About Me

Were you a member of our Forum on http://TransplantBuddies.com

No


Where did you hear about Transplant Friends?

Just found it online when researching painful periods post kidney transplant


Are You Male or Female?

Female


Share - which illness led up to you needing a transplant?

Not sure. All that is certain in that I had CKD.


Which Organ(s) did you receive? If you are on the waiting list, please share.

Kidney


Drugs, vitamins, favorite foods

prograf, cellcept, bellatacept, Bactrim, Valtrex, vitamin D, prednisone, Bystolic, amlodipine, lamictal, Wellbutrin xl, b complex, Ativan as needed, Tylenol as needed, Zofran as needed, etc.


How many years have you had your Transplant for?

8 weeks


I am Interested in Transplant Friends because...

I am having a difficult time dealing with all my post transplant issues, namely the prednisone and the side effects of it, but also fatigue and tiredness. Very down and feel guilty for not doing well post transplant when someone gave a kidney for me. Emotional health is tough.


Which Transplant Center has or will perform your life saving surgery?

Emory


Share how your transplant experience changed your life?

So far it has kept me off of dialysis and I am so grateful and thankful for that. I am just having a very hard time adjusting to the rejection drugs and the blood pressure drugs. I am very emotional from prednisone. I want to live my life to the fullest, but am having a hard time doing that and feeling guilt over it. Body is changing because of not being able to exercise like I used to, so dealing with body image issues. I do feel blessed for this kidney, but scared that I will always feel this way. Praying things get better. I didn't have a real period for 75 days and this has been a very painful one. Please cross your fingers for me. It is hard to admit that you are not doing well when people ask you.


Share whatever information you want us to know about you

I was diagnosed with stage 4 CKD at 2.49 creatinine, high bp, fatigue, etc. Took about 3 years until I hit stage 5 kidney failure. I went as long as I could before starting dialysis. I was all the way up to 11.65 creatinine when I began and blood pressure was off the charts. I had already started to try to get a transplant before I hit dialysis but it took around 9 months for my evaluation to get completed. Sister donated a kidney for me through national exchange program. Very thankful for that, but feel guilt over it and unable to properly thank her. I think getting a kidney from a family member is more stressful than a stranger, just wanted to add that. If a stranger donates a kidney, then you know they want to do it. You always feel like the family member did it out of obligation and you feel so uncomfortable - okay, I am speaking for myself, I guess. I am extremely lucky and blessed. I just don't know how to be real right now. It is so hard to be honest about how I am feeling when people ask, because they think I am ungrateful when I complain about drugs and how I am feeling. Please pray that I will recover and be able to tell people that I feel so much better and that this was the right thing to do. I wish I knew what it was that I did wrong to cause my kidney disease. I have no idea and the doctors don't know. I can't beat myself over it and must move forward with my life. But I wonder how I am going to live on prednisone the rest of my life. I am angry, sad, mad, depressed, mixed emotions, confused, overreactive, sensitive at times. It's just constant flux of mood swings. Afraid my family will never be able to handle me and that my boyfriend will eventually move on because the new me seems to be the worst version of myself! I want to be better. I really do. I am hoping and praying that I can find the right medication or combination of things to change my mood and perception of things. I read someone on here talking about PTSD post kidney transplant. I never thought of that.


Share your interests and hobbies

I was a fitness instructor before the transplant. I worked out as hard as I could for as long as I could. it kept getting harder, but now I am very tired from all these drugs and it is time to start working out again and I don't know if I will ever be able to work out that hard again. But I need to for my physical and mental health. So I like to be physically active and fit. I love nature, animals, especially cats. I have recently gotten more interested in gardening. I want to travel. I like to hike. I love the beach and laying out in the sun because it makes me feel good, but now have to wear sunscreen all the time! So trying to stay out of sun more. I like to write. Can you tell? I did a little acting for a while in my past, but I know I need something more stable and secure to be able to afford transplant drugs after medicare stops paying. I like ancestry and am interested in geneology.


What Part of The World Do you Live? Feel free to share city, state, country

Georgia, USA


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  • I would like to add a little editing or clarification to my profile page post above.  I said you always feel like a family member did it out of obligation.  I was on pain meds when I wrote all of that so i didn't express myself very well.  you always worry that a family member might have donated out of obligation and I believe it causes a little more guilt than if the donor was un3related.  Hopefully that makes a little more sense and sounds less ungrateful!  My sister is an amazing person for donating a kidney for me through the exchange and at first i was very worried about doing it that way, but i think I knew deep down that it was the right thing to do because the exchange allows more people to recieve kidneys and it ended up being a blessing not just for me but for 3 or 4 people.  Thanks for reading.

     

  • Patsy, thank you so much for welcoming me to the group!  I wish I would have found it sooner!  Rawle, thank you too for welcoming me and your message!  You are both so kind and it means more to  me than you know to hear from people who understand as I have felt very frustrated, guilty, stressed, depressed, every kind of emotion over these past few months.

    The past week has probably been my worst so far.  I realize now that a lot of it had to do with pms and a very bad period!  Sorry if that is TMI!  But hopefully as a woman you might understand what that is like and as a man who is married with children you might also understand the struggle as well! 

    I didn't really get my period for 75 days (evidently because of the transplant surgery 8 weeks ago and then a surgery to remove my p.d. catheter, my veinous port catheter and stint 4 weeks ago.  I also had a surgery about 4 and a half weeks just before than to remove my old p.d. catheter and get a new one in on the other side and that was a huge mistake because I ended up finding out I had a match about a week after surgery.  So I had surgery January, Februrary, and March of this year, and also surgery in August and September of last year.  I figured out I had 10 procedures done in just 7 and a half months.  A total of going under 5 times.)  So I believe when I finally got it on Tuesday it was just excrutiating as far as cramps because you normally shed your lining after a month - not two and a half months.   After I started dialysis I had a similar situation where I didn't get a period for 61 days and when I got it finally it was terrible. I just have a feeling that the pms was worse than normal too (it wasn't just the cramps) and that my symptoms were more than the prednisone I have been dealing with.  I freaked out and called my psychiatrist and moved my appt. up to tomorrow morning when i should have just waited 2 to 3 weeks.  It was a hump that I needed to get over.  But I felt like my boyfriend and my parents thought I was going off the deep end and I needed to call him.  I guess I sound pretty messed up to everyone right about now!  So I have had some relief as far as cramps today as they are lighter and emotionally I am doing a lot better today than I have been for about a week.  i wanted to cancel with my psychiatrist today as i knew i had made it over the hump and overreated and prematurely moved up the appt. but i didn't want to make him or the office staff mad so I didn't!  I went to Emory today for my surgeon visit, labs, and bella infusion.  I am signed up for a research study with Emory where they take about 16 vials of blood every 2 months.  They took the first huge set right before I went in for my transplant surgery.  Definitely wasn't the best day for me to be giving that much blood on top of the four vials they took for my regular labs since I have been on my period this week!  But hopefully something good will come of this study.  It is supposed to be looking into immunosupressants.  Well, sorry I said so much.  I read all of your pages and it was nice hearing your stories.  I am sorry for what you all had to go through, but am so happy to hear how happy and healthy you all are!  Patsy - am I reading it correctly?  You have had an unrelated donor kidney now for 41 years?  Wow!  That is great!  Perhaps because what you think caused the kidney failure is not longer an issue you haven't dealt with any damage to your kidneys since then and that's why you've been able to keep this one healthy for so long!  What an inspiration!  I think it was being overdosed on a medication for years that caused my kidney disease as well but it cannot be proven.  So it gives me hope that with my unrelated donor kidney I might too have long term success!  

    Rawle!  What a story you have about getting that organ within days!  That is amazing and wonderful!  i am so happy for you and I can see why you love and rely on the Lord so much.  I am trying to lean on God right now.  I cannot say I am doing my best, but I know he has seen me through so much in this life.  Namely over the past year!  I have prayed to Him for relief from pain that I thought would never stop and He brought me out of it.  He is the reason I got a kidney so soon.  I am emotional right now writing this because I am seeing what God has done in all of our lives and I want to be thankful for all of it.  i go through periods of feeling more gratefulness, but I also go through periods where I start complaining because I want to be doing better faster so that I can make the best use of this kidney and this life!  Thank you all for showing me that things will work out for the better and for reaching out to me.  I am so emotional right now, because God led me to this site and is showing me all of this through you all.  God bless you guys, too and I won't give up.  

  • Hi Amanda, I would also like to welcome you to Transplant Friends and for joining our group. You are not alone.  You’ll find stories here that are similar and can be uplifting.   Hang on to hope  -  do not give up. 

  • Amanda, I too would lioke to welcome you to Transplant Friends. Thanks for sharing your journey in such details, I am touched by your experience. It is very difficult to express exactly how you feel most of the times but I am glad you took the time to share. Thanks. I was where you're at over a year ago, and I can assure you will begin to feel like yourself in a couple of months. We pray that God will continue to bless you as we continue to draw comfort from his loving arms.

  • Thank you so much, Priyanka.  I really appreciate the welcome!  I hope that everything will get better with time, too and that I will learn a lot from everyone on this site.  Hopefully we can all help each other!  

  • Welcome to Transplant friends Amanda. I am sure all the side effects and mood swings will be better with time. Do not stress too much. Keep posting your queries/comments and let us know how you are doing. 

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