Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 -----Original Message----- called the doc to get me started on the narcotic patch. I’m so glad Cindy, hopefully it will work really well and you’ll find relief once and for all. The GI at Baylor gave Ken a prescription for Phenobarbital to relive his itching, but he got the transplant before he could fill it. Just keep looking forward, when you get your new liver, the itching will stop! You are a hard working German Shepard! Barb in Texas - Together in the Fight.... Whatever it Takes! Son Ken (34) Fisherman, poker player, canine lover, & thankful liver recipient. UC 91, PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas ___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 I have this dilemma. The doctor faxed the rx to Medco. Medco calls me after hospital hours to inform me with a pre-canned message that my latest rx was rejected and they would mail me a letter explaining why. Mail me a letter, no way, I called MEDCO talked with a " customer service rep " ....and I do use that term loosely. I'm a customer service rep and I do not speak to my customers in the demeaning manner of which she did to me. Can I help you? Why yes you can. I need to have an explanation of why my latest rx was denied. I can't give you that info? Why, it's my rx and I have a right to know. What is the name of the drug? I don't remember, but surely, if your company got the faxed copy, and sent me a rejection letter and called me, then you would know exactly what it was. I'm sorry, unless you can tell me what the name of the med was, I can't help you. It's a friggin dermal patch with narcotics in it. I'm sorry I can't help you. Then get me to someone in your company who can!! I will have to place you on hold and see if I can get a pharmacist. Fine, do what you have to do. ON HOLD......... Are you still there? Of course I am, I am patiently waiting for a pharmacist..... Oh, well the wait time is long because this is the busy time for pharmacists. I don't mind, I will wait. Please hold...can I place you on hold. Of course you can, thank you. ON HOLD>>>>>>>>>???!!!**##! Are you still there? Yes, I'm still here. Did you find a pharmacist for me to speak with? No, maam, maybe if I read your rx's off, you can tell me which one is the newest. Don't you have dates of when rx's are submitted in the system....you must because you always seem to know when they expire. No response, I have ambien, naltrexone, etc etc. fenatol dermal patch.... YES< YES! That is the one. Why was it denied. It says right here because MIchigan law requires the rx to be mailed in not faxed. AND YOU COULDN " T TELL ME THIS 25 MINUTES AGO? 25 minutes was only the time I was talking with a rep, tack on the time that I had to wrestle with the voice response system, which didn't recognize my date of birth even when I punched it into the phone on the keypad. I can tell you this, their response system does not recognize: I want to speak with a customer service rep, but they sure recognize " give me a freakin representative " Anyway, off base on my purpose of this note. Work is demanding me to come back sooner, I want to wait until I finally get the meds and see if they work. Mike thinks I should go back to work, then go back out when I get them. The problem I see is one of games. The company is paying 100% of my sicktime benefits now, but if I go back to work and then pop out again, I am reduced to 90% of my pay. Because they impose these stupid rules, I have to play the game to protect myself. Mike thinks they will fire me. I say I am protected my the Disabilities act. What do you all think? I want to be honest, and I have been so forthcoming with everything relating to my illness, but now I find myself hiding the fact that it will be a narcotic patch, and now not wanting to go back because I will get penalized with pay reduction if I do the right thing for the company. What is the right thing for Cindy? Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 You’re on the transplant list for heavens sake! Pretty close to the top, right? Why don’t you take a leave of absence starting right now until after the transplant? I’m sure your doctor will agree with it and sign any forms you need signed. Stop working and apply for SS disability and if possible, sign up for disability at work too. Going back and forth, work - not work doesn’t sound good. Besides you really need to rest up and prepare for surgery. The stress at work doesn’t help. Barb in Texas - Together in the Fight.... Whatever it Takes! Son Ken (34) Fisherman, poker player, canine lover, & thankful liver recipient. UC 91, PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 > > You're on the transplant list for heavens sake! Pretty close to the > top, right? Why don't you take a leave of absence starting right now > until after the transplant? ... Besides you really > need to rest up and prepare for surgery. The stress at work doesn't > help. Barb, Sometimes the stress of just waiting can be harder than dealing with work, which can be a regulating force in our lives. Although Cindy has been on the waiting list 2 years, her MELD 7 weeks ago was only 9 (msg 100190 Apr 12, 2008). She was called as a back up recipient in March because of her Hep-B positive status. Typically in Michigan transplants are done when MELD is between 20 and 25. Right now in Michigan there are 62, 49 and 16 waiting with MELDs above 10 in blood types O, A and B. If no one were added it would take Cindy about 10 months to be at the top of the list. When I was listed in Feb of 2005 with a MELD of 22 it was expected that I would get a transplant relatively quickly. During the next 2 years my MELD occasionally shot up above 25 but was usually between 19 and 23 and most of the time I was among the top 5 on the list for my blood type. During my wait more than 100 others joined me in the top 5 and when on to be removed because they had a transplant or other reasons. Now Cindy could get offered another liver tomorrow - I think that is unlikely, but it could happen. In my opinion she faces an addition year or two of waiting. Neither of us can know Cindy's situation. But I think your suggestions were based on a misinterpretation of her status on the waiting list. Tim R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 Cindy, I understand the problem with the faxed prescription and I'm kind of surprised your dr didn't tell you that a faxed prescription can't be filled. When I had the patch my pain dr. explained that since it is a regulated narcotic the pharmacy has to receive and fill the original prescription. This may sound like a very simplistic suggestion but why can't your dr. write you a one or two patch prescription since each patch lasts for three days to cover the time while you wait on the mailed prescription. You can take that prescription to your local pharmacy and get it filled. Even if your insurance won't cover that prescription and you have to pay cash for it you at least have the peace of mind that you don't have to worry about work. Then you aren't playing any games. It shouldn't affect getting your other prescription since it wouldn't be a large enough amount. Just a thought. Also the Americans with Disabilities Act in a very simplistic explanation is to make reasonable accomodations to allow people with disabilities to perform the same work as the able bodied. I'm not sure that this situation would apply under the act. If you get addicted to the patch drug addiction is covered under the Disabilities Act. However, Family Medical Leave (FMLA) requires employers to provide up to 12 weeks of unpaid leave for a serious health condition for themself or a loved one for which they are a caregiver. This time can be takenly intermittently. FMLA would probably be the most applicable guideline here. If you use FMLA leave you have to be returned to the same or an equivalent position. I'm sure if they tried to fire you if you uttered the letters FMLA they would probably change their mind. FMLA lawsuits are hard for employers to win and you certainly qualify for a serious health condition. As far as company imposed rules regarding use of sick time there aren't any government rules that apply because at this point the gov't doesn't require paid sick leave. I don't have any advice unfortunately you are at the whim of your employer. The good news is at least you have paid sick time. Most people I know don't. I also don't think your Company can give you problems for taking a prescribed medicine in the proper dosage. Even if you have a drug free workplace you can't fail a test if you are taking something per dr.'s orders. Ohio requires all people who fail drug tests to be contacted by a doctor and explain the positive. The dr. then decides if it is a legit reason or not. All this has to be done before the employer is notified of the result. The dr. determines that I am on this patch for this reason is legitimate and the I had a poppyseed bagel for breakfast is not. I know you are in a different state but very rarely is Ohio on the forefront of employment law so I would think the rules would be pretty similiar everywhere. Hope this helps a little, Darcy The problem I see is one of games. The company ispaying 100% of my sicktime benefits now, but if I goback to work and then pop out again, I am reduced to90% of my pay. Because they impose these stupidrules, I have to play the game to protect myself. Mike thinks they will fire me. I say I am protectedmy the Disabilities act. What do you all think?I want to be honest, and I have been so forthcomingwith everything relating to my illness, but now I findmyself hiding the fact that it will be a narcoticpatch, and now not wanting to go back because I willget penalized with pay reduction if I do the rightthing for the company. What is the right thing forCindy? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 -----Original Message----- But I think your suggestions were based on a misinterpretation of her status on the waiting list. Tim, you’re 100% right (as usual!) I had no idea what Cindy’s MELD is/was, just that she was called once already. That long of a wait is unbelievable, it seems like she’s been listed and coping with itching forever. Ken waited a year and we thought that was long, geez. Cindy, in that case I agree with Darcy, get your prescription locally. Mike might have a point about going back to work, why not talk to your doctor about it and see what he’s says. Go to work, if you act loopy for a day or two big deal. I doubt the doc is giving you big of a dose. Go for it. Barb in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Tim is correct in my meld score. The only symptoms I have are unrelenting itching and fatigue from lack of sleep caused by the itching. I work because the health insurance will pay for the transplant at 100%, plus $10,000 for travel/lodging afterwards and one full year of medication at 100%. Pretty good incentive. It is just that other people at work abuse the sickleave/FMLA policies and it makes it bad for those who really need it. My company, if not regulated by government, would ignore FMLA. When you go out sick, they jump right on it and send you these forms for the doctor to fill out. I went in April, and had them all filled out in very minute detail. 2 days after they were faxed to work, they sent me a new set to 'take with ...at my next appt.' Reason being, they don't like my medical restrictions forcing them to work me no more than 9 hours in 24 hours and no more than 45 in a week. And now that I left work Thursday after noon with about an hour to go, they sent me more paperwork to have the doctor fill out. (they had to have mailed it out the day before I got sick to have received it Friday morning in the mail) Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 I am aware that sick leave pay benefits is different from FMLA. Someone can have the flu, and get paid sick leave benefits, but not qualify for FMLA. PSC is FMLA covered, but we have to follow the sickleave rules. The first 2 absences in a calendar year are paid at 100% from day 1. The thirs is 90% paid for the first day, and 100% for subsequent days. The fourth is 90% pay for all days. The firth is no pay for the first day, 90% for subsequent days. Now having said that, If those illnesses are FMLA, they don't count against you in your performance, but if it were for non-FMLA related, flu, cold, it would be an occassion that counts against you. I had the flu back in January, so that was hit number 1. I was hospitalized with problems in March(and they did not want to cover it under FMLA, because some doctor decided to put down heart related issues...and it wasn't heart related.) I fought hard to get the supporting documentation for PSC. But then, I had a customer blow one of those foghorn cans in my ear and the next day I was severe pain in my ear. That was strike #2. I apparently had another non-PSC related absence in July of last year, which is #3. So this one is #4 unless they count it as PSC related. My concern right now is that I went out, but the doctor couldn't get the meds to me in time, so I am off 3 work days now without taking the meds...although the fatigue and agony of itching is certainly part of my disease. The issue I am struggling with is staying out until the meds come and I get regulated on them, or going back and going out when they do come in. The company is switching to a new computer system (SAP), and they want everybody there. My theory is, right now I am restricted due to medical reasons, but if I go out now, get regulated on the new med and can return to work before the implementation, the doctor might lift the restrictions and the company would get more productivity out of me. I've always been a sucker for working overtime. I'm a good seller, and I perform at 200% of what is required of us (no, I'm not exaggerating that....we have highly regulated performance standard. We have to be on the phones a percentage of time. Above 98, I am always on the phones 98% or higher putting me at 200%. My compliance (meaning being on the phones at the right time, coming back from breaks at the right time,) that is at 200%. My quality is at 200% which is measured by them calling back random customers and surveying them. My Monitoring is at 200%, which is supervisor recording calls and rating them for very specific things. My sales is up there...we have to sell $3500 in sales each month, or our Sales/Number of calls has to be $2.19 per call. Mine was $2.98 and $6000 in sales. I've all the confidence in the world that my transplant coordinator will write my off for whichever way I choose. I guess it comes down to what my conscious will allow me to do. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 You have my sympathy on that program. We've just switched off of it after 7 years. I can only hope the new one is better - surely couldn’t be worse! Arne 57 - UC 1977 - PSC 2000 Alive and well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Cindy Baudoux ....The company is switching to a new computer system (SAP), and they want everybody there... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 since each patch lasts for three days>>> Cindy, I wanted to offer some suggestions per my personal experience with the fentanyl patch. I was on the lower (25mcg) patch for nearly 2 months after my tx because of broken/cracked ribs which happened during the tx. Part of that time I was on the 50 mcg patch. The patches are supposed to last 3 days but they only were effective in me for 48-50 hours so I needed to change them more often than most people. While on the patch I didn't even attempt to drive - just didn't feel clear headed enough to drive. It could be that with you using the patch but not healing from a tx that you will be much more clear headed and able to drive/work while the patch is ridding you of the itching. And yes, the pharmacy has to have an original and it must be hand carried or mailed to the pharmacy. My tx team was too far away for this to happen so my local GI wrote the rx for me and we would go to their office to pick it up and then take it to the pharmacy. The fentanyl patch saved me from awful pain when hydrocodone and percocet didn't even come close to helping. I"m sorry you are at the point of needing this drug but hopefully this will relieve that awful itching you have endured for so long. Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 28 years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandbaby due 10/08 and 1 golden retriever Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 since each patch lasts for three days>>> Cindy, I wanted to offer some suggestions per my personal experience with the fentanyl patch. I was on the lower (25mcg) patch for nearly 2 months after my tx because of broken/cracked ribs which happened during the tx. Part of that time I was on the 50 mcg patch. The patches are supposed to last 3 days but they only were effective in me for 48-50 hours so I needed to change them more often than most people. While on the patch I didn't even attempt to drive - just didn't feel clear headed enough to drive. It could be that with you using the patch but not healing from a tx that you will be much more clear headed and able to drive/work while the patch is ridding you of the itching. And yes, the pharmacy has to have an original and it must be hand carried or mailed to the pharmacy. My tx team was too far away for this to happen so my local GI wrote the rx for me and we would go to their office to pick it up and then take it to the pharmacy. The fentanyl patch saved me from awful pain when hydrocodone and percocet didn't even come close to helping. I"m sorry you are at the point of needing this drug but hopefully this will relieve that awful itching you have endured for so long. Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 28 years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandbaby due 10/08 and 1 golden retriever Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 I went through it back in 1998 at another company and it was a mess, and this company is smaller in size and doesn't seem to have 'stuff' together. We have delayed the implementation 3 times now...so my feelings are that it will get postponed again. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 It probably should have been, but I finished out that day and it was a Friday and then on MOnday is when I called in because of my ear and because I didn't report the incident immediately they didn't. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 It probably should have been, but I finished out that day and it was a Friday and then on MOnday is when I called in because of my ear and because I didn't report the incident immediately they didn't. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 It probably should have been, but I finished out that day and it was a Friday and then on MOnday is when I called in because of my ear and because I didn't report the incident immediately they didn't. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
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