Tuesday, October 13, 2009

Imelda's closet

You know how they say that when something bad happens, you are waiting for the other shoe to drop? Well, I have decided that my family must be residing in the closet of Imelda Marcos, since shoes just keep dropping.

Since I have been home this time, my appetite continued to be non-existent. I have also been dropping weight like crazy - like 27 lb in 2 1/2 weeks. I can definitely stand to lose that weight and then some, but it's too fast. Plus I have been feeling nauseated all the time, and have had to force myself to eat a little bit. The not eating resulted in weakness, which then made me more nauseated, so it has been a vicious circle.

Not that I have been up and about much... getting up and standing for any period of time was causing me to feel lightheaded and dizzy. One night last week Jim suggested that I take my blood pressure reading - genius! I did so and it was quite low. After that I quit taking my hypertension medication so that it wouldn't go TOO low. And my pulse has been high, running in the 110s and 120s at rest and up to 130 if I had just been up and about.

I tracked my bp readings all day last Wed and called Dr. O's office on Thursday. Lori, 'my' NP was not available, but the NP I spoke with was very helpful. She asked me a ton of questions and was very concerned about my rapid weight loss. She recommended trying to eat small amounts of food every couple of hours, and wanted to have a bunch of lab work done. She offered to fax an order somewhere here in Cleveland, but instead I wrote down all of what she wanted done, and emailed the list to Dr. Rini. He had his nurse enter the order so I was able to go to have the blood drawn.

On Friday I was still waiting for results when Jim called me from work. He had bad news - he'd just been informed that he was laid off from his job. He couldn't spend time giving me details since he had to clear out his office, so I had no real information about the situation until he got home. I was stunned by the news and then really upset. What happened was that some of the work his group does, to do with data security and storage, is being outsourced. So it was decided that four people are no longer needed in his group, and Jim had the least seniority of the four. Luckily they are being generous with severance pay, and he has leads out already, so I am trying to tell myself that something better will come of this. It's been a big blow to his self-esteem but hopefully he'll pull himself out of it soon.

While I waited for him to come home, I got a call from Dr. Rini's office. They had my bloodwork results and my thyroid was off. I have been told since I was pregnant with Carly that my thyroid has been low-normal and that eventually I would be hypothyroid. So imagine my surprise when I was told that my number was extremely high! They made me an appt with an endocrinologist for this coming Friday, 10/16, the first they could get. And they sent my results down to Columbus along with information about my appt.

I went online to look up hyperthyroidism and wasn't sure what to think... one of the causes could be a nodule, either benign or cancerous, on my thyroid. This was an upsetting notion to me, of course. My mother in law had hyperthyroidism as well, and told me that it can also be caused by a big stress to the body, which I definitely have had. I understood that but still felt nervous... then one of my kidney-onc list members told me that HDIL-2 can cause thyroid changes. So let's hope that is what it is.

By Saturday I was feeling worse... really shaky on top of everything else. Jim was really concerned so we called the Clinic's advice nurse line for help, late Saturday afternoon. The nurse was very kind and helpful. She agreed that it looks like hyperthyroidism is my problem. According to my symptoms, she recommended we go to the Emergency Room at the Clinic - she thought maybe there would be an endocrinologist on call so it would be better to go there than to one of the closer community hospitals.

So, we packed up the girls to have a sleep over at Grandma's and headed downtown. We got to the ER at about 8:30 pm. They told us they were "slammed" and the waiting room was busy. We were called back to a room at about 10:00 pm and the true waiting began. The first person to see us was a resident from Neurology - must have been on an ER rotation. He asked me what was going on, then decided he should go read my history first. Took him a while to come back; Jim commented that after reading everything, his head exploded! But he did return and said that they would draw blood. After that it's a dull blur; I told him that I have a medi-port so I didn't want an IV or blood draw from my arms. Next thing I know, a clinical tech comes in to do venipuncture. She went to tell the nurse about my port. Then another tech came in to do venipuncture. Finally the nurse was free and she was wonderful. She took care of everything efficiently and with kindness. In the mean time we had been told that they were going to give me a beta blocker to bring down my pulse. Then I was told I would be hospitalized until an endo could see me. This upset me a lot - how come the day before I was basically told I would be fine for a week until I saw the endo, and now I needed to be admitted? After consulting with hem/onc and endo, it was decided that the beta blocker should help me enough to go home. So the nurse infused my line with a beta blocker and sure enough, we watched my pulse go down right on the monitor. The nurse said she'd be back shortly to check on me but then wasn't. At some point around 3 am Jim noticed that my IV fluids bag was empty, so I hit the call button. It took like 10 min for them to answer!!! I have never had that happen. I told them I needed my nurse because my IV was done and was told "no problem". As of an hour later, she still hadn't appeared. I hit the call button again, and again 10 min later. It was incredibly frustrating. What if I was in that room alone and had coded? At some point they replied to my call, by shutting off the call light!!

The 4:00 hour brought some activity. I had sat up at this point and noted that my pulse was back up to 120 on the monitor. Then someone came in and said they were preparing my discharge papers. What the hell?!? The supervising doc came in and explained that because my pulse had initially gone down, the beta blocker was successful. They would be giving me a prescription for a higher dose of beta blocker to take at home. She also explained that our nurse had been tied up with a particular patient situation for a couple of hours. We told the supervising doc that we weren't upset with the nurse, but with the fact that nobody answered the call light. She agreed that was a problem and noted that there were several issues that had come up that evening that would need to be addressed.

My nurse came in to take the line out of my port, etc. and was extremely apologetic. We felt bad for her; she was wonderful with us but we understood that she couldn't be in more than one room at a time. However, this is why I LOATHE going to the ER. Bleah.

We finally got out of there at about 5am and went home to sleep. The girls were brought home by Grandma about 11:00, after PSR, so I didn't get a lot of sleep.

I started the beta blocker prescription that evening and it has helped a lot. As of this morning, my pulse was 78 and my bp was 105/67. And, I am getting my appetite back. Now, if I can get my energy and stamina back, I will be ME again.


sherri said...

Oh my. Glad to hear you're on the mend. I hope the new meds will help you feel more like yourself. I'm sorry to hear about Jim's job. Hopefully he'll find a position that suits him well and you can have a more diversified bread basket. Feel better L.

Barbara said...

Oh Liz, you guys do NOT need job stress on top of everything else. Continued PVs and prayers and everything else that the new meds are beneficial and that "all this bad stuff" (to quote my kids) ends soon. {hug}

Deborah said...

Wow, when Jim said the night in ER was quite a debacle he sure wasn't kidding. You've been through the ringer and back and then through it again. Once again, I'm amazed that you're able to give such a thorough account given your strength at the moment. I take it as testimony to your inner strength. Just know we're thinking of you.

Natalie said...

Oh Liz, I've not read your blog in a couple of weeks, and I'm awfully sorry about all those "shoes". You're having an especially tough row to hoe right now, and I'm hoping that it gets better. What a frustrating ER visit - it seems unimaginable to me that they'd ignore the call buttons like that; that's just awful. I hope Jim finds a new job which will be more secure and enjoyable, and that your job stress worries will dissipate quickly. My heart, prayers and thoughts go out to all of you.