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.  

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.