tngrits

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Everything posted by tngrits

  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. 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
  6. 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
  7. 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
  8. 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
  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. 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
  11. 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
  12. 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
  13. 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!!!!!
  14. 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
  15. :emoticon-bang-head: Well, my appointment was NOT successful. I had made a list of things I wanted to discuss with my internist so I was prepared. I did not get very far at all. First, I mentioned the spleen: He said not to worry about it because it was not enlarged that much! He said my blood pressure was pretty high but attributed that to my agitation. He saw I was about to cry and said, "Don't worry, you are not a walking time bomb. Everything is fine." He said my blood work was okay and not to get all upset about the spleen. He told me to get with the gastro doctor about the diarrhea. Then he was off to write my prescriptions and that was that!!!! I did not get through half my questions. I wanted to ask about a referral to a scleroderma specialist and a referral to an ENT doctor. He gave me no time to ask anything. I cried all the way home. I am so frustrated. All the doctor wanted to talk about was my weight. He didn't even say anything when I mentioned my heavy breathing and wheezing.
  16. 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
  17. Ya'll made me feel better just knowing I am not alone in my frustration with the doctors. The hugs helped too! My boyfriend was so angry he got on the computer and did a lot of investigating. He found us a support group to visit next week. I think I am ready to give it another try. He talked to someone who recommended a rheumatologist she goes to and loves. So maybe there is someone in this town that understands our disease. My hopes are high anyway. I am not a quitter nor a whiner but this disease does push you so far. I have seven beautiful grandchildren I want to play with so I have to get my determination back. Thank you all for helping me. This is the greatest forum. Hugs right back atcha! Linda
  18. It has been a while since I was on here. Seems like it has been one problem after another the past few months. I was in the emergency room last night and was fully expecting surgery for appendicitis. Turns out that was not the problem. My spleen is enlarged and the scleroderma is the culprit for my intestinal woes. I was wondering if anyone else has experienced a problem with the spleen? Really need some help on this one. Thanks.
  19. Shelley, Snowbird, and Amanda - Thank you so much for the help. The emergency room doctor was so nice and listened to me better than any doctor has in quite a while. He was as surprised as I was when it was not appendicitis or kidney problems. He said the enlarged spleen shocked him and he seemed to be very concerned. I have an appointment with my regular internist Tuesday so I am hoping to get some answers. I don't want him to just ignore this or chalk it up to scleroderma without investigating further. Also, I am going to call my health insurance company about seeing a scleroderma specialist. The closest one is in Alabama. The insurance is a HMO so I don't know how much luck I will have but am going to try my best. Hopefully I will get to feeling better and can get on here more often. Reading the posts on here always makes me feel better. Hoping everyone has a good week. Linda
  20. Well, the results are in on my colonoscopy. The doctor called yesterday to tell me no polyps and no cancer. That's the good news. The bad news is the scleroderma is now rearing its ugly head. I was lucky for 15 years to not have much damage except for my esophagus. The doctor said my small bowel has lost its motility and bacteria is building up and that is what is causing the diarrhea. He has put me on a 14 day treatment of an antibiotic called xifaxan. The hope is that the antibiotic will clear up the bacteria and stop the diarrhea for a while. Guess this will be an ongoing problem. I knew deep down this was the problem but still put me in a "woe is me" mood . Okay, enough of that. Give me a day or so and I'll be back to normal (whatever that is)!!!!! Linda
  21. Thank you both for your kind words. I am feeling somewhat better about the situation today. The doctors always said that since things were the same for so long they did not expect for me to get worse. I am learning from others on here that sclero can attack at any point. I have to keep reminding myself how lucky I have been all this time. There are so many people that have not been so lucky. I hope the antibiotic works too! Hugs back to you guys. Linda
  22. Karen - Hi. My Raynaud's is like yours except I have never experienced the ulcers. My fingers stay cracked at the nail and that hurts alot. I've had the Raynaud's 15 years now. It affects my hands and feet. They turn white and then purplish black. My hands stay very red all year but worse in the winter. It is so embarrassing when people notice which happens a lot when I am paying for something. They say "oh my, what is wrong with your hands." Not fun. :temper-tantrum: Oh well, I am just thankful I don't have the ulcers yet. I try to find a bright side to this terrible disease. Gotta go. It's a beautiful day outside except it is freezing! Hope everyone has a good day. Linda
  23. Hi Willow - Two years ago I went to the emergency room for the same thing. I had dehydrated to the point they said my kidneys had stopped working. The paramedics could not even get a blood pressure reading. Every two to three weeks I go through periods of diahrrea. It does not matter what I eat within 15 minutes the diahrrea starts. It is getting worse so I am having a colonoscopy tomorrow morning. Today I get to prep for that - ugh! I am sorry you are having so much trouble. Sounds like your doctor may need to do some tests. I know what you mean about some doctors not knowing much about this disease. They are so specialized now I don't think they get a lot of training in this field unless they are going to be a rheumatologist. I have had a couple of really good doctors and then some rheumatologists that just didn't know very much about it. I now ask upfront if they deal with many scleroderma cases. If not I try someone else. Right now I don't even have one. There are some great doctors out there who do know a lot about scleroderma but you mostly find them in really large cities. Hoping you have a better day. :happy-day: Linda
  24. Hi Willow - I am new to this site also and learning so much!!! It is okay to feel relief that you finally have a diagnosis. I bet everyone here felt the same way. I went to doctors for 2 years trying to find out what was wrong with me. I actually had a doctor tell me there were three things wrong with me: I was a woman; I was over 40; and I was overweight!!!!!!!! Wish I had hit him in the nose :angry: Two months later I went to another rheumatologist who did the ANA test. Turned out I had the CREST form of scleroderma and fibromyalgia. It was such a relief just knowing I wasn't crazy. I hope the plaquenil helps you (I was allergic to it) and your symptoms improve. You have come to the right place. These people are so very nice. Linda
  25. Hi Nina - I have not had the Bravo insert put in but I do have esophagus spasms quite often. My esophagus has been dilated twice. They gave me nitroglycerin tablets to take when it spasms. That works quite well and the spasm is gone within a minute or so. I do hope things get easier and you get the right diagnosis and treatment. Linda