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About tngrits

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    Newport News, Virginia

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  1. Hi everyone! I hope y'all are having a good weekend. I was feeling so much better on the Remodulin but it has been increased enough that the side effects are awful. Maybe I'm being a baby but they really are bad. The restless legs is the worst. Also the site pain is worse. But, doc says I am doing better. Still trying to learn to eat more but not much luck. We are using a quarter of a Phenergran tablet before each meal and that does help a little--makes me dopey though. If all goes well the doctor will add Letairis to my meds. He said there will be more side effects :( . Then in on
  2. Hi everybody. I have been on the Remodulin therapy for a month now. The dosage is increased every 3 days. I'm having lots of side effects: headache, extreme restless legs, sore muscles, etc. I am wondering how much of this is the medicine or if it has stirred up the fibromyalgia really bad. Anybody else on this treatment? If so, do you mind telling me about your side effects? Linda
  3. Hi everyone, I have been in the ER and six days in the hospital since I last posted but doing a little better. The doctor started me on the remodulin treatment. I actually inserted the needle and everything myself. The hospital had not ever done it and the ICU and pharmacy people wanted to watch. It was very easy and did not hurt. I have to gradually up the dose the way the doctor tells me every three days. That way the side effects aren't too bad. Between uping my oxygen and taking the new medication I really think I'm doing better. It's weird--sometimes I can go from good to awfu
  4. Hi Lynn, I don't post very often but wanted you to know how sorry I am that you got this prognosis. I too have been told by my heart doctor there is nothing more that can be done. I have pulmonary hypertension and it is stage 4. But I have a wonderful pulmonologist who is trying to give me more time. He has put me on remodulin and even with the side effects I am doing a little better already. Of course it is no cure but I'm blessed every day I wake up. I know all those feelings you must have going through your head. It is very hard and I suggest you find someone you can talk to in d
  5. Janey - I think that is the drug. They haven't come out here with it yet so that is why I don't remember. I sure hope it helps me. Reading is a good idea. I haven't taken time to do that in a long while. Everyone is so helpful here. tngrits
  6. Hi Amanda, That just might be the drug I'm talking about. They said it was $150,000 a year. I am just hoping my insurance covers it. Yes, there are also four stages of PH and I'm severe. I have not given a transplant much thought. I just don't see that happening. Thank you all for thinking of me. tngrits
  7. Jeannie - Yes, I am seeing a good pulmonologist who has dealt with scleroderma a lot. I wish I could remember the name of the medicine but believe it starts with a "r" and costs $150,000 a year. They said yesterday it will take a couple weeks to get approval from my insurance company. My insurance company would never go for the transplant and I am so far along I just don't think they would do it anyway. I'm hoping the medicine helps me some. Thank you all for being here. It is the one place you can go and say you're scared and everybody understands. Love to all, tngrits
  8. Well, I had my heart cath (left and right side). They also tried medicine on my lungs at the same time. I definitely have stage 4 pulmonary hypertension. The medicine did not help at all. The cardiologist said he knew of nothing to help me. My pulmonologist says he can hopefully give me more time and a little better quality than I have now. I don't know the name of the medicine but it is given through a needle under the skin in the stomach area I believe. I understand it is very expensive so thank goodness for insurance. Is anybody else on this and if so has it helped? I am kind of sc
  9. Hi everybody! I hope everyone is hanging in there. Some of you may recall I went to a retirement home (I am 57) thinking it would be best for me. Not! I spent two months in deep depression. So I moved in with one of my daughter's and my depression has improved a lot. But (there is always a "but") now I am very sick. I lost 70 lbs in 6 months without trying--can only eat a little at a time. Also started hurting in my chest, fatigue, shortness of breath, etc. It was confirmed today with a heart cath. I have severe pulmonary hypertension caused by the scleroderma. They tried the meds o
  10. Jeannie - too funny! You gave me a much needed laugh. I will remember that come Wednesday. Amanda - hugs girlfriend!! Feeling better today thank goodness. Just fighting diarrhea (probably from antibiotics). tngrits
  11. Hi everyone!! Hope everybody had a nice holiday. As usual, the adventures continue for me - lol. I went to the emergency room Thursday afternoon. I really thought I was not going to make it this time. Symptoms were really strange for me: wheezing, breathing fast and then it got really shallow, bad headache, and heaviness in my chest. Well, ER doctor couldn't figure it all out but said he promised they would not send me home until we got answers. He turns me over to my primary physician and has me admitted. So, I leave the ER and go to a room upstairs. Next morning my primary says it is probabl
  12. Amanda - you are a dream! Always so upbeat. Seeing you post on my topic means I will be smiling after reading it. enjoytheride - There is a difference between "independent living" and "assisted living". I am going into independent living right now because I can pretty much take care of my daily needs without assistance. If I do get sick they will assist me with bathing, etc. There is a registered nurse on duty at all timest!. Can not wait!!!!!
  13. Thank you all so much for the positive feedback. I need to get on here more. You all are a big help when we are down and out and unsure if we are doing the right thing. It will be good knowing all I have to do is push a button I will be wearing and help will come running. I plan to make lots of friends and do plenty to keep me from getting depressed. I will have 3 of my grandchildren close by so that is a big help too. I saw my rheumatologist today and he thought this was a smart thing to do also. Bless every one of you! Hugs!!! Linda
  14. Hi everyone! I hope you are all doing okay and not having too many problems. Bless you all for being here for all who find this site. Last time I think I was trying to get my gastro problems checked out. Well, I did and wasn't the best news. It is no longer just the esophagus but the entire gastro system. After over 15 years scleroderma has raised its head and started progressing. I do consider myself lucky it has taken this long. I am now on some pills that have helped the running to the bathroom. I have bile coming up into my esophagus also but the pills help. I would have been on h
  15. Thanks everyone for the great advice and wonderful hugs. Susie - My boyfriend thought your comment on him so sweet. He is working on getting me a referral and appointment to see a rheumatologist. He has been recommended from another scleroderma patient who has been seeing him for at least ten years. Keeping my fingers crossed. I will keep everyone updated. Linda
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