Just another day in the ER!

For some time now, I have been wanting to make a post about how I am doing since I started my IVIG treatments, so I will do that here and bring you up to speed on what happened today as well.

Monday, August 15, at 6:30 AM, I found myself in the ER of my local hospital. I was there primarily because I was having a very difficult time breathing. This had all started last Thursday when I noticed that I was having trouble speaking. My voice was hoarse; for the last year I had been having bouts of hoarseness, so I was not overly worried. Friday, I was still hoarse and noticed that I was having problems breathing—nothing major, just that it took more effort than normal to breathe. Again, this was something I had been dealing with for several years, so I noted it but did not do anything about it. Saturday, I was feeling worse and having a very hard time talking. Sunday, it got very bad; I noticed that when talking or eating, I would get very short of breath, and I knew that I would have to contact my doctor on Monday to see what, if anything, could be done.

I was concerned because I thought the breathing and speaking problems might be related to my cancer. Recently, my blood work was indicating that the cancer was growing again, and these problems might be the result of the cancer pressing on the voice box or the windpipe.

When I got up on Monday, I was much worse—it was a real effort to breathe—and after thinking about it, I decided not to wait for my doctors and go straight to the emergency room, thinking they would most likely send me there themselves.

It turns out that 6:30 AM is a good time to go to the ER. I have now been to the ER several times early in the morning and never found a wait. In fact, this time I was the only person there.

I was quickly taken back to a room and hooked up to the EKG, blood oxygen reader, and BP cuff.

Then began the first trial of the day. I had chosen to go to the ER in my town furthest from my home because it was associated with the infusion center where I get my IVIG treatments. I have learned so much since those first IVIG treatments that it scares me. One of the most important things that I have found is that there are several manufacturers of IVIG, and each one makes a slightly different product. This means that once you start taking Gammagard (the kind of IVIG I get), you should stay with that, since you might have a different reaction to other manufacturers’ products. I happen to know that the ER closer to me uses a different type of IVIG, so I went to this ER basically because I like the flavor of IVIG they serve better than the closer site.

What I did not know about the ER I was visiting was that they have students working for them—student paramedics—and it was the job of one of these students to install my IV! Unfortunately, I am a very hard person to install an IV on. I have had nurses with years of experience fail to get one set up. So this (OK, I’ll say it) kid decided first not to listen to me when I showed him the sites that are normally used and instead decided to stick me in my right hand. After a few minutes of his digging around in my hand, the nurse pointed out that he was not in the vein at all and needed to start on a different site. This time he chose one that I recommended, right in the middle of a line of IV scars I have that make me look like a junkie. But again, he failed to install the IV, and because it was shift change, he had to give up. Fortunately, after the shift had changed, a nurse came in and got me set up in one poke without any pain. Then blood was drawn and sent to the lab.

After quite a wait, I realized that—shall we say—nature was calling me. But I had all kinds of tubes and wires sticking out of me, that is, all kinds except the call button. I did my best to find it but could not. One of the biggest problems my condition gives me is something called brain fog. That is when your brain seems fogged over and cannot think clearly, and often you just sit there staring. Well, I was in a bad brain fog now, but I was smart enough to come up with a creative answer to this problem: I did not have enough air in my lungs or voice to yell for help, so I used my iPhone, called the hospital, asked for the ER, and told them that I was in room 22 and could not find the call button. The way they acted, I think I was the first person who had ever managed to remove themselves from this dilemma using that method.

Finally, my ER doctor came in to talk to me for a bit, but then someone called out his name, and he ran from the room. I think the person in the next room had had a heart attack. I kept hearing a computer voice saying “Shock administered.” About 20 minutes later, he came back, and we started over.

I told him that I thought I had two different problems going on—one was the breathing and hoarseness problem, the other was a relapse of my Hashimoto’s encephalopathy. I thought the breathing problem was not related to my lungs or my heart. I did not feel like I was not getting enough air, but that it took a lot of effort to get the air I was getting. I thought there might be something wrong with my throat, especially since the hoarseness and the breathing problems seemed to be related. Also, recently, my blood work had shown an increase in my TG level, which indicated that the cancer was growing and might be causing the problems.

I also told him that I was on week seven of my treatment with IVIG. The last time I reported on the IVIG, I was on the second day of treatment. The plan that had been forced on me and my doctor by the insurance company was that I would have the IVIG four times in one month—day 1, day 2, day 5, and day 12—and then wait four weeks before getting another treatment. After about a week from the fourth treatment, my symptoms started coming back, and by two weeks, I was completely back to where I started. I could not open my left eye, my energy was gone, and I was having problems walking and thinking. I called the doctor; he was able to get the insurance company to give me the original plan. I would start over—have three treatments the first week, then six treatments once a week, then go to a treatment every other week for six weeks (three treatments), then go to every month and see how it goes.

Frankly, it was not going so well. In the six weeks that I had the treatments, two weeks I relapsed back to my eye not opening; one week I had problems walking. Weekly was not quite working, and now, for the first time, I was going to try for two weeks between treatments. Since I was getting my treatments on Mondays, today would have been my day off treatment—but I was completely relapsed.

The doctor, as doctors do, took all this information and disappeared. About an hour later, the nurse came in to tell me that I was going to have an MRI of my brain and neck to see if they could see anything wrong. That was done and found nothing. I was kind of relieved by that. I had been worried that my cancer had mutated from papillary/follicular thyroid cancer to anaplastic thyroid cancer. Papillary/follicular is normally slow-growing and can be treated with some success. Anaplastic is fast-growing and very dangerous. One of the main symptoms of this type of cancer is rapid onset of breathing problems and hoarseness. Then they find that you have a huge mass in your neck and a few weeks to live. The clean MRI means that whatever is causing this problem, it is not that—and that we still need to find where the cancer is growing so we can treat it. But as I said in my last update, those tests will not be until late September.

After the MRI, the doctor came to see me to let me know the results—that he did not know what was causing my problems and that he was going to let me go home. He also wanted to know if the breathing treatment had helped. To these questions I asked, “What breathing treatment?” It turned out that he had ordered a breathing treatment, but it had not been administered yet. So he said he would be back after the treatment. I also asked if it was going to be possible to get another IVIG treatment (I know that my insurance had approved once a week until December, so I had the approval if they wanted to do it). He told me he would check with the neurologist to see if that would be OK.

While I was waiting for the treatment, a person came in from the X-ray department to let me know that it was time for my chest X-ray—another test that had been ordered but not given until after the doctor tried to get rid of me.

Instead of helping me, the breathing treatment made things worse. I was in pain, and with every deep breath the pain got worse, and the treatment required a lot of effort.

Finally, the doctor returned and told me that he could not speak to my neurologist since he was taking time off to be with his wife, who had just had a baby, but that his associate had said we need to stick with the treatment plan. He also told me that all the tests showed no reason for the problems I was having (man, have I heard that before) and that he needed my help in deciding what to do. He could release me to go home, or if that was not safe, he could admit me to the hospital. I asked him what they would do for me while I was in the hospital. He thought and said he would not be opposed to giving me a course of steroids. I told him that I felt that if he would give me 1000 mg of Methylprednisolone, most of my symptoms would relieve themselves and I could go home. This is the treatment I had been taking for nearly two years. It was not as effective as it once was and did cause some flu-like symptoms and other problems a few days after treatment (that’s why we stopped giving it to me).

Well, they gave me the treatment, and it worked as advertised. Within five minutes of the treatment starting, I could open my eye. My breathing is much better now, but not great.

So they released me, and I am home wondering what will happen next.

I will try and see my primary care doctor on Wednesday.

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