cxmoody Posted April 2022
Lealonnie and Hubby: Liver Transplant Journey
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It is digested differently than Metamucil, also the same fiber but the latter for many causes gas and consequent distress and bloating. Metamucil causes a sort of fermentation that can make social gatherings iffy, hee hee.
Might be worth a try but I do know EVERYTHING has to be passed past the docs at this point.
Your journey is so much like ours---we had 3-1/2 months of nonstop issues--and truly once he was titrated down OFF the prednisone, things were a LOT better. It's a wicked amazing drug. I got to the point I was cutting these tiny pills into 4ths...and then when I was literally giving him 'dust'. The last day of prednisone and I shouted for joy!! Of all the drugs, that was the worst.
And the on-off constipation--ugh. Poor guys, they're stapled from heck to breakfast and the last thing they want to deal with is moving their bowels.
We've known many liver transplant patients and each has a story to tell. NOBODY got out of it w/o a lot of side effects--but I have to say, my DH's journey was much 'easier' than a friend who has his in the 90's. He lived 36 years with his 'new to him' liver. Dh is 16 years out--and hoping for 20 more.
I think of you often. You are so smart to take breaks and recharge YOU! I did not do that and wound up really, really sick. All I needed was a lot of sleep, but I couldn't get it! You take care of you, esp when Chuck is in the hospital, being cared for.
As for the dry mouth, please get some electrolytes and drink more water. That is a sign of dehydration. I have found that alkalized water helps get you hydrated faster, it's easier to drink more of because it is hydrating at a cellular level. I honestly drink 1.5 to 2 gallons of water a day, especially since it's so windy and dry right now. Using sweet almond oil with some vitamin E and rosehip oil is really nice to keep your skin hydrated. You can use it everywhere.
I also carry a personal mister when I am going to be out and about, great refresh and hydration tool.
Stay cool!
Alva, I'll ask about Citrucel, although Chuck is adamantly opposed to drinking anything having to do with laxatives. Like 100% opposed, and he's a stubborn man.
Midkid; Chuck's issues pale in comparison to others' here, truly. We have one lady who's had 3 ERCP procedures (endoscopy to place stents in the bile duct), one of which has caused internal bleeding & hospitalization, the other caused what they think is a hole in her PANCREAS! She's now in the hospital again awaiting the results with another ERCP scheduled in 3 months time! Another man has had EIGHT stents placed SO FAR in his journey. That's two small stories out of dozens of ugly ones. And yes, prednisone is a miserable but very highly effective medication. I will put out the FLAG when his 4 month stint with it is over with. :)
I took a Benadryl last night (for the first time in ages) and slept like a LOG which I sorely needed to do. Then we both went back to bed for a nap and slept another 2 hours which Honey was all on board with. I feel human once again, thank God. Chuck's drop foot is improving, btw. The PT came to see him in the hosp yesterday & gave him some exercises to do with his foot; she also told him there is a small brace fitting for inside of his shoe that he can get before we leave (if necessary) that will help a lot w/o him having to wear the huge boot. Tues is the EMG nerve test which will reveal (hopefully) more of what's going on in terms of whether there's nerve damage or not. He's worried about being able to drive (it's his right foot) so .............
These are way better then Gatorade. You can't drink enough Gatorade to replenish the deficiency, seriously.
Quick story. We were camp hosting and the maintenance man's wife was having a hard time. She refused the pills but, would drink Gatorade, so I gave her that. She still ended up in the hospital with severe dehydration, the doctor explained to her how much Gatorade she would have to drink to replenish and have enough for what her body uses daily, he then prescribed the very pills she refused. She was so mad when she told me this and I didn't even say I told you so.
I know so much about this stuff because I got heat stroke and dehydration so bad when I was 16, I actually went blind for several hours. I have done everything in my power to never go through that again and to intervene so nobody else ever has to go through that.
So, I am not trying to be pushy, I just worry about everyone that comes to this climate and starts having obvious signs of dehydration.
We live in Utah and it gets hot and dry here, but nothing like AZ! I try to drink all day, but it's almost impossible to stay hydrated.
SIL is a doc and he will do an IV run when I've had a migraine--being dehydrated makes those worse, or even causes them!
Dh was adamantly opposed to anything to move his stubborn bowels until the night he had the male nurse with HUGE fingers who just came in an inserted 3-4 suppositories--and then waited for the outcome. It was beyond humiliating for DH (he called me minutes after this event) and I actually laughed at his embarrassment. I said "Pick your battles, pal. Either take the laxatives by mouth or have them GIVEN to you". He moaned and said "WHY couldn't Hi Ling have been my nurse tonight? Her fingers are TINY!" Not much sympathy on my part, I had delivered 5-10lb babies and there is no 'delight' in that.
And yes, we saw some mighty sick people. DH's septic infection was awful, but after that passed, he did heal with not many complications. It was hard to take a 'healthy looking' guy to the hospital--he never turned yellow, or orange. Other than being mad at me for a few months, he was a pretty good patient.
You'll look back on this and while time does mellow our memories, some of it will stay fresh in your mind. Chuck sounds like a much calmer person!
Prayers for you guys!!
Big hugs!
Today is Chuck's ONE MONTH ANNIVERSARY of getting his new liver! It was this time of day on April 29th when we got the call. I was putting on my bathing suit to go to the pool when Chuck got 'the call'. I thought he was joking when he told me, it's time to go to the hospital, because we'd just had that 'dry run' 2 days earlier. But it was the real deal, and here we sit, one month later, with him having a healthy liver. Truly a miracle & a gift from God and the donor who lost his or her life but gave Chuck a new life as result of their generosity.
Speaking of which, we were sent guidelines by the Mayo to write thank you letters to the donor's family for the gift of this liver. We can each write a letter to the family, which we will do. It's hard to come up with words to say "Thank You" for such a gift, isn't it? And to express gratitude to someone who's lost a loved one while our family has the gift of an extended life for our loved one. The cycle of life is an amazing and precious thing. I know that the vast majority of our blended family is organ donors; if you are not yourself, now is a good time to consider becoming one. The gift of eyesight or a longer life you can bestow upon someone else by donating your organs or tissues is something that is a treasure beyond measure.
Chuck has had another good day today, thank God. I ran off to Whole Foods again to pick up some very high fiber cereal for him after doing some online research, and found one brand with 17 gms of fiber per serving. I wonder if Yule Gibbons scraped any tree bark off in the process of making this 'yummy' cereal (for those of you old enough to remember good ole Yule Gibbons who was known for saying "Many parts of the pine tree are edible.") 😂 As a show of good measure, I also picked up a slab of BBQ ribs from the smoke table because we've been watching way way WAY too many episodes of Diners, Drive In's & Dives lately. Yesterday was back to back episodes of BBQ joints across the USA. 😏
We're off for another walk around the hotel now. Oh, I forgot. We found a patch of GRASS on our last walk and Honey thought she was in heaven! She even took an extra poop to commemorate the happy event, after being forced to do her business on gravel & rocks for the past month. I'll take a photo of the hallowed ground & post it later on.
I'll update again tomorrow with more good news from the recovery front. Till then, wishing you all a great Sunday evening.
https://en.m.wikipedia.org/wiki/Euell_Gibbons
There is no rush to write the letter of 'thanks'. This was DH's call and he wanted to be the only one who wrote a letter. I know it was not for nearly a year--but then, we knew a little of the background of our donor, and we knew her family had NOT been at 'peace' whatsoever at her death and not supportive of the transplants, so we were guided a little bit by the SW in this.
How do you thank the family of a donor? We never heard back from DH's, and he made the comment that he was going to write a 'fresher' one, after we have had 16 years now and 12 grandkids born after this gift was given.
One thing that was sweet: a few years ago our hospital had those of us who wanted to participate, make a quilt square with a 'thank you' sentiment of some kind. The squares were collected and sewn into a HUGE wall size quilt. I did go to the hospital and look at the finished project. Our donor's family doesn't know DH's name, but if they remember the date, maybe they could find "theirs". They were not local, I know that, and so they would have no need to ever visit this hospital again.
It was a way to say 'thanks'. I wish this family could know what it meant to us--someday they will.
One month! You have 70 more days of prednisone--I'm glad Chuck's 'trip' has not been too awful. Truthfully, NOBODY gets out of this without some drama and scares. You are lucky, as I was I, that I had a lot of support.
((Hugs))
"The circle of life truly is amazing as is the entire transplant process. Prior to Covid we had a tradition in the hospital when an organ donor was on the way to the OR, all the halls they (and their families) would pass through were lined up with staff from all the areas who were paying respect to that person and their loved ones. It was very emotional as you can imagine."
That gave me goosebumps. The quilt idea is fabulous! What a wonderful thing to do to show gratitude to the donors and their families, I love it.
While we do have a lot of support, we have very little from his children which is unfortunate. The 3 girls haven't looked at Caring Bridge even ONCE, nor have 2 of them called him at all. The SD who's not speaking to me is STILL not speaking to me, which is forcing Chuck to have a talk with her when we get home. He did not get a new liver just to deal with BS and have to go see her and the granddaughter alone nowadays! Odd how children who call him continuously when he's fine have clammed up during the most stressful time of his life, when he could have used their support MOST. I think he's gotten a total of 6 calls from 5 kids in 36 days we've been here. :(
In any event, he has a bunch of appointments tomorrow including the EMG nerve test for his drop foot; so we'll know more about our release date soon. Mayo has to release him, and then Kaiser has to release him as well.
I use the '100 days' as a benchmark of sorts. Everyone is different, the antirejection meds, etc. But I do remember one doc pulling me aside when I was in the hall, bawling over something DH had said to me (Prednisone made him crabby and mean) and the doc held me tight in his arms until he's finished his 'rounds'. The he found a quiet room and talked to me, telling me what to expect, what to put up with and what to walk out on. I was not to take the angry talk nor the anger that DH seemed to be consumed by. This doc was the one who told me I could ride out 100 days. And he was right, it was almost exactly 100 days before DH was pretty much 'himself'.
No transplant goes perfectly and no patient is perfect. I was incredibly grateful for the kids of mine who stood by my side. A couple, well, they just couldn't. My son flew in to town and spent a week golfing and playing with HS friends. His wife had just had a baby & was at Yale Med, so she didn't come out--and he was happy to play all day. I'm still a little mad at him for criticizing me for not being present at the hospital 24 hrs a day. I couldn't get through his head that they wouldn't LET me stay and neither of us would rest if I did.
I agree--trying to deal with emotional stuff when you are so focused on the health of the patient!! Probably my best support was my SIL who was a med student at the time at the hospital where the transplant occurred. He was amazing and is now a fully board certified hepatologist. (only took 16 years!)
My DH's mother never called or sent a card. 'Nuff said. She said it was 'too emotional' for her. Please.
The "Walk of Giving" also occurred at the hospital where DH's liver was harvested. The quilt is also a beautiful reminder.
I did not write a letter, as DH didn't want me to. He was not answered and they said not to expect an answer. This donor saved 5 lives through her selfless donation. I hope someday her family can handle the letters of gratitude, Dh certainly wasn't the only one.
I wouldn't bring up the lack if support from Chuck's kids. Not now and probably not until things are more calm. Be forgiving, if you can be. You KNOW that life is short and tenuous.
We've been very, very lucky. DH is on ONE tiny dose of Tacrolimus (ProGraf) and even if he misses a dose now and then, his body and the donor organ were a great match. I hope that for you!
Regarding fiber - I use Organic India psyllium husk for my mom. It really seems to help. Mix it into a drink and voila lots of fiber but not a laxative. Chia seeds are also good - we mix them into yogurt for an extra boost.
Weird how distant his kids have been. Oh well, maybe they just don't know what to do or say?? And SD?? Whew. She's a piece of work and I am seeing permanent damage to any future relationship.
When do you head back to Denver???
Chuck is limited to what type of fiber he can take....they want it to come from food.
SD has to stop the nonsense w hating on me for no good reason or she will sacrifice the relationship she moved to Colo for...her dad, because he won't stand for visiting her and our granddaughter without me. She likes to hold grudges and be pissed off at family members for years at a time, too.
My half sister is a kidney donor! I hope your friend gets his soon and/or his donor is a healthy match. We have 2 men here in our group awaiting both a liver and kidney now....been here 3+ weeks already.
High in fiber, low in sugar: Cheerios-will be great for a travel snack maybe.
The nutritionists will advise you, but I was just reading about this, so sharing it with you.
I have been following your journey with amazement at Chuck's improvement, and your strength, and prayers.
So Chuck had a serving of the 17 gm cereal on Sunday morning and then 'wasn't hungry' for the rest of the day so I was like UGH. I 'fix' one thing which creates another, like a bunch of dominoes! LOL. So we're leaving the Smart Bran for 'now and then' mixed in with Cheerios and other assorted breakfast items. It's enough to drive a person mad, tbh.
The 'nutritionist' wasn't much help at all, honestly, just said "have him eat 2600 calories a day' which is easier said than done! I bought the Boost Very High Calorie Shakes which have 530 cals in 8 ounces, so that's one thing. Then he needs 2 more shakes to total 110 gms of protein a day (including food intake), 64 oz of water minimum, the fiber, the calories and he has not much of an appetite. So I also bought chocolate ice cream and chocolate milk at WF to make him a milkshake; his sugar numbers are good so there's some calories for him that taste good, too.
Cheerios has pesticides present and that can cause other issues with his compromised system. Cascadia farms is a good option and tasty too.
Avocados are really high in fiber and calories.
There is a lot to an apple a day keeps the doctor away. Organic only though because apples absorb pesticides. You need to eat the skin too.
Maybe finishing his day with an apple will help with not being hungry after having fiber.
Tell him to grin and eat it!
Emg test needs to be interpreted for us, too.
More doctors need to weigh in on what's going on., overall.
I forgot you're in a hotel without all the kitchen gadgets. I would buy some fruit and veggie cleaner at wholefoods or Sprouts to clean anything you don't have the gadgets for.
Why are you worried about the apple peels? Just curious.
I am sorry to hear about the Lupus. I have a cousin that has internal Lupus and it's a struggle for her.
I would ask his doctor about the protein in the shakes and if it could be hard on his kidneys. I have read that some proteins are harder for our systems to process. Just a thought.
Best of luck. I still say grin and eat it. But I have been drilled by generations of family, if you don't eat you'll die. Amazing how those things stick.
May The Lord show the doctors what is going on and guide them to a fix.
Wishing you and Chuck well and also your DD. Sorry to read that you've had a couple setbacks.
Apple peels and all fruit peels can be dangerous for immuno-suppressed people to eat b/c bacteria could be present on the skin if it's not washed properly. Since the water here in the hotel is not drinkable (IMO) and I have to use bottled water for everything, I don't trust washing skins and am peeling everything. When I get home, I'll feel better about having Chuck eat apple skins that I can wash/scrub in my sink with water.
Mayo insists the transplant patients drink 3 high protein shakes a day which do not count towards the water intake (ridiculous I know). Hi protein is vital to recovery. The shakes we use are recommended by Mayo, so I don't believe they are contributing to bad kidney numbers; it's dehydration related. I'm just hoping it's nothing worse going on NOT having to do with water intake/dehydration. He's working on bottle #5 tonight.
TY for the prayers, which I believe help. Llama, ty for the idea about the freeze dried raspberries and the well wishes; you are always so supportive to everyone here on AC.
Againx100, the rules are out of control and my head IS spinning b/c I always seem to forget something. One of the couples here is a sister & her brother; he is here for a liver and a kidney t/p. He's waiting; today she sends a message out to the WhatsApp group saying "Oh btw, my brother lives alone in CA so after the transplant, he plans to live alone. Do you all think that will be okay?" I nearly fell off the couch when I read that!!!!!!!!! Uh, NO, it will be impossible for him to live alone, for crying out loud! Who thinks of these questions NOW and doesn't get caregiving arranged beforehand? After care for transplant patients is when the REAL work begins, not when they're hanging around the hotel & swimming in the pool! No patient can POSSIBLY manage his aftercare alone. I can barely manage this myself and I'm in good health. If I wasn't watching this man like a hawk 24/7, I have no doubt he'd have died from that bile duct leak on May 10th, 11 days after his transplant! And/or 100 other issues that cropped up afterward. And that's not to say I'm some kind of special caregiver........it's just to say that someone has to look after the patient 24/7 and not even leave them ALONE for more than 10 minutes. At least for the first few months. Just figuring out how to load their pillboxes with 20 different meds that CHANGE all the time is confusing beyond belief. I'm sure Midkid can vouch for that, too.
His stomach is off too, which is likely med related, so I'm scrambling to figure out what to feed him that he can tolerate, poor thing. Ice cream milkshakes with whole milk (small ones) seem to be ok. Pudding and bananas too.
One day at a time, sweet Jesus, that's my motto. The good news is his liver numbers are excellent! And the kidney numbers are not horrible.....just on a downtrend that Mayo wants reversed NOW. Meanwhile Kaiser is blowing up his phone with appointments for follow ups in Colo when we don't even have a release date yet! 😣 I just pray to stay OUT of the ice cream myself tonight and not stress eat my way thru this....lol.
ITRR... The window shade you recommended is a lifesaver OMG. Thank you. And keeping the car windows cracked a bit has helped too, I'm sure. A black leather interior is not my friend in AZ. I have to say I love the sunny days here....much like Colo without the rain.
Oh Lordy, now *I* want ice cream...