Liver transplant - Let's support each other
What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?
Interested in more discussions like this? Go to the Transplants Support Group.
@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/
@contentandwell My son's previous transplant center was not meeting his needs. It was my son's choice to transfer & a good choice it was!!
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
Unfortunately, I can't shop online since I have foodstamps due to my disability. A neighbor and my daughter both gave me some toilet paper so I'll be alright for a couple weeks thankfully!
@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
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!!
@beckyy39, You don't need to be out running around and shopping. You also don't need to be in left without TP in your situation.
Are the stores getting it in? I think that you should call the store manager, and explain your situation, and ask them to put some aside for you.
I hope that your rollercoaster blood sugars will begin to level off soon. It is good that you have connected with some specialists.
@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?
What you may experience is some small hernias along the incision. I do not have any discomfort from them.
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!!