@sarahpalomita1 Thank you for your post. My stomach issues tend to fluctuate due to the diuretics I need to take. I do use gravol and stick to a low sodium diet. The lactulose definitely helps keep my thoughts straight. I also take Rifaximin and lansoprazole. The doctor also prescribed miratzapine to help me sleep. My biggest hurdle is the loss of energy and fatigue I have. I do go to our transplant clinic weekly to work out to help build up muscle mass for surgery. The wait at times is unbearable but I know it will come when I least expect it. I am so glad that you are doing so well. I hope to be in your shoes sometime soon.

@sarahpalomita1 Sarah, I'm not sure whom this is directed at since you did not say, but I agree wholeheartedly. Symptoms that may seem unrelated to you, a layperson, may be significant. Even then, it takes a really excellent doctor/diagnostician to put it all together. It took mine almost a year and a half before I got a diagnosis. The only symptom of cirrhosis that I don't think I told them was that my handwriting had become illegible. Since I never had great handwriting I just assumed it was getting worse, but now it's legible once more.

Sarah, what types of transplants have you had? I had a liver transplant in September 2016. The whole experience to me seemed almost surreal. I feel so very fortunate to be here.
JK

@contentandwell I love your posts. I feel that I can relate my present situation with your past. I don't have contact with anyone here in London ON, who is a pre or post liver patient. Although I visit the University Hospital Transplant Clinic for physio weekly I feel lonely. We have one of the best clinics in Canada and I have a transplant coordinator and social worker but I don't know any other liver transplant recipients. It seems like I jump from one crisis to another. Edema, nausea, dizziness, fatigue and sleeplessness plague me. I also couldn't write or print for quite some time. When first diagnosed I was rushed to hospital and almost died. I have been on our wait list for just over a year now. My MELD is about 28. I lost all memory of those 4 months in hospital. Sorry for the long winded post but I needed to let someone know how I feel that can understand me. Just waiting for the right size and blood type to match me is stressing me out. I also suffer from severe muscle cramps and spasms. I let the doctors know everything and I am on diuretics, lansoprazole, rifaximin and a sleeping pill. I pray every night for a match to put me out of this misery. I smile though because I don't like to burden my children. Hearing from you gives me hope and I know that I am not truly alone. Thank you.

@sarahpalomita1, Welcome to he Transplant discussion group.. I am happy that you have chosen to shared from your pre-transplant experience. You are absolutely correct - to tell your doctor everything!
I had a liver/kidney transplant in 2009. I am also active and happy again!

How long ago did you get your transplant(s)?
Rosemary

@gaylea1,
You are wise to go to the transplant clinic to work out before the transplant. It will help you when it is time for the surgery. Here is something for you to read.
https://connect.mayoclinic.org/newsfeed-post/frailty-what-is-it-and-how-can-it-affect-patients-with-cirrhosis/
Hugs,
Rosemary

@rosemarya Thank you for the link Rosemary.

@gaylea1
Do you know about the “Pages” section on Connect? You can locate it in header at top of this page. You can scroll to the Transplant Pages where there is more people transplant information by the transplant staff. I think you will enjoy the newsfeed blogs!
Sorry for not sending link. I’m on iPhone and that is beyond my skill level!

Time for bed here. Routine labs in the morning. Rosemary

@gaylea1 If you ever want to PM me, please feel free to. I went through much of what you are going through but I was very fortunate in that most days I was perfectly fine and lived a very normal life, doing all the regular things I had done -- going to my health club to do water exercise, shopping, cooking, and the list goes on. People who know what I had were amazed at how well I looked and how well I was functioning. When I had an HE episode though it was beyond horrible. Just writing that brings tears to my eyes. It wasn't until the last 4 - 6 weeks that I went downhill, having horrible edema and ascites. I lost a lot of weight early on after my diagnosis, intentionally knowing that my recuperation would be better if I was in better shape, and thankfully I saved some of the old clothes. I was thinking I might gain weight when I had to take prednisone, but that wasn't nearly as bad as the ascites. I felt like I had a barrel around me and my feet had water seeping out of them.

The only other problem I had early on was nausea when I had to take lactulose. UGH.

I also knew of no one else who had gone through or was going through it but my family was as supportive as they could be. I think it's pretty impossible to totally understand unless you have gone through a life-threatening condition yourself which caused you problems. A dear friend who lives in SF had gone through breast cancer and although totally different she could relate to me better than anyone else. She was a Godsend.

I had multiple hospital stays, but none more than a few days. What put you in the hospital for such a long period of time? Sorry if you have said before, but I do lose track of everyone's various ailments. A few of my hospital stays were due to HE episodes, and two near the end were due to bad blood numbers. They called me from the transplant clinic and told me to get right to my local hospital. I got there and the ER doc said my numbers were so bad I could have had a cardiac arrest! He wasn't comfortable with my condition so I was sent by ambulance to Boston, to my transplant center. I think the reason the NP in Boston wanted me to go local was that she was afraid something could happen on the drive, if my husband drove me. I do have some lost memories from when I had the HE episodes, and the other stays, even the one after my transplant, are a blur, I presume because I was on meds and very fatigued.

The leg cramps were the worst. I would get them at night and they were agonizing. A couple of years before my cirrhosis got the point of being diagnosed I was having horrible cramps in my thighs, definitely not medication related because I was not on any medications. My husband would want to rub them thinking it would help but I couldn't bear for him to touch them. One time they were so bad I think I almost passed out. At that point, we had no idea what the cause was. I came to realize that they only lasted about 15 minutes, more or less, and knowing there was an end in sight helped me to deal with them.
In Boston, transplants typically took place in the low 30s but I was transplanted at MELD 28, probably because I am blood type B. They are now managing to transplant more in the high 20s.

Don't ever think you are alone. I understand not wanting to burden your children. I tried to not make a big deal of things to them, but being adults they knew. I wish I knew about this group when I was going through everything, it really does help to have others who have been there or are there now also.
JK