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Stephanie
Member
Username: Casmr36
Post Number: 4
Registered: 04-2011
| | Posted on Wednesday, October 12, 2011 - 06:27 am: | 
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My husband had a severe variceal bleed about a month ago, and they did a TiPS to prevent that from happening.
His score before the bleed was 16, during the bleed they said it was a 21 but that it would probably go back down to 16. Well the check up a month later showed that his score actually went to 20.
Then 2 weeks ago he was having trouble sleeping and his hands were shaking severely so back to the ER we went. They drew blood and it turns out his score had jumped to a 23. Putting him at #2 on the list.
Everybody told us that they couldn't give us a time frame on how long the wait would be but they hinted at it. "Oh Mrs Rhodes your husband should still go to his Oct 14th appt but he *might* be in the hospital by then you never know."
So for 2 weeks we've been jumping everytime the phone rings, bringing packed bags with us everywhere we go. And I know we're lucky that this is happening so fast, I feel so horrible for the people that wait years and years. But even knowing that, and this is selfish. But I'm just so worn out waiting on the call that they found a liver is draining me. And I can see my husbands health declining, sleeping a little more each day, more nausea and vomiting. More pain. I just hate to see him like this and the waiting is killing me.
Man when people say "The first year of marriage is the hardest." They just have no idea do they? |
LindyB
Member
Username: Lindyb
Post Number: 130
Registered: 07-2009
| | Posted on Thursday, October 13, 2011 - 11:08 am: |
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Stephanie,
You sound exhausted. It is exciting (and scary) that your husband is close to getting his new liver. My husband waited for almost 2 years. He too got very ill and slept a lot. His MELD score was at 26 when he got his. It is so hard on the caregiver to watch as our loved one gets sicker and sicker and not knowing WHEN the call will come is really really tough. I remember saying and thinking all the time "I just want to be on the other end of this". You will get there, you will. I hope you are finding small ways to get some relaxing in. For me, it was actually when I went grocery shopping. I took my time. I worked my full time job thru the whole waiting period and took a month off when he got his transplant.
Just in case you don't know this: when you do finally get the call for him to go in to the hospital, you actually have several hours (in most cases) to get there. Nothing happens that fast that you would need to schlep his suitcase around wherever you go (unless you're going far away). When my husband got his call it was 2pm and the transplant didn't happen until midnight. The surgeons won't even begin until all of the cadaver's organs are harvested and all recipients are ready. It all takes time.
Back to you though...get out and spend some time with friends and family. It doesn't have to be all day. Grab a coffee, go shopping, get out. If you have to get someone to stay with your husband, do it. You NEED to take care of yourself too. The care-taking after transplant is exhausting too but in a different way. It is better. You will watch as your husband begins to get healthy again. It is amazing.
Good luck to you and keep us posted.
Wife and caregiver to BillyB.
Diagnosed w/Hep C and Cirrhosis 1/08
Added to the waiting list 8/08.
Transplanted 3/6/10
MD University Hospital, Baltimore
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Bob2006
Member
Username: Delgador
Post Number: 232
Registered: 06-2008
| | Posted on Thursday, October 13, 2011 - 12:18 pm: |
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Actually I am not sure why the tx coordinators say to pack a suit case, they told me also, as the only thing you need when you are called for the tx is your body, your insurance card/paper etc and your id. Any thing you are wearing ring, watch, chain etc... has to come off (including your clothes), you'll need them to go home after tx. And if you live close to your tx center none of that is a problem.
The first thing I did after getting the call was to pray (especially for the drs) and then took a good hot shower scrubbing a lot everywhere...(you'll probably have to do it again at the hospital..that's OK).
Once you get to the hospital it's rush, rush to get everything related to the tx done.. labs, xrays whatever, shower etc..) after that, is sit/lay down and wait so if you can take a game, computer etc.. to distract you, that will make time go faster.
Life will begin to improve a lot after tx for the patient and for the caretakers, the road is more bumpy for some than others, but the overwhelming consensus is that life is better after tx for most patients. It will be a new beginning, it's like being born again.
I firmly believe that the tx process, including the wait before, during and after the tx is extremely taxing on the caretakers be it a spouse, partner, friend, relative etc.
Liver TX 7/31/2006 due to HCC
Dr. Jang Moon & Dr. Andreas Tzakis - UM/JMH |
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Stephanie
Member
Username: Casmr36
Post Number: 5
Registered: 04-2011
| | Posted on Friday, October 14, 2011 - 09:24 am: |
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We live about 4 hours from the hospital(on a good day with no traffic) that's why they told us to have a bag packed and if we're going somewhere like his appointments which are 45 mintues away to bring it with us.
Unfortunately we live 15 hours away from the closest family member and we have lost all of our friends here (Which I guess shows that they weren't good friends to begin with, right?) They stopped talking to us slowly after he was first listed.
LindyB you are very right I was absolutely exhausted when I posted. My husband had a rough night and also had a hepatic encephalopathic episode later that day. Which, being the first time it has happened was extremely scary and very taxing on myself, lucky him he doesn't remember any of it.
I will admit I have no me time, I quit my job (they would not give me the days off needed for his appointments, even while he was hospitalized the first time!) and since we are all alone down here we don't have anyone that can....I guess watch him for lack of a better term. So I don't take me time like I know I should. I'm actually going out this weekend to get my nails done and go food shopping by myself. Which I will probably freak out and wind up leaving early or forgetting half the stuff we need! lol.
Hearing from another care giver and some one who has been through this makes me feel a little better. Sometimes it feels like we're the only people in the world going through this(which I know we're not). It's just hard, we haven't even been married a year yet, and we're only 21 years old. |
LindyB
Member
Username: Lindyb
Post Number: 131
Registered: 07-2009
| | Posted on Saturday, October 15, 2011 - 06:32 pm: |
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Stephanie,
It is sad that your friends all ditched you (for lack of a better word). You really need some support! Please please please feel free to send me a personal message if you'd like my phone number. I know it would help you tremendously to have someone to actually talk to.
I forget sometimes how fortunate we were in that we only lived 40 minutes from the hospital. It is very tough being so far away from the place he will go when he gets his call. Four hours is a long way. I can't imagine. I guess you will be staying somewhere near the hospital while he is there, right? I drove back and forth every day for the 15 days my husband was in. I took 5 weeks off from work during and then after the transplant. I'm glad my employer was ok with that! I was in a new job too. They were very supportive.
I'm so glad you're going out to get your nails done. Try to enjoy it, ok?
I remember the first time my husband had an encephalopathy incident. He got up in the middle of the night to go to the bathroom. I could tell something was wrong because he was walking like he was drunk. I followed him into the bathroom and he told me he was fine and I didn't need to be in there with him (but he slurred his words a bit). Well, I backed out of the bathroom but stayed close by. He fell into the shower (over the bathtub) and pulled the shower curtain and rod down with him. He landed on his butt. I rushed in there and he looked so confused. It scared me to death! I didn't know what was going on. I called our nurse coordinator in the morning and she asked me if he was on lactulose yet and I said no. We had filled the RX but he hadn't started taking it yet. So I had to give him that syrup. He hated it and didn't think he needed it. That stuff is so nasty but so vital to keeping the ammonia out of their systems. I even had to ask our daughter to convince him to keep taking it. Like your husband, mine didn't remember any of it either. It scared me so bad! I worked full time thru this whole ordeal and worried myself sick wondering if he would fall down the stairs while I was at work. Our kids are grown and don't live at home. So, going home after work I was always wondering what I would find when I got there. Luckily, he never did fall down the stairs.
What are you guys doing for income? Is he on disability?
Wife and caregiver to BillyB.
Diagnosed w/Hep C and Cirrhosis 1/08
Added to the waiting list 8/08.
Transplanted 3/6/10
MD University Hospital, Baltimore
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thhout
Member
Username: Thhout
Post Number: 7
Registered: 07-2011
| | Posted on Saturday, October 15, 2011 - 06:54 pm: |
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So sorry you are going through all this. It really is a unique situation that most people, hopefully, will never have to go through. So they really can't empathize but they can sympathize. But here we are. You will find so many resources here. I wish I would have discovered this site before my transplant!
It is best to be at whatever level of preparedness you feel comfortable with in your situation. I got the call and within 2 hours I was in surgery. This happened because we live 15 mins. from the hospital. But once I arrived, it moved forward so fast that our heads were spinning. The surgeon met us at the elevator! Keep in mind that while my MELD was 29, there was really no bigger urgency in my case than in others with a comparable MELD. It was just circumstances. So again, these things can go quickly or painfully slow. So just do what you can. Keep the essentials ready to go and the rest will take care of itself. Just know that is is most important to get yourself and your husband there safely! Sorry that you have to go through this at such and young age and so early in your marriage. But you will make it! Please keep us posted. We are all there in spirit! It does get better!
Theresa
| Liver transplant. Transplant. Date: 6-22-10, The Thomas Starzel Transplant Institute @ University of Pittsburgh Medical Center |
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Stephanie
Member
Username: Casmr36
Post Number: 6
Registered: 04-2011
| | Posted on Sunday, October 16, 2011 - 03:24 am: |
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LindyB,
It is sad that they ditched not only me but my husband as well. But I try not to dwell on it. I have more important things to worry about, like my husband lol.
We are actually very lucky. My husband is in the Army and in a special unit for (and I hate this term but it's what they use) "terminally ill" and wounded soldiers. They let him stay at home and he still gets paid, we still get all the benefits as if he was still active duty. The Army reimburses us for gas for all of his appointments and they are going to be paying for a hotel for both of us for the time we will need to spend in Atlanta post transplant.
This was the first time my husband had an encephalopathy episode and no one had warned us of what exactly would happen so I was terrified to say the least. It started with him acting....high for lack of a better term. Giggling at everything I said, and kind of stumbling around. And then about 2 hours later he started saying things, and asking me things that didn't make sense. Asking me to call his dad when his dad passed almost four years ago. Telling me to not call him "honey" because we're just friends. Things like that. I called the coordinator and she told me to up his Lactulose to every 2 hours, which was not an easy task considering he didn't even remember being sick, and that stuff tastes nasty. I know because my husband said he would continue to take it(after he snapped back to reality) as long as I tasted a tiny bit. Bleh!
Thhout,
I like to be as prepared as possible. My husband had a variceal bleed 2 months ago and that is something that just can't be prepared for. And since we have no friends here I had to pack up and drive myself to Atlanta while he was med evaced. Ever since that happened I have a small bag packed with essentials waiting by the door always. Now that he is number 2 on the list I have a whole suitcase, a small bag of essentials and a toiletry bag ready and waiting, lol.
With something like this there's no way to have total control so as much control as I can have I take advantage of! |
Mariel
Member
Username: Mariel
Post Number: 80
Registered: 02-2008
| | Posted on Sunday, October 16, 2011 - 07:24 am: |
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Stephanie,
I totally "get" the dragging-the-suitcase-around thing. You hit the nail on the head, it is the last bit of control we have, to have our ducks in a row with our creatures of comfort. My huz had a huge variceal bleed too, and we had to make split-second, life-impacting decisions in the middle of the night. Leading up to the massive 18 day bleed (25 units of blood transfusions), he had felt great, better+stronger than ever, actually training for a triathalon at that time. That emergency From Outta Left Field has forever scarred me.
I also understand the "alone" component. Our fam is minimum 6 hours away and they are somewhat aloof about this whole matter, but I have 2-3 great friends/neighbors have made up for it, emotionally living it with us and helping with childcare. TB has tremendously helped me too, and we met another great gal with Huz's affliction (PSC) at our TX Center's support group early on. It is a club no one wants to be in, but so few understand the complexity and gravity of a TX, so reach out to those who have "been there" or going through it for support. You need to the release of knowing you are NOT alone, and the support of what to do. Other "friends" of ours still like to party it up. Sadly, we are not the life of the party anymore, so slowly over time, we have been cut out on the Friday/Saturday party scene news. Sometimes as the 45 year old caregiver wife, I still pine for that, to be normal and silly again. But you're right, we have more important things to tend to. God has entrusted us with that responsibility, unfair I know, early on in life, but there's something we will learn from it. After all this time, the one thing that continues to give me solace is that, were the situation reversed (me being the sick one), Huz would be doing ALL THIS AND MORE to save my life!
Huz had 3 TIPS surgeries back in 2007 and this precipitated him getting on The List. Unfortunately, his then MELD score 33 slipped back in the 10-11 range and we've been slowly creeping up over the past 4.5 years. It is MELD 15 today. Uggggg! Check with your TX team to ensure that MELD 23 is indeed listed with UNOS. These MELD scores are valid for 3 months. Slipping backwards on The List as his liver rebounds (it may very well, with an otherwise healthyish 21 year old) leaves you just hopeless after time. Trust me, this frickin' waiting absolutely SUX and makes a caregiver totally MENTAL! But feel totally blessed that he is #2, and that there is a good chance to get this behind you before too long.
Yes, Huz had some HE episodes too, but only 2 years' time after TIPS. He was taking Lactulose spottily; he resisted as it gave him "fast poo." Take it religiously as he can be a harm to himself as other people here have indicated. Also prescribed was Xifaxan, actually it's an antibiotic for the colon which has the same "whoosh" effect, but that has calmed down the HE, coupled with Lactulose 2x day. I must warn you, Xifaxan is expensive, $800 month with our insurance.
Find some joy for yourself, be selfish and steal time wherever you can. I picked up tennis, healthy cooking, Facebook and Sudoku. Whatever. Sometimes when you are so strong, organized and seemingly in control, everybody thinks "you got it." It wasnt until I finally emailed Huz' family that I needed their support and help, that I was buckling, did they offer to come for the weekend to care for the kids. Hrmph, it never occurred to them to ever ask, nor check in to see how *I am* doing over all this time! 1st time in a few years that I am breaking out, that weekend is coming up Nov 4-6. Cannot wait, although I know it will be uneasy being away from home. But I know I will return happily and recharged for the fight. I figure at this point, you will be uncomfortable leaving Huz for a night away or weekend, but heed my advice to ask for help, even just for weekly Huz-watching while you run errands. You are worth it. You are not super-human. Don't take this all on your shoulders alone. People generally want to help. You need to make your needs known.
Private message me too to chat on the phone, or check out Huz's Caring Bridge. CB is a great mechanism to engage the aloof friends and family. I get much of my atta-boy support on the Guestbook page. Also come TX time, CB helps efficiently and unemotionally get the word out to many people at once, invaluable since most hospitals have spotty cell phone coverage and at 11pm at night when you get home/at hotel, it's too late to call people to update them. You will need your rest for Huz's ultimate recovery.
Best wishes for you and your Huz. I will be praying HARD for good news and statuses. Keep in touch!
eHugs,
Mariel
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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Stephanie
Member
Username: Casmr36
Post Number: 7
Registered: 04-2011
| | Posted on Sunday, October 16, 2011 - 08:54 am: |
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Mariel,
Finally! Someone understands my "need" to have things packed and ready to go. Luckily my husband was only in the hospital for a week with his bleed. But between that and his HE episode I know that is something that will always stay with me.
Unfortunately for us being so young, our "friends" just don't understand that he's not the same person he used to be. He can't go out all night and be okay. Yesterday was the perfect example, we went to the car dealer and were there for 2 hours, and poor hubby is still sleeping from it. At first I was hurt that they we're supportive. Poor hubby was just apologizing to me for losing so many friends. Like I told him, a true friend would understand that I can't go out all the time every night. And a true friend would be at our door at 9 in the morning with coffee asking if I'm okay cause nights are our hardest. But honestly if all they care about is partying and drinking, then buh-bye. lol.
His MELD score is listed as 23 for UNOS. He's number 2 with the first person being a different blood type. Unfortunately this score is only good until the 27th, and since his meld score is now a 20-21 we'll be going back down to number 15 or so.
He's on Xifaxin twice a day and Lactulose 2-3 times a day. Luckily he is an active duty soldier so we do not have to pay for any medication, appointments or hospital stays. Thank God! Seeing as we've received a few bills and I just don't know how we could afford it.
My family has been as supportive as they can, if hubby's not transplanted by the time they change his MELD score my grandma is coming down to "baby" us in a sense. Cook, clean, do laundry and just let me relax for the weekend. His family however doesn't seem to comprehend just how sick he is. They're actually not speaking to him because when he had the variceal bleed which was just a blur of running from this hospital to the next and then him being rushed into surgery, I honestly didn't have time to call anyone, but they're upset I didn't call the second it happened.
Our TX hospital luckily has amazing cell phone service and free Wi-Fi. I'll have to look into Caring Bridge.
Thank you for your prayers we definitely need them! Hubby and I will pray for you and your husband as well! I know that weekend will be hard for you. As I type this I try and imagine doing that, and I don't think I'd have the strength to! Atleast not without calling every five minutes!
Stephanie |
Mariel
Member
Username: Mariel
Post Number: 81
Registered: 02-2008
| | Posted on Sunday, October 16, 2011 - 10:23 am: |
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Hey girl, a couple of things. It is my understanding that UNOS needs updated MELD scores every 3 months. So if Huz "blew" a MELD 23 only 2-3 weeks ago, see if that score can be entered to last for another ~2 months. PUSH FOR IT! Be the squeaky wheel, now when it counts most!!! Yes, it would totally suck to regress to #15! It is emotional whiplash!
Another thing, if #1 is a different blood type, then really Huz is #1 for his blood type. They cannot interchange, separate buckets of availability.
Funny (or not), Huz's fam also was pretty upset that I waited until daylight, 6 hours later, to call to alert them when he had his big bleed. My mind was just scrambling trying to figure out what was all happening and I thought I made an okay decision, but they were hacked off about it for awhile. Sheesh! Try to understand early on that this illness does wacky things to your in-law relations, and the differences between your 2 families will now be amplified. Since you guys are so young and newly married, I also suspect there may be instances of "who should be in control." Try to iron it out nicely before it festers and wrecks things permanently. Afterall, you both have the same selfish goal of getting Huz better. Just maybe different styles.
Are you limited to your Army hospital because Mayo/Jacksonville has some EXCELLENT statistics!
Last thing, you might have heard about Friend for a Reason / Season / Lifetime ditty. I know I am twice your age, but it makes sense to me. The people who have bubbled up to help/listen to me through it all are now my Lifers! I hope and pray you too get some solid people to help/support you through huz's health crisis. Well, besides us here at TB. 
Sending you a BIG cup of e-coffee!
Mariel
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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Stephanie
Member
Username: Casmr36
Post Number: 8
Registered: 04-2011
| | Posted on Sunday, October 16, 2011 - 11:37 am: |
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Hey,
I will definitely be calling our Transplant Coordinator first thing tomorrow morning and asking about updating the MELD score after three months, instead of one. That would definitely give us more time and would lessen my stress level.
That's exactly what happened with us. I know I probably took the....easy? childish? way out. But when he had the bleed, I honestly didn't think to look up there numbers (his family changes numbers as often as we go to the doctors, which is quite often!) and the ICU nurses said no phone calls in the ICU, and me being...well me I didn't want to leave his side so I updated on facebook. private messages to them to let them know and then public updates to keep everyone updated. Wrong decision? Probably. But that was the last thing on my mind! lol.
We're not limited to hospitals. And in the beginning it didn't even cross my mind that there could be a hospital closer to us. But now that we're further into the process and I'm more...level headed about it all(the doctors in the beginning could really use a lesson in bed side manner! They really scared us) I've been looking into more hospitals particularly Jacksonville and the hospital in Charlotte, NC. With the Army as long as he's not at the top of the list we can pretty much go where ever would benefit him the best.
It may be the sleep deprivation (another bad night last night) but I don't think I've ever heard about Friend for a Reason / Season / Lifetime.
Definitely need a cup of coffee. Hubby's been sleeping for a while and now that it's finally nice out I'm thinking about surprising him in a bit with a picnic by the pond that's just 5 miles away. |
Stephanie
Member
Username: Casmr36
Post Number: 9
Registered: 04-2011
| | Posted on Sunday, October 16, 2011 - 11:52 am: |
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Sorry if it seems like I'm...rambling? I just have no one to talk to who actually knows what my husband and I are going through. |
Mariel
Member
Username: Mariel
Post Number: 82
Registered: 02-2008
| | Posted on Sunday, October 16, 2011 - 12:23 pm: |
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People come into your life for a reason, a season or a lifetime. When you figure out which one it is, you will know what to do for each person.
When someone is in your life for a REASON, it is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally, or spiritually. They may seem like a godsend, and they are! They are there for the reason you need them to be. Then, without any wrongdoing on your part, or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away. Sometimes they act up and force you to take a stand. What we must realize is that our need has been met, our desire fulfilled, their work is done. The prayer you sent up has been answered. And now it is time to move on.
Then people come into your life for a SEASON, because your turn has come to share, grow, or learn. They bring you an experience of peace, or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it! It is real! But, only for a season.
LIFETIME relationships teach you lifetime lessons: things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person, and put what you have learned to use in all other relationships and areas of your life.
+++ Ramble away, we're all in a similar boat +++
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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