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Posted 7/2/2013 4:56 AM (GMT 0)
Hello All,
Well, they told me hubby has sepsis which was causing the fever. They have done several culture screenings and bacteria shows up only in one. So he has a bacteria, but they can't understand why it is only showing p in one culture. He has a urinary infection, which is odd for men to have. So his case has them baffled! At first they said he had hemolytic anemia, but that has changed. They are still awaiting the 24 hr urine test to determine if he has Wilson's disease. I requested a second hep test, so they are waiting on those results. He will see the cardiologist to check his arteries and pressure, then from there transplant will be determined. He has already been transported to surgical ICU, so I am thinking things are being expedited. His MELD score went from 27 to 36, but back down to a 31. The doctors are pushing to get things done, which makes me feel good. I believe a liver is around the corner the way they are speeding things up.

Well, he got to surgical ICU and I get there to find out I won't be able to stay... I was in shock, as I have not left his side. I feel bad cause I don't want him to be alone. The nurse said he is in good hands, and they will notify me of any changes or moves. She also said I need to go home, shower, and get plenty of rest. How can I when my love is in the hospital without me? It is a hard situation, but I know he is in good hands.

Just wanted to update since it has been since Saturday since I posted. So I am hoping transplant is sooner than later, like in a day or two sooner. Can anyone tell me how it goes once moved to surgical ICU? Does that mean an organ is there? Any experiences with surgical ICU?

Tasha confused

Post Edited By Moderator (hep93) : 7/2/2013 12:10:41 PM (GMT-6)

Posted 7/2/2013 6:59 AM (GMT 0)
Hi Tasha! Sorry to hear that they diagnosed sepsis in your hubby. They'll have him on serious antibiotics - they just need time to do their job! They will not transplant if he has an active infection, in fact they will usually 'suspend' his listing until the infection is cleared. I just wanted to tell you that so you wouldn't worry so much if they told you he wasn't on the list right now. When was he listed? As for the surgical ICU, I know they will put non-surgical patients there to keep a better eye on them, especially if the medical ICU is full. It doesn't mean that a liver is there - you would have already been told if there was. When they get a liver that matches your husband - they will call, tell him that a liver is available, and then ask him if he's ready. Once a liver is removed from a donor, it only stays viable for a maximum of 12 hours (and that's pushing it) - they prefer 9 hours or less. My fiance received his new liver exactly one month from the day he was listed - the average wait for our area is around 3 months.

You guys will be in my thoughts and prayers. Keep us posted and hang in there!

Have a peaceful day.
Posted 7/2/2013 11:37 AM (GMT 0)
 I think Splashdancer is correct , They likely have him in ICU for monitoring . Don't beat yourself up for not being there every moment . Remember you have to stay strong for the both of you , and that means you need rest and moments away from the insanity of all this . My wife has children of her own and a job , It would have been foolish for her to have been with me constantly .

 Ziff 

Posted 7/2/2013 12:01 PM (GMT 0)
I also agree with splashdancer. If there is active infection, they will not attempt a liver transplant. Being in ICU will allow the team to monitor him very closely and address his infection. He will hopefully be one step closer to transplant once the infection clears.
Posted 7/2/2013 1:45 PM (GMT 0)
From what you said on your husband's MELD, it looks like he is getting close to the top. They want to get rid of the infection. His MELD may change, as you know. When my husband was in Surgical ICU, I could not be there for two hours of rounds at night, two in the morning. Since I had not slept for over 20 hours at that time, I went to the hotel next door, showered, ate and slept. I woke up two or three times and called....and the nurse was great. Once I knew he was ok, I could sleep a couple of hours uninterrupted. A few hours away from the madness made me a better caregiver.

Your husband is needs you to help as a caregiver. You have been so stressed over the Hep C dx, and back in hospital and also caring for a child. If you get sick, you can not be with him post transplant. Get the rest in short chunks. I have learned to step back when possible and take care of me...but it is hard to find those chunks of time. We are at Mayo AZ for transplant eval this week. I am keeping you in my heart, Tasha. This is all very difficult. You are doing great. Stay well, and keep in the moment, as much as possible. Big hugs to your family. themiz
Posted 7/2/2013 6:23 PM (GMT 0)
I agree with what others have said. Also, every hospital ICU I know does not allow anyone except close family members to be with the patient, and then only during designated visiting hours. This is the time for YOU to get some rest and take care of yourself. Believe me, you will be VERY busy post transplant. And, as was mentioned, you can't be around him at all if you get sick. The important thing is for them to rid him of the infection so he can be transplanted.

With a donor liver, it not only has to be the same blood type, but also a tissue match. Since he has hep C, he may get a hep C liver. As mentioned, you will get a call when they have a liver that matches him. It may have to be transported from another state. It will be a last-minute thing. But be prepared. Pack a bag. You will need to be close by after transplant to be at the hospital every day.

He will be in ICU after transplant and then be moved to the transplant floor. I ended up staying in ICU for 4 days because they had no room available on the transplant floor.

Please do use this chance to take care of yourself. I believe your hubby will get a transplant very soon, once he's cleared the infection.

Hugs,
Connie
Posted 7/3/2013 5:56 AM (GMT 0)
Thanks everyone for the encouraging words!! It has really helped me through. Hubby is free of infection and high on the list for his blood type. His coordinator said she will be on call this weekend, as it is a holiday weekend and plenty accidents happen, so who knows. I am really optimistic about the process, and his coordinator is too.

I am keeping busy at home with the kids and chores. My parents have moved into help us financially throughout this tough time. I really helps to have them around while I'm going through this. I am grateful for them. But my dad told me to get my rest, as I'll need it post-transplant.

Thanks for your prayers as they are keeping me going!

Much Love,
Tasha
Posted 7/3/2013 6:35 AM (GMT 0)
Tasha, I ran myself ragged before my fiance's transplant - I was having to do EVERYTHING, wasn't sleeping or eating, and was very stressed out! Well, I ended up getting sick. My immune system was shot from the lack of sleep, food, and liquids. As a result, I caught something while pacing those halls at the hospital. After the first day post-transplant, I was not able to see Robert until he got home! I was literally barred from the hospital - mask or no mask, I was not allowed on the transplant floor because I had an unrelenting fever and a cough (and a headache, nausea, dizziness.....I was SICK!). It was a nightmare. I stayed in constant contact with his nurses (they were fantastic!) - day and night. But I couldn't see him - it was horrible. And then when he got out, even though I was still sick, I had to take care of him because I'm his caregiver. I just wore a mask all the time and used (literally) bottles of hand sanitizer. Whatever it was that I had, I did not get completely over it for close to 3 months.

Moral of the story? PLEASE take care of yourself! Accept help from others, get sleep whenever you can, eat and drink lots of fluids. Your hubby does not 'need' you in the hospital (that's what doctors and nurses are for) - he will NEED you when he gets home!

Have a peaceful day.
Posted 7/3/2013 6:53 AM (GMT 0)
Thanks Splashdancer, I will heed your warnings and rest myself. I won't be any good for him if I get sick. It's hard not being there for him, but I guess it's best I get my rest.

Have a blessed night!
Posted 7/3/2013 4:55 PM (GMT 0)
I was very sick with flu while brother was hospitalized with serious HE prior to transplant. I was in one corridor, my brother the opposite, same ward. Was there 4 days and wasn't allowed to visit him obviously. They didn't even want me leaving the room with a mask.

Somehow, wonders never cease, between the staff and my sister, he was taken care of without my vigilance/input :)
The point being that because I let myself become rundown, I was precluded from being there for him.

I think I needed the mental break though. When he annoyed me, I would only take so much before I let him have it! Then I would feel guilty that I snapped at a loved one who was so sick and through no fault of his own, found himself in the bowels of this godforsaken disease.

So I would have my tantrum...get away from him for a bit and then put a smile on like nothing ever happened, and he did the same.

Mae

Post Edited By Moderator (hep93) : 7/3/2013 11:22:51 AM (GMT-6)

Posted 7/3/2013 5:23 PM (GMT 0)
Tasha, I am glad your parents are there to help you.

Mae, how is Richard doing now?

Hugs,
Connie
Posted 7/3/2013 6:09 PM (GMT 0)
Connie,

Viral load in April = 63,000,000
2 wks after after treatment started = 700,000
Had to drop incivek due to pancreatitis 6,800
2 weeks ago = 1,680
Today. = 254


Moving in right direction :)

I will check your blog to see how YOU
Are doing. Typing gets a bit painful

Right now he is at an appt at MGH in boston to comtinue his tx

Hugs
Posted 7/3/2013 6:46 PM (GMT 0)
Holy mackerel...those are some some fine numbers!

Best to you both...liver and arm.
Posted 7/3/2013 8:14 PM (GMT 0)
Mae, how is his bilirubin doing? Just remember it takes a long time, mine just fell in the labs range of normal over the last month. So that was almost 6 months of increased bilirubin before it was normal again.
Posted 7/3/2013 9:00 PM (GMT 0)
Waiting to hear back Syxx. He's still at mass general. He only told me about the viral load on phone. We used to just look it up online but now he uses quest, a local lab so not sure we can go view it whenever we want darn it

Ty Lama :). They sure are !
Posted 7/3/2013 9:38 PM (GMT 0)
My labs aren't done at MGH, but I get them online from MGH. Glad to hear your brother is at MGH and won't have to travel so far. What doc is he seeing?
Posted 7/3/2013 11:05 PM (GMT 0)
Right now he's seeing Muse and will go
From there. Just found out he's in the ER because he vomited and displaced his NG feeding tube....always something!

They don't have the right parts so will have to wait. Meanwhile stick to regular food with no supplement for now.
Posted 7/7/2013 5:52 AM (GMT 0)
Hey Tasha! I tend to be better at giving advice, than I am at taking it! If I had only listened to the wise folks here at HW, I may not have gotten as sick as I did. More than a few members told me to take it easy, get some rest, take care of myself. And I did try, but I'm stubborn and think that I can 'do it all' - it's a curse. Hope you are starting to get some rest and taking care of YOU! And how is your hubby doing? Please let us know.

Have a peaceful day. :-)

Post Edited (Splashdancer) : 7/6/2013 11:55:30 PM (GMT-6)

Posted 7/7/2013 5:32 PM (GMT 0)
Mae, those are fantastic numbers! Do they know why Richard vomited? That's one thing I HATE doing. I fight it. I haven't had emesis since 2003, after being on a bland hospital diet for 7 wks. and then first day home ordered spicy Chinese. Big mistake.

Splash, Tasha posted an update of her hubby today. Maybe you've seen it by now.

Hugs,
Connie
Posted 7/7/2013 8:17 PM (GMT 0)
Ah Connie, you just reminded me of something that happened to Robert several years ago. He had just been released from the hospital after spending 2 weeks there for pancreatitis - and he was STARVING! I guess it had been about a month since he'd eaten any solid foods, because he had been sick for a couple of weeks before he went to the ER. He didn't even want to wait til we got home, so off to the hospital cafeteria we went. They have a really nice salad bar - and in spite of my protests, he piled his plate with all kinds of salad stuff. It took him about 10 mins. to finish it off! Then we got up, walked into the hallway, he grabbed his stomach, and BAM, he hit the floor! Long story/short, he ended up spending another 3 days there. They told us that raw vegetables are among the hardest foods to digest. Geez, who knew?! rolleyes
Posted 7/7/2013 11:49 PM (GMT 0)
No Connie. No apparent reason for vomiting other than maybe the double-treatment for hep, ribavirin and Pegasus.

Syxx 14.6 on the bili. Small improvement ;)
Posted 7/8/2013 12:46 AM (GMT 0)
An improvement is all that matters. My bili was above 10 from Oct until March, 3 months after stents.

It takes a long time to clear when its so high. I read an article about research done to determine how long after stenting to see normal numbers. It was interesting. took into account bili and how long they were at that level. I will try to find again and post.

Post Edited By Moderator (hep93) : 7/7/2013 8:36:00 PM (GMT-6)

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