((((Carol & Barb))))) gosh I'm so sorry you all have been having trouble. Barb, I wish you were near Moffitt in Tampa, they are so good. Even just for another possible plan. It just seems like they do the same things, and seem surprised when they get the same results. And I'm so sorry to hear about Nikita having all that stuff going on, the stress has got to be bad. I do hope you can rest and let go some, I know being mothers its next to impossible. Especially when you have to fight with doctors. The logic on the transplant seems backwards, it sounds like they care more about covering themselves legally than saving your life, to put it bluntly. If they wait until you have "nothing to lose" so to speak, at your absolute worst, your survival odds are much slimmer, but they have less liability if something would occur. It sounds like they aren't really confident with their own abilities. Can you get to Mayo or Cleveland Clinic or somewhere where they focus on survival rates not liability and "patient first"? If we get health care reform, it may be harder to get what you need. I think your husband is going to need to fight for you on this, along with you. You know what you need deep down and what you can handle. You need to go to a place like Moffitt in Tampa that does so many of these things in all different situations and prides themselves in being able to handle challenges. Is there a Cancer Treatment Center near you? Can you get a patient advocate to help you? Maybe you can email Mayo JAX and contact a doc there and get some advice on what they could do if you were there, or what they would do. U of Penn does a lot of liver transplants, I don't know what ese they do and how far away they are. It just seems you should have some control over this. I really think you may need to get a third party patient advocate. Also, the cancer foundation often calls doctors and "educates" them. If the docs get pressured by knowledgeable people, sometimes they will get on the stick. The cancer foundation may help, the epilepsy and kidney foundations helped my sonand me alot. I think if you explain what is going on, they may be able to help in some way.Did you ever get a good second opinion on your recent situation?
Carol, it's awful what they are putting you through as far as meds. What's the big deal with plaquenil? Even a small dose would be better than nothing. It would seem a better choice than prednisone by injection, which sounds like what they were going to give you. I just had a shoulder shot and it is affecting me like I'm on a taper pretty much and is lasting a long time. But prednisone increases bleeding, so why would they prefer that? I'm with you, I dont get it. I liked my shot and it didn't hurt. If it doesn't disqualify you then maybe you should try it. Whatever you decide to do, it will likely be right. You are tough, Carol, and I would try to ride both sides of the fence as long as you can get away with it and give em heck when you can. If the rheumie prefers to do the injections (which they receive higher compensation for BTW) then maybe thats a way to get some pred at least as long as it doesn't disqualify you. Otherwise, I would try to find out exactly what drugs they feel are safe for you to take while on the list. This stuff is in writing on a website somewhere if they didn't give it to you and not allowing you your meds for your lupus is just another way to discriminate against you. They are making this really hard, and maybe you too need to get the printed out docs for transplant criteria or make a request in writing for the information. I thought not so high doses of pred are okay. MAybe the shoulder injection is not classified the same way. Also, maybe they should just give you pain meds if nothing else. You shouldn't be made to suffer. Also, there is massage therapy, whirlpool, ultrasound and cool packs, and if you bug them enough for all this other crap, they may give in and give you what you need. Oh, also there is a muscle relaxer topical gel called Voltaren gel and its about as strong as a voltaren pill, which I can't take, but is absorbed through the skin so it doesn't stress the liver as bad. It is strong and works for pain and stiffness, not so much for swelling, but it can help and they may not consider that a drug because it is a topical. Also there are lidocaine patches, 12 hours on, 12 off, but at night they are wonderful and they numb stuff up and can be cut. I have all of this stuff. If you ask about all this stuff, then maybe you'll ultimately get what you really need. I believe they can give you some of your drugs, I can ask on the liver transplant site--there restrictions are stiff too.
I pray for you guys and my thoughts are with you both. I wish I could help, if I was a millionaire I'd fly you both to whereever you needed to be to get you whatyou need. I wish so much things would work out. I will pray for your doctors, that they will develop some insight andcompassion, and that things work out and become more bearable. These docs dont realize that our bodies have adjusted to these meds and that we function worse and probably are more of a problem without some of them. I wish you the best Barb in lowering the pred. According to my old records, I had a pituitary problem like cushings that caused my adrenal problems, so now that I've been on 20 mg a lot, I am falling into spells of deep sleepwithout it and my family has difficulty waking me as my pituitary isn't recovering as it should. I so understand the difficulty, just lowering it can be hard for so many reasons, not to mention lupus, then starting a new med too.
I miss you guys and want you both to be well. Love to you both.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids