Saturday, January 24, 2009

I don't feel well. I really wish this would go away.

Last night, as I was getting ready to leave work, my left shoulder went into spasm. I'm pretty sure that it's due to the fact that I can't really use my left arm and the muscles are trying to compensate. I can't turn on the faucet with my left hand or even flush the toilet. My legs are getting more tingly and just walking down the stairs to the basement is exhausting. I'm getting so frustrated.

I don't know what else to say except that I just really wish this relapse would be over and done with.

Wednesday, January 21, 2009

Only two weeks until our trip to the Bahamas

So, I had my fifth (and final, for now) day of treatment today. It feels like my symptoms are still getting worse. I thought that I would see some improvement by now. Currently, the symptoms are as follows: my legs are always numb up to the knee, periodic spasticity in my thighs, the "MS hug"-a banding of numbness around my midsection from the bottom of my ribs all the way to the top of my thighs, tingly right hand, no use of my left arm, and some itching and neuropathy on the left side of my neck.

We have a vacation at Sandals in the Bahamas starting on February 3, just under two weeks away. Normally, I would be very excited. We planned this trip in August thinking that it would be a great time to get away from the cold. This certainly made sense at the time. However, the prospect of trying to travel when my body is not working this kind of discouraging. We've called Sandals to see if there's a chance that we can postpone our vacation. We talked to several people from the resort to see what they could do for us. Each person asked us if we had purchased travel insurance. Unfortunately we did not. We requested an exemption due to medical circumstances. The first person we spoke with told us that change our reservation it would cost $200 per person to change our sandals booking and $150 per person to change our airfare reservation. This did not seem like a good option so we asked to speak to their supervisor. The person that we were directed to give us the same information. Again, we tried to climb the ladder ever given the same spiel. We even asked if a letter from my doctor would help. No such luck. I realize that we should have purchased the travel insurance. But you think that in the interest of customer service Sandals try to see what they could do for us. I thought that at this point we were SOL. I was wrong (maybe). I was talking to my parents last night, telling them about our experience. My mom offered to called Sandals and see what she could do to help. She contacted them today and was given the same statement. Long story short, she managed to get a supervisor to agree to help. My mom was told that if we could get a letter from my doctor explaining my condition and the current circumstances, the supervisor would bring it up with her manager to see if we could get the change fees waived. We're not there yet, but at least it's a step in the right direction. Think positive thoughts for us, please.

Hopefully, the IVIG treatments will start to work. The plan is for me to call my doctors in a week to update them on my condition. They decided to keep the PICC line in for the week in case I need another treatment given the difficulty of the initial placement.

I guess at this point the waiting game. I'll keep you posted...

Monday, January 19, 2009

Trying to see the end, cont'd

After my reaction to medication on Thursday, I was asked to call my doctor's office first thing in the morning on Friday. After speaking with them, we decided that the reaction could be prevented by pre-medicating with Benadryl and running the IVIG at a slower rate. Sure enough, this method proved successful. I made it through my treatment with no ill effects. Now I had the weekend off. I was hoping to see some progress in the positive direction, but it seemed that my left arm was now showing more symptoms. I had less feeling in my hand and my arm did not seem to work as well. Still, I tried to remain optimistic. However, waking up on Sunday morning did not seem to bring improvement. My left arm felt detached from my body. I would try to steady myself using my left arm against the wall when suddenly my arm would slide, giving me the sensation that my whole arm had gone through the wall. In fact, last night I was trying to take my oatmeal out of the microwave, which is located on top of our refrigerator. With no sensation in my left hand and limited sensation in my right hand, I was having difficulty holding the bowl and managed to tip the bowl, depositing half of my oatmeal on the floor.

This morning I woke up again hoping to see some results moving in a positive direction. Unfortunately, no such luck. I went in for my treatment at 9. Again, I was pre-medicated with Benadryl and the IVIG was run at a slower rate. And again, no reaction. At least not to the IVIG. However, the Benadryl did make me rather sleepy and I took an hour and a half nap.

I can't say enough good things about the nurses at PPR. They are the most wonderful and caring people I could ask for to be taking care of me in this difficult situation. Just today, I was told that one of the nurses that was on duty on the night I had my reaction had called to see if I was doing better. I have had so much support during this hard time for my coworkers, my husband's coworkers, our families, as well as a lot of my Facebook friends. It really means a lot to me - I can't thank you enough.

Sunday, January 18, 2009

Trying to see the end

Right now I'm in the fifth week of my relapse. It is January 17th, and I'm still waiting to see some improvement. It seems that every day there seems to be a new symptom. I have already had two rounds of steroids - the first being three days and the second being five days. Unfortunately, neither of these treatments have worked.

The current treatment is IVIG (Intra Venous Immune Globulin). For immune deficiency where the body does not make enough antibodies, IVIG supplies them. For autoimmune disorders, there is a abnormal autoantibody being formed which is inactivated by IVIG. Patients with autoimmune disorders also are deficient in antiidotype antibodies. IVIG has antiidotype antibodies and thus helps improve the patients condition. Antiidotype antibodies are normal antibodies which are produced in the absence of any antigen. They are capable of inactivating many different types of antigens. IVIg has a higher concentration of antiidotype antibodies.

Hopefully it should start working soon and we can go on a vacation to the Bahamas in two and half weeks. If this treatment doesn't work then they'll have to try plasmapheresis. Plasmapheresis is a process where I have a central line put into my chest and admitted to the hospital for an unknown length of time. I'm hoping that we have luck with this current process but I would rather not spend time in the hospital. The symptoms of this current relapse started back on December 4th with numbness in my feet. I called the doctor and started the first round of treatment of three days of intravenous steroids. Unfortunately, this treatment in work and my feet remained numb for the rest of the month. As time progressed into January, my symptoms begin to get worse. The numbness in my feet had traveled up my legs. I was also feeling it in my hands in around my rib cage. After speaking with my doctors, we decided that another round of treatment with steroids for five days was in order. I've been warned that sometimes with steroids the symptoms can get worse before they get better. However, my symptoms were getting significantly worse at this point - about half a week after the steroid treatments had finished. At this point, the doctors hadn't seen me since December when it was only my feet that were feeling the symptoms. We decided that it would make sense for me to come into be evaluated again. This day fell on my husband's birthday, Wednesday, January 14th. Lucky him! After this evaluation, my doctors decided that it would be a good idea for me to try IVIG therapy. I'd never tried this treatment so I did not know what to expect. Boy, was I in for a surprise on my first day!

I was told that I would be receiving a call from the doctor's office with the schedule of my appointments for the IVIG infusions. By the end of the day on Wednesday, I hadn't received a phone call. I called to check in to make sure I hadn't missed something and I was told that I would hear from them in the next couple of days. So, I went to work on Thursday none the wiser. At around 11 o'clock, received a call from my doctor's office. They told me that they had received a call from PPR - Post Procedure Recovery asking if I was going to be coming in for my appointment. I let the doctor know that I hadn't received a call telling me what my appointments were going to be, but that I could go up to the hospital right away. I called my husband and we made our way up to the hospital as quickly as we could.When I arrived at PPR, I was told that since my appointment had been for 10 AM, the IV nurses had already been to PPR to insert the PICC line. The IV nurses have a very busy day and since I was not at my scheduled appointment they had to move onto other patients. So the day wasn't a complete loss, one of the PPR nurses was working as hard as she could to fit me into the IV nurse schedule and found a spot at 1:15. I'd arrived at noon, and was agreeable to waiting an hour. The insertion of the Picc line is an involved process and takes about 45 minutes. PICC stands for Peripherally Inserted Central Catheter. This means that the catheter is inserted in your arm near your elbow and is threaded up your vein into your heart. Because there are many junctions along the way, it is possible for the catheter to become misguided. An x-ray is used to ensure that the catheter hasn't found its way up the neck. Of course, developing an x-ray is not instantaneous. There is typically about an hour wait to find out the results. Unfortunately, the end of this hour coincided with a shift change. This resulted in a delay in reviewing the films. When the films were reviewed, it was discovered that the catheter had gone up to my shoulder and then turned and come back down my arm. So, the IV nurses were called back to reposition the catheter. After repositioning, though, I had to have another x-ray. This involved another delay of an hour for the developing and reviewing of the films. Finally the films were reviewed and the nurses discovered that the catheter was placed as it should be. What a sigh of relief! Everything was all set and I could start my treatment. Only six hours later...the time was around 6 or 6:30 and my treatment was about to start. Because this infusion involves a substance that binds to antibodies in your body, it is important to know that you can tolerate it. The infusion starts off slowly and is sped up about every 20 minutes or so. With every increase in the rate, the nurse checks that everything still feels okay - no shortness of breath, no chills, no headache - to name a few. I felt fine after each rate increase. Eventually, we have made it to the maximum rate of flow. The nurse checked, and I still felt fine. However, after about 20 minutes at the maximum rate, I started to feel a bit strange. My muscles started to tense up. It was getting harder to breathe. And, I started to get the chills. Normally, I run quite hot so to be having chills was rather out of the ordinary for me. I had already called my husband, Jamie, to come pick me up from the hospital. However, by the time he arrived, I was fully into the reaction that I was having to the medication.It was becoming harder and harder to breathe. My entire body was in spasms. I was shivering so badly that they had put three blankets from the blanket warmer on top of me. This reaction had started between the time that I had called Jamie and the time that he had arrived to collect me. He was a bit startled to walk around the corner and see me shaking and short of breath. The rate of infusion had been slowed already, but at this point it was decided to stop the IVIG. Unfortunately, this did not stop my reaction. I was given Benadryl to try to counteract the issues I was having. There was a short wait and this did not seem to be having the desired effect. In fact, I think that it it was becoming more difficult to breathe. It was at this point that the nurses decided to inject me with epinephrine. All I remember at that point, was 4 faces peering down at me waiting for the injection to take its effect. I don't remember much at this point so I'm taking what I've gleaned from my husband's recollection. Apparently, shortly after this, I developed a severe headache. I now truly understand what is meant by the expression "splitting headache". It honestly felt like my head was going to split in two. Along with a headache, came the feeling of nausea. For the next 15 minutes, probably, I drifted in and out of being awake feeling like my head was going to split open and/or I was going to throw up. Once the breathing was under control, I was given some antinausea medication. This helped a little bit but when I was faced with the thought of swallowing a couple of Tylenol, I realized that I still felt pretty sick. Fortunately, they were able to give me an injection of a painkiller. At that point, all I wanted was to go home, crawl into my own bed, and go to sleep. Thankfully, from Jamie's point of view, the nurses were not quite ready to let me do that. Eventually we left the hospital at 9:30 PM, finally ending what had been a very long day for me. The next day, Friday, went much more smoothly. But, more about that later...