Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 I am not trying to start a flame war but I am curious.... I thought that you had done extensive research on the mgb before you had the surgery and before you fought to have insurance approval for others seeking the MGB. Does that mean they can hold you accountable for any problems they incurr? Just wondering. H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Hi , So nice to see a post from you! I miss you! Just a quick question....in your opinion was it worth it to go see Dr. Buckner? Did she change anything, or do anything differently from your local doctors? If so, is it working? Are you doing better? Just curious. You take care of yourself and keep posting. Love, squeek --- OneSuperMema@... wrote: > Dr. Buckner's medication of choice for RP is > Methotrexate; however, she said > if Imuran is working for me, then to stay on it. > (I'm not sure it is.) OR I > could talk to my local Rheumatologist about getting > on Methotrexate. I've > just heard so many horror stories about Metho, that > I'm hesitant to try it. > Also, and I know Heidi won't agree with this, but I > asked her whether I > should be on a stomach protector since I'm on so > many > medications....including prednisone. She said she > didn't think I should add > another medication to the long list at this time, > that if I feel some > discomfort to take something like Tums, but to keep > an eye on it. > > Okay, I'll be quiet for now. > Love you all, > T. > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 In a message dated 7/7/02 3:09:39 PM Pacific Daylight Time, OneSuperMema@... writes: << I think I would really have a difficult time sleeping with something on my face all night. ANYway, when the weather gets cooler and things calm down a little, I will get to a doctor and see about it. I promise. Good enough? >> No, it's not good enough!! Geez, see what you guys do to me???? Yes you do get use to sleeping with something on your face and now they have all kinds of small masks. Would you rather get use to living 6 ft under??? Have it checked out... NOW! Heidi, will you please send me your pain reliever? I can see we are going to have problems without you around. LOL , we love you too much for anything to happen that could have been prevented. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 > > Hi, Sharon, > Yes, in my opinion, it was worth it to go see Dr. > Buckner. Mainly, because > my Rheumy is Greek (nothing against Greeks) and she > doesn't talk very much or > give me any information. And sometimes I KNOW I'm > having a flare, but she > says if your ears aren't red, you aren't flaring!! > Not so, according to Dr. > Buckner. So, for me, Dr. Buckner was able to give > me a lot of insight about > RP, what it can do to the body, how it can make you > feel, and what can be > done about it. As I said in my earlier post, I > never know WHAT is making me > hurt so badly because I have so many things wrong > with me. (NOT what I > imagined retirement to be like. LOL) So it was > nice to hear that in her > research she is working on testing that will > differentiate the CAUSE of the > problem. > > Since I won't be going to her all the time due to > the distance issue, she > didn't want to change my medication regimen; > however, she did indicate that > she thought Methotrexate might be something my local > Rheumy should consider. > In the written report that she sent me, she also > mentioned some other > medications that might be tried. She gave me a very > thorough examination and > was also thorough with the lab work. She also > wanted me to have a sleep > study while in Seattle (which I did) because she was > afraid there might be > some trachea problems when I slept. I found that I > do have sleep apnea, but > there's so much other stuff going on in my life > right now that I'm not going > to deal with the apnea. > > Sharon, I just couldn't get over how well the > doctors worked with each other. > I certainly don't see that with my doctors here, > unfortunately. The docs at > Virginia Mason truely seemed to care about the > welfare of their patients. > > If you've never been there, and you're planning to > go, I'll give you one > piece of advice.....wear your walking shoes. The > area is all very steep > hills and I don't think I've ever walked so much in > one day. > > Take care. > Love, > T. > Hi , When you are ready, I for one will be looking forward to hearing what Dr. Buckner had to say about you. Your visit sounds very interesting! I'm not planning on seeing anyone else at this point. However, if I ever lose " Dr. Wonderful " , I am just one state away from Dr. Buckner. I think my rheumy is tops and I trust him, which is very unusual for me. He has one other RP patient so has some experience. You take good care of yourself, and hopefully you can find a doctor who will talk to you and listen to you. Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 Wow! I'll bet you are really glad to be home after that trip. At least the parties were good and you got to spend time with family. I wonder if all the bruising could be from being on pred over a long term....even tho you are on a low dose now. Don't know....just a thought. Is it painful now? Take care, . Love, squeek > Hi all, > I guess by now you've realized that I'm back from my > trip to Colorado and, > trust me, it was THE trip from HELL for me. On the > way there, the > transmission overheated, so we had to stop awhile > for it to cool down. Which > wasn't too bad, as we just used this time to eat, > then got back in the car > and traveled on. Well, THEN about 10 miles down the > road the ac started > pumping out hot air. Mind you, the temp OUTSIDE was > 110 degrees. We drove > on about 15 - 20 miles to a town that had " services " > only to find that the ac > compressor needed to be replaced. Didn't mean > anything to me.....but it > certainly caught my attention when they said it > would cost $900.00. Well, we > couldn't travel in that heat with two children, one > adult, one old adult > (me!) and one cat (that my daughter had gotten my > granddaughter for her > birthday) so I booked a motel and we stayed > overnight as they said it would > take 4 hours the following day to fix the a.c. > (AFTER they got the parts.) > After we unpacked at the motel, we decided to cool > off in the pool and get > rid of some of the stress in the hot tub. Coming > out of the hot tub, I > slipped on the tile steps and fell which immediately > caused a HUGE bruise but > not much pain. We left the following afternoon with > an a.c. that worked > GREAT. We got several miles down the road and the > car started misbehaving > again. The oil pressure gauge suddenly dropped and > the " check gauges " light > blinked on. Oh No! Another problem! So, I babied > the vehicle into the > nearest town where we were fortunate to find a > lubricating type business. > They checked it out and said I was totally out of > oil. No apparent > reason....no leaks, not burning oil. (Keep in mind > that Roger, my husband, > had had the oil changed before we left on our trip.) > They filled it up and I > bought a couple of extra quarts of oil in case it > started losing oil again. > The man suggested we check the oil regularly. Sure > enough, the next time we > stopped to gas up, we had to add another quart of > oil. We made it on in to > my son's house in Boulder Saturday and had to add > additional oil. I don't > think I will argue with Roger again when he wants to > sell the Blazer. :-) > > My granddaughter's birthday parties on Sunday were > fine. She had two > parties.... one for her little friends, and another > one for her adult friends > (mainly relatives.) Monday afternoon was spent in > the Minor Emergency Center > for my foot and leg.....which were black and blue > and swollen from the fall I > had taken Friday at the hot tub. No broken bones > and no blood clots. > Tuesday was uneventful (thank God) and late > Wednesday evening we headed back > home. Twelve hours and 5 quarts of oil later we > were back in Tulsa. Be it > ever so humble, there's no place like home. > > I didn't get to meet Sue Parks like I wanted to, > darnit! Sue, I will call > you. I spent most of my time with my foot packed in > ice, elevated and on > pain meds. It is still badly bruised, much too much > for the simple fall I > took. The doctor thought surely I had broken some > bones and couldn't > understand why I bruised so badly.....from the place > where I actually hit it > on the tile, which was my shin, clear down to my > toes including the front and > back of my leg and top and bottom of my foot. Any > ideas, you guys? I'm only > on 4 mgs. of Pred. Not taking any aspirin, etc. > It's still badly bruised > over a week later. > > Soooooo glad to be home, and think I just might get > a new vehicle out of this > deal. LOL > > BTW, I received a card from Heidi and she said she's > ready to come home. I > imagine she misses her RP buddies. LOL > > Love, > > > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2002 Report Share Posted July 30, 2002 Sorry you are still in pain....do you think you should wait another whole week? You take care of yourself. Love, squeek --- OneSuperMema@... wrote: > In a message dated 07/30/2002 2:46:17 AM Central > Daylight Time, > Rpolychondritis writes: > > > > I wonder if all the bruising could be from being > on > > pred over a long term....even tho you are on a low > > dose now. Don't know....just a thought. Is it > painful > > now? > > > > > > Hi Squeek! > Yes, it is painful now, and I don't understand since > I didn't break anything > and it has been almost two weeks. I thought about > the Pred, but wouldn't you > think the bruising would start going away? Weird!! > I'll wait another week > and if it doesn't start getting better, I'll go to > the doc. > Love, > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Hi , I had a TP but not the ICT in August, 2000, in Liverpool, UK. I was in the operating theatre for about 10 hours, but this is very individual. Afterwards i had 48 hours in the ICU, and several days in the HDU. Again, this is very individual, and depends on your progress. In total, i was in hospital for 5 weeks, but, as i didn't have the ICT i had to learn how to manage my diabetes as well as recover from the surgery. I went back to work 15 weeks after the surgery. I'm a nurse working with sick children, so i have quite a demanding job, and i coped just fine. Since the surgery, my health and my quality of life has been much improved, although i have had the occasional problem, i do not regret having the surgery. If i can help with any more info, please contact me. Best wishes, Sue (UK) Quote Link to comment Share on other sites More sharing options...
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