Sometimes I Get Depressed

Please pardon my absence. The past three months have been busy, but enough of that - it's time to blog again.

As of my last post, I'd experienced a rejection episode and was working with my docs to recover from that. Although I expected to have all that behind me by now, some of the challenges continue today. My blood work results are finally beginning to show real improvement, except that my bilirubin level still is not in the normal range.

It's taken a mountain of medication to get to this point. I've stopped, started and adjusted more meds than I care to count. Although I was initially expected to have discontinued the prednisone by now, I continue to take a small dose daily. I'm also taking CellCept. Additionally, my potassium and magnesium levels are low and I'm taking meds for that. In a nutshell, taking meds is like eating a small meal. And then there are the 4 or 5 insulin injections daily...

This frustrating regimen, which has been VERY slow to work, combined with the stress of the holidays has left me blue. I'm depressed. I hate feeling like this: In fact, last week I was in tears for several days. What the... ?! This week I was determined to turn the corner, so I created a "to do" list each day. Every item I crossed off was an accomplishment (something I had control over!) and the sense of satisfaction has been very helpful. Tomorrow I'm going to get a pedicure as a reward. I'm also going to try to get a little exercise.

I'm also going to do more blogging. A number of interesting research projects have recently been published and as I read up on them, I'll share what I learn.

Photo by Mattox

I am the Ringmaster

Oh, for crying out loud! I KNOW I need to be my own healthcare advocate, so shame on me for letting this happen. Live and learn ...

In my last post I described my recent flurry of doctor visits - four doctors in one week - and each made changes to my medications. These doctors know about each other and sometimes share my lab results, but that's where the collaboration ends. Fair enough: Most healthcare services are delivered this way and it's up to patients to play ringmaster.

Alas, I forgot this important lesson two days ago when I began taking the four new pills, vitamin E and two new types of insulin my doctors prescribed (these were added to the five pills and multivitamin I already take). Day one - bad headache and fatigue, which I chalked up to being overwhelmed by the changes, and little appetite. Day two - headache continues, little appetite, don't feel great but doing OK until about 5 pm, when I threw up. Hmmm. Threw up again at 10 and four more times last night. Now I'm worried about taking insulin when I haven't eaten much, especially since what I ate didn't stay down anyway.

I've been a bad ringmaster. All these med changes are wreaking havoc on my body (starting five new meds at one time wasn't such a great idea, I'm thinking). It's an experiment without any controls. My primary care physician would have been the most likely person to view this from a big picture perspective, but I saw her a week ago and most of the changes occurred after that visit. Two of the medications have side effects that can include "gastric distress," and I sincerely wish I had started them separately. Ah, such is hindsight.

This morning I woke up and, good news! no headache. I ate a scrambled egg and kept it down. But before putting a pill in my mouth I called my transplant center to speak to the person on call and, as luck would have it, my coordinator answered. She had me discontinue one of the pills (a gastric distress-causing med) and called in a prescription for nausea. Even without the nausea med, the vomiting has stopped. However, I now have diarrhea. Oh, fabulous.

Tonight I'm stopping the other gastric distress-causing pill and will see what happens. Tomorrow is my body's day to reach equilibrium; Monday I can start a smaller dose of one of the meds and, in a controlled manner, see if I can tolerate it and later in the week, I'll try the second one.

Note to self: I must pay attention. I'm the ringmaster; the lion tamer, if you will. It's up to me to bring order to the chaos.

Top photo by Claudia Meyer

Bottom photo courtesy of U.S. Library of Congress

Overload

I'm EXHAUSTED!

I've been to five doctor appointments in the past week (one for my son, the others for me) and the deluge of information has exceeded the capacity of my brain. My personal health situation/treatment has undergone some significant shifts: I have pages of notes to review (so I don't forget anything) and lots of new meds to take (oh, and did I mention the possible new side effects? gastro distress, of course).

It's all a bit overwhelming tonight. Thankfully, it's much quieter from here (at least in the short run). A visit to the vampires tomorrow (back to the lab - sigh - with weekly lab visits for a while), a dental check next week and perhaps visit to the eye doc. With these in hand, it's simple weekly monitoring (I hope) and "tweaks" to meds (I hope).

Excuse me for now - I need a nap.

Photo by Keith Syvinski

The Next "Thing" is Here: Cataracts

Yeah, just picture me: Knee-high hose with orthopedic old lady shoes, gray cardigan buttoned wrong and - drumroll - those square disposable sunglasses covering my eyes plus nearly one-third of my face. Pretty!

But seriously... I just returned from an appointment with my opthamologist, whom I must see annually now due to transplant medication and diabetes (one of my post-transplant annual doctor visits). In the 18 months since I last saw her my vision overall is maybe a little improved (!) but I have a cataract developing in my right eye. Oh, fabulous!

The doc saw nothing at my last appointment, so this is a new condition. I brought home a brochure and will read up on cataracts, about which I know virtually nothing. What I thought I knew was that cataracts usually belong to the world of the elderly and surgery is required to remove them. Sure, I turned 50 a couple of months ago and while that made me eligible for AARP, I never imagined that it made me eligible for cataracts. It's an insult, frankly.

Apparently, my "poorly controlled" diabetes is probably the culprit here. The doc said that the cataract's growth is hard to predict: It could fully cover the lens in six months or six years. But she said not to worry, telling me "You'll know when it's a problem because you'll have trouble seeing and your vision will be cloudy all the time, no matter what you do. I won't have to tell you because you'll call me complaining about it."

So, I'm off to learn about cataracts. As soon as my eyes return to normal, that is - my pupils are still quite dialated at this point. Guess I'll wait until I can take off my new sunglasses.

Photo by Jacob Power