Tuesday, September 5, 2023

Life After Sepsis

Life after sepsis is different than before.  Now my weeks are filled with doctor appointments and tests. Last month I saw all my specialists and had a CT scan and a nuclear stress test. I have bloodwork every month to make sure that all the organs are functioning normally. We want to catch any changes quickly and assess them. The most recent test showed the liver and thyroid have returned to normal but the kidneys have not. I currently have stage 3 kidney disease but the nephrologist thinks they may still improve.

I take my blood pressure twice a day and record it. I take my temperature four times daily. These are two of the early signs of infection or sepsis returning. All the doctors check the numbers.

Daily life has changed. I walk unaided, even stairs.  No wheelchair, walker or cane. I do have to concentrate on walking because I have a tendency to drift to the left if I’m not paying attention. If you were walking behind me you might think I was drunk. 

I’m right handed and my right side has always been dominant but now it’s weaker than the left. I’m told it’s because all the seizures were on the left. At first it was very weak but now it’s only slightly so.

When I left the hospital I had a noticeable tremor in both hands and when stressed a tremor in my upper lip. Since my occupational therapy the hand tremor is minor unless I’m tired or upset. The one in my lip has been gone for about a month.

I had afib in the hospital but it’s been undetectable on my last few doctor visits. They’re still watching for it.

My appetite is still poor and I’m still losing weight. I force myself to eat at least twice a day and I drink more water than I’ve ever drunk. I tire easily and have to stop and rest, often in the middle of activities.

I have trouble sleeping and have nightmares frequently. I feel as if  my mind is trying to piece together the missing weeks. I also experience severe mood swings from anxiety, depression and anger. My therapist and I are working on that. One thing she suggested was that I visit the ICU. I did and it really helped. I saw my room and met several people who had cared for me. It was very emotional but gave me some answers and made me feel calmer.

The thing that bothers me most is my short term memory loss. I have to write down anything important because I may forget it. I also have trouble finding words as I’m speaking. The doctors assure me it will improve when the anxiety and depression are under control.

I thought I was dealing fairly well with all the changes, then I got hit with a new one. My hair started falling out, something no one had warned me about. Every day more came out on my pillow, in my brush and in the shower. Last week when I couldn’t stand the patches of scalp showing, I had a friend give me a buzz cut. Will it grow back, who knows? I keep telling myself, it’s only hair. I still have my life.



MadSnapper said...

the horror story continues, I have never heard or read of anything like this, even though my friend that had it, had a lot of your symptoms there are about half that she did not. I am not sure of your age, but at 79 today, i am having the exact same short term memrory loss you are describing and it scares me silly. your story also frightens me to death. and all from a tick bite.

Gayle said...

Your journey sounds so difficult - please remember that YOU ARE A SURVIVOR! and you are doing amazingly well, from this account. I am celebrating each step forward with you!

Molly the Airedale said...

You have certainly had a SuperTough time of it, Sue, but you're here to tell about it. We send you a huge hug♥

Ruby Rose and the Big Little Angels 3 said...

I wouldn't be surprised if some medical sites would be interested in your well written account of your battle.

Mevely317 said...

Hi Sue, I've come over from Sandra/MadSnapper's place. Wow. Your candid recollections should be a warning to us all. So glad you persevered -- even at times I'm sure you didn't feel like it. Now I understand a little why, after my dog bite and subsequent blood infection, the Infectious Disease Specialist was being such a pill, not releasing me when I thought she should.

ZOOLATRY said...

Still have you close in thought each day as the struggle goes on, and now including Rob in my prayers. You have been strong throughout this, you are a survivor ... my hope and prayer for you is that you will hold fast to that during this new fight. Gentle hugs, Ann (Sept 17)

Molly the Airedale said...

I think of you so often, Sue, and hope you're doing better. Molly and I wish you and Rob and the pups a very Merry Christmas and a happy and much healthier new year♥