"Welcome to my Atkins Recipe website! This website contains some of my favorite recipes that I have stumbled upon in my 4 years of eating low carb. The recipes come from many sources, including magazines, cookbooks, and websites (such as Linda’s Low Carb recipes). Enjoy!"

I also am aware that her statement that the recipes on her site come from many sources is a lie. She has 56 recipes on her site and of those, 54 were taken from my site. There would have been one more recipe that wasn't one of mine but she removed it. It was Jamie's Cauliflower Pizza Crust recipe and she removed it at Jamie's request. She has ignored my request that she remove my recipes.

"I have been looking at the recipies on your website, great site!!! I want to try to low carb it myself. I have a question though; many of the recipies seem to have butter, cheese, eggs, salt, heavy cream etc. Most doctors tell you not to eat all of that stuff. Aren't these things bad for you as well? Does the low carb benefits outweigh the potential health risks of eating all the butter, eggs, etc?"

Here is my reply to Mike:

"I'm not aware of any health risks associated with eating eggs, butter, cheese and cream but I have a question for you. Why would you consider trying a diet that you perceived as being harmful to your health? I suggest that you do some research on low carb diets and find out why they work and are a healthful way to eat. Here is a list of books to get you started:

Dr. Atkins' New Diet Revolution - Robert C. Atkins, M.D.
Protein Power Lifeplan - Drs. Michael and Mary Dan Eades
Natural Health & Weight Loss - Barry Groves"

It's also good to see him starting to do normal things again such as bringing in the trash can and the mail. Right now he's out back watering the yard. He's been puttering around with his car a bit lately too. He's decided to keep his car and have it repaired. He'll just do without air conditioning because it would cost over $1,000 to fix it. He's been without it for at least two or three years now anyway. He thinks that all it will need to get it running is to fix a leaking hose and put in a new battery. He's pretty sure that it doesn't need a new water pump or anything else expensive like that.

The bad news is that when Jerry tested his blood sugar before lunch today it was over 150 so he had to take some insulin. This was the first time that he'd tested his blood sugar since stopping the morning insulin as of this morning. I have a feeling that they might tell him to go back to taking insulin again if his blood sugar continues to run that high all the time without it. On the other hand, he'd had a very carby breakfast late this morning with no protein to speak of. It will be interesting to see what his reading is before dinner tonight.

The doctor wanted Jerry to have an EGD and Colonoscopy because he's concerned that he might have some internal bleeding that's causing his hemoglobin to be so low. However, the results of his blood work from yesterday indicate that it's back up to normal now since his blood transfusion last week. Jerry will call and cancel those tests because they're no longer necessary.

Jerry is continuing to lose the excess fluid from his belly, feet and legs but it's not all gone yet. His weight is down to 155 pounds so he's lost 35 pounds of fluid since he came home from the hospital. He estimates that he's got another 20 pounds to go yet but I'm not so sure. He's looking pretty skinny to me and his belly isn't all that big anymore. He's able to wear normal clothes now and he has one pair of street shoes that he can wear. He's eating like a horse but so far the Prednisone isn't making him get fat. The doctor warned him that it could catch up with him very suddenly though and he should be careful not to overeat. I think that he's got a long way to go before he starts to be remotely fat though. He could stand to gain at least 15-20 pounds of fat which would put him around 170.

Jerry has five more sessions of physical therapy to go and he's doing well with it. They've been working on his balance issues and he rides the stationary bike at each session among other things.

I looked back over Jerry's vital signs log that he's been keeping since he came home from the hospital and he's lost 25 pounds of fluid already this month. He started out at 190 pounds on May 7th and he's down to 165 now. According to the log he's lost 19 pounds of fluid this past week, just since last Sunday! At this rate it should all be gone, hopefully for good, very soon.

The transplant coordinator called while we were at PT on Thursday and they said for him to lower his Prograf dose again. The message that Nick wrote down said that we won't have to go back for more labs again until next Thursday. Yeah! I was afraid that we'd have to go back on Monday or Tuesday for blood work to check his Prograf level. Jerry's regular Monday appointment was changed to Thursday next week due to the holiday on Monday but they do have a lab at St. Luke's that's always open that we could have gone to if necessary. It will be so nice to only have to drive downtown once next week for a change.

Jerry said that he's been losing 4-5 pounds every day or two for the past few days. It looks like the fluid is finally starting to go away. It's hard to tell that by looking at him but it does seem like his legs are a more normal shape now than they were when he came home from the hospital. His belly is still very big but he said that it doesn't hang over quite as much now. I think he said he's down to around 169 pounds. Jerry is eating very well now so his weight loss is not due to lack of appetite or from not eating enough. Last night I made half pound cheeseburgers and baked beans and Jerry cleaned his plate. He even went back and finished off the baked beans after I went to bed last night and he also had some ice cream.

We went downtown for labs and a doctor visit again this morning. The doctor was in surgery so we didn't actually see her this time. A little while ago we got a call letting Jerry know that he should lower his dose of Prograf so that means yet ANOTHER trip downtown on Thursday for more labs. I hope that before too long these trips will be much less frequent. Thursday will be a busy day with labs downtown early in the morning and PT in the afternoon. I'll have to squeeze in some grocery shopping sometime in between.

I called the pharmacy to refill Jerry's meds today and was happy to hear that the they will deliver them to the house at no charge. I only had to refill 11 items this time because he still has more than a month's supply left of a few things. He's still got at least a month or two left in both of his bottles of insulin and he will also be able to use what he had left of his Furosemide from before he went to the hospital. He's got at least two months worth of that left because he's only taking half as much now per day. So, instead of costing almost $250 like last time, this time it will only cost us about $130.

Jerry's blood sugar has been very good most of the time but every now and then he gets a super high number. A couple of times it's even gone over 200! Of course that usually happens when he's recently had some kind of sweets or other high carb food. This morning he had pancakes for breakfast and then had a box of popcorn on the way home from the doctor so his BS was 149 just before lunch. What did he expect after eating only carbs all morning? He understood how the pancakes and syrup would cause his BS to go up but he was surprised about the popcorn. He didn't realize that the starch in popcorn is just another form of sugar.

We finally got a call on Tuesday from the landlord's handyman about installing the grab bar in the shower. He came this morning and installed it and it looks quite sturdy. I also ordered a different shower chair from Amazon today. It looks just like the one I took back to Walmart but it has some extra cross-braces between the legs. It's rated to support up to 500 pounds so I don't think Jerry will have a problem with it collapsing.

Jerry goes next Thursday to be evaluated for his physical therapy. I'm starting to wonder if he'll actually get much benefit from it now that he's been home for so long. He walks around the house without his walker or his cane most of the time now. We only use the wheelchair when he goes to doctor's visits because it would be way too much walking for him from the parking garage to the clinic. Once the fluid goes away from his legs I think he'll be able to do more walking outside the house.

Tomorrow I have to take Jerry back downtown for more labs. After his labs on Monday they said for him to lower his dose of Cellcept (another anti-rejection drug) so they need to check his blood again to see how the new dosage is working out.

It looks like Jerry might only need to go downtown once a week now unless they decide that he needs to come in for more labs based on his previous lab results. After they looked over Jerry's daily blood sugar chart on Monday, they decided to lower the dose of his daily insulin from 10 units to 8 because his numbers had been so good since he came home. They also lowered his magnesium. They think that the magnesium might be causing his loose stools. Anyway, Jerry's doctor visits will be every Monday for a while and extra trips just for labs will be on an as-needed basis.

Unfortunately, Jerry's good blood sugar readings didn't last. Since lowering the daily insulin dose this morning, Jerry's reading at lunch time today was in the 190's and then it was 209 before supper. He never even had readings that high when he was still in the hospital. Apparently lowering his all-day insulin dosage wasn't such a great idea. On the other hand, they called today and told Jerry to lower his Prednisone a bit so maybe the numbers will start to come down again since it's the Prednisone that causes the diabetes. They want him to come back for more labs on Thursday to check to see how the lower dose of Prednisone is working out.

As far as mobility, Jerry had a very good day today and didn't use his walker at all to get around the house. His appetite is also increasing. He ate three big meals today and also wanted to snack all day long. Maybe his out of whack blood sugar is making him hungrier.

Jerry is having mobility problems right now because he's so huge due to fluid retention. He's nearly as big as he was last fall. His legs and feet are very big but he's mostly carrying a huge amount of fluid in his belly and behind. It's hard for him to get up from sitting because he has to lift about 40-50 pounds of water around his middle. He weighs about 190 but he still has no fat on his body. They know that he's having fluid problems right now so they said it's alright for me to transport him in his wheelchair for now, at least when we go to doctor's appointments and things like that. He's pretty nimble once he's on his feet and using his walker though. He goes to the bathroom by himself and hasn't asked me for help with that at all so far. I've only had to hoist him up two or three times; once from his bed and twice to get him out of the car. Jerry is happy with the commode that the hospital ordered for him. The walker is working out pretty well too except that it's too wide to fit through the doorways of our house. He has to go through them sideways. It's kind of strange that his transport chair can go through most of the doorways (except for the bathroom door) but the walker is too wide.

Jerry takes 10 units of long-acting insulin every morning no matter what his blood sugar level is but he hasn't needed any extra insulin shots throughout the day so far since he's been home. His blood sugar has been in the range of about 70-103 mg/dL most times when he checks it before his meals. There were times in the hospital when it had gone as high as the 170's. They told him to take an insulin shot when his BS goes above 150 and so far that hasn't happened. Jerry has charts for keeping track of his blood sugar, blood pressure, weight and temperature throughout the day. He's to take those charts with him whenever he sees the doctor.

One problem that is bothering Jerry is that the backs of his hands and forearms are constantly bleeding or bruising because his skin has gotten so thin. Just bumping his hand causes a bleed.

We had to go downtown for labs very early Friday morning. Whenever Jerry goes for blood work they said they will call him later to let him know if his Prograf dose or other meds need to be adjusted. Friday afternoon they called and told him to lower his Prograf dosage by one pill. He was taking 7 pills twice a day and now he's on 6 pills twice a day. We will have to go downtown for labs and doctor visits twice a week for a while plus he'll have physical therapy twice a week for about a month. We'll get that set up next week. The transplant pharmacist is checking into getting Jerry's prescriptions set up through the VA but we haven't heard back from her about that yet.

Jerry told me that Astellas delivered a free month's supply of Prograf to the hospital for us to take with us when Jerry goes home. I guess they must have sent it before they knew for sure that we'd be accepted in the assistance program.

Also, when I called Jerry to tell him that the Prograf had come, he mentioned that he'll probably be in the hospital for a while longer than he thought the other day. This morning the surgeon said that he might be there at least a couple more weeks. Jerry said that he's not feeling very well today. He's been having some diarrhea and not eating much.

Jerry didn't have any IV's, oxygen or his feeding tube connected yesterday. He said that the doctor told him that he won't have to be tube fed as long as he drinks at least four of those bottled nutritional drinks per day plus his regular food. I don't think that he'll be able to do it though. He only managed to eat a bowl of soup and half of a roast beef sandwich for lunch and was too full for a bottled drink afterward.

Jerry's legs are very puffed up with fluid but his belly doesn't seem to be getting nearly as huge as it had before. His blood sugar was pretty good in the afternoon. It was 109 before lunch and the nurse said it had been the same earlier in the morning. However, I have no idea how high it would actually be if they weren't giving him the all-day insulin every day. At least he's not getting numbers above 150 now.

Before I got there, they had Jerry take a shower for the first time in over a month. They have a chair in the bathtub for him to sit on while bathing. It just occurred to me that yesterday was the first day that Jerry wasn't lying in the bed at all while I was there. He sat in the wheelchair to eat his lunch.

They finally got around to moving Jerry to his new room around 2:00 yesterday. Well, it actually took them three tries to get a room for him. When they got him to the first room he was assigned to there was no bed in it so they moved him to another room. A little while later he called to say that they'd moved him to yet another room that had a longer bed (he's 6'2" tall). The visiting hours on that floor are 24/7 but Jerry said that they'd prefer that we don't come to visit him until after 3:00 in the afternoon during the week. They said that we can come at any time on the weekends so I guess they don't do PT on weekends. The next time I go to visit Jerry I'm supposed to bring some street clothes and shoes for him to do his PT in.

I think it would be nice if the physical therapists would let me come once during the day so that I can see what kinds of things they're doing for Jerry. I can't think of any reason that they wouldn't want me to see what they're doing. When I called Jerry today he said they told him there's a good chance that he could come home mid to late next week. I'm not going to hold my breath though because they seem to change their minds a lot at that hospital. Today they mainly just evaluated Jerry's condition and had him do some walking with a walker. He was going to have two 30-minute sessions this afternoon but he didn't know what they'd have him doing. He said that there is a gym on that floor but he hasn't seen it yet.

Anyway, the good news is that I found out today that they've decided not to send Jerry home yet. Instead he's going to be put in the 3-hour per day physical therapy program. We'd been hoping that he would be allowed to get in that program but up until now the doctors didn't think that he'd ever be strong enough to handle it and they were talking about moving him to a long-term rehab hospital. Hearing that they weren't even going to do that and were just going to send him home was quite a shock. They'll be moving him to a new room today. Jerry said that it will be a private room on a different floor of the hospital.

Jerry said that he's swelled up really bad in his belly and lower body just since we last saw him a day ago. The doctor said that there's no point in removing the fluid from his belly again because it would just come back by the next day and there's always a risk of infection from the procedure. They seem to think that the fluid problem will eventually go away on its own. Obviously the diuretics aren't helping or it wouldn't be getting worse. Maybe once he starts doing some strenuous exercise it will help reduce the fluid build-up.

I asked Jerry the other day if the doctor has said why he's continuing to have so many of the same symptoms that he had before the transplant and he said that the doctor told him that he'll continue to have some of them for several months until things in his body work themselves out and get back to functioning normally. He's also still on oxygen because he said he still sometimes has trouble catching his breath, especially when he first wakes up.

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.

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.

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.

Yesterday we met the hospital chaplain that Jerry had been telling us about. Jerry has been enjoying his visits. This was the first time that the chaplain had seen Jerry since his transplant though.

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.

I got a call from the transplant social worker yesterday and she suggested that I call the company (Astellas) that makes Prograf (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 Prograf 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.

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.

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.

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.

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.

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.

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".

St. Luke's isn't nearly as nice and modern as Houston Northwest. Jerry does have a private room but it's about half the size of his room at the other hospital. They do have three visitor chairs squeezed in there at least and he does have a TV.

So, it looks like things may start moving rather quickly now, but of course that depends on the availability of a liver and how many other people are higher on the list than Jerry. When I left the hospital this afternoon they were still working on getting approval from St. Luke's to transfer Jerry from Houston Northwest and then they have to get approval from Blue Cross. The case manager will call me as soon as she knows if everything has been approved. I don't know yet when they will transfer Jerry to St. Luke's if everything is approved.

I told Jerry what was going on but I'm not sure how well he comprehends it all. I asked him to repeat to me what they'd told us and he repeated most of it pretty accurately except that he thought the transplant hospital was called St. Thomas. It's hard to tell what Jerry is thinking because he doesn't say much and he doesn't seem to show much emotion. I think he's in a sort of dream-like state where fantasy, old memories and things that are happening right now are all mixed up together and confused. I think that he knows I'm there with him at the hospital but there is no conversation and very little communication. I basically watch him sleep and feed him when they bring his meals.

It turns out that his setback on Friday was due to an infection either in his blood or the fluid that was filling his belly. They're still trying to determine where it came from and what kind of bug it is. For now he's on antibiotics but they have to be careful with those because they can cause his kidneys to get worse. He's still on the BP meds and they gave him albumen today but I'm not sure what that's for. He'll be in MICU at least through Monday and then they might send him to telemetry from there. If he does well then he will either go to a regular room, or a rehab place (I forget what the doctor called it) if Jerry's insurance will cover that. I will speak with the hospital case worker tomorrow about that as well as what to do when I bring Jerry home.

I want to thank everyone for your encouraging emails, donations and prayers for Jerry. I will answer them when I can but it might be a while before I have a chance to do so. Things are pretty hectic at the moment.

Yesterday I took Jerry for some blood work and used the transport chair (which is a light kind of wheelchair) for the first time other than just around the house. I had no trouble lifting it into the backseat of the car.

We just found out something rather shocking. We found out that Jerry isn't actually on the liver transplant list yet. When he went for the evaluation back in November that was just to determine if he was sick enough to qualify for a transplant. We knew that but then they told us that we'd receive a certified letter letting us know whether or not he was placed on the list. We received that letter back in December but now it turns out that the letter was just to let us know that he will be placed on the list at a later date, not that he had been put on the list. No one ever told us that back in November. I spoke to the transplant coordinator but couldn't understand most of what she was telling me. Mainly what I got from our conversation was that they did get approval from Jerry's insurance company for a transplant (we knew that because we'd gotten a letter from Blue Cross a couple months ago) and that Jerry would have to have more testing done before actually being placed on the list. She said that she would call us once he is officially on the list but I have no idea when that will be or how much testing Jerry will have to have done before that. It's all very confusing because no one seems to be communicating with us or each other very well through this whole process. It's so frustrating to hear one thing from one person and something completely different from someone else. It's the same sort of run-around and misinformation that we got with Social Security about Jerry's Disability. All we can do is wait and see what really happens. Hopefully Jerry won't be too sick to get a transplant by the time they finish the process. His hepatologist did say a couple weeks ago when he saw him that they won't do a transplant on Jerry unless he gains a lot of weight. He's too weak in his current condition to survive such a major operation. I don't know what we can do to make Jerry gain weight when his body isn't making use of the food that he's eating. I do my best to try and get Jerry to eat as much as possible but I can't force him.

Jerry is still very weak and he has fallen at least once or twice every day for the past few days. I don't know what I'll do if it happens when our son isn't home. Although Jerry is very thin, he's still quite heavy for me to lift and I'm not all that strong. Thank goodness that he can still walk most of the time or I don't know what I'd do. He seems stronger at times and then a short time later he'll barely be able to stand on his own. We're waiting for a call about having a walker delivered. Hopefully the walker will help Jerry be able to get up on his own and move more safely around the house. I wish that there was some way that I could get someone to watch Jerry once or twice a week so that I can get out of the house for a break. Our son works long hours and is rarely home long enough to do that for me. I did go to the grocery store this morning and had Jerry stay in his bed while I was gone with strict orders not to get up for any reason and everything went fine for the hour or so that I was gone.

For now Jerry is still getting donated sick pay from his old job but we expect that will stop soon. So far the generous people at Performance Bicycles have donated 12 weeks of their sick pay to Jerry at a full 40 hours per week. He just got another paycheck on January 22nd. Once those paychecks stop coming in, we will have no income between then and the end of May unless I find a job before then.

This is what it says in the booklet we got in the mail the other day along with his approval letter:

"Under the law, your payments cannot begin until you have been disabled for at least five full months. Payments usually start with your sixth month of disability."

Last week we got a letter from Social Security about setting up an account online for direct deposit, etc. which added to our confusion about when his checks would start coming. When I first read it, it sounded to me like he would get his first Disability check before the end of February but after re-reading it and I realized that's not what they are saying. Here's what it says:

"If you are a new beneficiary, please make sure you have received your notice of benefit payment or your first payment before you try to register a password."

The letter that we got the other day that says his payments will start in May is the "Notice of benefit payment" that they're talking about. I guess that answers all of our questions and he really won't get any checks until May. What added to our confusion was that several different people at Social Security told us that because of Jerry's terminal condition he would get Disability payments as soon as he was approved and that he wouldn't have to wait the five months. How were we to know who was right and who to believe when the people working there don't even know what's going on or what the rules are???

As far as Jerry's condition goes, he saw a neurologist this week about his hands shaking and because he's not able to use one of his legs properly when walking. The doctor said that shaking hands are a symptom of his liver condition. Jerry will go for some tests to determine what the problem is with his leg. The doctor thinks he may have nerve damage in that leg but he doesn't know why. Jerry continues to lose weight no matter how much he eats. When he weighed himself a couple days ago he was down to 138 pounds. Not much else has changed with his condition lately.

Here's some good news. Jerry got a full paycheck for the last pay period because of the donated sick days. He will also get a paycheck next week because people at the store where he worked have donated another eight days. There could be more from other stores around the country as well but we won't know until we see the check. Please pray that Jerry might get enough donated sick days to keep getting paid until the end of the year when his job will be terminated. As long as he continues to get a paycheck, we won't have to pay for our insurance out of our pocket. We also hope that his disability payments will start by the time the pay from his job ends but that process seems to be taking forever.

Jerry has been feeling a lot better lately now that most of the swelling from fluid is gone. He's lost another 10 pounds now and even his belly is finally starting to shrink. He only weighs 160 pounds now (he's 6'2" tall) so he's trying to eat as much as he can to try and put some fat and muscle back on his body. Even though he's very thin, and has lost almost all of his muscle, he's a lot more mobile now without having to carry around 40-50 extra pounds of fluid in his legs. The weather was sunny and warmish yesterday so he went for a little walk down our street. Today it's snowing here in Houston! We've lived in Texas for about 18 years now and have only seen snow here three times. This is the first time that it's snowed all day long but it's not sticking on the ground in our area. There are parts of the Houston area where they're getting a couple inches or more of snow on the ground today. It looks pretty with the snow lightly falling right now but they're predicting that it will turn to freezing rain later tonight. Thank goodness that we got back from the hospital today before the roads got messy.

We got what might be good news from the company that Jerry works for today. Apparently heads must have rolled because today notice went out company-wide for people to donate sick days to Jerry. We'll have to wait and see what comes of that. This morning Jerry sent in what he thought was his final pay stub to Social Security so that they could start his disability payments. Goodness knows how we'll handle that dilemma if he suddenly has more income coming in from his job and they've already begun to process Jerry's disability.

Here's a photo of Charles that was taken in San Antonio:

It looks like Jerry is now on unpaid leave and there won't be any donated sick days. The woman in HR for his company, who was supposed to handle getting donated sick days for Jerry, never bothered to do it. Any days that were offered a while back were lost because the FMLA paperwork hadn't been turned in at that time. Now we have to hope that this woman will handle Jerry's insurance payments properly so that he won't lose his insurance. As irresponsible as she seems to be, I don't have high hopes that she'll handle things like she should. I'm feeling very discouraged right now.

We found out that if Jerry loses his insurance, because we are unable to pay the monthly premium, there will be no transplant. St. Luke's hospital won't take any patients who have no insurance. I don't know how will find the money to keep up the $400 insurance payments every month. If we miss even one, he'll lose his insurance immediately. Between all of Jerry's prescriptions and co-pays for doctor visits, plus the $13 for parking every time we have to go downtown to the hospital for tests and consultations, we're looking at hundreds of dollars every month on top of our rent, utilities, food and other regular bills. And, that's just what it will cost us between now and the transplant. After the transplant we will have to pay hundreds of dollars per month for his prescriptions and there will be even more frequent visits to the doctors for the first few months.

Jerry's MELD score is 22. Most of the people, when they get their transplants, have scores in the range of about 24-26 so Jerry is getting very close to that. There is a checklist of 11 symptoms that qualify someone for a transplant and Jerry has had every symptom on that list.

After the transplant, Jerry will have to take up to 15 different drugs. Three of them he will have to take for the rest of his life. Those are the anti-rejection drugs, of which two of them would cost around $4,000 per month at full price for someone without insurance. He will be weaned off most of the rest of the drugs over the few months after the transplant.

It looks like we may end up having to pay around $1,000-2,000 per month out of pocket for two of his anti-rejection prescriptions after the transplant. That's because Blue Cross won't cover non-generic versions if a generic is available so we'll have to pay the difference between the generic and real versions. The counselor told us that they just recently came out with the generic versions and the transplant doctors won't allow the generics because there have been reported problems with them. They told us that he might be able to get free or cheap drugs through the Veteran's Administration or get some kind of coupons for a discount and Jerry will look into that.

Something very scary that they told us is that Jerry will become diabetic after the transplant and will have to inject insulin. At least they did say that this might only last a month or two with Jerry because he's not already diabetic.

During the transplant evaluation we had a consultation with a dietitian. Just as I was expecting, she was totally ignorant about metabolism or nutrition. Of course she thought she knew what she was talking about but she was totally off-base on some of the most basic things including how sugar and fat are metabolized. She didn't even know that starch is the same thing as sugar. Once I realized how little she understood about nutrition I lost all respect for her. I told her that I disagreed with her about several things but that I wasn't going to argue with her about it. There was no point because she thought she knew what she was talking about.

One really crazy thing that she believes is that eating pure sugar is fine and good for Jerry. She even recommended that he eat M&Ms, or other candy, and sugary soda to help him gain weight. She thinks that all the components of food (sugar, fat and protein) need to be converted to sugar before the body can use them for fuel. Of course she's totally wrong. In reality, sugar needs to be converted to fatty acids before the body can use it for fuel. Since Jerry's body can't store fat, eating more sugar won't help him one bit to gain weight. She actually said that there's no reason for him to drink diet soda and that he should drink the full sugar kind. She must be insane. How in the heck does she think that eating foods totally devoid of any nutritional value would in any way help Jerry and not make him even sicker? She thinks that as long as Jerry fills up on "calories" he'll be able to put on some weight. Since when are "calories" a source of nutrition? They're nothing but numbers, not a type of food.

Something that I noticed that was very strange the two days while we were at the hospital for the transplant evaluation was that I was pretty much the only thin person there, including patients and medical staff. I truly felt like a freak. And, all of the food that I saw for sale at the cafe in the lobby was junk food too (pastries, candy, soda, etc.). Is it any wonder that there are so many sick people??? It was very depressing to realize that I'm apparently one of a very small minority of healthy thin people left in the Houston area.

We still haven't heard yet if anyone has donated any sick pay to Jerry. The person who is supposed to let us know this hasn't gotten back to us yet. Jerry's own sick pay and vacation pay were used up as of the end of last week. So, he may be on unpaid leave at this point until the end of the year when his job will be terminated. Until his Disability payments start, we may have no income at all for what could be several months before those payments start coming in. At least they did tell us that the payments will be retroactive back to the date of Jerry's last paycheck from his job.

Today I took Jerry to see his GI doctor for a consultation. He hadn't seen him since his original diagnosis back in early September. He is upping the dosage on both of the diuretics that Jerry's taking which hopefully will help reduce the fluid somewhat. Jerry weighed in at 216 pounds today. Probably 10 of that were his clothes but he's still carrying almost 50 pounds of fluid now. He doesn't have even an ounce of fat left on his body and very little muscle so all but about 168 pounds is excess fluid.

The doctor also commented on how quickly Jerry's condition has deteriorated since he last saw him. At that time he estimated that Jerry might have 2-3 years to live but today he gave him no more than about 6 months. On the other hand, he went on to say that Jerry's bilirubin level is stable even though he does still have jaundice. He also said that his MELD score is still on the low side at about 18 out of 50. That's because Jerry's kidneys haven't begun to fail. So, although he's only got six months to live, it sounds like he may still be too "healthy" to get near the top of the transplant list unless they have some other criteria for determining the position on the list other than the MELD score. I guess we'll find that out next week at the transplant evaluation. One bit of good news is that our son did get that job that he wanted and they've offered him quite a bit more than he's making at his old job which ends in about a week or so.

One thing that we did yesterday was have AT&T's DSL installed so that we can save some money on our internet connection. We've been using Charter for TV and internet but it was costing us about $82 per month. Just the internet was $49 per month and it would cost $59 per month if we dropped the cable TV connection. With AT&T we won't have to have cable TV and the 6 mbps DSL connection is only $35 per month. We've heard that DSL is very reliable, unlike Charter's cable internet which was constantly going out. We've used Charter for many years but we were fed up with the internet dying all the time.

Also, the liver transplant evaluation meetings have been set up for the week after next. We'll have to go there for two or three days in a row from 8am until 5pm each day. We have no idea yet what we'll be doing there all that time.

The other thing that's happened in the past few days is that our grown son moved back home. He just lost his job and can't afford his apartment any longer. So, he will be paying us room and board which will help us pay our bills. He did have a promising job interview yesterday and he's pretty sure that he'll get the job. Now that Jerry is no longer able to work or do chores around the house, our son will be here to help with things like mowing the lawn and driving Jerry to doctor's appointments.

Jerry's doctor said that although he tied off three more varices last night, they were not the cause of the bleeding. The bleeding is coming from somewhere else which is why they're doing a colonoscopy to see if it's coming from his colon. They did give him two units of blood last night so there was definitely enough bleeding to cause his blood count to drop. It looks like Jerry will probably be there for at least a couple more days.

Right now, one of Jerry's biggest problems is all the fluid that's building up in his legs, feet and belly. The diuretics that he's on don't seem to be doing any good and he's getting bigger and bigger. He's carrying around at least 20 pounds of excess fluid and probably at least half of that is in his belly. His feet swell up so bad that he can hardly get them into his shoes. His belly is even bigger now than it was before they drained off all that fluid the other day.

I spoke to my husband's boss and we've arranged for Jerry to have this week off to recuperate at home and he won't go back to work until after his transplant evaluation meeting on the 19th. We are hoping that Jerry will be able to continue working enough hours to be able to keep his insurance while he's waiting for his transplant. He will need lots of prayers for the strength to be able do his job which requires spending many hours on his feet. Again, I want to thank all of you for all of your prayers and donations.

The selection of online movies to watch is somewhat limited but I've already watched quite a few that I thoroughly enjoyed and I've got a list of over 100 more that I'd like to watch when I have the time. Of course you'll need a fast internet connection and a large monitor to view movies online. I do, so for me it's no different than watching a movie on my TV. Plus, I get to hear the movies in stereo using my good computer speakers. Our old TV doesn't look or sound nearly as good as my computer. Anyway, I highly recommened Netflix. It will save you the gas you'd use running back and forth to the video store and the cost per movie is a lot cheaper anyway. Once you sign up, you can read descriptions of every movie that's available and some even have online previews. It sure beats standing at the video store staring at row after row of DVDs trying to decide what to rent. Plus, you can rent movies (also old TV shows, documentaries, concerts, etc.) that are no longer available at the rental places. If you'd like to give Netflix a try, they have a free two-week trial period and you can cancel at any time.

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