Lealonnie and Hubby: Liver Transplant Journey

Oh, I didn’t forget. I haven’t forgotten either that April was April.

If we were talking about any other OP here, particularly a new one that we didn’t know, we’d be collectively telling her that her husbands health is something that they as a couple have to handle as they are competent.

Three operations so far under a general since April. Systemic haywire. Yeah, they will need more help once he is outta there, which apparently he’s not yet but will be.

Doimg exotic and extravagant procedures just guarantees future problems. But here people are talking about what, dog booties and ensure plus? That is not the issue. The immediate issue is that the daughter agreed to marry this man and op doesn’t seem to care about what that does to her daughters fiancé and to their relationship, according to ops own words so far.

Yes Peggy, you are finding it entertaining or you would stop. Or maybe your nastiness is self soothing?

This isn't propping them up, it's helping out during a crisis. HUGE difference! That you obviously can't differentiate.

Any male that isn't willing to let his fiancée step up to help after surgery should be kicked to the curb, because he will obviously be to controlling, however, you just assumed it is about the help she if giving.

@ PeggySue2020,
Did you forget?

lealonnie1
Apr 29, 2022
PeggySue.....please STOP commenting on this thread. Thank you.

Reporting your continued disturbing comments to the ACCM, hoping you will be deleted from this supportive thread.

iSRR, I have found none of this entertaining at all.

There is already a need in the RN daughter having to sort pills. And now she’s there putting her relationship in jeopardy because, obviously, there are greater needs. That will not go away. And OP knows this. or should.

Lea, excuse me.

Peggy, knock it off. You obviously have NEVER been in a life or death battle for your husband's life or you would stop with the effing poking at Lealonnie.

That you find this entertaining or self soothing shows what you are and I find you reprehensible to continue with your snarky comments.

Grow the f up!

The fiancé is unhappy about your daughter devoting all her time to taking care of her stepfather. If it were her real father, he would probably feel the same.

You are the aging parents now. You have a responsibility to not keep blowing up her life. Sure she may quote unquote agree now. But it won’t just be today that he and you need this. You have heard, we have all heard, about what this does to people’s relationships.

The purpose of threads on forum isn’t to just say what you want to hear.
, which you have insisted on for over a month here. The purpose of forum is to impart advice, and most people here have heard advice that is emotionally painful, not just the smiley cookies.

Dang, on that fiance is all I can say. I am glad DD will be with you and you can talk. My suggestion is that when we have the bust up of a marriage we understand often enough that we KNEW ahead of time what problems would take us down. We just thought we could fix it. But nope, the problems we take on going in are a part of the contract, and there are only more coming. I hope, if it is apparent that there cannot be support with all now she is going through, then there is some recognition that there may never be. I am so relieved she is an RN because this means she can be safe no matter where she lives and has to work. That makes a good deal of difference in what we will put up with.
I am glad you will have that support. Always good to get your updates, the first place I come in the a.m.

Thank you newbiewife, great suggestions!! He is drinking the Boost VHC shakes now, but the other I haven't heard of. Sounds good with the frozen fruits added in, and maybe something his stomach would tolerate. I had to laugh at the avocado which Chuck calls 'a tool of the devil' so we won't be adding that in either! LOL

The new plan is for him to up his water intake by 32 oz a day, one med has been reduced again, and the head of the transplant dept is seeing him on Weds; he has appts Sun-Weds and I am hoping this all gets straightened out by then. Today was a pretty good day, thank God. There was another man here last year who had bad kidney numbers consistently and it all turned out to be WATER/hydration related, which may be Chuck's issue too. Getting his nausea/constipation issues under control (which we've been doing) helps him get in more water.

DD is back with us on Sunday afternoon & working in the lobby from 6 am - 5 pm daily until we leave. It'll be cramped in this little room with 3 of us here, but it'll also be good to have her back. We did his weekly pill boxes together, had dinner and had a great chat too. Her fiance is NOT being very supportive of her right now, so I'm glad she has us to vent to/talk with.

If you're in need of ideas for more calories to incorporate, there's a supplement called "benecalorie" that has 330 calories and 7g of protein in a 1.5 oz container. Made by Nestle, available online. We make my husband a morning smoothie with the very high calorie Boost (550 calories), the benecalorie, and some frozen fruit that I first defrost in the microwave, sometimes 1/2 banana also. We've used frozen mango, papapya, peaches, strawberries, and blueberries. Haven't tried pineapple. Tried frozen avocado and also greens, but those were not a hit!

Lea, I know you know it, but much as you all want to see home again, I am somewhat relieved you won't be leaving until they believe it is safe to do so, and until all testing and treatment is done. Thinking about you all so very much.

I will pray you stay out of the ice cream!!! ...and for Chuck :-)

Oh Lordy, now *I* want ice cream...

So we're here at Mayo at least thru mid next week. Chuck's kidney numbers aren't looking as good as the doctors would like them to look, so meds are likely to blame. He's been switched from oral to inhaled/nebulized (monthly) for the antibiotic, and taken down on an anti rejection drug. He'll be monitored closely to see if his numbers improve. Meanwhile, he still needs a consult with hematology and neurology about the drop foot and EMG test results. He was run over by a car at 6 yrs old, hospitalized for 3 months, in a body cast in traction the whole time, with a badly broken right leg, so THIS must be the "past trauma" they're seeing on the EMG. It just dawned on him today!

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.

ITRR...yes, I know. I'm just being super paranoid 🙄

Lea, I know our water is very hard and not pleasant to drink, especially when you are use to mountain water but, it is safe to use. Municipal water actually has more regulations then bottled water. Just an FYI.

Lea: You're very welcome in regard to the raspberry product. And thank you for your kind words; I appreciate you.

ITRR: It's not 'Lupus'.......it's an anti-coagulant disorder that's called "Lupus Anticoagulant"........not related (in most cases) to the disease of Lupus. I remember asking his PCP years ago about Lupus (which his sister had) and he was negative; although things CAN change, I suppose. I'm curious to speak to the hematologist further.

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.

Lea: Speaking of raspberries, I found some a few months back on Amazon. They were called "Jungle Powders freeze dried raspberries." Maybe you would want to give them a try.
Wishing you and Chuck well and also your DD. Sorry to read that you've had a couple setbacks.

Are they counting the shakes as liquids?

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.

Lea - OMG there are so many RULES you have to follow! It's a fulltime job! Your head must be spinning trying to keep it all straight! Take some deep breaths and roll with the punches. I'm confident you can handle it all with a smile on your face and that Chuck, ultimately, will be fine.

Yes, he will eat fruit and oatmeal but raspberries are too hard to properly wash, same w blackberries. I've been peeling apples bc the skin worries me, at least for now. The trouble is volume...no appetite ITRR. And inability to drink enough water along w all the rest of the shakes and everything, it's too much. 64 oz is all Ive been able to get him to drink of plain water. He's just struggling right now, kidney numbers are off, so labs have to repeat again tomorrow 🤐 Not sure it's ALL about water.....we will see. He also tested positive for Lupus Anticoagulant which is an autoimmune disorder causing the PEs in his lungs.

Emg test needs to be interpreted for us, too.

More doctors need to weigh in on what's going on., overall.

Lea, will he eat fruit on his cereal? Apples and raspberries are high in fiber and taste good. Oatmeal is a good option and you can add nuts, fruits, cream and butter to increase the calories.

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!

Thanks SendHelp!! He does eat Cheerios and likes them, but they only have 3gms of fiber in 1 cup. I researched high fiber cereals a couple of days ago online at the Whole Foods site and found one with 17gms in a 3/4 cup serving: Nature's Path Organic Smart Bran is what it's called. There's another one that has 10gms per serving Cascadian Farms Hearty Morning Cereal (for those times when 17 gms is just TOooooooo much to tolerate) :) The Morning Cereal is flakes, too, whereas the Smart Bran is more like bits of sticks. HA!


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.

Lealonnie,
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.

Againx100, his last appointment is Thurs here in AZ. He may be released by Mayo afterward, but then has to be released by Kaiser also. Kaiser Colo called this morning and set up an appt for Chuck with his PCP in Colo on June 8th....so....we are getting close. Results of the EMG nerve test will be in at 3, and he has to meet with the hematology team again regarding blood clotting test results, so we'll see.

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.

Such an amazing journey! What a roller coaster. My mom's caregiver's husband is on the kidney transplant list and is REALLY close. Had a false alarm a couple weeks ago and a friend is willing to donate and is nearing the end of the testing so I will hopefully be closely following another transplant success story soon.

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???

Lea--

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!

Mid, Chuck has 4 months of prednisone, so another 90 days for him. We are both going to write a letter of thanks, I don't know when, but neither one of us wants to 'overthink' it or we'll never actually DO it. DH wants me to write a letter too b/c of how this transplant affects my life as well as his. We know nothing about the donor except that s/he was 'very young'. We were told that very, very few recipients ever hear back from the donor's family, which is understandable imo. I have a good friend who's a RN and here is what she said to me yesterday:

"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.

Lea--

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))

This has been one LONG month and unbelievable all that has occurred. Happy Anniversary to Chuch. I figure as long as this liver has been with him now they are "making friends".

For those too young to remember Mr. Gibbons:

https://en.m.wikipedia.org/wiki/Euell_Gibbons