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crazywoman
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 Posted: Apr Mon 05, 2010 1:56 pm Post subject: |
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Yes, the prayers will continue LindaSue!
I know Jerry will have a lot of work ahead of him, as will you. And I do realize that what sounds like such a small thing, sitting up in a chair, is not such a small task when you have been bed bound for so long, are weak, and have just had such a major surgery!!!
As Anne said, take care of YOU too! Try to get as much rest as you possibly can, while you can. Not only has this been (and will be for a while) physically exhausting for you, but mentally as well. And mental exhaustion can cause physical exhaustion. (I know, just went thru it, and my/our ordeal was nothing compared to yours. And have gone thru it before with different situations.)
So rest & relax when you can, and lean on HIM who has been looking over you.
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Billie
4'8" Started LC WOL Aug 2003
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wiccanmalenurse
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| Posted: Apr Tue 06, 2010 12:08 pm Post subject: |
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LindaSue, that is great news! I am so happy to hear this. I know you are so excited and yet drained and worn out. Praying for you and Jerry. Pm me your mailing address and I will get you a gas card in the mail to help out a little OK? Take care, hoping for a speedy recovery and try to take care of yourself in the process,
David 
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crazywoman
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| Posted: Apr Tue 06, 2010 11:36 pm Post subject: update 4/6/10 |
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| Quote: | 4/6/10: I forgot to mention earlier that last Friday was the first pay period that Jerry didn't receive a donated paycheck from Performance. All in all, the people from Performance Bicycles donated a total of 704 hours to Jerry or nearly 18 weeks worth of pay. We will have no income between now and the end of May when his Disability checks start coming.
When Jerry's sister and I got to the hospital Sunday morning, Jerry was still in ICU because they didn't have a bed for him yet on the transplant floor. We stayed with him for the 30 minute 10:00 am visitation and decided to hang around the hospital until they moved him to the transplant floor. It ended up taking them the whole day to find Jerry a room so it was about 5:00 before we saw him again on the 12th floor. We'd spent a very long, boring day sitting around waiting to hear that they'd moved Jerry but we found some comfy chairs to sit in down in the main lobby of the hospital. Jerry's new room on the 12th floor is a nice, big room similar to the one that he was in on Thursday before the surgery. There's a sign on the wall in Jerry's new room that says that he can't go home until he's able to walk 6 laps around the ward without stopping.
While we were sitting in the lobby waiting, we started seeing people enter the hospital with dogs on leashes. It quickly became obvious that they were some sort of organization because they were all wearing the same T-shirts. Eventually there were about 8-10 dogs gathered around the lobby. They belong to a group called Caring Critters and they come to the hospital every other Sunday and cheer up patients by taking their dogs around the wards.
Before we got the hospital Monday morning we stopped at the VA hospital down the street to drop off Jerry's application for medical benefits and prescriptions. They said that we should hear something from them in about 30 days. If Jerry can get on their prescription plan, they will only be $8.00 each. Currently Jerry pays between $15-40 each with his Blue Cross insurance for prescriptions. I believe that the VA also has a maximum yearly out-of-pocket for prescriptions of $960 which we could easily reach within a few months considering that Jerry will probably have at least 15 prescriptions filled each month.
Jerry has been on a heart monitor since sometime on Sunday because his heart rate is a bit low. He's still on a liquid diet but they're giving him creamier soups with pureed vegetables in them now and saltine crackers. He seems to be tolerating food well. Most of Jerry's IV's have been disconnected now and his catheter has been removed. Yesterday morning before we got there they'd had him sit in a chair for a while.
We found out on Monday that Jerry is on insulin because the Prednisone that he's on causes his blood sugar to go very high. While we were there the nurse had Jerry give himself a shot of insulin. He had to measure the dose himself and inject it into his stomach. He said it didn't hurt. The nurse said that she thinks that Jerry probably will be off the insulin by the time he goes home because his blood sugar isn't all that bad. She said that they have them take insulin if their sugar goes above 150. When they tested his blood in the afternoon it was 165. As they gradually lower the dosage of the Prednisone, his blood sugar should go down.
Jerry is still having fluid building up in his belly since the transplant. It looks like he will have to have the fluid tapped about twice a month for a while until it goes away for good.
Jerry's sister and I were in the hall outside Jerry's room waiting while the nurses cleaned him up yesterday afternoon and we saw a couple of men down the hall with walkers making the rounds of the ward. When they approached us we struck up a conversation with them. They are both waiting for heart transplants and one of the guys has been there for three months now. They were very nice and it occurred to us that it would be nice for Jerry to meet them. He'd have someone to chat with during times when we're not there and they could encourage Jerry to get out of bed and do laps with them. They said that they've got four guys that they usually make the rounds with so Jerry will make a fifth once he's on his feet. I think this is just what Jerry needs to get him up and about more quickly. The great thing is that both of them are interested in motorcycles so they'll have something in common to talk about. |
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Billie
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| Posted: Apr Tue 06, 2010 11:44 pm Post subject: |
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Thanks for the update Billie.
It's so wonderful to read such great encouraging reports. |
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LindaSue
Joined: 24 Mar 2005
Posts: 45
Location: Spring, Texas
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| Posted: Apr Wed 07, 2010 10:37 am Post subject: |
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| wiccanmalenurse wrote: | | LindaSue, that is great news! I am so happy to hear this. I know you are so excited and yet drained and worn out. Praying for you and Jerry. Pm me your mailing address and I will get you a gas card in the mail to help out a little OK? Take care, hoping for a speedy recovery and try to take care of yourself in the process, |
David, I tried to send you an email but it bounced back. I also tried to send you a PM but when I click the Send button nothing happens. Would you mind sending me an email to the address that's posted on my website?
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crazywoman
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| Posted: Apr Wed 07, 2010 4:40 pm Post subject: update 4/7/10 |
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She may have posted this update after she came in replied to David. At any rate here is an update from today:
| Quote: | 4/7/10: I'm starting to get a bit peeved at how slowly things are moving at the hospital. I'm not seeing that they're making much effort to get Jerry on his feet and back home. In fact, the impression that I'm getting is that Jerry will probably be there for quite some time. I don't know what happened to the rigorous physical therapy that they told us about the day of his surgery. The most Jerry has done is stand for a minute a couple of times just to get into a chair or wheelchair. The doctor had also talked of tapping the fluid from his belly a few days ago and that hasn't been done yet and is making Jerry pretty uncomfortable. I guess they forgot about it. They put a portable commode in Jerry's room a couple days ago but I've seen no effort made to get him to use it. He's still using a bedpan. Another thing I've noticed is that Jerry is flat on his back most of the time that we're there and his bedsore is still pretty bad. You'd think that they'd work harder to get him out of bed to at least get that thing healed.
I got a call from the transplant social worker yesterday and she suggested that I call the company (Astellas) that makes Prograff (the anti-rejection drug Jerry is taking) to get on their assistance program. I did call them and so far we've passed the "pre-screening" process and they're going to mail us an application. Apparently we've lost the fight with Blue Cross already, or they never bothered to try. They are going to make us pay the difference in the cost between the brand name and generic version of the anti-rejection drug that Jerry will have to take for the rest of his life. She said that Jerry's meds will run us about $400 per month and $200 of that is just for the Prograff. If Jerry can get on the Prograff assistance program, Astellas will cover the full cost of it, at least for a while. Hopefully Jerry will be able to get on the VA prescription plan and be able to get his meds for just $8 each. I think that next year Jerry should switch to another insurance company that will cover ALL of his meds without any extra fees.
An occupational therapist did come in yesterday to evaluate Jerry's condition. She had him sit up on the edge of the bed and take off and put back on his socks. I think that I'm going to have to tell Jerry to be very assertive and ask for as much therapy as they'll give him. Right now he seems content to just sit in bed and be waited on. Now that he's so much more alert I hope that he'll get frustrated enough to fight to get himself out of the hospital as soon as possible and not depend so much on me to get things done on his behalf.
Jerry keeps talking about all these goals and dreams he has of things that he's going to do when he gets out of the hospital such as playing golf and buying a motorcycle. What Jerry needs to do is face the reality that right now his goal should be to be able to walk and do things for himself again. The reality is that we're not going to have money for expensive sports like golf and he's going to have to buy a cheap, practical car to get to work in, not a frivolous motorcycle. Reality will be trying find a way to come up with enough money to pay $400 month for his Blue Cross coverage, $400 month for his meds, over $900 month for our rent, goodness knows how much for all of his future doctor visits and the gas and parking to get him there and then hopefully still have enough left over to buy food. Eventually Social Security is going to expect Jerry to go back to work and his Disability payments will stop. He'll probably get about a year of Disability and then they'll start urging him to look for work. Jerry should focus on getting back on his bicyle for recreation and exercise which won't cost him anything.
Jan and I saw Jerry's incision yesterday and it's pretty impressive. It's kind of "Y" shaped and has hundreds of staples in it. They don't have it covered with any kind of a dressing. They just set some tissues over it and then put a tight band around his torso to hold everything together and prevent hernias.
They're still giving Jerry insulin and I think it's crazy that the diet they're feeding him right now is probably 80-90% carbs and sugar. Most of his meals consist of a Boost nutritional drink which is mostly sugar water, apple juice, fruit ice, pureed vegetable soup, saltine crackers and ice tea. Last night they brought him a tray with slightly more solid foods on it but they were things such as chicken noodle soup (very little meat), mashed potatoes (most likely instant), applesauce and jello plus all the other things that usually came on his liquid diet trays. I don't know how Jerry is supposed to get his strength back eating so little protein and mostly sugar. The nurse said that Jerry's morning blood sugar reading is usually around 99 but around supper time last night it had gone up to about 189 so they gave him insulin. I sure hope that they're going to start bringing him some real food soon and cut back on all the sugar.
It looks like it's time to start getting pushy with the hospital staff and have a pep talk with Jerry about doing his part to get himself back on his feet. |
LindaSue, I'm sorry that things are going so slowly (and badly) at the hospital. I do hope things picks up both at the hospital, medicine wise, and physically & psychologically for Jerry.
I know this is physically & mentally draining for you. Hope things turn back around for the better soon.
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Billie
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| Posted: Apr Wed 07, 2010 5:07 pm Post subject: |
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Hang in there Linda Sue,
I know it's very frustrating and aggrevating, but things are bound to improve. Don't forget that Jerry is just a few days out of surgery. Have you spoken to the doctor about getting him up and moving more? It's possible they want to go very slowly with that to give Jerry some recoup time. He's been through so much.
Go home, and close the windows if they're open, and just scream if you want to. It will do you good to release some of the stress that you've been under and continue to be under.
I know how you feel, having had the care of my mom all on my shoulders, and I must have gone through every emotion you can think of, but mostly I was angry all the time.
Just try to remember that two weeks ago, you didn't know if your husband would live long enough to even get a transplant, and now he's on the road to recovery, and hopefully, as easy a recovery as someone who's been through something like this can have. Deal with the issues you can (such as the VA and the drug company). Don't worry about Jerry talking about golfing and motorcycles right now. Let him have his dreams, especially if it will get him up and moving. Right now, I think he mentally needs to have a little bit of fantasy, before dealing with life as it's going to be.
With a little luck, everything good that can happen for you both is going to happen. Life will settle down to something resembling normalcy, and hopefully, this will all be just a distant bad memory soon.
And like I said before. Make some "me" time for you. Grab it while you can. Find somthing that makes you happy and won't require major thinking. Lose yourself in a good novel, or a video. Just make sure to give yourself some decompress time. It's really important.
I send you great big hugs!! |
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LindaSue
Joined: 24 Mar 2005
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Location: Spring, Texas
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| Posted: Apr Thu 08, 2010 8:48 am Post subject: |
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I do realize that Jerry just had major surgery and needs to recuperate before doing too much. It's just that we'd been told, and I read many places, that liver transplant patients typically go home after 5-7 days. Jerry has already been there 6 days since his transplant and it's looking like he won't go home anytime soon. I have no other people to compare his condition with but apparently Jerry was in worse shape than most people are at the time of their transplant. I/we assumed that his condition was actually less critical than most before he went to the hospital because of his previously very low MELD score. Jerry went downhill so quickly that it caught us off guard. We were expecting to wait for many months or maybe even years for him to be sick enough to move to the top of the list.
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wiccanmalenurse
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| Posted: Apr Thu 08, 2010 10:06 am Post subject: |
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LindaSue, I sent ya an email and went ahead and donated through your paypal link on your site. It isn't much but I am sure anything helps right now. Take care, wishing all the best for y'all and keeping you both in my prayers,
David
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crazywoman
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| Posted: Apr Thu 08, 2010 3:37 pm Post subject: |
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Well Linda Sue posted again later yesterday (on her site), and this morning. Here they are:
| Quote: |
# 4/7/10 (later): I found out today that the transplant team pharmacist is still working on trying to get Blue Cross to cover Jerry's Prograf with a normal copay amount and not the difference between the brand name and generic. She just said that it can take a while to fight the battle with them. I also found out today that it will actually cost us $400 per month out of pocket, not $200 for his Prograf. The pharmacist said that it was only going to be $200 for the first month because the company issued a one-time $200 off coupon. That means we'll have to pay over $600 per month for all of Jerry's meds unless he can get Prograf free from Astellas or get on the VA prescription plan. Getting VA benefits will be the best option because the Astellas assistance program might only be temporary and Jerry will be on Prograf for the rest of his life. Of course if Jerry switches to a different insurance company next year, we wouldn't have the same problem that we're having with Blue Cross this year.
Today Jerry had both a physical therapist and an occupational therapist come in to work with him. They had him stand up and walk a few steps with a walker to the big chair and sit down. Once he was in the chair they had him wash his face, comb his hair and brush his teeth. Next they had him do some leg and arm lifts and things like that. They really wanted Jerry to do a few of what they called "stand up, sit downs" but by then his insides were hurting pretty badly and he needed a break. We don't know if they came back to have him do them later in the day. They told us that someone from the inpatient physical therapy floor would be coming to evaluate Jerry to see if he is a suitable candidate for moving to their floor for 3 hours of daily PT. To do so, Jerry would have to agree to do a full 3 hours per day (a 2-hour morning session and a 1-hour afternoon session) even if it's painful and difficult. Otherwise, they will likely transfer Jerry to full-time nursing rehabilitation hospital where he can receive PT at his own pace. I'm not crazy about the second option because that would probably mean that it would be much longer before Jerry is able to return home. It bothers me a bit that they want to evaluate Jerry so soon. How can he possibly know if he can handle three hours per day of PT when so far he's only had PT for two days and then only for a few minutes each time?
As of today, Jerry is back on real, normal solid foods instead of liquids. We didn't see what he had for breakfast this morning and he only ate a few bites of his lunch because he'd eaten breakfast only an hour or two before they brought his lunch. Hopefully he did better with dinner tonight after we left.
I was disappointed to find that they still haven't tapped the fluid in his belly and Jerry said that the doctor hasn't mentioned it again since a few days ago. I told Jerry that he will have to nag the doctor since I'm not going to be there to do it for him. His belly is very big and hard and that made doing his PT very difficult and painful for him.
# 4/8/10: I forgot to mention that yesterday Jerry's blood sugar was a bit better. When they tested him in the afternoon it was 130 so they didn't give him any insulin. |
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crazywoman
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| Posted: Apr Fri 09, 2010 1:00 am Post subject: another update 4/8/10 |
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| Quote: | | 4/8/10 (later): Jerry's blood sugar was up a bit today so they did have to give him some insulin before his dinner tonight. The good news is that Jerry had a really good physical therapy session this afternoon. The hospital is leaning toward sending Jerry to an outside rehab hospital, once he's ready to leave the transplant floor, and Jerry's coming to the realization that he'll get back on his feet and back home much sooner if he can somehow get into the hospital's inpatient 3-hour per day rehab program instead. So, today he worked really hard to do what the therapist wanted him to do and everything suddenly clicked. He found that he has more strength than he thought he had and he actually walked back and forth across his room with the walker a few times. He even walked backward once. We were amazed at how much he's improved just since yesterday. The bad news is that we don't seem to be getting anywhere in regard to the fluid in his belly and getting the doctor to have it tapped. It's so bad that he can hardly eat anything because he feels very full after only a couple bites of food. He's also starting to have trouble breathing because of it. When he falls asleep, and suddenly wakes up, he has a hard time catching his breath at first. They've got him back on oxygen for now. We don't know why the doctors won't tap the fluid and give Jerry some relief or why they won't at least tell us why they're not doing it. |
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| Posted: Apr Sat 10, 2010 3:35 pm Post subject: |
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Today's update:
| Quote: | 4/10/10: It's hard to believe that it's already been over a week since Jerry got his new liver. I guess it really will be a quite while longer before he'll be ready to go home. After hearing that most liver transplant recipients usually go home from the hospital after only 5-10 days, we're now starting to hear that it's more realistic for someone like Jerry to remain there for 2-3 weeks.
When Jan and I arrived at the hospital yesterday, the doctors had just put a tube through Jerry's nose that went down to his stomach. They sucked out a lot of food and liquid that had accumulated in there. They said that for some reason things were going in but then just sitting there not going out and kept him from having room to eat more food. I don't quite understand how that's possible though since Jerry has been having several BM's per day. It seems unlikely to me that there could be all that much food not leaving his stomach and still be enough that's digested to make him go several times a day. Considering the tiny amount of food that he's eaten since his surgery where would all of this food be coming from? I guess that the doctors must know what they're talking about even if it doesn't seem logical. After they removed the food from his stomach a little while later they took him for another paracentesis. They removed 5 liters of fluid this time. Jerry said that he did feel better afterward. The plan is to feed Jerry through a tube in his nose at least until today sometime. |
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crazywoman
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| Posted: Apr Sat 10, 2010 8:47 pm Post subject: |
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Thanks for posting the update Anne! I had just found it, and was coming here to post it if you hadn't done so (or someone else).
When it comes to major surgeries (or actually to our bodies), seems strange things can happen!
Glad that they could relieve some of the fluid, and that that pressure relief made him feel better.
Glad that the chaplain is coming in to see Jerry, and that he is enjoying his visits (even if he hadn't been there since the surgery). Hopefully he can come visit him more often now, which should help Jerry.
Hopefully Jerry will continue to get better & stronger each day now.
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Billie
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crazywoman
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| Posted: Apr Sun 11, 2010 4:30 pm Post subject: update 4/11/10 |
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| Quote: | 4/11/10: Jerry was very sleepy and out of it all day yesterday. He still had the tube in his nose for draining bile and food out of his stomach. They're feeding him intravenously for now and he was only allowed to suck on a few ice chips. Dr. Ankoma-Sey (Jerry's liver specialist) stopped by Jerry's room for a few minutes in the afternoon and he said that Jerry is doing quite well with his new liver. However, he said that something is coating Jerry's intestines which is causing his digestion problems. He didn't seem too concerned and said that it should clear up soon. They were going to have Jerry sit in the chair but he was feeling too dizzy. The nurse said that draining off so much fluid can cause a drop in blood pressure and thus cause dizziness. In the meantime, Jerry's rehab isn't progressing much at all.
I'm not sure if I mentioned before that since the transplant Jerry's hands have stopped shaking. That must have been caused by the ammonia getting to his brain. We noticed the difference right away as soon as Jerry was able to feed himself a few days after the surgery.
I just realized that they haven't taken Jerry for any more breathing treatments since the one that he had last Tuesday. Maybe they took him for the treatments very early in the morning before we got there but he hasn't mentioned it. We were told that he'd have those treatments every day. I suppose that it's pretty much the same as with his physical therapy. They do it when they have the time which isn't very often. |
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| Posted: Apr Thu 15, 2010 6:31 pm Post subject: |
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Here's today's update from LindaSue:
| Quote: | 4/15/10: Not all that much to report this time. I spoke with the diabetes nurse the other day and they want me to learn how to give Jerry his insulin shots as a backup person. Normally Jerry will do it himself. One thing that the nurse mentioned is that Jerry is getting two kinds of insulin. One kind is taken every day and lasts for 24 hours. The other kind is taken as needed when Jerry's blood sugar goes above 150. He also said that Jerry will have to stay on insulin until he's off the Prednisone.
Jerry walked across the hall with a walker on Wednesday and he's back on solid food. He complained that the roast turkey was horribly dry. I wonder how he'll manage to put on any weight eating that nasty hospital food. It's not all bad though. They have a nice cream of mushroom soup that turns up on the menu now and then. He may not be gaining much weight yet but unfortunately Jerry's feet are starting to swell up again and they're going to put him back on diuretics. |
Linda, what great news that Jerry is up and walking more, and eating again.. Even better? He's complaining about the food. All signs of recovery!!
Did you ask if you could possibly bring him food from home?
Hopefully, that swelling in his feet will go down again soon, but I think those are the ups and downs that are probably expected at this stage of recovery. |
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