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About mews

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  1. Well said judyt...much better than I could have said it, and I really did want to say all that but my lap top was dying LOL. We have to be our own best advocates, no one will look after me better than me! Stay well my Friends Mary
  2. TT1 I have also had a CT lung scan and was told I had Atelectasis in the lung bases. Dependent atelectasis, the Cardiologist told me I should see a Pulmonologist and then the Rhume said I should wait... I never really found out what it meant. I did read that it was a partial lung collapse of both lungs. I am not waiting I am going to see a new cardiologist and then a Pulmonologist. This all happens in the next two weeks. I will let you know what happens.
  3. Debonair susie, you hit it right on the nose, If I feel that I should be seeing a certain type of doctor I go see that doctor. I don't wait for some of the doctor's doing their power plays to decide when. My cardiologist told me I had a strong heart and that I had a mild pericardial effusion, and some thickening of the left side of the heart, and to see my rheumatologist as she will very interested in these findings. Well a couple of days later I got the report and I was shocked. There were so many things wrong that he didn't tell me about it was crazy, like PAH...how do you not tell a patient about that! I hear it over and over again, "You're your own best advocate!". Stay Well, Mary
  4. Dear Chopper, I am so sorry about your burping, I have it also and it makes me and my family nuts! Have a better day and stay well, Mary
  5. Thank you Chopper, and yes I have seen and gotten a lot of great info from those sites. Joelf Thanks for the great info, I get it now. I will be having the Pulmonary function test in about a week to keep an eye on things, I will let you know how it goes. Stay Well Mary
  6. What exactly does this mean? Is it different from Lung Fibrosis and PAH? When I research it they are all together. Is it that they are just different parts of the lung disease? I have one more question a year ago I had a chest xray that said I had mild hyperinflation of the lungs. About a month ago I was told I now have PAH. Do you think that was just a prefix to the PAH and no one picked it up? Thanks for being so patient with the questions, I have so much to learn! Stay well Mary
  7. Hi Eah, I was just told I have Left Ventricular Diastolic Dysfunction, and also Pulmonary Artery Hypertension also some leaky valves and some more. This was a complete surprise to me. I am having to push my cardiologist right now for more testing while I wait to see my rhueumatologist, all this while changing Insurance companies. A dear friend with this cruddy disease said to me lately that it gets so tiresome to get these doctors to think outside the box, always push for yourself, and what you think the next step should be!
  8. Thank you Shelley, You seemed to really hit the nail on the head with your post. This is such a busy time for everyone in my family, I don't want to stress them before I know what the scoop is. I did speak to the cardiologist late today, for some reason he makes me feel like a small child and how dare I ask questions. I don't like that feeling. He kept saying we spoke about the fact you might have to have a catheterization, I was like..we did not..and my husband was with me, he never even told me I had PAH, I found that and some other stuff out when I got my notes to take to the rheumatologist's office. I'm not really liking this doctor so much anymore. I mean I'm having a hard time walking, I'm gasping for air, I'm breaking out in an all over sweat. I don't know he now want's to run these tests and I'm not sure I trust him. Do you all think I should look for a new doctor, or am I overreacting? I'm not sure. Stay Well, Mary
  9. Thank you Shelley for the warm wishes and great idea about talking to my primary doctor. I will go to see her right away, that's a great idea! Jean that is a great idea about the pillow wedge, did it come with a cover? I also have the whole GERD stuff going on, in fact I'm not so sure what part of my body is not affected! :VeryHappy: I do try to take everything with a smile on my face, but this heart thing really caught me off guard! :blink: Stay Well, Mary
  10. Good news for you TamaraB, There's nothing better than when you find a good doctor that you can trust, and who is willing to work with you and your illness. I hope all your test come back okay. Stay Well, Mary
  11. Hi Chopper, Just last year I had a lung function test and it was ok, chest Xray showed I was taking exta large breaths, but I really didn't notice it then. I started having trouble on walks, cleaning, any type of exertion. I would find myself trying to take deeper breaths for air..or like someone quite large is sitting on my chest, or kinda like a fish out of water..LOL. Now I have been using my inhaler at night mostly. Now it's the worst when I lay down flat or on my sides. This has come on kinda fast for me which makes me kinda nervous. I'm having a very hard time sleeping at night. I maybe get 2 to 4 hrs sleep at night, and I'm taking 40mgs of flexeril which should knock me out but no such luck! I do have the dry cough also but my salivary glands stopped working a couple of years ago, so my throat gets so dry I'm not sure what starts what! I always have a bottle of water by my side, which in turn starts the bladder in....oh but now I'm way off track. On top of all of that I was also getting chest pains when I laid down and on my side, so when I told my primary doctor she sent me to the cardio right away. That's where he did all the tests and now I'm waiting for some more. If you think something is wrong don't wait go see your doctor! It's very important! :excl:
  12. Ah Amanda, the pillow thing, I start out with at least 3, for both the breathing and the acid reflux, a short time later I am awake gasping for air with no pillows in sight. Maybe I should try and strap them to my head tonight! That is very funny with your mother, my family all know about the scleroderma, it's now the heart and the PAH they are kind of in the dark about. I just feel like things are moving kind of fast! I wish my mom was here, I know she died from this disease, but she went undiagnosed. Whats funny is she would have acted just like your mom..but I think all loving moms would! Stay Well, Mary
  13. Wow, thank goodness I found this forum is all I can say!! Every one of you have given me something I can use today. I can't thank you all enough. I do know what makes me the most nervous is at night when I try to lay down to sleep, I feel the struggle to breathe. I wake up sweating and almost gasping for air. Now I'm starting to use an inhaler every night and morning. I also can't bring myself to tell my family the whole truth about what's going on with my heart. My husband was with me when I had the tests done so he knows some of it, but I haven't really told him all of the rest of it. I feel so bad and don't want to worry them. They are all starting new jobs and I just can't bring them down like that and make them worry! Does anyone else ever hold back all the "BAD" news from the family? Or am I the only weirdo? :VeryHappy: Stay well, Mary
  14. Thank you all for writing back to me. Your support is very much welcome! I do have an appointment with a very good Sclero doctor. but it will take 3 months before I can get in! I have seen so many incompetent doctor's in the last few years, the sheer thought is very scary. The last primary care doctor I just saw looked at a letter from my dermatologist saying I have Telangiectasias all over my lips, tongue, cheeks, and chin and that he feels I could have CREST. Now this is a doctor whom I never saw before; she just walked into the room, hadn't even examined me yet and said "What can I do for you?" She then picked up that letter, read it then threw it at me and said, "Well you don't have that." I thought I would die, this is what I constantly run into, people like this. So clueless with this disease. One doctor can set you back months. I just moved to Maryland. This cardiologist I saw seemed good, he did find all this stuff wrong, but I am a little confused about why he only told me about some of it, and why he's not treating any of it and not running more tests just "make sure you see the rheumatologist". I guess this is the way it's done and I need to follow the rules. I just don't want to wait 3 months for the answers. Thanks all for having a place like this to vent!! You're the best.. Stay Well, Mary
  15. Hi all, this is my first post on this site. I just had my first visit with a cardiologist and I was shocked for sure. There were so many issues I am somewhat nervous now. I went there to have an Echo stress test. First my blood pressure was high twice,they would take it laying down it would be low, then I would stand up and it would go through the roof. Then my EKG was abnormal,so now I'm on the treadmill and I was having a hard time breathing once again, I feel as though I cannot finish it. It was finally over he came and told me that I need to bring the results to my rheumatologist right away because she will be very interested in the results. So the results are as follows, I have a small pericardial effusion (fluid around my heart), thickening of the right ventricular wall and the septum, left ventricular- E/A reversal consistent with diastolic dysfunction, grade 1 heart failure...WHAT?! Then THE BIGGIE, estimated pulmonary artery systolic pressure of 36 mmHg, then the words are written, Mild pulmonary hypertension. Now he told me about the first couple of things in person and then the rest I found out while getting my notes to take to the rheumatologist's office, which by the way will take me 3 months to get in because I'm new to all this!! I guess what I need to hear from someone is: is this common for it to be in the heart and lungs with all this stuff going on? I already have the GI issues, bladder issues, skin changes on my face. I haven't seen the best doctors as of yet, most keep saying you don't have that!! I'm just getting very good insurance now. I thought the cardiologist was good but I feel he didn't answer my questions and just pushed me onto another doctor. What do you all think? I hope I wasn't all over the place and I made some sort of sense here. Thanks all, Mary
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