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miocean

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Everything posted by miocean

  1. Thanks for all the ISN does!!! Where would we all be without you!
  2. Gareth update

    Hi Margaret, How is Gareth? I have no clubbing with my lung disease and fibrosis. :emoticon-hug: :emoticon-hug: :emoticon-hug: Hi Gareth!!! :emoticon-hug: :emoticon-hug: :emoticon-hug: miocean
  3. Facial Injectibles

    My dermatologist suggested filling the lines around my mouth. He explained that since they were deep it would be like filing a hole, a little at a time. Since my immune system is weakened by anti-rejection drugs for a kidney transplant, I determined the risk of infection from the injections outweighed the way the lines look. I view them as my battle scars and I am more aware of them than others. And when I smile, they don't show as much so I smile all the time! Here is a link to my initial forum post. miocean
  4. Hi Mando, First of all, your doctors are doing the right thing by testing you for pulmonary arterial hypertension. The latest research shows that any scleroderma patient who presents with shortness of breath should be screened for PAH. The gold standard is a right heart catherization to diagnose so you will more than likely have that procedure. During the right heart catherization they will test the pressure between your heart and your lungs. It if is >25 it is diagnosed as PAH. It was suspected I had PAH four years ago based on my Echo and medication was suggested to treat it. While I was waiting for approval for the drug I received a kidney transplant and my nephrologist didn't want to add any more medications to the anti-rejection ones so I did not take anything. My next Echo did not show high pressures. The Echo a year later did so I had a right heart catherization in the spring and my pressure was 43. I was put on medication and had a left and a right heart catherization in September and my pressure was down to 23 (Yea!). I have a pulmonary hypertension specialist now beacuse, like scleroderma, it is a rare and misunderstood disease. The drugs to treat it are very expensive so good insurance is a must. Interestingly, Viagra and Cialis have been found to help lower the pressures as they are vasodilators. More serious cases are treated intravenously with pumps. Try not to worry (says the Queen Of Worriers) and think positively. You are doing all the right things, looking into the diagnostic tests, finding a doctor that is familiar with PAH, and coming here for support and advice. If you are having lung issues you may want to look into a pulmonary rehabilitation program. It was extremely helpful for me. Please keep us updated on what is going on. And yes, scleroderma does have a way of rearing its ugly head... miocean
  5. Do I have scleroderma?

    Hi Julpal, I understand your worry and hope it will all be for nothing. ANA panels are very confusing and best left to the specialist to interpret. As far as what you can do, start to keep a journal of your symptoms and if you have a visual symptom take a photo of it as the rash, bump, redness, etc. may not be there when you have your appointment. For instance, you might note your hands were swollen one day but then realize you were eating a lot of salt the day before, or your hands might not be swollen the day of your appointment. Take note of skin changes, swelling, pain, gastrointestinal issues, fatigue and anything else out of the ordinary and jot them down. Please keep us updated on your progress and if you have any other questions, just ask! Best wishes, miocean
  6. New Year

    Thank you, Buttons! I was thinking of my sclero friends all over the world as they rang in the New Year... Let's hope it is a good year for everyone. I consider it a good year if I don't end up in the hospital! :D miocean
  7. Xifaxan

    Hi Cordy, I have also been on xiflaxin for the small intestine bacteria overgrowth. I finished a 2 week treatment of 2x's a day and am amazed at how much better I feel. My abdomen is not as bloated and my bowel movements have returned to pretty normal. I feel so much better!!! H pylori is a bacteria in the stomach, mine is in the small intestines. SIBO is healthy bacteria from the colon that moves up to the small intestine where they do not belong and cause diarrhea, gas, bloating and cramping. It is so nice not to spend hours in the bathroom in the morning! I am also able to figure out what foods do bother me as before the issues were not resolved, even with an elimination diet. I have discover my body doesn't handle fruits and vegetables well so I only eat them in small amounts, making sure the vegetables are all cooked. Now, let's have that lump be nothing serious. It is sooo hard but learning to not stress over every little thing really helps. Otherwise we would all be over-stressed all the time!!! miocean
  8. Welcome back Nickisboi! I believe this is a great step for you and an opportunity not to be passed up! Although I do not have morphea I have to be very careful in the sun due to anti-rejection medications causing skin cancer. I still enjoy the beach and the sun, but I am careful. There are hats and clothing that have UPF sun protection that could protect your skin and cover you body. Do a search for hats and clothing with sun protection and you will find a variety of items that might work for you. If you find these are not your style or too expensive, at least invest in the hat and sunglasses. Then go shopping for casual wear and beach clothes that are lightweight and comfortable for you. Even the lifeguards here wear long board shorts that come to about their knees and t-shirts or long sleeve shirts. There are also tops referred to as rash guards that surfers wear here to keep from scratching themselves on their surfboards and keep them from getting sunburned. Many people wear them in the water these days to keep from getting sunburned. I did a search on how to dress for the beach in Egypt but the information I found was for females. It might give you some ideas, though, if you did a search like that. Have a wonderful trip and please tell us all about it! miocean
  9. GI Testing Completed

    Apparently, small intestine bacteria overgrowth (SIBO) is commonly found with autoimmune diseases. The hydrogen breath test is a non-invasive test, it just takes some time. You begin by drinking a solution of water with sugar in it and they take a breath sample by having you breath into a tube with a plastic balloon on it. You do this every 15 minutes for about 4 hours. Each breath sample is analyzed. The treatment is an antibiotic, the one I went on is xiflaxin. It is very expensive and often not covered by insurance but I have read about other antibiotics being used. I am now on my last of the 14 days of antibiotic. I have to say I have not had extreme abdominal pain as per usual, my bowel movements are more regular, and the bloating in my belly has gone down.The only negative side effect I am having is fatigue. There have been days when I have needed a 3-5 hour nap which is not usual for me. I don't know what happens if it returns. There is a diet to follow called the FODMAP diet, usually suggested for irritable bowel syndrome. It is basically an elimination diet to promote a healthy gut. miocean
  10. Large growth in Bowel

    Oh Buttons, that is such good news that the tumor was benign! I hope your recovery goes well and that things ease up with time. miocean
  11. Anti-RNA Polymerase 1/111

    Margaret, That must have been some scare for all of you! I am glad he is back home and hope is is doing better. I feel so badly for his inability to communicate...all of us know we can come here to express our trials and frustrations and poor Gareth hasn't that outlet. Can you tell when Gareth is experiencing fear? I know the trauma I have suffered over the years through hospitals, drugs, and tests and how hard it is for me to even walk into a medical facility because of the memories it brings back up but at least I can say I am scared, or that I don't like this but know I have to go through it. I also have relaxation techniques I can use. He is quite the trooper to go through all of this. Here's hoping to better results the next time. And :emoticon-hug: :emoticon-hug: :emoticon-hug: Hi Gareth!!! :emoticon-hug: :emoticon-hug: :emoticon-hug: miocean
  12. Large growth in Bowel

    Dear Buttons, We will all be pulling for you as you go through your surgery and recovery. I totally understand how hard it is to stay positive sometimes, but I also know you are one of us who get down but pick themselves up and go on. Please keep us posted on your progress. It really is amazing what they can do today, isn't it? Keep in mind that the doctors have to give you the worse case scenario but it doesn't always end up that way. You made me laugh when you said you've lost weight You're right, not exactly the way to do it but you showed your spirit coming through by maintaining your sense of humor through it all. Good luck next week... Some magic wishes miocean
  13. Domperidone

    Oh my goodness, Jeannie, it is so good to see you post! I have wondered what you have been up to and how you are doing. I see my GI doctor next week and will be interested in hearing what she has to say about my reflux, slow motility in my esophagus and small intestine bacteria overgrowth. miocean
  14. Coping with disability

    Kamlesh, I have no answer for the neuropathy pain. I have a friend who suffers from it terribly and has tried everything to no avail. She was always very active and now has trouble walking and is very depressed as a result. On top of that you are dealing with the loneliness of not having the social network at your job. I can relate to that. I had put all my identity into my career so I lost a part of myself. Instead of a highly respected professional I became the sick person (in my mind.) It took time to move beyond that and realize I was more than just my job. My close friends and I still get together a few times a year but it is not like the interplay you get day to day. They are busy with their jobs and their families and it is hard to find time. Since they don't see me every day they don't think of calling. It is hard to get involved in new social settings, especially when you are not feeling well. I have found online activities, like this forum and another I use, as well as social networks help me maintain a friendship relationship with others. It is very lonely sometimes even with a husband to do things with. I miss my girlfriends and sometimes don't understand why they don't return calls or contact me. It seems when social situations do take place they all happen at once! I do go to a counselor which helps me work things out. I try to reach out to new situations but even then it is hard to make new friends. It has been 9 years for me and I have sort of adjusted to it. I am glad you got your disability approved and hope you find some ways to fill your time. miocean
  15. Embarrassing / Bowel Issues

    Oh, Peggy, I am so sorry to hear this. I know how you feel for this is the final loss of dignity to me. Although I haven't had what you experienced to the extreme you just did I recently have had episodes of going in my pants or on the sheets, usually just a small amount, and not being aware I was going. The other morning I was standing at the bathroom sink after just having used the toilet when I realized I was going again. Fortunately I could just plop myself down and clean myself up. I had a horrible experience at an airport once when I lost control right before boarding a plane. There are many times in the past I didn't make it to the bathroom. I also have had incidents of sitting on the toilet and noticing a small piece of stool a couple of feet away. How in the world did it get there? I have lost motility in my lower esophagus, my stomach is okay right now. I have found I have to watch carefully what and how much I eat and when I eat it. My husband has never changed a diaper (and neither have I!) so I hope I never move to that stage. I think the role of caregiver is so unvalued. People are always asking my husband how I am doing but none asks how he is doing. He is having a very difficult time right now with me going through all the testing and appointments for the lung transplant. I would suggest you keep an emergency bag with you containing another set of panties and pants, wipes and paper towels, plastic bag to discard dirty things in, and anything else you think you need. If wearing a diaper would give you more ability to go out and about, do it. I had to wear one after my kidney transplant because I was bleeding so much from the wound. Sometimes we all go into those dark places. Scleroderma does change our lives. I hope what others have to say can help you physically and emotionally. Talk to your husband about your emotions over what is going on and your concern for him and try and work out some strategies. :emoticon-hug: :emoticon-hug: :emoticon-hug: miocean
  16. Correlation between celiac and Sclero

    I look great, too! I look better than I have in years. Since I am not the depressive soul I was on dialysis I dress better, and after not wearing makeup for years because I can't see without my glasses and my hands could't hold the brushes I have discovered eye makeup sticks I can get on. Since I have recently lost weight my clothes fit better. I have long, beautiful fingernails, as for some reason my nails have become harder. I can take showers now and wash my hair whenever I want, which I couldn't for years due to a catheter in my chest so it looks great! I look better than a lot of people my age. Little would you know the entire inside of my body is slowly being destroyed. The thing about the SIBO, if you have it, what do you do? I have heard the round of antibiotics sometimes don't help. My doctor told me it make not make any difference with the diarrhea. So you can add another thing to the list of diagnosis but can it be fixed? I'll let you know what I find out in a couple of weeks. How is Katahdin, Marsha? Does it have snow on top? I love that mountain... miocean
  17. Calcinosis from scleroderma

    Jess, I think it is wonderful that you are going to start a support group for young people! You will have to keep us posted on how it goes. Thanks for the advice on the calcinosis. I have it really badly on my buttocks. It hurts to sit. They are increasing in size and area but have never opened or leaked.The scleroderma specialist tells me I can have them surgically removed but they cover a very large area. My immune system is suppressed due to a kidney transplant so I am concerned about infection and healing and put up with the discomfort. I feel like I sit on rocks and now at the end of the day when I lie in bad they even hurt from all the pressure throughout the day. Based on your experience I think I am wise to wait until they break open. miocean
  18. Correlation between celiac and Sclero

    People just love to give advice, as much as we want or don't want it! First, let me say that people, even doctors, are always telling me to do or don't do something that because I have scleroderma or the kidney transplant doesn't work for me. :emoticon-dont-know: To your topic, Marsha: All of this has come about due to testing for a lung transplant but I have found out my esophagus is not working, that I have reflux, it is dilated, that after fasting for 12 hours it is still half full, that I have a huge hiatal hernia, and the latest is that I have SIBO (small intestine bacteria overgrowth.) I followed a total elimination diet (no gluten,no dairy, no soy, etc.) from June until September with no relief of symptoms, actually an increase. I was eating very healthy, whole foods but still having up to 20 bowel movements a day. After 21 days when I introduced a food I really didn't notice a difference. I wrote down everything I ate and my symptoms until I got tired of tracking how many times I had been to the bathroom. I've been eating gluten, but not as many salads and fruits as summer has come to an end and strangely I am doing better. I recently had a Hydrogen Breath Test showing the overgrowth of bacteria in my small intestine. The diet for SIBO is very similar to the elimination diet but eliminates even more things like all the fruits and raw vegetables I was eating from June until Sept. Hmmm. My doctor wants me to take an antibiotic for it but we are on hold right now. I don't know what the answer is. The gold standard for diagnosing celiac disease is biopsy during endoscopy, which I will be having in the next few weeks. The blood work test is not always accurate. All I know is scleroderma has wreaked havoc with my body. I'm tired. Tired of all the testing. Tired of all the doctor appointments. Tired of there always being something new that's wrong. Tired of medications. Tired of getting better and getting worse. I'm also happy. Happy I am still here today to write this, happy that I had a kidney transplant and am no longer on dialysis, happy that I can use my hands again, happy that there is oxygen that helps me breathe, happy that I can still do things I love to do, happy for all of you here who support each other so well. I wish I had the answers. I wish that somebody did. Don't we all? miocean
  19. Xifaxan

    Ha! Are you ready for this..? My hydrogen breath test came back positive for bacteria and the doctor wants to use xifaxan! Like you, it would not be covered by my insurance and she quoted $1,500 for two weeks. She is going to try and get free samples for me...perhaps your doctor can do the same. We'll see how this all plays out. miocean
  20. Xifaxan

    Hello Cordy, I am sorry you are having these issues with both you intestinal tract and insurance coverage. Those with known health issues are often not diagnosed correctly because it is "assumed" the known disease is causing the symptoms. It concerns me you said your doctor "assumed." The data on the medicine says to tell your doctor of any side effects (diarrhea) and tell her of the insurance issues. It also says not to stop it without telling your doctor. Can you ask her if there are any tests to confirm the diagnosis that are covered by your insurance? I suffer from GI issues and have for most of my life. They have worsened in the past ten years and it has been "assumed" they are from scleroderma. Tests are always normal. They have been worse the past few years and it has been "assumed" they are compounded by anti-rejection medications for a kidney. I just had a hydrogen breath test to test for overgrowth of bacteria in my small intestine. Here is a post to others going through the same issues where there are more details. I don't know the results of my breath test yet. I don't know if it will yield any answers. One of the things I have learned and this forum has helped with is to learn to ask the right questions. Ask your doctor some questions. If you aren't satisfied, can you seek a second opinion? Keep us posted, miocean
  21. New symptoms

    Hi Marsha, I sadly welcome you to the Bathrooms Are Our Best Friends Club! :( I have suffered from bowel issues for 40 years now. The first diagnosis was anxiety related GI disorder. When I have panic attacks they go to my intestines, then I have to immediately go to the bathroom, but there may not be a bathroom, then I panic more and then the cycle continues. 20 years ago I started seeing a gastroenterologist. I had blood tests, stool tests, medicine, fiber supplements, gastric emptying study, endoscopy, colonoscopies and really no relief. I was diagnosed with Irritable Bowel Syndrome. I do have damage to my esophagus and some benign polyps in my colon. I accepted it as part of my life, endured being tied to the bathroom in the morning, and sometimes embarrassment. With the diagnosis of scleroderma I accepted it as part of that. With the addition of medicine that causes diarrhea I accepted it as part of that. When I urinated, there would be a piece of stool in the toilet that I was unaware of passing. Sometimes I would find a small piece of stool a foot or more away from the toilet (how did it get there?) I started seeing a Functional Medicine doctor in May and begin an elimination diet to see what foods bother me. Although I felt better, the constant bowel movements never ended. They actually became worse. Most mornings I would have 7 bowel movements in the first hour I was awake, and continue throughout the day. I was eating healthier food, fresh, organic vegetables, keeping a food diary, eliminating gluten, dairy, soy, corn, and not really noticing any difference when I reintroduced them because I never really had improvement with my bowel issues when I didn't eat them. I do feel better and have lost 15 lbs. but wasn't getting a solution to my constant GI distress. One weekend I decided to eat whatever I wanted. No salads, no veggies, no fruits, and oddly, I did better. So I discovered MY body can't handle all the raw vegetables. Then I noticed that when I travel I do better. When I travel I always used bottled water and although I started drinking bottled water years ago at home I used tap water for tea and cooking. I started using bottled water for everything this week and there was a big improvement in 3 days!! I just had another gastric emptying study but do not know the results yet and due to the lung transplant evaluation had to see a new GI doctor for a 24 hour PH monitoring test. The new doctor specializes in celiac disease and women's digestive disorders and was assigned to me via the transplant center. She asked me a lot of questions and started talking about scleroderma with a great deal of knowledge. I asked her how she knew so much about it and she said before she decided to be a gastroenterologist she was very interested in rheumatology and wrote a paper on collagen vascular diseases effects on the GI system. I think I may have found a new GI doctor! She asked if I had ever had a breath test. I shook my head no and she explained that there can be an overgrowth of bacteria in the small intestine that can cause my issues so next week I am having a hydrogen breath test done. She is also investigating the PH monitoring study I need done for the transplant center to make sure she does it the way they want it. This is done via endoscopy, and she will do a biopsy for celiac disease at the same time. Then I will have the colonoscopy and perhaps a better management of my issues can occur. This long rambling has a purpose (why is it I can never write short posts?) First, seek medical help with your issues via your current doctors and a gastroenterologist who knows something about scleroderma. Second, it might help to keep a journal of what you eat and how it affects your system. If you are eating a lot of fresh fruit and vegetables, try eliminating them for a couple of days as they can be hard for some people to digest. The elimination thing is all hit or miss experimenting and it may take a while for it to sink in that something like too much of one food is a problem. I am sorry to hear about the Sjogrens on top of everything else. Was the diagnosis done via blood tests or symptoms? All the diarrhea can dehydrate you and make you thirsty as well. Keep very hydrated. You know the drill with the Raynaud's, keep your core warm and have gloves everywhere. I really feel for you having to go through all of this. Hang in there, miocean
  22. Excellent, Amanda! As I tell others, "we're special." Thanks for the insights and please continue to blog. I always look forward to the bloggers. miocean
  23. Yesterday I visited a second center for evaluation for a lung transplant. Imagine this: They ran on schedule!! :emoticons-line-dance: I spent over an hour with the nurse coordinator going over my medical history. I was able to pull out the tests and labs that hadn't already been forwarded to her thanks to my handy-dandy binder system. She felt that even with the complications of the kidney transplant, scleroderma, pulmonary hypertension, and the damage to my esophagus the transplant doctor would still want to talk with me. The doctor spent a good amount of time with my husband and me and started by saying he wasn't going to tell me too much about transplant because I knew all about one from my kidney. He focused on the health issues that I am currently experiencing and what to do to figure out what exactly is going on and how to correct them, if possible. His feeling is that whether I am transplanted or not, there may be things that can be done to increase the quality of my life. He expressed concern that the anti-rejection drugs for the lung could be toxic to my kidney but is planning on calling my nephrologist to discuss it. My BMI is also too high for them (it was fine for the first center but all have different criteria). They drew 20 vials of blood for the most extensive labs I have ever had. I will then be scheduled for all kinds of tests including and right and left heart catherization, endoscopy, colonoscopy, stress test, exercise echo, further testing on my esophagus, another CT scan because the one I had recently didn't have enough images (?), meetings with a psychologist, social worker, neurologist, etc. He is also getting me a Pulmonary Hypertension Specialist, which I needed anyway. There are a few reports from doctors and my dentist that I need to have faxed to them. After all of this, a team will determine treatment options and if I am a candidate. All be done in the next couple of months so it will be busy. Wow! Can you imagine my amazement! Instead of blowing me off as not a candidate he seemed to be genuinely concerned about giving me the best possible outcome. And...everything will be done at the same center. All of my doctors in the same place! Am I dreaming?!? My first impression was extremely positive but I am yet to pass judgement since I am the one that everything seems to get mixed up and frustrating for. At the least, I am getting more than there's nothing we can do, I'm sorry, get a wedge pillow... I'll keep you posted. miocean
  24. Lung Transplant Evaluation Take 2

    :bye: Hi all, I want to update you on everything that has happened to date: :bye: I have had heart and lung testing at the center and so far I have only minor issues other than the fibrosis and pulmonary hypertension. My heart is good, I have no blockages. The left side of my heart is slightly enlarged, probably due to the years on dialysis and I have some minor stenosis. The pressure between my heart and my lungs is back in the normal range, probably due to the medication I started for pulmonary hypertension. I am to continue with oxygen as needed, pulmonary rehab, and the medication. I am about to start the GI testing with a gastric emptying study tomorrow, next week I am meeting with a new gastroenterologist for a 24 hour PH esophagus monitoring test and will be scheduling an endoscopy and colonoscopy at the center in the near future. I also have an appointment with my cardiologist but the center has said my tests show only minor issues. My scleroderma specialist and nephrologist concur. Although the GI testing is not that pleasant I am actually looking forward to them as I feel I may finally get answers to things that have been problems for years. The GI doctor I have been going to for 20 years with no resolution of my issues does not do the PH esophagus monitoring test so I have an appointment with a new doctor who just happens to specialize in Celiac disease and women's digestive issues. Could be a better fit for me and maybe some issues will be resolve. Pulmonary rehabilitation is going well. I like the group I'm in and am learning things that are aiding me in increasing my activity level. In 8 sessions I have already increased my endurance and strength, although no great athlete by any means. Baby steps. I took a break with a great trip to Niagara Falls (see I am happy today because... in the Fun and Friendship Forum but there are no medically free days for me right now. :VeryHappy: I saw my scleroderma specialist and she told me that even if the center qualifies me for a transplant I am not sick enough to get one. Odd how you have to be sick enough and healthy enough at the same time... Off to pulmonary rehab and the dentist, I'll keep you posted. miocean
  25. I'm happy today because....

    I am happy today :D because I just came back fro a "dream trip!" I have always wanted to go to Niagara Falls, Canada and finally did. They are the highest falls on the east coast of the U.S (the second highest, the Passaic Falls, are actually nearby me and I have never seen them!) My husband couldn't understand why I wanted to go there but agreed to go and had a great time! It was a 1,500 mile car trip and 5 days of traveling, sightseeing and walking but I was able to do everything I wished to do, even with the oxygen. The portable oxygen converter I have now worked so well, it charges in the car and I bought a special backpack for it to make it easier to walk around. We had a beautiful room and saw sunrises and moonrises over the falls, rainbows in the mists, and were granted fantastic weather. Going into the falls on the Maid of the Mist and going beneath the falls into the tunnels are experiences I will always keep with me. The falls are awesome, so powerful. And you know how much I love water. :P :happy-day: miocean
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