Liver transplant - Let's support each other

@rosemarya good morning. I am doing well except for massive weight gain(almost 40lbs) and my hair is thinning so much. Today is my last day for prednisone thank God. Thursday 4/16 will be my 4 month mark. I'm praying that I will get off some of these meds and maybe I will stop losing my hair and stop gaining weight. Any ideas or suggestions from you or the group would be wonderful. Please don't lecture me on eating or exercise because I already do all that. 😀Thank you for checking up on me.

@jacqualin, Thanks for the reply. I was concerned about you, but you were already doing all of the right things!

Here is a discussion that has been an ongoing one where members have shared how they adjusted to life after their transplants. Since you are recently transplanted, I decided to share it with you.
Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

Hi, @jacqualin I too welcome you to Connect. I had a liver transplant in September, 2016, and I did not have any fluid retention beyond what was slowly going away after my transplant. I had a lot of fluid retention before it, in the last 4 -6 weeks I gained about 35 pounds of fluid. That did take a while to totally dissipate but I am sure it all had by Christmas.
Each patient seems to experience different symptoms but if your transplant team is not concerned it is probably nothing to worry about. I agree with @rosemarya, if you develop a temperature I would call the transplant team immediately. It sounds from your follow-up message as if they are already aware of the fluid though.

@beckyy39 I'm glad to hear you are fine for now with a toilet paper supply. I am using Instacart primarily to get our groceries and supplies. I always put toilet paper down as something I want but so far by the time my order is shopped there is none. I have an order being shopped on Tuesday so hopefully I will get some then.
JK

@jacqualin, Thanks for the reply. I was concerned about you, but you were already doing all of the right things!

Here is a discussion that has been an ongoing one where members have shared how they adjusted to life after their transplants. Since you are recently transplanted, I decided to share it with you.
Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

Thank you for the warm welcome Rosemary! The CT scan was done because of the fluid on my right side, just to make sure all was well. My NP recommended the warm compresses. There's no pain/fever/discomfort. I'm just wondering if any other transplant patients have experienced this.

I'll be sure to update you with any info from my team...thank you so much!!

@rosemarya I'm hanging in there. I, like @racing212, am battling a UTI. My PCP did a video visit on Thursday, called me on Friday, and said he would check up on me today! I have been on one round of antibiotics and am waiting to have the lab results from Friday before I am put on a second round. My UTI is from the Botox that I had for urinary incontinence. It is not the typical one caused by E-coli so I am waiting for my urogynecologist to prescribe since she is the most familiar with this. In the meantime, I am more tired than ever due to such frequent bathroom calls all night.

@jodeej I'm glad things are stable with Tim. Since they are would that be an indication that his dementia is not Alzheimer's?

@stella25 I hope you are able to find a living donor for your son. When you changed transplant centers it sounds as if you did not remain as a candidate on your previous center. Is that no longer an option?

@beckyy39 toilet paper really is still an issue here too. I am using Instacart and Whole Foods and having everything delivered. I always put toilet paper in my cart but so far have not gotten any and we are getting close to really needing it. This online shopping takes a lot of time, I spend more time doing that than I ever did when doing my own shopping. I will be so glad when I can go to a store again and select my own groceries.

I hope all have a Blessed Easter if celebrating, or continue to have a happy Passover if celebrating that.
JK

Good morning Rosemary...I'm a recent liver recipient, Jan 23, 2020, recovering well. I'm 11 weeks out, my clinics have changed to video appointments, which is fine. I've been experiencing fluid on my right side, which I did discuss with my NP. I did a CT scan 3 weeks ago, my labs are great, no concern from my liver team. I'm using warm compresses, and continuing to walk daily as directed. I've been scanning the internet to see if this is common with other transplant patients. Any comments or ideas?? Thanks so much!!

@rosemarya I'm hanging in there. I, like @racing212, am battling a UTI. My PCP did a video visit on Thursday, called me on Friday, and said he would check up on me today! I have been on one round of antibiotics and am waiting to have the lab results from Friday before I am put on a second round. My UTI is from the Botox that I had for urinary incontinence. It is not the typical one caused by E-coli so I am waiting for my urogynecologist to prescribe since she is the most familiar with this. In the meantime, I am more tired than ever due to such frequent bathroom calls all night.

@jodeej I'm glad things are stable with Tim. Since they are would that be an indication that his dementia is not Alzheimer's?

@stella25 I hope you are able to find a living donor for your son. When you changed transplant centers it sounds as if you did not remain as a candidate on your previous center. Is that no longer an option?

@beckyy39 toilet paper really is still an issue here too. I am using Instacart and Whole Foods and having everything delivered. I always put toilet paper in my cart but so far have not gotten any and we are getting close to really needing it. This online shopping takes a lot of time, I spend more time doing that than I ever did when doing my own shopping. I will be so glad when I can go to a store again and select my own groceries.

I hope all have a Blessed Easter if celebrating, or continue to have a happy Passover if celebrating that.
JK

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

@jacqualin, Welcome to Connect, and congratulations on your transplant and ongoing recovery. We are so fortunate to be living in the age of technology and electronic visits, aren't we? I have not experienced an electronic visit yet.
I did not experience right side fluid after the initial removal of the transplant surgery drain tubes. At 11 weeks, your body is still healing so there could be a relationship to that. With a transplant and being immunosuppressed, things can change very quickly and I am wondering whether this has started since your 3 week old scan?
Why are you using warm compresses? Is it causing pain or discomfort?

I encourage you to make contact to your transplant team or NP (if associated with your transplant dept) and tell them about this. It is always OKAY to call them when you have questions or have any concerns. I suggest that you do it Monday morning. If you develop a temperature of 101 do not wait until Monday, instead call the after hours/emergency phone number they provided.

@jacqualin, Will you let me know what you find out after you talk to your NP on Monday?