Depression Marathon Blog

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Diagnosed with depression 19 years ago, I lost the life I once knew, but in the process re-created a better me. I am alive and functional today because of my dog, my treatment team, my sobriety, and my willingness to re-create myself within the confines of this illness. I hate the illness, but I'm grateful for the person I've become and the opportunities I've seized because of it. I hope writing a depression blog will reduce stigma and improve the understanding and treatment of people with mental illness. All original content copyright to me: etta. Enjoy your visit!

Sunday, March 17, 2019

Frustrated at 65%

I'm back home. I left the hospital yesterday. I had a total of 4 Ketamine infusions over the course of my 17 days there. Seventeen days and 4 infusions later, I'd say I'm at about 65% of my baseline. That's a lot of time and effort for 65%. That's a lot of missed life for 65%. I'm frustrated.

Yes, I'm happy I'm no longer at minus 65%, but I know I could have gotten more out of this hospitalization than I did, and that's frustrating. The problem was not with the unit (which was comfortable and safe), the nursing staff (who were absolutely incredible as usual) or even the programming (though I've been through it multiple times). Each of those things contributed to improving my mood, but they could only take it so far. I needed more intervention than that.

Unfortunately, the intervention which was decided upon, the reason I went to the hospital at all, Ketamine, was carried out in an unplanned, fly-by-the-seat-of-our pants method. The problem was my inpatient MD. He knows me well from previous hospitalizations, but I guess we just aren't a good fit. He seems to have me packed tightly in a box from which I cannot escape.

No matter how hard I try, no matter the objective proof to the contrary, this MD just can't imagine me as anything but a baseline sad, suicidal, dysthymic, moderately functional, friend-less, solitary being. And that did nothing to improve our relationship with each other or of his treatment plan for me.

His bias against, or lack of complete knowledge of Ketamine was also transparent from day one. During my previous treatment with Ketamine (different doctor and during a clinical trial) I received 3 doses of Ketamine in the first 7 days and then one dose per week for 4 weeks. The total of 7 infusions, with those first 3 every other day, worked like a miracle. It worked for 18 months! Yet there was no attempt made to follow that plan this time. There was no plan at all.

From day one, inpatient MD scheduled one infusion at a time, and since Mayo Clinic only does one infusion per day (yes, you read that correctly), by the time he decided to schedule another infusion, the schedule was already full for the week. Luckily, there were some cancellations in there, but the haphazard timing didn't do me any favors, in my humble opinion. Not only, perhaps, was the varying schedule not clinically as impactful as it could have been, but the randomness of it was also incredibly stressful.

MD rounds were difficult and anxiety provoking. I never knew what was going to happen next. For example, when I gave the MD feedback that I wasn't feeling better after an infusion he suggested we should stop the infusions because they obviously weren't working. Yet, when I gave him feedback that my mood improved following an infusion, he suggested we stop the infusions because I was better. This happened after every single infusion. There was no commitment to a plan. There was no plan, period, and the constant threat of pulling the plug on Ketamine, with no alternative plan suggested, left me feeling helpless and hopeless.

I expended an awful lot of energy advocating for myself, which was stressful and exhausting. I felt like I was always on the defensive during MD rounds. This did nothing to change Mr. MD's perception of me as some sort of difficult patient whose self reports he didn't appear to trust. The more I advocated, the more it seemed to reinforce his opinion of me in that box. It was like a boxing match where I had no chance of even landing a blow. Nothing I said or did mattered. And there still was no plan!

Fortunately, the two doctors with whom I had contact over the weekends helped immensely. For example, inpatient MD felt we should stop the infusions after I sobbed through the second one because, he told me, obviously the infusions were making me worse rather than better. That statement led to a lot more sobbing, as it crushed any hope I had of getting better. It terrified me. And when I asked what we would do if we quit Ketamine, inpatient MD offered no plan. Turns out, it was an inaccurate statement, but I didn't know that until 24 hours later.

Twenty four hours later the weekend MD explained the various responses a patient may have during and after a Ketamine infusion, something which had not been explained previously. He noted sobbing through one infusion did not mean it was a failure. He told me in light of the fact I had been tearful prior to the second infusion it made perfect sense to him that the Ketamine might have caused me to sob during the infusion. Nothing to worry about, he said. It did not mean the Ketamine wasn't going to work.

The second weekend MD, with whom I met yesterday, entered my room with a big smile and said, "There's one of my favorite distance runners in Rochester." Even though I had no recollection of him, he knew who I was from sharing the roads and races with me over the years. He even remembered me running with my previous lab, Puck. He didn't have to be convinced, he knew I was a fully functioning, happy human being outside of the hospital. That made all the difference in the world.

I'm happy to be home. But I'm also a little concerned to be home, as I don't know what to expect. I'd certainly like to be feeling better than 65 percent. My worst fear is my mood will slide again. Actually, my worst fear is my mood will slide so far as to render me hospitalizable again. But I don't feel I can go back there.

Feeling like the hospital isn't a great option is daunting. It puts pressure on me to continue pushing through, regardless of how I feel. But I can't go back there and continue to do battle with a doctor who I don't believe believes in me. I can't take more time away from my life without a definitive plan to get me back to baseline.

Baseline: happy with the life I've built, grateful, active and energetic, loving and kind, generous, reliable, competent, fun, sometimes downright silly, 100% functional, and with many supportive friends and coworkers. That's who I am. That's who I want to be again.

1 comment:

Amy said...

Hi Etta - - I'm so sorry that this doctor wasn't listening to you. It made me angry FOR you. I wondered if you could assign yourself a medical agent to advocate for you, in conjunction with your own advocacy, in the future with this MD or others? It seems like it might carry more weight if someone else who knows you tells him who you are when you're NOT IN SYMPTOMS so he understands your baseline. This seems unfair you should have to do this and maybe this is ignorance on my part on how the system works, but just thought I'd ask. I'm so glad you're feeling better, though. 65% is closer to 100% than it is to 0%, and I pray it gets closer every day!