ANDREA EISENMAN & HER DOG SADIE
I was definitely depressed and needed something to get me through.
Attitude and Depression with CF
Repressing Depression–Autumn 2003
BY ANDREA EISENMAN
What is there to be depressed about after transplant? Well, for me it was more anxiety and reaction to medications than sadness. While I was wavering about getting the help I needed, it became clear that I was indeed suffering from depression.
I had been on an anti-depressant before transplant. This helped me cope with my diminishing health and calmed me a bit while waiting. That I could fathom because of the stress and fear of not making it until the call came. At that point, I was definitely depressed and needed something to get me through.
My first reaction after transplant was, “There is no way I could be depressed now. After enduring the long wait and going through the first year, this is the icing, right?”
Well I was wrong and something was really wrong with me. My first clue was that I had no patience for things and got really agitated over menial tasks or dealings with people. Well, I do live in New York but was previously able to cope with persnickety subway token clerks or rude checkout people. But at that time those things would really send me spinning and obsessing over ridiculous things. I was a generally laid-back person who did not get rattled easily.
Then I also started to get frustrated about keeping track of my daily medications and frequent doctor appointments. Someone who knew me closely said he noticed that every other word out of my mouth was ‘aggravating,’ ‘frustrating’ or ‘annoying.’ I also was having trouble sleeping through the night. I would wake up during the night and not be able to go back to a deep sleep for 2-3 hours. By then, it was practically time to wake up. I felt horrible after tossing and turning while awake in bed trying to fall back to sleep. Reading usually knocks me out but that didn’t work. Then I HAD to take a nap during the day. Which I think only made me not sleep throughout the entire night. It became a vicious cycle that I was not sure was connected to my anxiety.
These symptoms started to appear a little after a year post-surgery. They started to get noticeably worse as time wore on. I had read that some of the medications that I was taking, mainly cyclosporin and prednisone, can cause depression. So I thought I had gotten away scott-free from that side effect.
But what I didn’t realize was that a medicine the neurologist prescribed to stop the seizures would also keep me from being depressed. A few weeks after transplant, I had suffered from seizures due to the immuno-supressant, progaf. Once all was under control and I was taken off prograf, my neurologist gave me an anti-seizure medication called neurontin. I took it three times a day and had no more seizures. But there was an added benefit to neurontin that I later learned of. It was also a mood-stabilizer. I didn’t really think much of that since I seemed pretty happy. I was joyous over my new lungs and independent from the oxygen tanks. I was starting to resume a more normal life than before the transplant.
Once I was seizure-free for one year, my neurologist started tapering me off the neurontin. I finally stopped it completely about a year and half after my initial seizures. I never had any more seizures, but maybe a few months later I started having the low-tolerance and frustration.
On my usual check-up with my pulmonologist, I told him of my anxiety and its manifestations, especially the not sleeping part. He was concerned about the interruption in sleep and that I was always tired. He thought I should consider a sleep aid or an anti-depressant. I asked whether it would be ok to take that kind of medications with the cocktail of meds I already take. He said, “Yes, we have many people on those medicines and it helps them”. I really didn’t want to take ANOTHER pill.
I opted first for the sleeping pill because, hey, I wasn’t REALLY depressed. I just needed to sleep better. Maybe that was why my fuse was so short. So I tried Sonata® which is similar to Ambien®. But I was told not such great things about the latter so I went with the former. Sonata was fast-acting and didn’t stay in one’s system for more than four hours. So I should be able to get to sleep and wake up feeling refreshed. Sounded good and it actually worked for about two months. Then I started to slowly fall back into my old pattern of waking in the middle of the night. My friends said I awoke looking hung-over or drugged. Indeed, this was how I felt. So back to the doctor and he recommended I see the transplant clinic’s psychiatrist.
The psychiatrist and I discussed what was going on in my life, the anxiety, the “gulp” depression. He gave me many options of medications to try. I veered away from the ones friends had told me brought on bad side effects. Some anti-depressants can give a person abdominal problems, drowsiness, headaches, weight gain, dry-mouth, and the list goes on. I went with something that I had heard worked well for a friend that suffered from anxiety and had trouble sleeping. It is called remeron. I think it is called that because it offers deep REM sleep. It is taken once a day at night and has a sedating affect. One of the most common side effects is weight gain of about 5-10 pounds. The psychiatrist looked at me and said I could gain a few.
I started the drug and immediately felt ravenous but figured, I work out so this should not be a concern. Famous last words. My initial findings were that I did sleep better than I had in a long time. And I was not groggy when I awoke. For the first two weeks I walked around feeling a little weird as if there was a slight buzzing in my head or like I had taken amphetamines. But that, I was told, was due to the medication changing my brain chemistry. It would go away in a few weeks. A scary prospect but I was willing to give remeron a chance.
I am glad I did because it really helped me handle my stress about everything. I just didn’t care as intensely as before if someone cut me off in a car or gave me attitude. I could cope better with my medications and daily rituals to stay healthy. I finally felt rested and didn’t need to take naps. My anxiety would lead to bouts of depression and sadness that I no longer felt. If something was bothering me, I didn’t let it overwhelm me as it previously did but was able to look at the situation with perspective instead of obsessing.
Even though I exercise regularly, watch funny movies, am very social with friends, and basically enjoy life, I just could not seem to get out of my funk. I really thought I could do it on my own but it just was not happening. Instead I would wake up with heart palpitations and feel scared.
Now I feel happy the majority of the time, not drugged out - if a bit plumper than I would like. Yes, I did gain the pounds promised by the medications. But most people with CF and mal-absorption are likely to know how hard it really is to gain weight. So I am dealing with the added padding and trying to work out harder and eat less. The psychiatrist and I already spoke about changing medications if I meet my weight cap of 120 pounds. I will probably switch to something with less weight gaining properties. Until then, I am satisfied that this medication is helping me a great deal. I am only sorry it took me so long to realize that I needed it.
Andrea is 38. She is a Director of USACFA. Her email address is: aeisenman@usacfa.org