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Heart Transplant

Join us if you received a heart or heart-double lung transplant

Website: http://transplantfriends.com
Members: 169
Latest Activity: on Sunday

Discussion Forum

whats normal

Started by suzanne. Last reply by ESjov on Sunday. 4 Replies

I just received my heart six months ago. I am up and down and all over the place. I feel great some days and sick some days. its like a rollercoster'.I just don't feel like my self I feel scared.Continue

Bracelets for medical conditions?

Started by Rach. Last reply by Rach Mar 27. 3 Replies

Does anyone wear a bracelet or equivalent to say they are a transplant patient? I can why it's a good idea, and I've been given a steroid card to carry around but what if they don't look in my…Continue

Healthy to Heart Transplant

Started by ESjov. Last reply by ESjov Feb 19. 3 Replies

25 years old, college graduate, living with my wonderful boyfriend, yoga enthusiast, healthy eater...Then, on July 31, 2013 I went to a local emergency room because I thought I needed some IV fluids…Continue

Tags: transplant, heart

Received my new heart on June 6, 2013

Started by Steve. Last reply by ESjov Feb 19. 27 Replies

Hi all. My name is Steve L. Haven't been on the site for a while as I was not doing too well while waiting for  "THE CALL". I got the call at 5:00 PM on June 5, 2013. I was transplanted in a 10-hour…Continue

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Comment by David on Friday

 Hey Lloyd the Tacro {Prograf}  shakes are normal , I forget how far along you are in your tx ,  but I belive I had the shakes till about month 5 ish , as far as the legs , if you have increased your work outs thats probally the cause .. which is a good thing !  once you get past the 6 to 8 months stage everything seems to be going great , everything is working again your energy  should be awesome   life should be normalizing again ,  but you should keep your tx team informed on all aches pains shakes low energy levels etc ,  with all the meds we take in the beggining  do mess with us some  .. hope your doing awesome !   god speed  ..  

Comment by lloyd on April 11, 2014 at 12:53am

well I have a new heart but the problem is that I have the tacrollimus  shakes bad has anyone hade this problem and to have your legs hurt at the end of the day  

Comment by ESjov on February 25, 2014 at 7:06pm

Anyone here under 30? I've been on a somewhat-futile search for anyone around my age since getting my heart in November.

Comment by Carolyn on February 16, 2014 at 10:14am

Thank you so much for sharing this video.  What a great idea. I wish they would do one in NY.

Comment by Walt B on February 15, 2014 at 10:47pm

Just thought that I would share an event that happened on Valentines Day here in Michigan!  (It was a very positive experience and I even met my donor's mother there!)

http://www.myfoxdetroit.com/story/24728610/heart-transplant-recipie...

Comment by Jamie on February 2, 2014 at 9:09pm

I am 6 yrs post 2nd heart transplant and am doing very well. I was wondering if anyone else has gotten avascular nucrosis?  I got it from the prednisone and since then I have had both of my hips replaced and my right knee replaced. Just wondering if there is anyone else in the same boat as I am.  I am lucky that I have not had any other problems besides that.

Comment by Linwood on August 30, 2013 at 5:54pm

I didn't have any kind of reaction to the reclast.  Thankfully!!!  I would almost bet your problems are not being helped any from having the shingles.  I have never had them but from what I hear it is horrible and takes a very long time to recover.  I am not able to get the reclast this year because of my kidney function.  My doc suggested prolia.  It is suppose to be easier on the kidneys, however my transplant team wasn't thrilled with that suggestion.  At this point I am not sure what I am going to do.  Don't blame you for not having the infusion...

Comment by Yvonne on August 30, 2013 at 5:20pm

Linwood.Yes, I certainly do get it!  Would you mind sharing with me how you reacted to the Reclast.  I am not recuperating as well as I would like.  I am really exhausted and having what I think are some strange symptoms. However, I just finished 5 weeks of shingles a week before the infusion and maybe I just need time. I am due this week for a Prograf and creatine level.  Boy, I hope that I have stayed level.  I'm not going to have the infusion next year.

Comment by Linwood on August 29, 2013 at 10:17pm

Yvonne!!  I feel so happy and "heard" that someone actually gets it!!!  I don't feel so happy that you are having issues but I really was thinking I was in a sinking boat all alone.  I to had my transplant due to viral cardimyopathy, and I also have the issue with diabetes and I also did the the reclast infusion.  Sounds like you and I have been on the same track!  I was transplanted at age 56.    

I will keep my fingers crossed, my prayers will lift you and we will hope that you get good results.  I am going twice a week right now for blood tests, prograf, creatine and now wbc seems to be a issue.  I really think the only way to wrap our heads around this adventure is to know that we were given extended time for whatever purpose we had in this world - be grateful and try not to worry about what is coming around the bend. (easier said than done)

I appreciate your feed back and I also look forward to hearing what others have to say.

Best of luck to you...please keep us posted.

Comment by Yvonne on August 29, 2013 at 9:39pm

Hi Linwood. 18 full years post heart transplant as of yesterday. Wow, you just read my mind as far as your comments are concerned. When I transplanted at age 57, in 1995, I was on Cyclosporin.  My creatine levels started going up up and I have been in stage 3 ever since. About nine years ago the doctor switched me over to Prograf because he felt the Prograf was easier on the kidneys. So not only do I have kidney disease but I also have diabetes from the  prednisone. I have Osteoarthritis and Osteoporosis from the transplant meds. So, in essence and in all honesty, the meds we take to save our life  also has the potential to destroy other organs and cause other issues. I just had a Reclast infusion from the Osteoporosis and it back fired - I had a reaction and am now just beginning to feel human again. I have felt picked on lately especially as I am now aging and beginning to get all of the fun aging issues. Don't take me wrong guys I would certainly go back and have the heart transplant all over. To be fair part of the kidney damage came as I spent the five months plus in the hospital with heart failure from Viral Cardiomyopathy. Because of my age there will not be a kidney transplant for me. So, I am just keeping my fingers crossed. I go in next week for a Prograf and Creatine level - please just say a little prayer for me.

Your other interesting question.  I am nearly as afraid of what's going to happen to my health insurance in October as I am about my kidney failure. Yes, those out of pocket costs are terrible. I recently decided because of my age that I am going to cut some of the tests down and go only for the "necessary" stuff - the monthly and six month lab tests. In October I will have the heart nuclear test without the treadmill and then that will be the last test of that type unless my cardiologist deems it necessary.

Until October of last year we had  fabulous insurance from my husbands former employer (he is retired). The company decided to turn his vested retirement insurance over to Extend Health which worked with us to pick both medical and medicine programs.  So far they have been good insurances for us. But! I am wondering what they are going to do with my insurance premiums in the fall. My husband takes an aspirin every night and no other meds - his premiums might not go up.  Guess we will wait and see.  The transplant almost wiped us out the first few years. But!  I am still alive an kicking and still grateful. I am very interested to see all the comments you will get from your questions. Hey, glad to meet you.

 

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