This and That and Talk - My Transplant

My transplant date was 4/5/18 and I’m feeling very good and am very grateful. Before my transplant I had 13% function and thought I wasn’t sick enough to need a transplant. Of course, I can see how I’m feeling much better now. My concern is that I’ve lost so much hair. I’ve always had thick hair. Has anyone else dealt with this?

@contentandwell

That just so wonderful! What a life changing experience for all of you.

@hopeful33250 I know one thing for sure, we are both very thankful for the gift of each and every day. I was commenting to my son about that this week, and said 2 years ago September I was so sick, afraid to travel, even though the NP said I could, but now "life is good". I am still careful about where we travel, I always will be. It's so wonderful to be able to enjoy our son and daughter, son-in-law, and soon to be daughter-in-law. I am even having 11 people here for dinner on Christmas, and possibly a big Christmas party after Christmas!
JK

@taarthi as others have commented, check everything with your transplant team. You are obviously doing the best thing in not sending your child to daycare. If she is primarily at home with you she can't possibly bring germs back to you. Hopefully, by the time she resumes going to daycare your body will have a bit more immunity than it did initially with all of the drugs. If I recall, after my liver transplant they discontinued one of the immunosuppressants and decreased the dosage of prednisone.
You are very fortunate that your husband can donate a kidney to you. I hope you have a great recovery, we will be looking forward to hearing more.
JK

@wendydvb I also did not "bounce right back" after surgery and was quite ill before my transplant. I had a pancreas transplant and one of the workers at the hospital to me that if someone was skipping down the sidewalk with a smile on their face happily announcing that they had a panc transplant . . . they were lying. She said that pancreas transplants are hard; harder than liver or kidney transplants. My first year was very tough. I was re-hospitalized 9 times and discovered many underlying conditions that had been previously untreated. The second year was still difficult with multiple hospitalizations and continuing adjustments to manage my multiple conditions. It has taken over 7 years, continuing medical care, a back surgery and months of physical therapy for me to be as good as I am now; which I rate as fair. Last spring I was only able to walk 300 steps at a time, now I am now able to walk several blocks. My balance is not perfect but significantly better and although my stamina is still poor I have been able to take several solo trips of significant distance (3 to 8 hours) in the last month. I restarted driving about 3 years ago, making trips to the grocery and local clinic only on "good" days. I am on the same meds as you, except for I have no BP med. I don't know how far out from your surgery you are, but I share my experience to show that recovery is possible - - - and a great deal of work! Carry on and blessings to you.

Wendydvb, I can understand your frustration that you didn't just bounce right up after your surgery. Try to remember that we are each unique in how our bodies respond to meds and healing. Don't let the pace of your recovery get you down. You are doing great:-)
Hugs

@rosemarya and @contentandwell

You transplants folks are such a good team. I'm just envious of how well you work together!

@rosemarya I am a "friend" of the Mayo pages, and I agree, their postings are very good. I always like the postings on Compare Transplant Centers. It is of course more meaningful for people waiting for transplants but I like to keep informed.
JK

@gingerw I am on Prograf, Cellcept, Prednisone and BP meds. Still adjusting the anti-rejection meds and steroid at 5mg daily. Hope to bring them all down. I guess i just feel a little frustrated that I didn't just bounce right back after surgery. I'm not good at sitting still. I was however very ill before, so need to be patient. Will speak to dr's at follow up. Get some PT to get moving freely again. Glad your husband is doing well.

@taarthi Here is something from the Pages section of Connect-Tips from Connect Members and the Mayo Transplant Staff about life after transplant.

NewsfeedTop Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed/top-transplant-hacks-patients-share-their-best-tips-and-tricks