This and That and Talk - My Transplant

@jeanne5009 thank you so much for your support 💚 Healing prayers are so effective and I appreciate it so much.

@gaylea1 I'm glad they got all of the cancer but that's a shame that you have shingles now. My transplant center has not approved getting the shingles vaccine yet so I worry about getting it. Apparently there is a protein in the vaccine that increases immunity which of course they do not want.
You are right, immunosuppression really is a pain but when you consider the alternative it's better than that. I hope the removal of the stent is without any negative effects. I've had numerous small things building up too. I saw my PCP this week and told him I felt like I was being stoned to death with small pebbles. Then, of course, I get on Connect and I see the problems that others have and I realize that mine are not so bad. I have much to be thankful for.
You have been so strong through all of your battles, that definitely has an impact, that trying to stay positive.
JK

Hi, @beckyy39 I too welcome you to Connect. I also dealt with HE episodes from NASH cirrhosis. My episodes were isolated, when I was not having one I was perfectly cognizant, and I either woke up with that fog or I could predict it coming because I would get a very upset stomach and feel tired. Since they were predictable I was able to drive right up until prior to having a transplant in September 2016, even driving alone on 3 hour drives up until the last summer before my transplant. At that point, I told my husband I did not feel comfortable doing that anymore. That was after having to resume taking lactulose.
I had a number of hospitalizations also due to HE episodes. Most of my episodes were mild enough that I could just sleep them off but a few were more severe and landed me in the hospital for about 3 days generally.
Has your hepatologist considered putting you on xifaxan? After I was diagnosed I went to Boston, to Mass General Hospital, and the hepatologist there prescribed xifaxan. I was able to drop lactulose and the xifaxan alone kept me from having an HE episode for almost a year. Then when I did have another that was signal that my liver had deteriorated further and I had to resume lactulose along with the xifaxan.
I was prescribed Lasix and then Spironolactone two or three months prior to my transplant. Prior to that my fluid retention did not require it. At that point though, about six weeks before I received my transplant, I gained about 35 pounds of fluid.
If you do have any questions, it sounds as if we have some common problems from your situation -- have you been diagnosed as having cirrhosis? -- please feel free to ask away.
JK

Nearly identical to my path. Been on Rifaximin 2 years same for the diuretics. Meld still 8. Waiting for the liver to revolt..tee hee. None of us are alone...

Announcing - New Group Dedicated To COVID-19:

@2011panc,@livertrex,@joanaiken, @glinda, @jodeej, @dcwilkie,@jeanne5009, @jeanne5009, @estrada53, @rodney9999, @almula, @wildcat, -be sure to add your thoughts to the discussion COVID-19 in Transplant .

COVID-19: Let's Stick Together Virtually
https://connect.mayoclinic.org/group/covid-19/

Hi I live in western Colorado had my transplant in August of last year in Arizona. I'm feeling fine. Still a few complications with dizziness. But overall I am getting out. Now the State wants me to stay home. We only have one case in our county. I think I'm okay and risk is low. What does everyone else think? I would like to go to church.

I just sent you a message. Would you copy your question in reply to my new post?

How do i do that?

@livertrex, Let's see what kind of a teache I am!
Click on this link with the https and it will take you right to the discussion. You can then post your message, just like you did here. I'll bee watching for you.
https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/

Hello from Scotland where everything is just as strange as it is for you folks in the USA. We are fortunate in having a health service which is
nationwide and so co-ordination of stats and necessary equipment etc is easier for us. But we are not doing everything correctly as we were horrified by our governments views on 'herd immunity (letting a lot of people get sick so that the whole country can build up an immunity to the virus). Thankfully that policy has changed as it was particularly concerning for those of us in the high risk categories.
I am thankful too that we transplant patients are already well trained in good hygiene! I am self isolating and my husband is doing all the shopping. I can only hope that he will not succumb to the virus. There is good and bad in this dystopian world we are about to enter; the bad can be seen in stock piling and those who refuse to follow government advice but the good is in the kindness and offers of help from so many people to the most vulnerable in our society. I live in a small community and the response has been wonderful already.
On a fina , maybe optimistic note, I have read that both cyslosporin and tacrolimus have been effective in stopping the replication of some types of coronavirus in the past. Obviously, we don't have know yet if it is effective against Covid-19 but has anyone heard anything about this?
Stay safe everyone. We are all in this together no matter who we are and where we come from. One last thought, it is springtime here in Scotland and that makes everything seem better....