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crazywoman
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 Posted: May Mon 17, 2010 10:44 am Post subject: |
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| Quote: | | 5/16/10: We had quite an ordeal this afternoon. Jerry decided that he wanted to take a real bath for the first time since he got home from the hospital so we thought it would be best if he just sat on the shower chair in the bathtub and used water from a bucket to wash and rinse with. The landlord hasn't installed a grab bar in the shower yet so standing to bathe wasn't an option. Everything was going pretty well until all of a sudden the legs on one side of the bath chair started to collapse. Jerry's weight was causing the legs to spread farther and farther apart on that one side and would have eventually tipped him into the tub. I had to quickly get him rinsed off so that he could get out of the tub before that happened. I can't believe that the chair couldn't support the weight of a man who weighs around 180 pounds. The product description at Walmart says that it should be able to support up to 250 pounds. Out of the 40 reviews on the Walmart site, everyone gave it a good review except for one person who said that the legs collapsed and broke under their 195 pound weight. It's looking like Jerry won't be able to shower or use the bathtub again until his legs are steady enough for him to stand the normal way. Hopefully Walmart will let us return the chair without the box that it came in because I already threw it out. We do have the receipt. |
What an ordeal. That could have been really bad! Sure am glad that Jerry wasn't hurt!
I will be extremely surprised if WalMart doesn't allow you to return it, and give you your money back, since you have the receipt, and especially since it is broken. Even many times when you don't have a receipt they will let you exchange it for something else. BTW the reason they won't usually give money back without a receipt is because they have so much merchandise stolen & then brought back for "money back"! They do usually let people exchange for something else tho (unless they never carried that merchandise in the store -- and you would be surprised at how much is stolen from another store and brought "back" there). They still lose money when the do the exchange, but not nearly as much. I know this, because I used to work at a Wal*Mart.
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Billie
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crazywoman
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| Posted: May Thu 20, 2010 7:52 pm Post subject: |
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| Quote: | 5/19/10: When Jerry and I were at the clinic downtown on Monday there were a couple of other people in the waiting room who had recently had liver transplants. They'd both had them much more recently than Jerry yet they both looked very well compared to how Jerry still looks even this long after his transplant. We overheard bits of their conversation and one of them said they went home only five days after their surgery. They both had their surgeries within the past two or three weeks and both are very mobile and looked pretty much healthy and normal. I never would have guessed that the man had even had a transplant at all. There were no signs that he'd even been sick. The woman looked very good too but she had some swelling in her legs and was using a walker even though she moved around very quickly and easily. I think what amazed us was that those two had somehow been high enough on the transplant list to get a liver even though they apparently never got anywhere near as sick as Jerry was before his transplant. It would seem that how sick a person is before transplant isn't nearly as important as a having a high MELD score and that it's possible to have a very high MELD score and not appear to be terribly sick. I think that Jerry's MELD score was relatively low because his kidneys never failed even though he was extremely sick in ways that perhaps didn't make for a high MELD score. It doesn't seem logical to me but apparently that's how it works. After seeing those two people it makes me wonder if perhaps it's not that hard to get to the top of the transplant list after all or that maybe there aren't as many people waiting on the list in Houston as we were led to believe.
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. |
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crazywoman
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| Posted: May Sat 29, 2010 1:32 am Post subject: |
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Sorry I'm late with this update.
| Quote: | 5/24/10: It may not seem like much to get excited about, unless you haven't been able to do it for almost two months, but Jerry finally got to take a real shower yesterday. The grab bar was installed a few days ago and his new shower chair arrived on Saturday. Jerry was able to stand up for most of his shower and then sat on the shower chair to wash his legs. He left the bathroom door open in case he needed my help but he never did. He did great on his own.
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. |
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crazywoman
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| Posted: May Sun 30, 2010 5:02 pm Post subject: |
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| Quote: | 5/29/10: Thursday at Jerry's PT session they evaluated his condition. They had him do a few small exercises, such as squeezing certain leg muscles, but nothing at all strenuous. I'm hoping that they'll give Jerry a better workout at future sessions. He can do the easy stuff like squeezing a towel between his legs at home. They're hoping to get him on their bicycle machine before too long and I think that's what Jerry would really like. He misses riding his bike. Jerry will have seven more PT sessions over the next few weeks, going twice a week.
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. |
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crazywoman
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| Posted: Jun Wed 09, 2010 12:28 am Post subject: |
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I'm thinking Linda Sue typoed the date on this one. Think it must should be 5/30/10. At any rate, I'm really late with it. Haven't been online much lately.
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5/20/10: Jerry fell in the kitchen late last night after I'd gone to bed. I heard him call out when he fell. He said he was trying to swat a bug and lost his balance. He hasn't been using his walker or cane when walking around the house so they weren't handy at the time. He has a long gash on his arm from hitting the cupboard.
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. |
Sorry to hear about Jerry falling. Hope he is better now. So glad to hear the fluid is coming off!
Edited to say that I also typoed when I "corrected" her date. (I've now corrected mine.) She has made a correction on the date on her site now.
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Billie
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crazywoman
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| Posted: Jul Mon 05, 2010 6:59 pm Post subject: |
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| Quote: | # 6/18/10: The good news is that the doctor said yesterday that Jerry could stop taking his morning insulin. He's to try going without it for a couple weeks and see how it goes. Also, he doesn't have to go back to the doctor again for a month but he will need to go for labs in two weeks.
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.
# UPDATE 6/18/10: Jerry's blood sugar was 127 tonight before supper. That's not great but not high enough that he had to take some insulin. It was 153 before lunch and he's supposed to take a couple units of insulin when it goes over 150. |
6/19/10: Jerry's blood sugar was quite good all day today without any insulin at all. It was 100 when he got up. Before lunch it was 115 and before dinner it was only 103.
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.
6/30/10: I just realized that I never mentioned that Jerry has been riding his bike again. He's gone out twice now, but just around the neighborhood. Also, the doctor told us a couple weeks ago that it's alright for Jerry to drive now. He's driven himself to PT the last two times.
Linda I am so glad that Jerry is doing so much better!!! Praise the Lord!!!
Riding his bike, and now driving!!!! Yay!!! 
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Billie
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crazywoman
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| Posted: Aug Wed 04, 2010 4:58 pm Post subject: |
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Jerry has been doing so well that LindaSue hasn't been doing much updating lately. Praise the Lord! I'm sure she has been busy trying to catch up on things, and hopefully getting some needed rest.
Here is her next & Latest update:
| Quote: | | 7/28/10: It's come to my attention that I haven't posted an update on Jerry in quite some time. That's mainly because there's not much news to report. Jerry is pretty much back to normal now other than taking a boatload of meds every day. He's driving places on his own now and would be riding his bike more if it wasn't so darn hot out. He's still eating like a horse but not gaining much weight. He weighs around 157 pounds (he's 6'2" tall) but at least most of the fluid in his legs is gone now. I haven't seen any sign that the Prednisone is going to turn him into a blimp like it typically does. They're gradually lowering his dose so maybe he won't get fat from it. He's completely off insulin now and doesn't even have to test his blood sugar anymore. He's also finished with his physical therapy sessions. And, the best news is that he only has to see the transplant doctor downtown every three months! He still has to have labs done every two weeks, mainly to test his Prograf level, but they're letting him have that done locally now instead of going all the way downtown for them. |
And one to another site in answer to a thread there posted 7/28:
| Quote: | | I haven't posted any more updates because there's really not much to write about. Jerry is pretty much back to normal now other than taking a boatload of meds every day. He's driving places on his own now and would be riding his bike more if it wasn't so darn hot out. He's still eating like a horse but not gaining much weight. He weighs around 157 pounds but at least most of the fluid in his legs is gone now. I haven't seen any sign that the Prednisone is going to turn him into a blimp like it typically does. They're gradually lowering his dose so maybe he won't get fat from it. He's completely off insulin now and doesn't even have to test his blood sugar anymore. And, the best news is that he only has to see the transplant doctor downtown every three months! He still has to have labs done every two weeks, mainly to test his Prograf level, but they're letting him have that done locally now instead of going all the way downtown for them. I guess I had more to post than I thought, LOL. |
LindaSue, I'm so glad to hear that he is doing so well!!!!
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Billie
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crazywoman
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| Posted: Oct Mon 11, 2010 10:08 pm Post subject: |
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Jerry had been doing VERY well, and there hadn't been any new updates on him. I finally forgot to keep checking. Today tho I went in to check, and I had missed a couple of new updates. Here they are:
| Quote: | UPDATE 9/28/10: It seems like these days we're mostly going around and around with the insurance company trying sort out who is supposed to pay which doctor bills. At this point Jerry has met his out-of-pocket for the year so we don't have to pay any more copays for doctor visits. However, the various doctors' offices can't seem to remember that and send us bills for them anyway. You'd think that they'd never dealt with insurance companies before. A couple weeks ago we got a bill for some labs that Jerry had done back in February. The lab wants us to pay them $470 because the doctor's office forgot to get approval from Jerry's PCP to have them done at his lab. Of course we won't pay it but we still had to go through the hassle of calling the various parties involved to sort out just who is supposed to pay it. Naturally everyone thinks that it's someone else's responsibility.
A couple weeks ago they lowered Jerry's Prograf and Prednisone dosages. Within a few day on the lower dose of Prednisone, Jerry's blood pressure dropped very low. It's obvious now that the Prednisone was what was causing his high blood pressure. We knew that it had to be one of his meds causing it because Jerry never had high BP before he had his surgery. Before starting on his BP med (Lisinopril), his BP was typically around 153/97 after his transplant. After lowering the Prednisone it went as low as 85/47 for a few days. This had Jerry worried so he's stopped taking the Lisinopril. Within a day or two after stopping it he was getting normal BP readings; not too high and not too low.
There's not much else to report right now except that Jerry has been riding his bicycle just about every night for a while now.
UPDATE 10/4/10: Jerry informed me the other night that he's ridden his bicycle about 90 miles so far since June. That may not seem like much, considering that he used to ride about 40 miles at a time before he got sick, but it's great for someone who has been through what he has. |
LindaSue, I'm so glad to hear that Jerry is doing so well now!!! Glad that they have lowered the Prednisone, and he's now able to be off the BP meds!!
I think he is doing excellent with the bike riding. As you said seeing what he has been thru that is quite an accomplishment!
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