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Maddy07

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About Maddy07

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    Sumter, SC

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  1. I had one and overall, the worst is the anticipation. I had a right and left side done at the same time (two incisions instead of one). The numbing s hot to the incision site isn't that fun, but that sting goes away quickly. During the procedure they gave me some relaxing med but I was awake the entire time watching the monitor. It was over quickly and at the hospital I was in (UNC at Chapel Hill, NC), there is not pressure bandage. There's a rather large nurse! She leaned directly on the incision site applying direct pressure for 20 min. And she timed it and didn't leave a second to
  2. Anything over 25 (at rest) on an echo is enough to warrant a right heart catheterization (RHC). Anyone who tells you differently is not up to date on pulmonary hypertension (PH) and Sclero! My echo estimated 35. My RHC showed a pressure of 87. You MUST and I cannot emphasize this enough, you must get to a PH specialist. If your cardiologist or pulmonologist is weary of doing a RHC or being proactive with this, please ask them to refer you to an PH specialist. Some even (like mine) who specialize in PH and Autoimmune disorders together! Treating PH early and aggressively can make all t
  3. I lurk regularly but have a question and figured I'd check with the "experts." :) I was diagnosed with Raynauds in '96 with a postiive ANA in the centromere pattern. Back then they still called it CREST and I was told it m ight or might not develop one day. I went on my merry way and have had very, very slow progression. My hands are puffy, especially in the morning. I have a some telangiestasia (sp? lol) but very minimal. And then last year I was diagnosed with Pulmonary Hypertension. It seems Scleroderma had indeed been working away on my lungs and I was oblivious. I'm being tr
  4. Ohhhh yeah. During my first delivery, it took 8 attempts. By the 4th one they called the anesthesiologist in and he would numb me first...still took him 4 more tries, and he was the "expert." I remember when the same guy came in to do the epidural I told him I hoped he had better luck with epi's than with IV's. I was glad he got that one in one shot! I've had several procedures or things where I needed an IV and I don't recall as an adult, ever having them get it the first time. It's a minimum of 3 sticks each time. It stinks. I had a heart cath recently and I dreaded the IV placemen
  5. Yeah on the pha ssociation message boards many people list their treatments in their signature. I see Coumadin mentioned very frequently. I myself am not on it but I know it seems pretty common. Maddy
  6. Janey, I'm glad to hear you've done so well on Tracleer! I was put on Revatio (started that this weekend and can tell a difference but having fluid retention issues and we're trying to balance out right mix of Revatio and Lasix). I was also prescribed Tracleer but as you know, it takes time to get the first meds from the company. I've heard such great things about the Tracleer in particular and I look forward to starting it once it arrives. Did you experience many of the side effects or have any problems on it? And how long before you could tell a difference? Oh and the Revatio
  7. Just an fyi. My numbers on echo were 35. I do have shortness of breath (so I'm symptomatic) and the gold standard for diagnosing PH is a right heart catheterization. My pulm and I both expected to hear I had mild ph since I only had 35 on echo. My number came back at 80! PH isn't something I'd play around with....if your echo indicates possible or mild ph, any ph specialist would tell you to have a heart cath done so you can know once and for all. Thanks for all of the replies. I agree and know that it is what it is. Worrying about it doesn't hep and I don't spend my day doing t
  8. In my reading and research, I keep coming across statements about prognisis that are pretty dismal. I'm not talking about old stats either. In several placess and articles, I've read that those whose PH is secondary to systemic sclerosis, they have a "particularly bad prognosis." I have been under the impression that with all of the drugs now available to treat PH that most people do really well in general. But I keep seeing quotes such as the above and mentioning how many are alive at 2, 3 and 5 years and the stats aren't pretty! Anyone here with PH care to tell me how fabulous
  9. Congrats on the wean! I'm down to 7 mgs of Pred and am sooooo close to being off of it. I envy you! Maddy
  10. Wow thanks for the info! Fatigue is what is killing me right now! Some of it is due to my shortness of breath (just diagnosis with PH a few days ago so just beginning treatment for that and will take time), but I'm just so tired no matter how you look at it. I'm a a SAHM with 2 young boys (1.5 and 6 years) and it broke my heart when we had to start sending my 1.5 yr old to daycare because I am too weak and tired to care for him. It was probably the most devastating part of being so sick lately. I hate sending him every morning...hate it. My rheumatologist and I are not necessarily on
  11. I'm just curious. I see many here are or have been on Plaquenil. Is this a disease modifying drug? What does it do exactly and is it something you can be on long term? I appreciate the info or links! Maddy
  12. My cuticles tend to look horrible and yes will bleed too if I don't keep them oiled up. Nail salons, and even drug stores will sell good cuticle oils and I've tried a couple of them. I put on the oil about 3 times a day and it makes a world of difference. I've heard vit E will work well too. I hope he finds relief! Maddy
  13. Sorry, I feel silly..didn't realize it was an old post. Ack!
  14. Oh Celia, your post is screaming my name...as in...are you living my life? lol 1. I too was put on prednisone for SOB, dizziness, fatigue, etc... I had surgery for somethign else while on it and had to up the dosage (when taking steroids, any stress such as infection or surgery makes your body need more of the steroid). The higher dosage affected me in a bad way and THEN I read about how Scleroderma patients should avoid it. Of course you have to taper off and that's what I've been doing for a few weeks now. I'm down to 9 mg's a day, but I've had a kidney crisis for the first time in my li
  15. I'm so sorry you had to deal with that. I'm glad you handled it so well though and that you had a good outcome. My rheumatologist (only seen her once) is not on the same page as me and after being diagnosed as CREST for 10+ yrs now, she suddenly spouted off that she thinks I might have Sjogren's Syndrome and not CREST. I have zero, ZERO symptoms of it....she asked about dryness in mouth, eyes, etc... and I have none of that. I have the anti-centromere pattern come up every time they test my ANA, I have Raynaud's, some thickening of my right hand, skin that just feels "different" or "a lit
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