My leukemia's back.

[donrae]

Dr appt today. They want to increase the cyclosporine (anti-rejection med) to combat the graft vs host. Starting slow, that's good with me! No decrease on the prednisone yet, though, I'm kind of disappointed. The liver is recovering nicely, but the lungs just aren't doing much. My pre-transplant FEV on the PFT was 94%, now I'm down to 47%. No wonder I can't breathe

. Still slogging through getting a pulmonary consult, as apparently this is going to be an ongoing condition.

Decided not to process that cockerel today, I want to be more available for the boys and I have a lot of kitchen/food prep to get done. A co-worker of Honey's had been off work after falling in the shower and cracking some ribs. Honey went to check on him last week and apparently he's had a stroke. He hasn't sought any medical care and doesn't want to. Part of me can respect that, part of me says Wow, some PT could probably get you to a higher level of function. He called Honey last night and said the girl who had been staying with him and taking care of him had left in his car the day before and he couldn't get ahold of her. He hadn't eaten since she'd been gone, so Honey took him some dinner and will take him more tonight. I'm not sure if he physically can't get to the kitchen and fix some food, or was just depressed and didn't eat. If he physically can't get food or water, how is he getting to the bathroom? Part of me thinks I should go over tonight and check things out. It's that bossy HH nurse that still lives in my soul......I'm fine with helping the guy out, and I'm fine with doing meal prep, things like that. But he can't just lay there and rot.

 

[3goodeggs]

I'll put him on the positive thought/.prayer list.
That is a tough row to hoe.
Does he have any family?
This is difficult because it is a co-worker, not on the family friend level.
Pride goes before the fall and usually sticks around until it is too late to change one's mind.
Good luck. You are a dear person.

 

[lazy gardener]

Does this man have any family? If so, perhaps you could call them, and give them a heads up. They might be able to talk some sense into him. If his basic needs aren't being met, is this a situation where Adult Protective Services should be called? It's a fine line between refusing medical care, and being incompetent to make those decisions. How bad is his stroke? Was it even diagnosed? Does he realize that a lot could be done to make his life and recovery easier??? You've got enough on your plate that you don't need to own this one. Rachel, you have a good heart. There may be someone closer to the situation who could step in and own it.

 

[LittleLakePhil]

Rachel sorry about your lung function. I definitely understand. not being able to breathe is the most horrible thing. Just curious are you short of breath or is it physically hard to breathe. With me I don't get short of breath so much as I physically cannot breathe. Which is why I end up staying awake for days on end. Because when I try to sleep I quit breathing and wake up.
I hope your lung volumes improve. I'm really sorry you have to go through this.
I'm a bit confused as why this is happening to you. And why steroids aren't helping. Granted I'm not a doctor.But I'm not ignorant either.With me my lungs actually got better after my transplant because off all the steroids. Unfortunately they ruined my joints but it is what it is.
I'll keep you in my thoughts and prayers as always.And just remember in the middle of nowhere michigan someone is routing for you....Phil

 

[donrae]

About the co-worker (Ron)...

I know very little about him. He's nearing retirement and has worked for the local hospital pretty much all his life. He's a "hard liver", favorite place is the local bar, that kind of thing. No idea about family, etc. My HH nurse self has been asking all these questions and debating about getting APS involved. I don't know what he physically can and can't do. He told Honey his left arm is non-functional and it takes him half an hour to get dressed. Okay, that still leaves a lot of questions to me. Honey's on his way home now and we'll see if I go over there, or just give him a check list of things to look for. No idea if he's showering, able to do laundry, things like that. No idea how much might be depression and/or ETOH withdrawal, if there's no one to buy him booze. It's really a fuzzy area for me, as he's not someone we ever socialized with.

So, I made some stroganoff and roasted cauliflower for Honey to take. Didn't realize I was making a white meal, maybe I'll add a roasted carrot or two for some color. It looks funny

 

[lazy gardener]

Rachel, chill! You're dealing with a guy who's living alone, his best friend is his bottle. I'm sure he won't care if there's a carrot! The fact that you're making a meal to send is great. I wonder how long it's been since he's had a home cooked meal? Worse case scenario if you call APS (I'm sure you know that you can do it annonymously) is that they'll check the situation, and determine A: there's a need for them to be involved. or B: they don't have enough issues to warrant involvement. Either way, you've alerted them to the potential problem.

 

[Blooie]

I agree with LG - you can't take on too much right now with your limited lung function, so why stress over a white meal? Sprinkle some black pepper on it and call it good! You've done way more than most would have.

And remember, my friend, that he may be sick with something else to have gone downhill so quickly, so protect yourself at all costs! We admire you and Honey for your kindness, but you do need to be careful.

 

[donrae]

Oh, I wasn't really stressed about it, is just looked funny. The roasted cauliflower was great, I've never done that before. A keeper!

Honey and his boss went. the "caregiver" was back and things seemed okay in the house. Apparently he was pretty tanked when Honey was there yesterday cause he didn't remember Honey was coming back today. But he says he's able to use the bathroom, dress himself, and can walk out to the car with help, but not drive. I think he was just having the poor me's yesterday with the cg gone. I honestly am not at all interested in getting involved in an alcoholic's social situation. He's got family who want nothing to do with him, and there's usually a reason for that. Again, not that I want him to just sit there and die, but it sounds like that's not going to happen so I think we're good to take a step back. I'm still fine with Honey going over there, and we can help out some, but things aren't as bad as I was thinking they could be. He agreed to ask his doctor on Monday about getting Home Health, so that's a good step.


Phil...about the breathing. I'm fine at rest. I'm okay walking a strolling pace on level ground. I get SOB walking fast, or uphill, or doing things that involve bending/lifting, like feeding the birds or the horses. Things like grocery shopping are okay, cause I'm not in a hurry. I cough and cough and cough, and feel I have to work very hard sometimes to clear my lungs of sputum. The coughing exhausts me, but I've got to get that stuff out

. I really need to trial some mucinex or such and see if that helps.

I don't have any sleep apnea symptoms, that sounds like what you have. Have you had a sleep study or used a CPAP? Honestly, I don't know if I could tolerate one, but folks who use them swear they get a great night's sleep.

I know I don't feel the steroids are helping, but then again they may be and I just don't realize it. Wish I could quit them cold turkey for a few days and compare, but that's a bad idea

. I do know I'm going to have to stop eating at some point. Halloween candy is a bad, bad idea right now

.

did you have to go back and forth on your antirejection meds? I'm trying not to feel like increasing the cyclosporine is a step backward. Going on the prednisone bothered me some, but not as much as this does.

 

[N F C]

Good morning all! Looks like I missed out on a lot by going to bed early last night. Hope you all have a great Saturday!

 

[Blooie]

Ken has sleep apnea and they gave him a CPAP to use. He hated it - said he felt like he was drowning. He has the worst sinuses in the world, I swear, and that mask over his face made it so much worse! Inherited that from his mom, most likely. Anyway, they gave him a different kind of CPAP to use that has like a nasal cannula and he can use that one all night with very little trouble. His lung function is really bad due to his sarciodosis. I don't recall what his last PFT numbers were but the tech winked at him and asked, "How'd you even get here?"