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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 one month add another med (don't remember the name). He thinks it will take all three to get me below stage 4. As bad as the side effects are I feel so blessed I have finally moved somewhere where the doctors understand about scleroderma and especially pulmonary hypertension. Linda
  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 awful in a day's time. They have to watch my blood pressure, oxygen level, and coumadin level all the time. I can now walk to the kitchen without feeling like I am going to faint. I still use a wheel chair or walker when going out and can't stay away but a few hours. I'm usually give out the next day and stay in bed. Dealing with what is now a terminal illness is very hard mentally but I think I am handling it okay. My son surprised me and flew in from Houston for a few days. Last weekend my dad and two sisters flew in too. That was a shocker because my dad don't go anywhere. He owns a restaurant and grows acres of watermelons in the summer--and is 81 years old--so he is very busy. I enjoyed seeing him so much. It is hard knowing I may never see them again. But none of us knows when it is our time so I'm soaking in all the little things I love so and feel blessed for each day. I will try to get on more and post on others posts as much as I can. Linda
  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 detail about all of this--it helps. Take care of yourself but every day notice all the little things in life that mean so much more now. Linda
  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 scared about the process and side effects. Right now I am learning to take one day at a time and enjoy as much as I can laying in this bed--lol. tngrits
  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 on me while in there and he said they did not help. So now it is up to the pulmonologist to see if he can come up with anything. I can barely walk across the floor and was feeling fine 6 months ago. Does anyone have suggestions for meds that could possibly help. My insurance would never cover it plus I just really don't see any reason to try transplant surgery. I will take the time I'm given on this earth and try to enjoy--even if I have to do it from a wheelchair. I am also having more trouble with my esophagus so looking for them to dilate it Thursday. Busy week! Love to all my fellow sclero friends, Linda (tngrits)
  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 probably "asthma" which I have never had in my life. Oh, forgot--my oxygen saturation level was below 90 and at times 85 or so and my blood pressure was very erratic. They gave me some breathing treatments which helped but did poorly on getting my gastro meds to me on time so I ended up with severe diarrhea. They sent me home in this condition! He did send me home with a z-pak type antibiotic and prednisone pak. Well, this morning I still could barely walk across the floor at all and had this overwhelming feeling I wasn't doing well at all. Kept feeling like I was barely breathing. My daughter had arrived Thursday night so she was trying to get to the bottom of it all. My primary had refused to put her on speaker phone to hear his decisions, etc. So this morning she called my rheumatologist's office and talked to the doctor on call. He was very nice to her and knew immediately she has some kind of nursing skills. She had been in nursing school a couple of years before her husband passed away. Anyway, he agreed with her I needed a CT scan of the lungs and probably a brain scan and heart cath. He said to go to the hospital where they do most of their work and maybe they would at least do the CT of the lung and if admitted he would come see me. We went and they checked me out really well. They talked to the rheumatologist and did the CT of the lungs. Decided against doing the brain because he said that would be a lot of radiation at one time. I'd had a heart cath last year so he let that go for now and said to follow up on that. The lungs were clear--no pulmonary problems. YES!!!! They did find a small aneurysm in the artery leading to a kidney but said it was very small but will have to keep checking it. He said my primary was closer than I thought. He said I probably caught a virus on my trip to Virginia. He said it would be just the right amount of days for it to show up. Hit me harder because of the sclero, etc. So he listed it as bronchitis--says I had not taken the prednisone long enough to see a major difference yet. He got the report from the other hospital stay and said Thursday night I was in a lot of distress. Thank goodness I made it through everything and am feeling better tonight. Now to explain why I went to another hospital when I see my primary Wednesday---oops! Important thing is I am feeling better. Hope to answer my email tomorrow or the next day so don't give up on me. tngrits
  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 here sooner but had a big fight with my bathtub and the bathtub won (of course). By the time I stopped falling I was on my tummy and my right shoulder was still on top of the tub. Big Ouch!!!! I laid there for an hour and a half waiting for someone to come. Finally a friend called and figured out something had to be wrong. I have now gone through two surgeries for my shoulder. It dislocated and a bone broke into a lot of tiny pieces. It has been five weeks and he said I may be half through on wearing the brace. It still has not attached itself so having to be very careful. I have been losing my balance a lot and falling so I have made a major decision in my life. I am only 56 but have no family here and the sitting in the tub that long really scared me. I just got back from Virginia and have decided to move there. My daughter is also moving there with her family so we'll be close. I am just old enough to go into an independent living facility. It is not what I thought I would be doing at this time in my life but gonna enjoy as much as possible. It is a very nice place and they take of daily chores. There are so many things to do there and places to see. My apartment will have two bedrooms so that is nice. I have worked very hard all my life and even when married had everything to do myself cause my husband worked away from home half the time. It is time for me to get rid of all the stress and try to get myself in better physical condition. So, if anyone knows some good doctors in east VA please email me. Hope everyone has a wonderful Fourth of July also. Linda
  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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