went to the ob/gyn that afternoon for confirmation. The hematologist also said she wanted confirmation from my rheumatologist that he wanted me to continue with blood thinners. So we ran into some phone tag problems and weren't able to get started on Coumidin before the weekend. I was really discouraged that we had to continue with the shots because they would burn every time I got one (two times a day) and my stomach was starting to get really bruised and several knots were developing underneath the skin.
Silas and Cullan came back for the weekend and it was so nice to get to see them again, but was also an eye opener as to how hard it was going to be for me to make the transition back to my "normal" life. Rob and my mom pretty much did everything to take care of all 3 kids and the housework while I continued to try and rest.
On Tuesday April 3rd, Rob and I went to meet with my rheumatologist, which turned into a 3 1/2 hour ordeal. He ordered a whole slew of labs and we will meet with him next week, on 4/17 to review the results. He said that there are still so many unanswered questions in his mind as to how I ended up in the hospital on 3/18 and what caused my hands and feet to look the way they did. He still thinks that the best explanation is that I had some sort of 'micro-clotting' that was happening in my hands and feet and that the best way to prevent it from happening again is to keep me on blood thinners. He said that I could possibly be on blood thinners for life, but that he will definitely keep me on them for the next 6 months to a year and then re-evaluate. He said that his fear is that if I come off the blood thinners then I may have another clot and next time it could be in my leg, or in my brain and I could have a stroke. So he would rather err on the side of caution.
We finally got the Coumadin transfer approved and I started taking Coumadin pills on Wednesday night. We didn't realize what a process it is to get regulated onto a blood thinner like Coumadin. So I wasn't able to stop taking the Lovenox shots because it takes several days for Coumadin to get into your system. I went to the hematologist on Friday and was told that my INR level needed to be at least a 2.0 before I could stop taking the Lovenox shots. On Friday I was a 1.0, so they sent me home to continue the shots until Tuesday when they could test my INR level again.
The rest of my second week home was pretty good and things were slowly starting to get back to normal. I was able to start helping around the house and help take care of the kids. There were certain things I still couldn't do, like pick up Silas, and I wasn't completely comfortable carrying Micah around, but other than that I was starting to feel better physically, even though I still wasn't able to get more than 2-3 hours of sleep at a time. Emotionally, I was still having a lot of ups and downs, but everyone kept telling me it was to be expected after everything I had been through. I was never in any pain during the week, just seemed to fluctuate between having energy one day and then being overtaken by fatigue the next. I figured that I still needed to find a balance between what all I was able to do/handle each day.
On Saturday, April 7th I thought I had reached a turning point. I was having a really good day energy-wise. We ate breakfast, did an Easter egg hunt for the boys, Rob's parents came over for a visit, and we gave the boys haircuts in preparation for pictures on Sunday. The one thing I was most excited about was the prospect of my first good night's sleep!! My rheumatologist had changed my steroid dosage to 30 mg in the morning instead of 20 in the morning and 20 at night. So not only had he lowered my dosage, but I was no longer taking them at night, so I was hopeful that my sleep would start to improve. Little did I know that things were about to change...
Saturday night I was able to sleep from 10:30 - 12:30 and then I woke up with a really strange feeling in my legs. I wasn't sure how to describe it to Rob, but at first it was more annoying than painful. It would be in my right calf, then move to my left knee, then move to my right knee, then to my left calf, etc. It just keep jumping from one leg to the other. Rob asked if it felt similar to restless leg syndrome. I told him no, that it kind of felt like a tightening in my leg. Rob called our primary care physician and talked to the on call doctor because we weren't sure what was going on. We weren't sure if I could be clotting, or if this was a reaction to switching to the Coumadin, or what. We were told that it probably wasn't a clot, but that we should go to the ER if the pain got worse.
I told Rob that I didn't want to go to the ER and instead got up and went in the living room to watch a movie because the feeling was too intense for me to sleep, but I didn't want to bother Rob. As I was in the living room, the sensation in my leg started getting more intense and more painful. Around 5:00 I came back into the bedroom to lay down because I was exhausted. After about 5 or 10 minutes of laying down, the sensation was so painful that I couldn't take it anymore. I woke Rob up and told him that I wanted to go to the ER.
We woke my mom up and told her that we were leaving and drove down to Baptist Hospital East. We checked into the ER at 6:30 and within 15 minutes I was taken to a room. As I laid on the hospital bed I felt as if my knees were about to explode. It was the weirdest sensation, but the pain was rather excruciating. It was strange how the pain had shifted from tightness in the calves to severe joint pain in my knees. The ER doctor came in and told me that they were going to take me for an ultrasound in both legs to make sure I wasn't clotting and would draw some blood to run some labs and see if they could figure out what was going on.
The ultrasound showed no blood clots, which was a good thing. The bloodwork showed that my INR level was at 1.4, which was higher than the 1.0 from Friday, but not up to the 2-3 that I needed to be in order to stop the Lovenox shots. The doctor said that my potassium level was a little low and made me drink a potassium drink before being discharged. He also called my rheumatologist to ask him if he thought the change in my steroid dosage might be interfering with things. The rheumatologist said no, he didn't think so, and to keep me on the 30 mg he had most recently prescribed. We were in the ER from 6:30 - 10:30, and during those 4 hours the pain in my legs would come and go. The times that it would come back would be a pretty intense pain, but it was nice to have periods of relief in between the pain. So basically the ER doctor said he wasn't sure why I was experiencing the pain and gave me a prescription for pain killers and sent me home.
The rest of Sunday was pretty rough. I had such strong joint pain in my knees that I was unable to walk. Anytime I wanted to move somewhere, either Rob or my mom had to help me walk. I wasn't able to do anything to help out with the kids on Sunday.
Monday was pretty similar to Sunday. I wasn't able to get around without having someone there to steady me as I walked. It was a very frustrating set back, and we weren't sure how long this was going to last, or what was causing it. The pain pills didn't seem to help either. They made me sleepy, but didn't take the pain away from my knees.
Tuesday April 10th I woke up feeling better and was able to move around on my own, but still felt the need to hold onto the wall to try to steady myself as I walked. My mom and the kids went with me to my appointment with the hematologist because my mom didn't feel comfortable letting me drive. My INR level was 2.1 so they told me I could stop taking the Lovenox shots and just continue with the Coumadin. I was so happy to get this news, and I know Rob was glad we could discontinue the shots too. The rest of Tuesday I pretty much felt like myself, but occasionally when I would walk I would feel as if one of my knees was about to buckle up underneath me. It was a relief to be able to walk and get around by myself again.
Wednesday April 11th was a pain free day and I was able to walk around again with just the occasional feeling that my knee was going to give out underneath me. So I don't feel comfortable carrying Micah around and I don't feel comfortable going up and down stairs. Hopefully my knees will continue to get better to where I'll feel comfortable doing those things again soon. I was able to get out to mid-week Bible study last night and it was great to see everyone.
I have a hematologist appointment this morning and then go back to the rheumatologist on Tuesday. The boys are at Rob's parents house until Friday afternoon, and my mom flies back to Dallas on Saturday afternoon. I am definitely going to miss having my mom here, she has been a great help to all 4 of us over the past few weeks. I am just continuing to take things one day at a time and appreciate everyone's thoughts and prayers.
Wednesday, March 28, 2012
My Hospital Stay March 2012
Many people have been following my somewhat ‘cryptic’ messages on facebook, trying to piece together what has happened to me. We still don’t have all of the answers and never will, but I’ve tried to piece together what happened so that everyone will have a better understanding, and Rob and I won’t have to repeat ourselves so much.
Wednesday March 14th I took the kids to the zoo and everything seemed like a normal day. The weather was a lot warmer than normal, but it was an enjoyable day and Rob had taken the day off, so we came home to have lunch with him. After lunch I felt exhausted, but didn’t think anything about it. I got all of the kids down for naps and spent the rest of the afternoon in the kitchen doing some meal prep for the rest of the week. The rest of the day seemed to go fine until we got to Bible class that evening. My head and my neck started hurting and I just didn’t feel quite right. In the middle of class I took Cullan down to the nursery and something just told my body that I knew I wouldn’t be able to carry him back up the stairs to class. So we tried to load up and leave as quickly after class as we could. I got home and took some Ibuprofen and went to bed.
Thursday March 15th, my neck and my head were hurting me all day. Rob was back at work and somehow I managed to make it through the day with all 3 kids. I tried Ibuprofen again Thursday and had no relief. Rob got home after 8 pm Thursday evening and I tried switching to Tylenol and going to bed. Still no relief and no sleep.
Friday March 16th, sometime during the middle of the night Thursday/early Friday morning my fingers started itching while I was trying to sleep. When I got up Friday morning I saw that I had some red bumps starting to form on my hands and wasn’t sure what had triggered them, but they were starting to itch. When I got in the shower I realized that the bottom of my feet were extremely itchy as well. I couldn’t stop rubbing them against the floor of the shower. I put lotion on my hands and feet to keep me from scratching and irritating them further. Rob took the day off to watch the kids while I tried to rest and get some sleep. I wasn’t actually able to get much rest on Friday because I couldn’t get my head and neck pain under control.
Saturday March 17th, first thing Saturday morning we decided to go to the urgent care center to get some pain medication and something for my hands and feet. By now the hands and feet are of little/no concern to me because they are not bothering me. The constant head/neck pain and 3 days of little/no sleep were my main concern, as well as having a fever of 101.3F. The staff at the urgent care center decided that I had an infection and gave me an antibiotic, a pain killer, and an ointment for my hands. I don’t remember much about the rest of Saturday, only that I don’t remember feeling much relief from the pain killer.
Sunday March 18th by now I haven’t slept in days and I have no pain tolerance left whatsoever. Rob couldn’t get me to eat anything and called our primary physician again to see what we should do. When they called back they wanted to know what my temperature was. It was now 103.9F, so they told Rob to take me to the hospital. I don’t remember a whole lot about the hospital that day. We went to Baptist Northeast since it’s the closest hospital, and I was back in a room by myself most of the day. They did a spinal tap to check for spinal meningitis, which came back negative. They did a blood pregnancy test, which came back positive. I think this is the point when the hospital staff was ready to get rid of me and transfer me to Baptist East. They called my ob/gyn at Baptist East and started getting things ready for a transport. In the meantime, Rob had taken the kids home to give them some dinner and pack some things for me because we knew that I was going to be observed overnight. Rob was surprised to find out that an ambulance transport was being arranged to transfer me to Baptist East. I remember begging the hospital staff to give me something to eat before I was transferred. I remember them finally bringing me a tray of food, but I have no idea what they brought me. I just scarfed it down and waited for my ride. So I got my first ambulance ride down to Baptist East, which was pretty uneventful.
Sunday March 20th/Monday March 19th - I was immediately taken to the ICU at Baptist East and was greeted by 5-6 nurses and a doctor. They started getting me settled into my room and ordering tests. The doctor told me that I was getting ready to endure a rough 24 hour period of no sleeping, eating, or drinking. They were going to be running a lot of tests on me and that it would probably be several weeks before I would be released from the hospital. Luckily, one of my nurses took pity on me and started feeding me ice chips because my throat felt so raw that I couldn’t even answer the doctors questions. I don’t really remember a whole lot about the next 12 hours or so. I know that Rob arrived around 9:45PM and started answering their questions, and I know that they took a couple of biopsies of the irritated skin on my left hand, as well as put a central line in my neck so that they could easily draw blood for all of their labs/tests and so that they could quickly administer any medicines. The ICU doctor explained to Rob that they weren’t sure what was causing my condition, so they were treating for all of the several causes that seemed to be a potential match; Rocky Mountain Spotted Fever, Bacterial Meningitis, general bacterial infection in my blood, and Lupus (or a similar vascular tissue issue of some sort similar to Lupus).
I’m not sure who all was brought in as a consult during this time. I know that along with the ICU docotor my ob/gyn was involved, my nephrologist, a hematologist, a dermatologist, and a rheumatologist. They started asking me a lot of questions about my Raynaud’s syndrome and about the rheumatologist that I had seen back in 2006. I didn’t bring any of this up, but Rob had mentioned my Raynaud condition to them, so that gave them some additional info to go on. Back in 2006 I was referred to a rheumatologist and was told that I have Raynaud’s syndrome, which is a condition where my blood vessels constrict and restrict blood flow to the extremities (mainly fingers and toes). I’ve been dealing with some Raynaud’s flare ups over the past few years, but nothing too extreme. During 2006 I was also told that I had a high ANA (anti-nuclear antibody) count, which is indicative of lupus. The Raynaud’s and the high ANA count are both lupus indicators, but the other lupus indicators were negative in 2006, so there was never a real diagnosis. With everything that was happening now, the first thought was that my lupus tendencies has been lying dormant for about 6 years and were now triggered by something. The first thought was that the “trigger” was the pregnancy.
My mom flew into town first thing Monday morning as well as my brother David. Rob’s dad and our brother in law Neil had come over to watch the kids Sunday night/Monday morning.
Tuesday March 20th - After days of testing, the lupus theory wasn’t completely confirmed. The second ICU doctor saw right away that my conditions did not match Rocky Mountain Spotted Fever, so they stopped treating me for that. They also said that they had found no indications of any bacterial infections, so spinal meningitis was also ruled out as a possibility. As such, they took me off of the remaining antibiotics they had been administering. I had the same two indicators that I had previously in 2006 – Raynaud’s and a really high ANA count, but most of the other lupus indicators came back negative, so the doctors were kind of stumped.
The ICU doctor explained to Rob that only for patients with vascular tissue ailments, they administer 10 times the normal dose of steroids for 3 days, to get the body back on track and to keep it from attacking itself, then they taper down to a regular dosage thereafter. The steroids were obviously helping to get my body back to normal, my neck and head pain was still kind of severe, but my hands and feet were starting to slowly improve. I was given morphine for the first 2 days and had really bad hallucinations. I asked to be taken off of the morphine and was put on another type of pain killer instead. The hallucinations went away, but I still had a hard time turning my mind off so that I could sleep.
Tuesday morning my blood pressure suddenly dropped drastically to approximately 48/35. A cardiologist team was rushed in, I was put on 2 different types of blood pressure medications, and I was closely monitored by them over the next few days as they tried to stabilize my heart rate and blood pressure. They did an echocardiogram that Tuesday morning, which indicated some heart muscle irritation, but things looked better when they repeated the echo test on Friday.
On Wednesday my ob/gyn performed an ultrasound to determine the extent of my pregnancy, which was considered to be at 5 ½ weeks at the most. Nothing conclusive was discovered and another ultrasound was to be scheduled in the next week to week and a half.
By Friday morning, both blood pressure medication IV drips had been tapered down and eventually eliminated, and by Friday evening, I had made enough progress to be transferred out of the ICU and into a vascular disease recovery room, usually reserved for post surgery patients. Over the next few days all of the various doctor groups continued to monitor my progress and slowly started making changes so that I could switch over to pill meds instead of IV meds with an ultimate goal of coming home.
I was released from the hospital Monday evening around 8:20PM. I am currently taking steroids to keep the lupus symptoms in check, am still on a heart medication to help continue strengthening my heart muscle, and a blood thinner to help prevent what the rheumatologist has called “micro clotting” in my blood. The blood thinner has been a big issue because of the pregnancy and what types I am allowed to take. So Rob was shown how to give me a shot and we were discharged with the understanding that he was to give me blood thinner shots twice a day.
Tuesday March 27th, I started my period, so the pregnancy wasn’t going to continue. Obviously we are saddened that this pregnancy is ending (6 ½ weeks), but we can also see how it is God’s plan for us right now. It makes my treatment options more black and white, because there is no longer a baby involved in the decision making process. So in that sense, there is some relief, to know that all of our decisions can be made with my best interest in mind and not having to juggle between me and the baby. On the other hand, we presently think that it is way too risky for me to try and ever get pregnant again, so we are adjusting to that realization as well, which is a hard concept for me to grasp at times.
We want to thank all of you for your prayers, cards, calls, visits and food. You have no idea how much you have helped us to get through this difficult time. I still have a long road to recovery ahead of me, with lots of upcoming doctors appointments as we still try to resolve things and regulate my levels. I will definitely be having a kidney biopsy in the near future, and maybe some other tests as well. It helps knowing that all of you are out there praying for us and keeping us in your thoughts. We love you all!
Subscribe to:
Posts (Atom)