There is nothing like your own house, your own bed, your own stuff. I’ve been savoring the little things, like staying in my pjs all day, using my shampoo, playing with finley, sitting in the back deck and even floating in the pool. Because it is sooooo good to be home.

First things first, thanks to my Aunt Gail (my middle name namesake) for spending last week with us. She drove me to doctors appointments, cooked us meals, hung out with us and overall just helped us out. Mom and I had kind of hit the end of our rope and there is nothing like family to help you out. We miss  her already but glad she’s back with her family, as her kiddos already started school this week!

We had quite a few appointments last week, 2 with my PCP, 2 at Hopkins-my back surgeon and the Heart Failure Bridge Clinic, pulmonology, multiple blood draws and a few others.

So, how’d things go:

-The surgeon who placed my spinal cord stimulator give me two thumbs up on Friday. My incisions are healing perfectly. I still have restrictions on twisting, bending, lifting, etc, but I am able to drive!! (insert happy dance, here!)  We talked about my lower back pain (from them placing and feeding the wire and connecting it to the battery), which he expects to resolve in the next 3-6 months, as the tissue and muscle heals. We did talk about a possible revision (aka another small procedure) as I am experiencing a lot of tenderness where the battery is placed in my lower back, which he believes may be because of where the battery settled. But he is hoping and optimistic that again giving the tissue and muscle 3-6 months to heal, will help with the pain around the battery. But the best news is that the stimulator is working and I have had no pain in two and a half weeks! 

-My pulmonologist is the best and one of my favorite doctors. Given my recent occurrences of heart failure, he wants to keep a closer eye, so I head back in a month for a followup. We also adjusted some of my asthma meds, so he wants to make sure everything is okay in a few weeks.

-The heart failure bridge clinic and my PCP were a different story. Part of the reason my hospitalization was so long at Hopkins is because they had to do diuresis with IV lasix to get 25 pounds of fluid/water weight off. Once I hit my dry weight (the weight where you are neither dehydrated or retaining fluid), I was eligible for discharge.

Only thing is that when I got home, I lost another 9 pounds of fluid over 24 hours. Uhhh…Houston, we have a problem. That loss put me into acute kidney failure. The only way to get out of kidney failure, stop diuretics for a time. But this is dicey, because it can cause me to go into heart failure again. So this is how our week went last week.

Monday: see PCP, who runs blood work which shows acute kidney failure. Instructed to lift fluid restriction and hydrate, hydrate, hydrate until Thursday when I will see him again and he will rerun blood work.

Thursday: See PCP again, rerun blood work. Still in acute kidney failure, but getting better. Continue to hydrate.

Friday: See Heart Failure Bridge Clinic at Hopkins, they rerun bloodwork, as they cant see PCP’s blood work.  Still in acute kidney failure, instructed to hold diuretics and lift fluid and salt restriction for the weekend, in the hopes this will help rehydrate the body. Bring on the pickles! A big no-no for heart failure patients! The goal was to get closer to my dry weight my gaining back part/all of the 9 pounds of  water weight. Just an idea of how quickly heart failure can come on-without my diurectics, I gained 6 pounds of fluid from Friday morning to Monday Morning.

Its all kind of confusing, because our cardiac goal is to lose weight over the next year, but we don’t want it to be water weight. Doing so puts stress on my kidneys and puts me into kidney failure, and dehydration causes stress on the body, including the heart which causes my BP and heart rate to increase. My cardiologist is waiting patiently to adjust my BP/HR meds, because it is much higher than he would like, but he needs to wait until my body is rehydrated to see where my real baseline is. Because of the stress we keep putting on my kidneys, my PCP has suggested we bring a nephrologist (kidney doc) on board.

This week, I’m headed back to my PCP. My new PCP is really awesome and is on board to be an active part of the team, something I didn’t have before. He is coordinating the close to home care of my heart failure, taking care of monitoring my kidneys and heart by taking frequent bloodwork and seeing me in office to do an evaluation. The hope is that working with the Heart Failure Bridge clinic, we can keep me out of the Hospital, thanks to closer monitoring and intervention before we have a serious problem.

I can’t begin to tell you what its like to not have pain after two straight years of pain. It doesn’t erase the other issues I have, but it takes a big stress of my mind and body. I don’t have to fear “will I have pain, if I do that?” anymore. I can sleep without waking up in pain, which makes for feeling more rested in the mornings. Overall its been a good week.

Until next time,

Kristin