@contentandwell, It only happened that one time!
Before transplant, the nausea, lack of sense of taste, plus compounded mess of two failing organs turned me into ski and bones inside a water balloon body. After surgery, with the ascites bone, I had to sit on a pillow. A hard chair actually hurt because there was nothing padding my bones - that is definitely not the situation now!
BTW after reading all of the previous posts about exercising and weight issues, I got motivated. Hubby and I started going to gym for exercise - and I purchased capris and shorts in a smaller size last night! To be fair, I was in that 'in between' stage, and I got to the lower end, finally:-)
I say thanks to you and all of my friends here on Connect for the support and encouragement! And I have been more carefully adhering to the food serving and nutrition guidelines as recommended by Mayo Clinic Diet.
Have a happy day
Rosemary

@rosemarya that's great! Nothing like being able to go down a size! Now that I have a whole new wardrobe a couple of sizes smaller there is no way I can gain weight back! I was having trouble getting motivated and cheating a bit and then got a lower digestive problem which caused a drop of two pounds so that was incentive. For me, losing weight is an incentive to keep it going.
I never lost my appetite except for a few weeks after transplant, after cooking dinner I didn't feel like eating it. I would put it aside and after an hour I could eat it.
I have a bone problem too in my back. I broke my back (sounds more serious than it was really) and I have a vertabra protruding somewhat which hurts more now since there is less padding. I hate sitting in a hard back chair.
JK

I was 3X now I am a regular X. But at 6'4" and 253, that is very low for me.

@davebarnes, liver disease does mess with the weight. I lost weight, and like you, could not walk very far, then I developed ascites and needed a XL instead of a 10Petite. Rosemary

@rosemarya I did not lose weight because of my condition but due to hard work to lose it! Then when the ascites and edema started I really ballooned up.
We went to Italy in the spring of 2014 and my feet got HUGE. I couldn't wear any of the shoes I had brought with me, especially after a number of days and had to purchase cheap beach sandals to wear around. Fortunately at that point we were at a resort town in Sicily so those worked out OK and we only did walking when we went to town. My doctor knew of that problem but was perplexed by it even though my feet and lower legs continued to be obviously retaining fluid. At that point I had not been diagnosed as having cirrhosis so I guess it would be a tough thing to know though.
JK

Well, it's been six weeks since my liver transplant. While I am dealing with a few issues, overall it was a success. Recovery is another story.
I am staying on campus at Mayo's recovery center with my Wife/Caregiver.
My complications include:
My bilirubin levels continue to be too high, causing a potential stint surgery. Since I have had a gastric bypass they have to go through my side instead of my nose.
I have been getting really sick from a 7.5mm kidney stone they just found. I had a stint put in via my penis (ouch!). I now urinate every 15 minutes with blood and puss. It is scheduled to come out in a week with a scheduled laser to break up the single stone.
While my pain level has been getting better, it I still ranges between a 5 and 8.
When I came to Phoenix a year ago, I weighed 345. My ideal weigh is around 285/290. I'm a big 6.4" guy. Currently I am at 225, losing 30 pounds in a month. I look like a skeleton. If they would have kept my staples in I would have many costume ideas for Holloween.
I need to get better soon so I can get back to work, as I have been with no income for six weeks now.
On a positive note, when I have a pain med in me, I can easily see that the surgery was successful based on my flexibility, energy and lack of negative thoughts.
I was only on the transplant list for two weeks. Once they called me, the new liver was in me 4 hours later, total surgery time was six hours.
Mayo Phoenix is absolutely the best!. This coupled with my Caregiver/Wife, I feel very well taken care of.
Just thought I would put my thoughts out there.

Best Wishes and Prayers to all pending transplant patients.

@davidgenebarnes, Welcome back to Connect! I am very happy to hear from you.

You have quite an amazing story! This proves that all of our stories are unique. Thank you for sharing.
You have really been through a lot. And you are in the perfect place to have the specialists to get you through your complications. My husband and I prefer to refer to them as bumps in the road. My wish for you and your wife, is that your bumps soon level out!

David, please keep us updated on your progress, so we can celebrate with you.

Prayers for continued healing,
Rosemary

@davidgenebarnes - So good to hear from you! I'm sorry to hear about your many complications but it sounds like there is a plan to get you home. I'm sure you must be frustrated but you still have a sense of humor (your Halloween comment) which is a good sign. When/if you get down just try to remember those times when you have a pain med in you and are able to notice your improved health. I'm confident the Mayo doctors can bring your good health out of hiding so you can return to work a new man.

It's amazing to hear that you were only on the list for 2 weeks. That is a short time if you are waiting for a kidney but maybe not for a liver? It is incredible that your new liver was in you 4 hours after you got the call. How far did you have to drive?

Please give my best to your caregiver/wife who is playing such a critical role in your recovery now. Accepting help from a caregiver is humbling but being a caregiver is tiring and should not go unnoticed. I'm glad you feel well taken care of despite your temporary setbacks. Thanks for taking the time to update us all. We are caring from a distance and appreciate you sharing.

@davidgenebarnes Congratulations on your speedy transplant. Regarding your weight, I also initially lost about 30 pounds very quickly. Once we sorted out some additional diagnoses and my body got used to the medications a bit I was able to eat better and eventually gained it back (and more, even though I did not want to). I started religiously applying my limitations diets and over and have been able to lose slowly and consistently. Last November I challenged my husband to lose 20 pounds because that was the amount he wanted to lose. We both lost and then summer hit. I gloriously devoured peaches, watermelon and sandwiches until I realized I had gained about 8 pounds back over the summer. I have now re-applied myself and hope to continue my weight loss for a total of 20 more pounds. After my husband's 20 pound loss he went back to his previous food consumption habits and has also gained back, although I am not sure how much. I am pleased with my current weight, as I have not been this weight since the 80's after a debilitating illness. I hate to admit it, but I have been one of those yo-yo people. I sincerely hope to put a stop to that. I wish you well on your healing journey and am glad for all the supports you have. Bless You.

Hi Lynn,
I was told it would take 6 months to a year to find a liver. And yes, Livers are much quicker than kidneys I've learned. I live only 20 minutes from Mayo, so it was in pretty quick.
After last night and today in the Hospital, I am happy to report that I am out. At least until tomorrow's kidney stone surgery.
Wish you and yours the best.
Dave
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