This and That and Talk - My Transplant

@lcamino Lynn, I too cannot believe I told my weight! I never even told my husband until recently when I lost a lot.
Unlike you I have struggled with weight all of my life since I was five years old. My mother told me I was so thin that she had trouble finding underwear for me and then I had an appendectomy at age five and immediately my weight started it's upward rise!
JK

@lexiopo, I hope that the GI can help your husband with his symptoms tomorrow. These are common symptoms for liver disease. And most of us with liver disease experience any of a wide variety of symptoms that are common for all liver diseases. Sometimes your doctor can provide you with remedies to ease some symptoms.
@lexiopo, I really want to help you, I know what a frightening time this is for you.

I would like to ask you a few questions so that we can get to know what is going on. Has your GI determined a liver condition or specific disease yet? You have mentioned the possibility of transplant, is he on the transplant list yet?
Rosemary

@lcamino I may have been about 135 too at my wedding, not sure but my weight was down around there. Even then I didn't tell my husband! I was overweight until starting work and then I crash dieted a lot and got down to around 120 which was too little for my frame. People thought I had been sick or something, plus I could not maintain it. So it creeped back up to @ 130 and then dating my future husband added a few pounds. My daughter who was so skinny in HS we had problems finding a prom dress small enough for her is now gaining a bit. I hope she manages to keep it where she is at, which is rounder than she had been but not bad. She doesn't get much exercise unless at a pool or the lake.
JK

@lcamino - Lynn, You are teaching me so much about kidneys! Prior to my acute renal failure and ESRD, I took my kidneys for granite. I was ignorant about them. Even during dialysis, I was too sick to even care. (I had been flown out of ICU in KY to MN). I was not even sure why I needed the dialysis, except to keep me alive. I remember the nephrologist popping into my hospital room and saying a number...and sending me to dialysis. Then after transplant, that same doctor came into my room - And he was dancing and singing out a number, followed by 'no dialysis today'!

Lynne, one of the best things I did was to keep a diary.-sort of - It started as a ledger of my many doctor visits and procedures as a way to keep track of medical expenses and insurance claims. Then it evolved into a journal of my symptoms that I wanted to track and show to my doctors. Then while living in Gift of Life, before and after transplant it became a means to pass the time. It goes on until my eventual return home after transplant.
It is not in accurate sequence because there were procedures and the transplant surgery when I had to go back and recall and write. But I find it amazing to read. I sometimes marvel of how my husband and I did it! And, it also contains mention of my mom other priceless events that occurred at the time.
Rosemary

@lcamino I am not sure if I answered this before, I have been rushing through things recently and this past weekend we were in Maine.

The interrupted sleep definitely impacts how much rest you get, even if you get back to sleep quickly. I read an article recently, I wish I could remember where, and it said that in sleep studies people with interrupted sleep had a much lower sleep profile because of it and even if you are in bed for those 8 hours or whatever, the amount of sleep you get is not equivalent to people whose sleep is less interrupted. I try to get to bed earlier on days when I know I want to get up early, like to go to my water classes at 9:00 but it's not easy.
I got my doctor to give me some lorazapam last year, a very small Rx, and I use them extremely sparingly -- maybe one a month. On those nights I do sleep better. So generally I only use them if I had been really sleepless for a couple of nights or if my mind is racing because I know the next day has many demands. My PCP is terribly opposed to them even though I take them so infrequently. My transplant team said they were fine to take occasionally but they left prescribing them up to my PCP.
JK

@rosemarya Journaling is such a great idea, Rosemary. Thanks for sharing that experience. Teresa

@hopeful33250, In addition, My husband kept 6 months of our email communications.. And we have copied all, and they fill 2 binders. To this day, it is still too painful for him to pick-up. On the other hand I do look at it, and read the prayers sent by so many.
Rosemary

@contentandwell - Thanks for sharing. My husband is quite sure that my naps are needed because I'm up so much at night. I'm beginning to believe him but I still do better if I nap, or sleep longer before I get up, and exercising seems to help too. The challenge is that if I sleep too late then my study meds are taken later which negatively impacts sleep the next night. If I take my study meds at 6:30 am like I should and then take the smaller dose at 2:30 pm I get the most sleep at night but I can't sleep in. I've tried taking the meds at 6:30 am and going back to sleep but I'm so thirsty I can't sleep (I have usually had 6 cups of water within 2 hours of waking up) and I go to the bathroom so much in the morning (at least every hour) that going back to sleep after I take them at 6:30 is still very interrupted sleep. I figure I just have a year or more with this routine and since the meds are buying me time before my transplant I will stick with the higher dose (I can take less but my kidneys are so large I've been told I could really benefit from the highest dose). It is a choice I have made and I'm thankful that I do not work outside the home so I'm able to nap if needed. I have heard that some professionals can not manage the high dose because it is too disruptive to their work day and I can see how that could happen so I'm just glad I can manipulate my schedule to manage the side effects from the study meds.

@lcamino I find it a challenge to determine if I would sleep better without a nap but so far it does not seem so.

I agree, we are indeed fortunate to be able to be at home. Of course I am much older than you are but I really enjoy working. I was yearning to return to work while I was still dealing with cirrhosis and my PCP said if I wanted to work I should but I just could not get a job and be irregular due to my health. I am glad I did not let him convince me that I should even though I would have loved to, he definitely did not understand what I was going through. The other thing is that no one hires people my age except for very menial jobs. I would do volunteer work before that. I have done volunteer work in the past, I should check into that again.
JK

@contentandwell - My husband and I are looking forward to volunteering once he retires. I used to do a lot in the public school system and at church but I'm unreliable now so it will have to wait. I encourage you to find something that excites you and offer your time and talents - so fulfilling and so important for society.