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crazywoman
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Joined: 22 Mar 2005
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Location: WY
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 Posted: Mar Sun 28, 2010 4:28 pm Post subject: Updates 3/27 & 3/28 2010 |
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| Quote: | # 3/27/10: It's hard to believe that Jerry has already been in the hospital for a week and he's already been downtown at St. Luke's for longer than he was at Houston Northwest. The other day I was looking at some information about liver transplants and MELD scores online and a few sites mentioned that those with type "O" blood usually have to wait a bit longer for a liver. I didn't know what Jerry's blood type was so I asked the nurse to look it up for me yesterday. He's type O+ and I'm type A+ so we don't match. The transplant packet that we got in the mail the other day urges us to have friends and family with Jerry's blood type donate blood to be stored for his liver transplant surgery. I don't understand why type O blood types would have to wait longer since it's the most common blood type unless it's because there's a greater demand for that type. Jerry has had at least three transfusions since he went to the hospital for the first time back in October and no one has mentioned having trouble getting blood for him. I guess you can't believe everything you hear on the internet even if they are medical sites.
Jerry was so out of it yesterday that I wasn't sure if he would even remember by today that I was there. However, he did snap out of it briefly and said that he was glad that I was there. We watched several episodes of Cash Cab on TV and Jerry even gave an answer to one of the questions. Mostly he didn't say much at all though. It wasn't that he was sleepy, his brain was just foggy. Whenever the nurse or I would ask him a question his eyes would quickly dart back and forth as he was trying to take in what we were asking him. It would take him a minute just to say "yes" or "no" and we didn't get much more out of him than that. A few times his lips would just move to answer but no sound came out. Apparently Jerry's ammonia level is pretty high again which is most likely the cause of his mental status. They have him on Xifaxan as well as Lactulose to try and get the ammonia level down. The doctor did say that he's finally off the blood pressure medicine and his BP is stable. They're going to try and wean him off the albumen today if possible. His infection is pretty well cleared up now and he's off the antibiotics. They did have to give him some blood on Thursday because they said it was a bit low. Hopefully this doesn't indicate that Jerry is bleeding somewhere. They've put in central lines in Jerry's shoulder and one wrist so that they won't have to be constantly poking him with needles. The nurse also said that the thing they put in his wrist gives more accurate blood pressure readings than a cuff-type blood pressure monitor. Also, Jerry is back on solid food again.
Dawn in Columbus Ohio: If you're reading this, thank you for your nice email to Jerry in the hospital. Since we don't know anyone named Dawn living in Ohio, I can only assume that you're one of my low carb friends. I had no idea that it was possible to send an eGreeting to someone in the hospital so I checked St. Luke's website last night and, sure enough, there's a link for sending an eGreeting to a patient. From the main page look under Patients & Visitors . There's a link for eGiftShop and eGreeting .
# 3/28/10: When Nick and I were about to leave the hospital last night the nurse said that they might move Jerry to another room in a different ICU. The ICU where he currently is staying is for stroke patients. They only put Jerry in there because it had the only empty bed at the time. The nurse called early this morning though and said that they didn't move him after all but they're going to give him some blood this morning and also do another paracentesis because his belly is getting so huge again. They just did one of those on Wednesday and removed nearly four liters of fluid. They had to call and get my consent for the paracentesis and blood transfusion this time because of Jerry's poor mental status this morning. Nick and I saw the four big bottles of brownish fluid on the window sill in his room yesterday and wondered what they were until the nurse told us it was what they removed from his belly the other day.
Jerry was quite alert last night and talking pretty normal. It was quite a change from the way he was on Friday. It turns out that his blood pressure isn't quite as stable as they'd like yet so they did give him some meds for it temporarily again and they're still giving him albumen. He's also still on one of the antibiotics for his infection. I must have misunderstood what the doctor said about that the other day. Many of his doctors and nurses don't speak great English.
Please pray extra hard for Jerry. He's been having some panic attacks. He said that he'll suddenly feel intense fear come over him. It usually passes if someone holds his hand for a little while.
On Monday I will have to call Blue Cross. I got a letter in the mail from them yesterday saying that Jerry's five allowed days in the hospital are up on the 28th. The letter says to call prior to the expiration date, which is today. I'm not sure how I was supposed to do that when I didn't get the letter until Saturday and they're not in the office until Monday. I'm not even sure if they'll talk to me about Jerry's case. I did have Jerry sign a consent form in order for me to speak on his behalf with Blue Cross but I don't know if they've received it in the mail yet. I think I mailed it last Monday. Obviously Jerry can't call Blue Cross himself so hopefully they won't give me a hard time. I have a feeling that we're going to end up regretting that Jerry chose to go with an HMO this year. There is no out-of-pocket maximum per year and we have to go through all kinds of hassles every time Jerry needs to see a doctor other than his PCP. What really stinks is that the HMO premiums are more expensive per month than the other plans Jerry had to choose from and yet the benefits don't seem to be so great if you actually get very sick and need to use them. We may also be up a creek after Jerry's transplant if they won't cover his anti-rejection medications because he won't be able to use the generic versions. The transplant doctors won't allow the generics so we may have to pay the difference in cost between the generic and the regular version. Those two meds cost over $1,000 per month.
Jerry's sister, Jan, will be coming here on Tuesday afternoon and is staying through Wednesday, April 7. It will be good to have some moral support. |
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Billie
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crazywoman
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| Posted: Mar Sun 28, 2010 4:39 pm Post subject: |
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I realize that Jerry is still not coherent all the time, but I am glad to hear that he is having times that he is! I am glad that he is finally on the donor LIST. Also that his sister will be there for a few days. I know the moral support will help you, and hopefully Jerry will be coherent, and realize she is there, and it will help him as well.
I pray that Blue Cross will talk to you tomorrow, and will allow the hospital stay that he needs.
You have a lot of people here who are concerned for all of you, and who are lifting you up in prayer. Tho we don't know you personally, we love you and care for you.
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Billie
4'8" Started LC WOL Aug 2003
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My mind not only wanders, sometimes it leaves completely.
Last edited by crazywoman on Mar Tue 30, 2010 9:36 pm; edited 1 time in total |
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LindaSue
Joined: 24 Mar 2005
Posts: 45
Location: Spring, Texas
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| Posted: Mar Tue 30, 2010 5:20 pm Post subject: |
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Thanks, Billie. I posted another update today that addresses some of the issues in my last update.
| Quote: | 3/30/10: After playing phone tag most of Monday morning, I finally got a return call from the case manager at the hospital. She said that she is handling the insurance "certification" so that Jerry can stay there longer as needed. He is certified now for another five days until this Friday. She said she will let me know if there comes a time when Blue Cross decides that they won't cover any more days in the hospital.
Today I got a call today from the case manager at Blue Cross who I left a message with yesterday morning. She was very nice but she couldn't discuss much with me because they still haven't received the authorization for disclosure form that I mailed to them last week. However, I told her that I have a PDF file of the Medical Power of Attorney that Jerry signed so I emailed that to her. She will call me back once she receives it. One thing that she did tell me was that if for some reason the hospital ever fails to request an extension on Jerry's stay in the hospital, they can't bill us for any uncertified days. That's a load off my mind.
It was suggested to me that we might be able to get some help from the American Legion to get Jerry some VA medical benefits, in particular the prescription drug program. I found an email address for a Department Service Officer who's with the Houston American Legion and asked if he could help get Jerry enrolled without having to leave the hospital. Otherwise Jerry would have to somehow get to the VA building to sign up and have an ID card made. Even if Jerry ever does get to leave the hospital, it would be very difficult to get him to the VA to enroll in his condition. Anyway, I did hear back yesterday from the man at the American Legion and he forwarded my email to a man at the VA hospital downtown in Houston. He wants me to send him Jerry's VA benefits application and DD214 (military discharge). Jerry had already partially filled out an application a while back but they've since changed the form slightly and Jerry's insurance company and job status have changed since then as well. So, I filled out the new form and had Jerry sign it last night. I'm waiting to hear back from the man with a street address that I can mail the documents to. He only gave me a fax number and we don't have a fax machine. If I don't hear back from him today, I will find some way to fax the documents to him. |
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| Posted: Mar Tue 30, 2010 5:29 pm Post subject: |
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Linda,
Thanks for posting the update. I think about you and Jerry all the time.
If you need to fax something, check your local office supply store (Kinkos, Office Depot, Staples). They might be able to do that for you at a negligible cost. I could be wrong, but some of the package shipping stores (UPS) might be able to do it too. Just check your local phone directory, and if need be, call them before you head out.
Please know my prayers are with you two always. |
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crazywoman
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Joined: 22 Mar 2005
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Location: WY
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| Posted: Mar Tue 30, 2010 9:49 pm Post subject: |
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Thanks for the update LindaSue!
Hope all this works out well, and that you will not have to wait much longer.
Another thought about the fax, if you need to fax it, is that you might talk to the business office there at the hospital. They might let you use theirs, especially if it is a local call.
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Billie
4'8" Started LC WOL Aug 2003
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crazywoman
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| Posted: Apr Fri 02, 2010 1:51 am Post subject: update 3/31/10 |
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| Quote: | 3/31/10: They finally got Jerry's blood pressure stable enough that he's off the medication. So, they are planning to move him out of ICU and into a regular room on the floor where the other liver patients are. They're just waiting for a bed there. The doctor said that once he's over there, they will work on getting him back on his feet. The doctor told us today that he is concerned about something. The other day they saw a spot on his gallbladder and they think it could be cancer. Apparently it's not uncommon for people with liver disease to get that sort of cancer spontaneously. Unfortunately, if it does turn out to be cancer, Jerry won't be able to get a transplant. It will probably be a week or so before they can do the tests to see what's on his gallbladder because the tests could further damage his kidneys. They have to wait until his kidney function is good enough to withstand the testing.
Jerry received a big stack of eGreetings yesterday which I read to him. Thanks to everyone who sent one. He enjoyed hearing me read all of your get-well wishes. |
 & Prayers!!!
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Billie
4'8" Started LC WOL Aug 2003
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LindaSue
Joined: 24 Mar 2005
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Location: Spring, Texas
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| Posted: Apr Fri 02, 2010 4:39 pm Post subject: |
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How's this for a Good Friday gift?
| Quote: | | 4/2/10: We got a call at midnight to let us know that there is a possible liver for Jerry. They are prepping him for 7:00 surgery this morning. We're leaving for the hospital now. Please keep praying! |
| Quote: | | 4/2/10: I am soooo tired but I wanted to post a quick update before I crash. I've been up since midnight last night. Jerry's liver transplant went very well and he was out of surgery by about noon. We got to see him in recovery for about 10 minutes. Visiting times are very limited until he gets moved to a regular room in a couple days and we'll go back to visit him for 30 minutes tomorrow morning. Thanks everyone for your prayers which helped make this all possible. I'll post more details when I can but right now I need to rest. Everything happened so fast that my head is spinning. |
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| Posted: Apr Fri 02, 2010 4:52 pm Post subject: |
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OMG Linda. I'm sitting here with tears in my eyes that hopefully Jerry will soon be out of the woods, and you two can get back to living a happy and healthy life.
What wonderful news to hear on this weekend that's so special to everyone, no matter what their religious beliefs.
I'll still keep you both in my prayers. |
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crazywoman
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| Posted: Apr Fri 02, 2010 5:06 pm Post subject: |
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Tears of joy here too Linda Sue!!! Praise the Lord for the transplant!! I am so happy for you all. I'm sure you are exhausted. Get some much needed rest!!!
Will keep you in my prayers that the surgery was a success, and that Jerry will have a speedy recovery. I know it will take time, but pray for as quickly as possible. Lifting you all up for strength, and rest!
Have a wonderful Easter!!!
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Billie
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| Posted: Apr Sat 03, 2010 11:06 pm Post subject: |
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Here's today's update from Linda:
| Quote: | 4/3/10: Here is the full version of the events of the past two days:
The call about the transplant came about midnight Thursday night and Nick, Jan (Jerry's sister) and I got there around 2:00 Friday morning. Who would have thought that Jerry would get a transplant less than two weeks after being put on the list??? We never expected it, that's for sure. It's mind-boggling how fast everything happened. We hardly had time to think about it and then it was over. One amazing thing that we learned that morning is that the doctor had just taken Jerry off the "Not ready for transplant list" late on Thursday because his infection had cleared up and his blood pressure was stable. The was only hours before a liver became available. If the doctor hadn't done that when he did, someone else would likely have gotten that liver.
The surgery started at 7:00 am and they were finished by about noon. They'd told us that it could take 6-8 hours but everything went so smoothly that the were done sooner. A nurse came into the waiting room at intervals throughout the morning to give us updates. First she told us that they were removing the bad liver, then later she came in to say that they were nearly finished attaching the new one. The doctor told us that they also removed his gallbladder and that he didn't notice anything wrong with it but they will test it to be sure. They always remove the gallbladder during a liver transplant in any case.
We were told that only two visitors were allowed to see Jerry in the recovery ICU but when the time came they said that all three of us could go in. They also said that we'd only have five minutes with Jerry but we were with him at least 15 minutes and they never kicked us out. Jerry couldn't talk because he was on a ventilator but he did shake his head "yes" or "no" when he'd answer our questions. I asked him if he could see us and he shook his head "no" even though his eyes were open. The doctor said that Jerry probably wouldn't remember anything by the next day and he didn't when we asked him about it today.
While Jerry was in surgery, several people from the transplant team came to speak with us in the waiting room. We spoke to the financial person as well as the pharmacist and one of the coordinators. The liver team's pharmacist said she's going to fight the insurance company, if necessary, if they try to make Jerry pay extra for his anti-rejection meds. She has had success with that, she told us. She also suggested that he try to get on the VA prescription plan, which we intend to do.
Jerry will receive aggressive physical therapy to get him back on his feet and functioning totally on his own before they'll send him home. They think that Jerry might go home as early as next Wednesday depending on how well he's doing. Once he gets home, they said that he's to receive no help from us to do things.
As long as they keep Jerry in ICU, visiting is for only 30 minutes at a time and spaced out during the day. So, we'll only go down there for one session per day until they move him to a regular room. Once they move him to a regular room in the liver ward, there will be normal 24-hour visiting hours. Today we went for the 10:00 am visit.
When we got there today we heard that Jerry's ventilator was removed last night and the feeding tube in his nose was removed this morning. His mouth was a bit swollen on the one side where the ventilator tube was resting against his jaw, but that will go down. The discoloration of his skin from being jaundiced is already fading. You can especially notice it in his eyes. The nurse said that they will probably move him on Sunday to a room in the liver ward. We'll go for the 10:00 am visiting session and stick around if it looks like they might be moving him soon. We asked when Jerry would get to eat again and the nurse said that she'd ordered him a lunch tray for today. He'll be on a liquid diet at first though.
On Monday we will most likely stop by the VA to drop off Jerry's application for benefits. We drive right past there on our way to the hospital. If they've moved him to a regular room by then, we will probably run over there when we take our lunch break. The transplant team's pharmacist suggested that taking the application in person is usually more effective than faxing it to them. She also told me that it's common for family members to apply for someone who's in the hospital.
Once they let Jerry come home, I will have to stay here with him 24 hours a day. I will only be able to leave the house if Nick is here with Jerry. The "24 Hour Care Plan" will be in effect for at least a month after he comes home. The coordinator said that we might be able to get a physical therapist to come to the house instead of us having to drive downtown. That would help a lot since we'll already have to drive down to the hospital for blood tests twice a week for a while. We've been using a lot of gas getting there and what they charge for parking is outrageous. It usually costs at least $8.00 each time |
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crazywoman
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| Posted: Apr Sun 04, 2010 12:36 am Post subject: |
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Thank you for the update Anne!
LindaSue, I'm so glad that Jerry is doing so well after the transplant!! Praise the Lord! He has definitely been listening to the prayers being lifted for Jerry.
Still praying for Jerry, you, & your family!
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Billie
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Dingie_Dinah
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| Posted: Apr Sun 04, 2010 1:16 pm Post subject: |
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oh how reading this post made my day!!! LindaSue, I'm so happy for the both of you. You have struggled for so long, it's about time things turned around for you. Thank you for my Easter Gift today!!! this truly made my day, as yesterday I got the news that another dear email friend lost her stepson to cancer. Thank you for the bright light in my day, and my prayers will continue for a speedy, and healthy recovery.
Praise God!!!!
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missymagoo12
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| Posted: Apr Mon 05, 2010 12:10 am Post subject: |
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i am really glad that your husband got his liver transplant. praise the lord for that and that his is doing so well after surgery. i will keep you in my prayers. sue
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LindaSue
Joined: 24 Mar 2005
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Location: Spring, Texas
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| Posted: Apr Mon 05, 2010 10:25 am Post subject: |
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Thank you everyone for your continued prayers. Jerry has a lot of hard work ahead of him. He hasn't been on his feet for over two weeks and they said that he'll have to be able to do six laps in one go around the hallway before they'll let him go home. Today they're going to have him sit in a chair. That doesn't sound hard but it is when you've been in bed for so long and as weak as Jerry is.
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| Posted: Apr Mon 05, 2010 10:31 am Post subject: |
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Linda,
The prayers will continue.
Just remember that he's been through so much physically AND mentally, so just hang in there. Recovery is now on the way, but it will begin with baby steps.
And please make sure you take care of YOU!! You have got to be exhausted yourself, and you are now entitled to a little bit of "me" time. |
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