This and That and Talk - My Transplant

@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.

@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

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

@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

@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 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

@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 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

@rosemarya - I have seen that information but it has been awhile. I think I will just ask the doctor when I see him next month. I think I'm at the stage where my kidneys are still doing enough (no swelling, no itchiness, no nausea, no vomiting, no anemia, potassium level good etc.) and the study meds are keeping my urine flow sufficient so I'm inclined to think it is not my kidney's failing. For awhile I thought my nausea was from kidney failure but my doctor prescribed a med for acid reflux (might be from enlarged kidneys pushing on other organs) and the problem resolved. I do remember asking my doctor why I don't feel more sick (I watched my Dad feel very sick but he was on dialysis before he got his transplant) and he said he said I should never feel that way if I get a living kidney donation. Essentially, the transplant will happen before all those nasty symptoms of kidney failure start. Apparently the kidney is quite a remarkable organ and can adapt, work fully, for a long time before the symptoms start. For example, I have 25% of my kidney functioning but I don't have any symptoms of kidney failure (except high creatinine and a low GFR that is only distinguishable by labs). I guess that is why people can live with just one kidney. But, I will ask the doctor in August.

@lcamino @herbswife I wish I could help but early on in my journey toward a diagnosis and eventual transplant the only symptoms I had were occasional HE episodes and fatigue. Then after getting on lactulose I did have nausea but that was generally @ an hour after taking it. At one point, during the summer before transplant, I did have more nausea and was given first one then another anti-nausea medication but they totally knocked me out and did not seem to help the nausea much.
When your liver is compromised it effects how medications are digested. My gastroenterologist prescribed numerous PPIs but each one made me sicker than the other. I finally went back to the least of the evils, omeprazole, and my body eventually adjusted to it. There were other medications also that made me sick, just can't remember which now.
I had pain following an ablation procedure and was prescribed pain relievers but they, rather than making me drowsy, kept me awake all night staring at the ceiling!
It is amazing how much your liver does and how many things are effected by it when it's not working well.
JK