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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 too soon. It was sort of painful but bearable. It's weird...like she's leaning on your leg and it sort of hurts but you're trying to just be cooperative and so you say "umm..so, uh...have you worked here long?" lol And the you kill time til it's over. After she was done I had to stay flat for another 2.5 hours which of course was no big deal. I hope it goes smoothly for you! Maddy
  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 the difference in how it progresses and your quality of life. I urge you to seek a referral to someone who knows what they're doing. Cardios and Pulms of course have good intentions and might have seen a few cases and feel they have a handle on it. However there are endless stories of people with PH who didn't receive adequate care for months/years. I have had CREST since '96 and was diagnosis with PH in October of last year. I was fortunate and had doctors who while they were not specialists, knew enough to do the RHC and then start treatment. I urge you to do the same..PH is fatal (quickly) if it goes untreated and if it's mild or just starting, you can truly help yourself by treating it NOW not later. :)
  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 treated for the PH and I'm doing quite well. My dear husband is in the Air Force so we moved this past summer and I'm with a new PH specialist who is a pulmonologist AND a rheumatologist. I researched her and her office and when I met her I was so happy. I am so happy to have found her. During our appointment she asked about GERD. I have no symptoms of it. I have no heartburn. I eat what I want, when I want and without problem. To cover all the bases she has me seeing a Gastro doctor next month. She wants (from what she described) to have him do the test where they put a pH probe in your esophogus?? Sounds lovely. Anyway, I read up on this a little more tonight here on SCLERO and I am just wondering if it's possible to have GERD and have no symptoms? Not everyone with scleroderma has it correct? I understand a large number of people do, but are there some here who don't? Is there anyone here who had no symptoms but was diagnosed with it anyway? If it's caught early and you take meds, can you prevent damage that it can cause? I saw and read about some of the complications but is that only if it's untreated? My head is sort of spinning and then I jerk m yself back to reality and remind myself not to borrow trouble. I am just curious about your experiences. Oh, last question...those who've had the pH test...was it as icky as I imagine it to be?? Thanks in advance for answering my many questions. I appreciate it and Happy Monday all! Maddy
  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 placement as much as I did the rest of the procedure! Sad but true! Maddy
  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 has made a difference not only in my shortness of breath (takes more activity to get sob than before), and I think the Raynaud's is better too. Gotta love that!
  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 that necessarily, but when I keep coming across the same info, I just had to ask! :) Thanks again and I hope those of you that haven't had a cath will look into that. I do know the earlier you treat it, the better and hey...maybe it will rule it OUT! :) Maddy
  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 you're doing? I'm just startiing meds and have had bad trouble with fluid retention, but I'm hopeful we'll get it worked otu and I can BENEFIT from the medications. Until then...I'd love to hear from others who have been down this road before. The articles have really scared me! Maddy
  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 the same page and I have it set up with insurance to get a second opinion. But I see the first rheumatologist this coming week and in my mind it's sort of her last chance to see if we can get on the same page. I've had a CREST diagnosis for 10 years now and she mentioned at our last visit that she feels I don't have that, but have Sjogren's instead. Mind you I have no dry eyes, mouth, or anything else. And I consistently test positive with the anticentromere pattern. And I have the R, S, and T of CREST. And now the ph which is definitely seen in people with CREST. Anyway, I've had my heart cath which she was sort of waiting on, and we have a diagnosis for my shortness of breath. It's time for her to TREAT me now. Enough waiting and seeing and guessing. I don't know if Plaquenil is the answer, but I know that if it's something that is disease modifying, and can help with fatigue, I'd sure be interested in at least discussing it! Thanks for the info...you all are the best! Maddy
  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 life (can only guess the pred had a role in it according to rheumatologist and kidney doctor), as well as a long list of horrible side effects. I think it is because of the high dosage which you won't be on, but just letting you know it really affected me negatively. It only helped my SOB for a short time so I didn't even get the benefit for very long. Steroids do have their place but I can appreciate your hesitancy to start them. 2. If you read my other posts you'll see I was just diagnosed (yesterday) with PH. I'm still processing it and wrapping my mind around it. Ten years ago there was no real treatment for it and the outcome was dismal. Much of the information on the internet still quotes prognosis based on that. However, there are several medications out there now that allow people to really life a full life, and the prognosis is much better, even with PH. The key is to catch it early. IF and that's a big if, you have PH it's important to catch it early. You do need to seek out the tests that can help you in ruling this out, or getting the diagnosis and moving on to treating it. The sooner the better! 3. I'm glad you're getting an echo. That echo can give an ESTIMATE of the pressure inside your pulmonary artery. Again it's just an estimate. Normal pressure on echo is 25 and mine was at 35, just enough to make us do more tests. Then the pressure during my heart cath was really high (80, so remember it is just an idea of the pressure). If it indicates that it is high at all, the next thing to do would be a heart catheterization. It's the "gold standard" for measuring the pressures in your pulmonary artery. They can also check your heart and how well it's working (IF the pressure in your lungs is high). The other tests can give the doctors good info about the condition of your lungs. On my journey, I started with a pulmonologist who did a lung perfusion scan, PFT, CT, sleep study, echocardiogram, tons of lab work, and finally the heart cath (as well as the kidney ultrasounds and scans due to my kidney problems). I was also referred from the pulm to the cardiologist, the rheumatologist, and the nephrologist. So it's been a long road and it took time to set it all up and do all the appointments, but it was information I needed. I now have a diagnosis and a treatment plan. After waiting for so long and being out of breath and tired, I'm ticked I have PH, but glad to have something to treat and work with ya know? Be proactive and know that these tests can definitely rule out PH but it's good to do them and get the info in case you do have it. I've found fabulous information at www.phassociation.org and a message board as well. There are several drugs to treat PH now and the prognosis overall is pretty positive imo. I've been in your exact shoes about oh... 36 hours ago. lol (my heart cath was yesterday) I know it's scary and lots to process but hang in there and take care of yourself and make sure those doctors are doing the right tests. You should also ask your doctor how many people s/he has treated with PH...need to know how familiar s/he is with it (and know what tests to order) because MANY doctors just don't ever have patients with it and they don't know much about it. Make sure you have a doctor who knows what's up! Good luck and let me know if you have any questions about the tests. They're all fresh in my mind and I can definitely tell you what to expect if needed. :) Maddy
  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 little tough" (as described by another doctor, or people who do blood draws on me), and I have Telangiastia (sp?). And yet she pulls Sjogren's Syndrome out of her back pocket. It is very frustsrating! Anyway, sorry to write all that. Just saying I can sort of relate. I see my rheumatologist again next Wednesday and if we are both not on the same page (want her to explain her reasoning and treatment plan), then I'm seeking a second opinion. I'm glad you were able to see a doctor that same day and have your issues addressed. It stinks to walk away from an appointment and have to wait to see someone else and feel like nothing got done. Way to advocate for yourself!!
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