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 Posted: Oct Sat 31, 2009 4:08 pm Post subject: |
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Add me to the list of those who think about you guys and are keeping the good thoughts that things start to turn around for the better soon.
LindaSue, having your son there is going to be a godsend right now. He'll be able to help you and Jerry with whatever you need doing, so it just proves the point that every cloud does have a silver lining. Hopefully, he'll hear something about that job soon, and I'm hoping that Social Security doesn't hang you up very long. |
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LindaSue
Joined: 24 Mar 2005
Posts: 45
Location: Spring, Texas
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| Posted: Nov Sun 01, 2009 12:30 pm Post subject: |
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| eaglssong wrote: | Add me to the list of those who think about you guys and are keeping the good thoughts that things start to turn around for the better soon.
LindaSue, having your son there is going to be a godsend right now. He'll be able to help you and Jerry with whatever you need doing, so it just proves the point that every cloud does have a silver lining. Hopefully, he'll hear something about that job soon, and I'm hoping that Social Security doesn't hang you up very long. |
Thanks. Right now I'm having second thoughts about our son moving in being a godsend, LOL. He brought over some more stuff from his apartment last night and it's all piled up in our living room. He also brought home about three week's worth of dirty laundry that I had to do yesterday. His plan is to help me to clean out our garage soon so that we can fit some of his stuff out there. Otherwise he's having to squeeze an apartment's worth of stuff into his tiny bedroom.
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| Posted: Nov Fri 06, 2009 7:00 pm Post subject: |
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I just went to look for updates on LindaSue's site, and I wish the news was better. Here's what she said a couple of days ago:
| Quote: | 11/4/09: On Monday Jerry went to have more varices banded. This time the doctor only banded one so it looks like they're pretty much taken care of for now. He wants Jerry to see him once more at the beginning of December to check them and see if there are more that need banding. He still has no idea where the bleeding came from the last time so there's always the possibility of a bleed like that again even though the varices bleeding has been taken care of.
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 he's 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. |
Linda, please know that our thoughts and prayers remain with you and Jerry, and we'll be hoping for some better news when he has his transplant evaluation.
I can't even begin to put myself in your place, or to know what you must be feeling now, but please know your friends here are walking beside you.
That is good news about your son and his new job. One less problem to deal with, and it sounds very promising. I wish him all the luck in the world, and hope he loves it. |
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missymagoo12
Joined: 13 Aug 2006
Posts: 1232
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| Posted: Nov Fri 06, 2009 10:37 pm Post subject: |
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| i have added londa sue and her family in our prayer lists. i am praying that her husband will get better soon. sue |
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crazywoman
Site Moderator
Joined: 22 Mar 2005
Posts: 5838
Location: WY
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| Posted: Nov Fri 06, 2009 11:35 pm Post subject: |
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Thanks for finding and posting the update Anne! I've been busy lately & forgot to go check for updates the last couple of days. The last times I'd checked the3re weren't any.
LindaSue, I'm so sorry to hear that your husband's condition it deteriorating. You, your husband, and family are still in my prayers. Hope the eval goes well.
I'm glad to hear that your son got the job!!!! And how wonderful that it is a better paying job! Hope it works out very well for him!
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Billie
4'8" Started LC WOL Aug 2003
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crazywoman
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Joined: 22 Mar 2005
Posts: 5838
Location: WY
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| Posted: Nov Sun 08, 2009 11:30 pm Post subject: update 11/7/09 |
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11/7/09: Yesterday was Jerry's first day of the transplant evaluation. Our son drove him there and it was a day of tests such as X-rays and MRIs. Next Wednesday and Thursday he'll have two full days of various tests and meetings with doctors and counselors.
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Billie
4'8" Started LC WOL Aug 2003
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LindaSue
Joined: 24 Mar 2005
Posts: 45
Location: Spring, Texas
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| Posted: Nov Wed 11, 2009 9:05 am Post subject: |
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We're leaving here in about 30 minutes for the first long day of tests and transplant meetings. Tomorrow (Thursday) we've got another full day at the medical center for more tests and consultations.
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| Posted: Nov Wed 11, 2009 10:07 am Post subject: |
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| Linda, you're never very far from our thoughts and prayers, and we'll be hoping for a good resolution by the transplant comittee and that they place him near the top of the list, and that a suitable donor is found quickly. You and Jerry deserve no less!! |
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crazywoman
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Joined: 22 Mar 2005
Posts: 5838
Location: WY
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| Posted: Nov Wed 11, 2009 12:50 pm Post subject: |
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LindaSue, As Anne said, you are always in our thoughts and prayers.
We're praying for good results from these test & interviews, and for healing.
You & your family are in our prayers for strenght, and whatever your needs may be.
Thanks for posting & letting us know what is happening.
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Billie
4'8" Started LC WOL Aug 2003
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My mind not only wanders, sometimes it leaves completely. |
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| Posted: Nov Tue 17, 2009 11:53 am Post subject: |
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Here's the latest update I could find on LindaSue's site:
| Quote: | 11/13/09: During the two days of the transplant evaluation on Wednesday and Thursday, we met with various counselors and Jerry had all sorts of tests done. Here is somewhat of a summary of some of the highlights of the ordeal...
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. |
I know money is tight for everybody right now, but maybe if all of us could see our way clear to even make a small donation, it would help to ease Linda's mind a little. Just think how much it would help if every registered member of this site could contribute just a dollar or two a month.
LindaSue, I think about you and Jerry daily, and I'm hoping that those Social Security Disability payments come through, and FAST!!! I can't begin to know how worried you are at this point. Worrying about Jerry is one thing, but having to add the stress of the medical bills shouldn't have to happen in this country. |
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| Posted: Nov Fri 20, 2009 8:48 pm Post subject: |
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Here's the latest update.
| Quote: | 11/20/09: We got an email this afternoon from someone on the transplant team. They did put Jerry on the transplant list but we haven't heard where they've placed him or how many other people are in line ahead of him. Next Wednesday Jerry goes to see the doctor who runs the transplant team so maybe he'll get more information then. They are also going to send a certified letter officially notifying us of the listing.
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. |
Let's hope that LindaSue and Jerry finally get some good news. |
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playtime8978
Joined: 09 Oct 2009
Posts: 132
Location: U.K
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| Posted: Nov Sat 21, 2009 6:17 am Post subject: |
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Oh my the hell that they are going through is awful, I cannot believe in a first world country that people are put in such an awful situation regarding medical care, People do not choose to be sick and they certainly don't choose to need major surgery yet they charge so much for them, its when I read things like this I am glad I live in a country where medical care is covered by the government it may not be the best at times but we know if we are really sick we get treated, the major problem is the shortage of organ donation, there has been much debate whether organ donation should be the norm and people have to opt out, rather than in, if they have significant objections, I am on the donor list, heaven forbid anything happens, but the awful thing is even if registered they still have to ask and get permission off next of kin to harvest the organs, It must be awful for someone who is grieving to have to make that decision and so soon. I wish they would make it compulsory, it would save so many lives and so much suffering, you are n my thoughts Linda and I hope that everything works out for you and you get that disability money very soon.
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LindaSue
Joined: 24 Mar 2005
Posts: 45
Location: Spring, Texas
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| Posted: Nov Sat 21, 2009 12:00 pm Post subject: |
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One thing that my husband wants to do, once he's recovered from his transplant, is to hold an organized bicycle ride to raise awareness for organ donation. It seems like that used to be an option when you got your drivers license but I didn't see anything about that on the new ones that we got this summer. Probably most people don't even realize that they can donate their organs or know how to go about getting an organ donor card.
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| Posted: Nov Sat 21, 2009 1:32 pm Post subject: |
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Very good point Linda,
I used to carry a donor card, but I just realized that I haven't seen it in years, and I don't recall seeing a place on my driver's license either. So thank you for the reminder.
For anyone interested donating, there is a ton of information, as well as printable donor cards at:
http://organdonor.gov/
And from the same site, if you want to register as a donor online:
http://organdonor.gov/donor/registry.shtm |
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wiccanmalenurse
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Joined: 30 Oct 2005
Posts: 4876
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| Posted: Nov Mon 23, 2009 12:57 am Post subject: |
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Linda again you both are in my thoughts and prayers! I hope the best outcome possible is achieved and remember we are here for you as much as we can help! Remember Karma has a way of being there when you need it most and you have been so generous with your time and self. I am sure you will see positive things. Take care, try to stay strong and keep us posted,
David 
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