Dear Tribe,
Heart organ rejection and Ventricular Arterial Disease (VAD) is a yet another new journey for me.
Somedays I’m on the sofa with nausea staring at the ceiling just waiting for the meds to kick in, and then yesterday I got a burst of energy and felt 🦸♀️ invincible (thank you, steroids). 🤪
Currently, I have to tell my body to slow down and be peaceful, otherwise I want to jump out of my skin. Today, I even had to take Nitroglycerin for chest pain and meds to manage steroidal rage (not kidding). Everyday at 3pm, I’m The Hulk. 🥴 It was still a good day though.
I’m driving in my neighborhood on days I feel well. I mostly just go through the Walgreens drive-thru. Thrilling. I know that y’all can relate to COVID lockdown life…which is my current, typical life. There are days and times when I can not drive; it just depends on my body.
So that’s sort of where I stand physically (mentally is a blog of its own).
Adam is an amazing support to me. I’m so grateful for every low sodium meal he’s cooked me and all the days and nights he tends to me. But he is also working full-time and like, all Caregivers needs a break. This is my opinion, he’d probably tell you he’s fine and we have it all in hand. He’s a proud guy. One of the reasons, that while I’m shy about asking for help, I’m motivated by helping Adam avoid Caregiver Exhaustion.
So the question my Tribe has asked me, “what can I do for you?” I’m so grateful and humbled by my friends generosity, really.
If your able to do one small thing for me, it would impact me greatly. This list includes helpful ideas for my physical limitations and, honestly, strategies to help my depressed mood. I welcome any other ideas you might have to help me or Adam. Thank you.
- So this is a weird list of random activities!
- Home cooked low sodium & heart healthy meals, especially on treatment days (below 600mg sodium, below 65-70mg carbs and low fat)
- CBI members maybe an occasional ride to Friday night services
- Take me to a park for photography shoot (I have 2 cameras)
- I want to groom and feed treats to a horse (not sure I can ride now)
- Help me container garden & teach me green thumb tricks (I can’t lift my pots)
- Invite me to a book club (might not be able to read book, LOL) or Gertrude Stein Salon (yes, I’m making this up, but you get the idea)
- I want to hold a newborn baby…I haven’t held a little one in years…I think it’ll do my soul well
- Come over to swim in my pool (I can do short visits)
- I want to go to TopGolf before it’s too hot. I may not even hit many balls, but I want to be others who do.
- I want to take a boat ride anywhere, but especially along Lake Austin.
- DONE: I have items to donate, but can’t lift into car.
- DONE: Help me organize parts of my house (closet & clothes).
- Take me and my deaf dog to off leash park (he sometimes runs fast now that he can’t hear me recalling him, I can’t give chase and also he’s a jerk, but it really is a fun time.) LOL.
- Share a cup of coffee with me
- Keep posting on social media, your friendship and prayers lift my spirit in a way that I can’t not describe with words.
- New add-ons:
- Hang out at the Austin Library
- Lunch on a bougie patio in downtown (Austin & Dallas)
- Take a drive to see bluebonnets
- Visit O. Henry’s house (yes, it’s in Austin)
- Maybe participate in an afternoon outdoor Improv get-together
Thank you so much, really.
So my next IVIg treatment is May 11th & 12th. They are going to try to do the treatment outpatient, but if I take on too much fluid (which is a common side effect) and they have concerns about getting the fluid off, then I might have to do IVIg inpatient. I want to avoid the hospital at all cost. The outpatient cancer center is 1.0 mile from my home.
I’ve only had one IVIg (in the Dallas hospital) and I tolerated it well, but it did make me exhausted. Having food prepared for treatment days (I have to bring my own food and it’s all day at the cancer center) and food for Adam would be helpful. We are trying not to eat out because of the sodium restriction.
I really appreciate your help. I leave you with the Serenity Prayer, which brings me such comfort.
God, grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference. by Reinhold Niebuhr
Love, Jennifer
A New Heart Rocks 