Post kidney transplant & rough recovery: Will it get better?

Not yet but now I’m starting to travel more because I’m feeling better, I just camped on my boat for 6 days in Santa Barbara and there’s a pool in the harbor that I swim at

@pgruetz
"Just in case" is a perfect plan! I take extra when we travel, and I also make notice of any time zone travel adjustments.
When I was at Mayo, and newly transplanted, my husband bought a small pill container that hooks on a key chain. I still have it, and whenever we go away for the day, it is in my pocket or purse-with my evening (8:00) meds. We have developed a habit where I tell my husband that "I have my meds" or else he will ask me when we leave the house. I can remember only one occassion when we had to turn around return home to grab my meds!

Fortunately, I've never needed the extra 'just-in-case' doses when traveling. Have you ever needed those extra ones?

@future Yay! for your 1st year anniverary of your kidney transplant. I find that each anniversary provides me with a remembrance and special opportunity to reflect on the generosity of my anonymous donor (and his family). After 16 years, the feeling and appreciation does not go away.
In my experience, it is not at all unusual for the medications to be adjusted. I guess that is why we refer to our post transplant lives as a journey. It certainly sounds like you have established a good relationship with your medical team and that they are keeping close tabs on you.
I want to commend you for your careful observation of how your body is reacting to what you eat! That is very interesting for you to have observed how your hemoglobin level reacts to the baby spinach in your diet. "Listening" to our bodies is a wonderful skill to develop, and a very helpful one, too. Have you shared this with yout transplant team?

What are somre things that you are looking forward to doing as your continue your journey?

@rosemarya I always carry 2 weeks worth with me anytime I leave for a few days just in case and I have a few months supply

@rosemarya
I am 1 year now and the team keep changing my meds , increased all after the 1 year biopsy, blood test weekly for 6 weeks to monitor tacrulimus. Switched me to Enversus (long term once a day) but still adjusting the dose. So the journey does not end but I am grateful for God and the donor that I don’t know her, who gave me one of her kidneys!! That alone keeps me going. The team added special blood test to do for testing DNA of donor in my blood for assurance as they said but really for close monitoring.
I am vegan, my alarm is set for every medication, back to yoga at gentle level.
Here is the pattern I noticed: my hemoglobin has been always lower than the minimum since the surgery, but I noticed when I cook baby spinach every week and I eat it several times, my blood test shows improved hemoglobin above the minimum and if I get lazy or busy to cook it, the hemoglobin reduces. Just my observation.
Thanks

Hi, @nnr - It's been awhile since I've seen any update from you, After your rough start I hope you are beginning to feel better.
How is your recovery coming along? Do you feel like you are improving?

Congratulations on your kidney transplant! Yes, it will get better! March of next year would be my second year. I had my best lab result in November. Creatinine was 0.92, and eGFR 69! Yes, I was flabbergasted! What helped me was journaling to see what works and what does not, as someone mentioned above. I discovered that a plant-based diet and exercise worked well for me. Please, stay encouraged and believe that all will be well.

@rosemarya I use a very similar one but it also has a larger box that you place all of the single day boxes in to give one week all together. Very helpful. AS I begin my 80th year on this planet, remembering stuff definitely not as easy as it used to be.

@future
I have set the alarm on my iPhone to alert me to my medicine time. And have found that a 7 day pill organizer works great for keeping track of meds.
I’m sharing a photo in hope that it might be helpful.
I’m filling it now!

@nnr, like @gingerw said, you've had major surgery and some significant setbacks. It takes time for the body to recover and find your new normal.

How are you doing today?