10 months post and...anemia??

[Ladybug_05]

Hello all!

I just surpassed 10 months post transplant! My oh my has it been a rollercoaster. Between getting C diff in the first weeks post transplant, 2 utis, having to switch from cellcept to azathioprine due to stomach issues, medication induced fatigue where I was sleeping 16 hrs per day and side effects to boot (which are included but not limited to: tremors- which I still have despite being on propanolol and having my dose raised, hot flashes, moodiness, weight gain, bloating, etc.), it's been quite a year and it's not even over yet. My most recent endeavours include going to physical therapy to build strength back into my core and legs so my back is better supported, going to regular therapy for mental health, and going to college 3/4s time! Of course, having all of the mysteries that having a chronic condition entails, my most recent labs from last week looked wonderful...except my iron and related labs.

My ferritin is at 4ng/ml- normal is over 100ng/mg

TSAT is 5%- normal is 20-50%

Hemoglobin is 8.7g/dL- normal is 9-10g/dL (my normal is right at 9.1 g/dL).

I was referred to the Anemia Management team since I can't take iron supplements (it wrecks my gut and exacerbates that part of my condition) , and am set to start iron sucrose injections on Friday for two weeks. My attempts to eat iron rich foods have proved futile in helping bump up my numbers too..so I'm at a loss. My docs claimed that my deficiency would cure itself after the transplant, and it obviously hasn't. I've been symptomatic for forever too, and it's effects are making it dangerous for me to even go to the store by myself since I'm so tired and out of it (believe me, I'm barely even leaving my bed). I'm grateful that I was referred to Anemia Management and they want to pursue why I'm having such problems, but I fear that once my numbers are satisfactory, the docs will think it's fixed and I'll be back to square one in a month. I know that it'll take a bit to figure out why my anemia is chronic despite my efforts, and there's steps that the department has to take to figure stuff out, but I'm nervous about the mean time. Any advice?

[Bassetmommer NKF Ambassador]

Hi Ladybug,

I don't have advice on this but I am glad you posted. You are such a warrior and it is good to follow your journey. You are amazing. I hope they will resolve your anemia. I know it is so hard to deal with. Hang in there and let us know what happens. Sending you healing wishes.

[Bet117 NKF Ambassador]

Hi Ladybug,

Standing behind you as you continue forward on this journey!

It is all a process and our bodies change for whatever the reasons are and things show up.

See what your medical team has to say; add in any new members that can address this.

Stay strong and positive!

...it will all be good!

B..

[WYOAnne NKF Ambassador]

Congratulations on the 10 months!

I know when it was me going through this, 10 months was a big deal.

Your post - almost sounds like me 19 years ago. I know I have responded to you before, because I too had GI problems, tremors, etc. Then when I was about 10-12 months out I was also anemic. The transplant team told me that maybe my new kidney was not sending a message to my bone marrow to produce more red blood cells. Pre transplant I was taking weekly injections of PROCRIT. So, once again they started me on Procrit. For me, about 6 months later my new kidney got the message and I no longer needed the Procrit. And I have never had a problem with that since. Here I am - 20 years out from my transplant.

I can only hope that the same will be true for you! Sending you positive thoughts and prayers! Take care