BroncoFreak_2K3
sucker for Orange
Thinking positive thoughts for you and your wife. Hank in there cheesy.
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My life after the passing of my wife - 6 years later!!! (1 Viewer)
- Thread starter cheeseypoof
- Start date
CurlyNight
Footballguy
When it rains it pours. So sorry to hear about her bff. Certainly not what she needed on top of her own struggles. I know how she feels. My bff's sister, my friend too, was diagnosed and died of cancer all within 4 months of months after my diagnosis. I hope she continues to stays strong for herself. I pray that phone call comes very soon and you can all move forward. The waiting game is the absolute hardest thing in the world.
Do they routinely test her #s and move her up if her condition worsens?
Do they routinely test her #s and move her up if her condition worsens?
Last edited by a moderator:
cheeseypoof
Footballguy
comfortably numb
Footballguy
we get her home?
cheeseypoof
Footballguy
Yes. She got discharged around 3:30 pm. Then the ordeal started. Took valet almost 90 minutes to retrieve the car. Wound up getting my valet fee refunded. Big whoop, $13. Took all I had not to flip out (ok I did vent some steam to keep from fully going off). Supposedly caught in traffic from the "far" garage. I must have been the only car in the far garage because everybody seemed not to have an issue getting their car.
Finally got the car around 5pm, just in time to make the trip home in the middle of Friday afternoon rush hour. Oh joy! Got home around 6:15pm. The rest of the evening was quiet.
Finally got the car around 5pm, just in time to make the trip home in the middle of Friday afternoon rush hour. Oh joy! Got home around 6:15pm. The rest of the evening was quiet.
cheeseypoof
Footballguy
Thank you Shady. I'm doing my best. Drawing inspiration from you and your beautiful daughters situation. Your family remains in our thoughts and prayers.
Cheeseypoof.
Chadstroma
Footballguy
Good to be going home and that she is well enough to.
Glad to hear there is a way to donate time~ never heard of that before but it is a cool option for work colleagues to help support.
How hard is it to find a liver transplant? Expected time line?
cheeseypoof
Footballguy
Tough to say what the time line is.
Here is some info explaining the process if your interested:
http://www.hopkinsmedicine.org/healthlibrary/conditions/liver_biliary_and_pancreatic_disorders/liver_transplantation_85,P00677/
Her doctor thinks based upon her medical condition we are most likely in a weeks to months time frame. That's based on her experience but it definitely isn't written is stone.
skol asylum
Footballguy
More thoughts and prayers heading your way. Hope she gets that new liver soon.
steelerfan1
Footballguy
glad to see your wife is back in the comfort of her own home cheesy. continued prayers her way.
Mrs. Rannous
Footballguy
I'm so glad she'll be able to rest in her own home. Waiting the hospital sucks.
cheeseypoof
Footballguy
First the good news. My wife's sodium level is up to 130, which is great. The bad news is this decreases her MELD score to 22. The MELD score is what they use to place you on the transplant list. That's "bad" news because that will increase the wait time for a new liver since she'll be lower on the list. This is going to be a roller coaster ride.
Binky The Doormat
Footballguy
Sorry on the wait cheesey - but lets keep hope your wife keeps improving.cheeseypoof said:
BroncoFreak_2K3
sucker for Orange
CurlyNight
Footballguy
Sucks on the wait but sodium is important for vital organ functioning like the heart, so getting it in the normal range is great news. It sucks that as some of her #s improve this puts her further down the urgency list. But look at it this way that while the wait may be longer, hopefully labs improving means other complications won't creep up to deal with.
cheeseypoof
Footballguy
Update coming shortly...as soon as the nurse leaves the ER treatment room.
cheeseypoof
Footballguy
Let see. She was discharged from Penn on 5/13. Same day as she found out her BFF passed away. Viewing was Thursday and the funeral was Friday. Friday night after the funeral the abdominal/kidney pain started again. She stayed in bed all weekend. I'm sure the emotional stress isn't helping matters at all.
She had a follow appointment with her liver specialist today. Explained what's happening and we were sent to the ER at HuP while they wait for a bed to open up.
Sounds like a kidney stone, again, but she has difficulty passing them (if that's really the issue) due to her fluid restriction.
She had a follow appointment with her liver specialist today. Explained what's happening and we were sent to the ER at HuP while they wait for a bed to open up.
Sounds like a kidney stone, again, but she has difficulty passing them (if that's really the issue) due to her fluid restriction.
CurlyNight
Footballguy
cheeseypoof
Footballguy
Not a kidney stone. Second thought was gallbladder related. Nope. Settled on colitis, again. Although not as symptomatic as previously times.
She's had an ultra sound and CT scan of her abdomin. She is going for an MRI tonight. With a colonoscopy tomorrow. Suspect we'll be here until at least Thursday.
She's had an ultra sound and CT scan of her abdomin. She is going for an MRI tonight. With a colonoscopy tomorrow. Suspect we'll be here until at least Thursday.
BroncoFreak_2K3
sucker for Orange
CurlyNight
Footballguy
Always in my ts & ps... X
Mrs. Rannous
Footballguy
If they even slightly thought it might be a kidney stone, it must really hurt. (Mr R gets kidney stones.) I sure hope she feels better soon and gets that transplant.
cheeseypoof
Footballguy
cheeseypoof
Footballguy
Well it wasn't a kidney stone. It wasn't gall stones. It wasn't colitis. Don't know what it was. Colonoscopy was fine, showed nothing. At a loss. But on the plus side, looks like she'll be discharged tomorrow, albeit with more questions than answers.
CurlyNight
Footballguy
Hopefully whatever it was was nothing and has passed, and she'll be resting well at home until that phone call comes soon. It seems once you're done waiting for something you're waiting for something else, wondering if this wait stuff will ever end. It's maddening. Try to keep busy with things you enjoy, both of you together and separately if you aren't already.
cheeseypoof
Footballguy
Still on track to get out of here tonight, it's just going to be very late. Decided to give her a treatment for one of her other underlying medical conditions that she was due for today. On an outpatient basis at the infusion center it takes about 3 hours. Due to hospital protocol it needs to run for 7 hours. We are about 4 hours in. Don't care as long as we are out of here tonight. Overall she's feeling pretty good.
freakinback
Footballguy
T & P.
cheeseypoof
Footballguy
Woohoo. Got sprung about 12:15am, yes am. Got home around 1am. 7am alarm for work. That's a 50/50 proposition at this point. LOL
Mrs. Rannous
Footballguy
I'm glad you are home, where the wifi connects automatically.
comfortably numb
Footballguy
Godsbrother
Footballguy
cheeseypoof
Footballguy
Her blood count numbers are pretty stabile currently so her MELD score is around 22-23. She is on a weekly blood work protocol so that gets re-evaluated weekly. Her blood count numbers go down, especially sodium, her MELD goes up. Doctor still has her listed as desperate. Still just a wait and see game now.
We are heading down the shore tomorrow to her cousins "beach" house for some much needed R&R.
Buzzbait
Footballguy
How you can relax and enjoy the downtime. Good luck and I hope a donor is found soon for your wife.
CurlyNight
Footballguy
Hopefully you have Mon off so you have a nice long memorable weekend.
cheeseypoof
Footballguy
Update:
Not much to update but here goes.
20 days since her last hospitalization My wife is feeling ok for the most part with a few bad days sprinkled in. Blood work has been relatively stable. So we just continue to wait for the call. Life kind of sucks because we can't do a lot. We try to avoid over doing things because that usually exacerbates the swelling in her feet and legs and it takes a few days to reduce.
My wife thought she was allergic to penicillin since I've known her. She'll be on antibiotics after the surgery and they usually prescribe penicillin based meds. So they did a penicillin allergy test last week. She passed the test by failing the test. Skin test, subcutaneous and oral tests all came back as negative. So it appears as though they will be able to prescribe the regular course of post transplant antibiotics after her transplant happens. That's one potential complication avoided.
Dont recall if I mentioned that her liver specialist is leaving Penn for Baylor Medical Center in Dallas at the end of the month. She is doing everything she can to make this happen before she leaves. Her Doctor actually gave us her personal cell number to keep her informed of the progress if surgery doesn't happens before she goes. We are going to miss her tremendously. She is the sweetest person and has the greatest bedside manner we've ever experienced. She, the doctor, was upset at our appointment yesterday over the possibility of not being here when surgery happens.
Thanks for your continued thought, prayers and wishes.
Cheesey
Not much to update but here goes.
20 days since her last hospitalization My wife is feeling ok for the most part with a few bad days sprinkled in. Blood work has been relatively stable. So we just continue to wait for the call. Life kind of sucks because we can't do a lot. We try to avoid over doing things because that usually exacerbates the swelling in her feet and legs and it takes a few days to reduce.
My wife thought she was allergic to penicillin since I've known her. She'll be on antibiotics after the surgery and they usually prescribe penicillin based meds. So they did a penicillin allergy test last week. She passed the test by failing the test. Skin test, subcutaneous and oral tests all came back as negative. So it appears as though they will be able to prescribe the regular course of post transplant antibiotics after her transplant happens. That's one potential complication avoided.
Dont recall if I mentioned that her liver specialist is leaving Penn for Baylor Medical Center in Dallas at the end of the month. She is doing everything she can to make this happen before she leaves. Her Doctor actually gave us her personal cell number to keep her informed of the progress if surgery doesn't happens before she goes. We are going to miss her tremendously. She is the sweetest person and has the greatest bedside manner we've ever experienced. She, the doctor, was upset at our appointment yesterday over the possibility of not being here when surgery happens.
Thanks for your continued thought, prayers and wishes.
Cheesey
