General
What tools do you use when fearful
Good day friends, I have not been on in a while. My brain damage from pre transplant gives me a lot of challenges with computers. But I can’t say enough wonderful things about our in person (virtual) forums.
today I am filled with fear. My liver is doing well gratefully but my kidney numbers are not good at all. Gratefully I have a wonderful nephrologist who happens to be on call at the hospital today and is waiting for my lab result's. If my BUN number does not start trending down……. You know the rest. It is over 180.
i am trying to use all the tools in my tool kit but nothing seems to be working. Praying, talking, using my AA support group, talking a walk, trying to eat despite the nausea, etc. but a friend told me this, it helped. “Prudence is rationale concern, not worry.” Of course we are all concerned, but worrying does not make my kidneys numbers improve or our bodies behave!
just thought I’d ask, what fear tools are in your tool box?
leslie
1 - 14 of 14 Other Answers
i always like to say that I’m not anxious, I am appropriately concerned. Much like your friend said.
I hope your kidney numbers are better. I am a kidney transplant recipient if many years.
Ask your nurse coordinator what is the amount of water you should be drinking. The meds are toxic to the kidney but we must take them as prescribed. Talk to your Dr and nurse coordinator about your immunosuppressant levels and what levels are the best for you.
Many hills to climb but you are not alone.
I think TP patients are/will always be worried concerned. It’s hard not to I think it never goes away. I am 4yrs. LTP and I am on the ups down . I try to stay positive, The immunosuppressants have affected my kidneys to but hopefully they will be able to adjust ur meds. Just know you are not alone💚
@TheMac Stay encouraged, I have found on this journey that there are many ups and many downs. The way I was able to cope with the hardest times is one my faith, I prayed every day and I had an amazing therapist who helped me focus on all the challenges I faced. I also start my day with an inspirational quote that inspires . at times it was hard for me to share with people who didn’t understand what was going on because I felt as though I was always educating. We are here to support you through your tough days and on your good days.
when I was on dialysis, I had the most difficult time dealing with the constant hospitalizations and negative reports. I decided to focus my mind on other things besides being on dialysis. I went back to school. I started crafting. My second mom actually started tradition with me that on Sundays we would watch a Hallmark movie over the phone. So it turned out to be like something I always look forward to.
Ladybug Amen, my faith has helped me also. I am on a different journey right now, you have to stay encouraged and know folks like you and Transplantlyfe❤️ are here to help.
Thank you @Melsamm
💚💙💛
Transplant Patient
When it comes to fear, I let myself be afraid. I know all the logic, and you do too, and in that moment I'm afraid, and my nervous system is reacting to a perceived threat, and if I pretend that doesn't exist I'm not getting anywhere. I'll even say "Hey fear, I know you're here, and I know you're trying to protect me if this situation were to happen. I see you."
And then I surround myself with as many supportive things as I can. I let the fear be there as I do those things. I move my body as much as possible, and focus on breathing. Sometimes I'll try to notice what the fear is trying to protect.
The thing I've noticed about these emotions is the stories we attach to them are what causes suffering. I feel fear, great, it means we're protecting something, I'm still alive, I still care. But when I attach stories to the fear and go down the rabbit hole of my world is ending, that's when I spiral for days and it's entirely unproductive. Because you're right, that fear changes absolutely nothing (and probably actually makes it worse because my body is so tense from freaking out).
I also love the practice of am I safe in this moment? Usually if I'm asking the question the answer is yes. Maybe my labs are really bad and the doctor might call in 5 minutes and tell me I need to be at the hospital, but I'm not at the hospital right now. I'm in my chair. Can I be in my chair? What does it feel like to be in this chair? And I might come back to that reminder every 2 minutes that I'm not actively dying, and that's ok. And it's ok that something might happen 2 minutes from now. RIGHT NOW, in this split second, I am ok.
Our lives with transplant can be such a rollercoaster. Although I have been doing this for over 20 years, I still don't have all the answers.
Something that usually works for me is for me to focus on one day at a time. Focusing on what you can control that day: what you eat, walk, watch a good movie, read a book, make your appointments, and take your meds are the things to focus on. Worrying isn't going to help anything. Stress can make your body feel even more sick. When things are really rough, especially when I'm nauseous or extra worried, I try to focus on getting through 1 hour at a time. This is similar to meditation. Meditation helps you stay focused on that moment to stay present.
I also make lists. Lists to email or call the doctor or questions that I have for my doctor. It helps me get it off my mind. DM me anytime. I can always help you through anything kidney-related.
I love @Jeanmarie’s advice. How are you doing right now @TheMac?
I stifle my fear with chips and queso. No, I am kidding.
I am like @Jeanmarie . I make lists. I write down questions, and the answers so that I can reference them again. I focus on the "now" and the good.
I set a goal for myself. 1 hour of walking in the middle of the day; 1 hour away from my screen; 1 chapter of my book; 1 extra serving of veggies; whatever it may be. I focus on the goal and I celebrate the achievement!
Thank you everyone for your tools. I treasure these and will add to my tool box. So much of it is waiting. Instead of waiting for the end, maybe thinking about beginnings would be
Thank you again for all your support. Kidneys seem to be functioning enough without intervention. Dealing with SIADH. Syndrome of Inappropriate anti diuretic hormone. Anyone have it or heard of it. Luckily my sodium levels were high enough. No infusions this week.
Transplant Patient
Celebrating the tiny wins with you! I was talking to @Kouimet this week and she mentioned thats what she does with her kiddos. Everything might be going wrong, but what is the one thing thats ok and focus on that. Right now your kidneys are functioning without intervention and you don't need an infusion this week - let's celebrate that!
I too @TheMac have dealt with SIADH. It even hospitalized me a few months ago. I was extremely weak when I took my but to the hospital. That’s what they diagnosed me with after a few days. It sucks. You n I both need the fluid for our kidneys n now they put us on a liquid restriction. Hope you start feeling better @TheMac because I know you’ve been through so much. God bless you.