Introduction

[Donaldson0007]

Hi everyone. 2 weeks shy of 2 years post. Looking to confer with other recipients regarding medications, side effects, and coping with the new life.

[maryalraines NKF Ambassador]

Hi I am 20 mos post. Been doing great with no noticeable side effects. Making sure I stay on top of all appts, diagnostic screening/testings to detect anything early-on so it can be addressed. How about you?

[Donaldson0007 in reply to maryalraines]

Congrats. Where did you go? I am Cleveland Clinic strong!

Things are very well excluding recent side effects. I have some type of blood cancer that has begun, and ulcers in my esophagus, stomach and small intestine so I get new pills for the damage caused by the other pills.

And I am not sure what the cause is, but my hair and nail health are rough, mostly falling out, breaking, peeling nails, dry, cracked etc. But I take biotin (w Dr approval of course) and for a time it worked, but no longer.

[Thankujacob NKF Ambassador in reply to Donaldson0007]

I had a lot of hair loss as well My dr. Wrote me a prescription for zinc and it worked great. within a month no hair loss and after a few months hair grew back

[Thankujacob NKF Ambassador in reply to Donaldson0007]

My hair loss was due to prograf(tacrolus)

[Donaldson0007 in reply to Thankujacob]

Thank you for that info! Have you or had you noticed issues with skin and nails?

[Thankujacob NKF Ambassador in reply to Donaldson0007]

Yes nails got stronger when hair got stronger. Nothing with skin

[kidneystories]

Congrats on 2 years!

[Bert64]

Side effects are different for each medication, so it depends on what your taking, Feb.2018 will be three years for me but this is my fourth transplant ( kidney) I think one of the biggest things is remembering that your more susceptible to viruses because of your immunosuppressive drugs.

[Donaldson0007]

4 transplants. I can not even fathom that. Tacrolimus and Myco are the 2 primary drugs. I am allergic to steroids so standard many treatments were off the table. I have been fortunate and only had 1 cold in the 2 years. It may seem strange but I am healthier now, on immunosuppression than ever in the past. Did you, or do you, take either of these?

[Bert64 in reply to Donaldson0007]

I take Prograff and Myfortic and prednisone

[Jerryphillips]

I celebrate 2 years on Aug. 6. Had a bad bout with the flu this winter but other than that I've been healthy. Some tremors but medication adjustment had helped.

[Donaldson0007 in reply to Jerryphillips]

Congratulations!

[BarbPKD in reply to Jerryphillips]

Did you get the flu shot?

[Donaldson0007 in reply to BarbPKD]

Yes. My transplant team advises that I do this. Pneumonia as well.

[WYOAnne NKF Ambassador]

In October I will be 18 years post transplant and my kidney is working like a "champ." I do have some stomach issues (mainly acid reflux) due to the immunosuppressants. I take myfortic & neoral. And now take other pills to help with the reflux. Some days still have problems with diarrhea due to myfortic. My finger nails & toe nails sometimes have issues with dry cracking & grow somewhat crooked. No big deal!

The thing I do a lot is wash my hands. I think that is one of the best things you can do to prevent getting sick. We have done a lot of traveling since my transplant, even to Europe. I find that I always get sick when we get back home. I swear it's the "germy" air plane.

Most of all enjoy life. Don't worry about side effects. Maybe they won't happen to you.

Take care!

[Donaldson0007 in reply to WYOAnne]

Congrats. 18 is a great streak.

I carry saniwipes everywhere - including planes and hotels! Ha ha

[Patient-Empowerment NKF Ambassador NKF Peer Mentor]

Surely understand your desire to share information about med's and side effects. I've had insominia and some hair loss, but the joy I feel for my 2nd chance for a better and longer life pales in comparison. How are you doing?

[Donaldson0007 in reply to Patient-Empowerment]

All in all I am doing OK. Healthier than Ive ever been. Even with side effects. Its still a scary journey but you try not to think about that too much. Are you a recent or seasoned transplant recipient?

[ArsenalFan]

Congrats on 2 yrs. I just hit 4 in July