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Everything posted by miocean

  1. Hi Margaret, Thanks for the update on Gareth. I am sorry he is going through so much. It's good to hear from you, I just wish it was better news. miocean
  2. If you have previous studies like a colonoscopy or endoscopy it would be helpful to have a copy of the reports for the doctor. If not, he most likely will want to do these because they are the typical diagnostic tests performed by GI doctors. Other GI tests I've had were a Barium Swallow to see how my esophagus is working, a 24 hour PH Test with Manometry to see when I have reflux and whether it is alkaline or acidic, and a Hydrogen Breath Test to see if I have an overgrowth of bacteria in my small intestine. Some of these tests I had as part of a screening for a lung transplant. I found a new GI doctor this past year when I needed the 24 hour PH Test and she happens to know a lot about scleroderma as she almost went into rheumatology before deciding on gastroenterology. She is the one who suggested the Hydrogen Breath test and I did test positive of the overgrowth which wias treated with antibiotics. Since this doctor is new to you make sure you feel comfortable with him before agreeing to any of the invasive tests. Most doctors are not nutritionists and the questions you ask about diet he might not be able to answer to your satisfaction. You might want to see if you have coverage to see a nutritionist to help with dietary issues. I hope this helps and good luck! I hope you find a good doctor on the first try. miocean
  3. Well, I may need to rethink this travel insurance thing and see if I have enough. The place in Mexico we visit was hit with a Category 3 hurricane and the airport was destroyed. Total devastation, no water, power, phones for weeks. The military airlifted tourists out but it took days. I'm not sure if no matter what policy you took out would help in a crisis like this... We are scheduled to go in a few months, still waiting to hear if where we are staying will be ready. After going through Superstorm Sandy here two years ago I know that it takes a long time. Usually the tourist areas get up and running fast though. The airport just reopened on a limited basis. We are not going for several months so will have to wait and see. miocean
  4. I was told not to watch the movie "For Hope" as it is depressing and a worse case scenario. I have already started writing my obituary and know what songs I want played! (Dream on ~ Aerosmith, The Circle Game ~ Joni Mitchell, See You On The Other Side ~ Ozzie Osbourne) I am actually favoring a party while I am still here to be at it rather that a celebration after I am gone. We have wills, power of attorneys and living wills drawn up. I am working on a Letter Of Intention for my personal items. I want to be cremated and am thinking about a natural burial, right now favoring the idea of being part of a reef in the ocean. It is much better to be organized than leave the ones who are grieving with a mess to figure out. It is hard and I can't say I don't get emotional doing it. My mother had all her wishes written down including the shoes she wanted to have on (It was very important to her to have shoes on for some reason.) This made it very easy for my sister and I. We don't have children which in one way makes it easier and in another makes it harder. I often wonder why I spent my life accumulating things only to end up trying to figure out how to get rid of them! Even with the best of plans I have seen families fall apart over money and things after someone dies. I think about death a lot, not obsessively, but realistically. To me, it is a process, not an ending. miocean
  5. Ten years ago I was in a coma after coding blue twice. I had just been diagnosed with scleroderma and was in the hospital for a CT scan when I stopped breathing, my heart stopped and my kidneys failed. What a long, strange trip it's been... Thank you all for being here for me. miocean
  6. Shelley, you are oh so wise! Mike, over the years I have felt like you do. I'd tell my husband how lucky I am to have him and he would tell me how lucky he is to have me. This was during the worst part of my disease, when I was sitting in a dialysis chair 3 times a week and being pretty much of a slug the rest of the time. I really couldn't understand how I contributed anything. He is what kept me going. The transplant process is an interesting and difficult one. I received a kidney transplant after 5 years and have been able to enjoy life again. My lungs are like yours now only my DCLO is 25%. I use oxygen for exertion. I have been turned down at 2 centers for lungs because of damage to my esophagus. There is one more center I will apply to that does high risk transplants after I take a little medical break. The testing is extensive and stressful. I did not qualify for the stem cell study because of the kidney transplant. I know all about anxiety, I suffered from it my entire life. The things that have helped me besides medications are therapy, meditation, emotional freedom tapping and doing things I love. Mindlessly meditation on the movement of the sea, spending time with friends, and creating art again. I travel as much as I can because it brings me joy. I wish you the best! miocean
  7. Hi Nana, Good dental care is very important to maintain your teeth. Practice daily hygiene and see your dentist regularly for cleanings. Try to help him/her learn about scleroderma and the changes to the mouth so if your disease progresses and your mouth becomes smaller your will still have good dental care. Keep copies of every lab and test you have in an organized method that works for you. Don't rely on your records being passed from doctor to doctor. Bring them with you to each visit. Learn to adapt as needed. You may find you are not able to do everything you once did but with adjustments you can still do a lot. For instance, sitting down to chop vegetables for dinner instead of standing can help you not get as tired. Don't be afraid to ask for help. This is still a hard one for me. Let others know when you need help doing things. It's ok to say no. If you are too tired and can't manage something let them know that is not that you don't want to do it but you can't. Plan downtime before and after periods of a lot of activity. Work this into your schedule. Try not to push yourself to the point of not being able to do something you really need or want to. ( I need to work on this one. ) Try to exercise, even simple stretches. The better shape you are in the better you will be able to deal with things and it helps with stress. Learn as much as you can about your disease but don't get overly consumed and become your disease. Develop a good support network. Family and friends should understand a little about what you are going through. You may find that some people can't handle it and that may disappoint you but try to understand it is them and not you. Keep a positive attitude. It's okay to get down but if you find things overwhelming it is helpful to find a good therapist to get you through the rough spots. These little things have helped me and I still need to work on them. I hope your disease remains stable. miocean
  8. miocean


    Congratulations, Buttons! miocean
  9. Hi Sharon, I hope you get your referral to the doctors in Houston quickly as they have a great reputation. There might be another reason why your joints are aching, like arthritis, and they can help to diagnose that. We all know how confusing it all is and hope you get answers. I have been fortunate in that I have not had too many aches and pains but I go for weekly massages and see a chiropractor weekly. This was a practice I started before scleroderma and continue with 10 years later. I am fortunate that both my massage therapist and my chiropractor are sensitive to my body and are very gentle with me. I really feel a difference if I miss a session. My hands were the biggest problem when my skin was very tight. I went to Occupational Therapy and had hot paraffin wax dips and they felt wonderful. After about 5 years my skin began to soften and is now back to normal. I was a 45 on the Rodnan Scale and am now a 0. The skin can begin to soften after a period of time. miocean
  10. This is such a great idea! I have already purchased a couple of things. I also emailed this link with information about the website to my friends in hopes that they will shop Amazon this way. I suggest this link is posted frequently, or that people respond to it every time they use it so that it moves up in the forum. I know I do a lot of shopping online as it is sometimes difficult for me to get out. Happy shopping and helping scleroderma. miocean
  11. Hello Obxbound, I am sure you are getting nervous as you are getting closer to your appointment on the 26th and I am hoping all goes well. I am not a doctor and cannot diagnose but your symptoms sound familiar to me although I am ANA positive. I am curious to hear how things go so please let us know. Good luck! miocean
  12. Hello CrankyGoat, It does sound like you are living the good life and I want to reassure you that it can continue even with your wife's diagnosis. You will have to change and adapt a little but with your support, your wife's winning attitude, current physical fitness, and the strides that have been made in treating scleroderma you can still travel. For you, a little background on me. I was a recreational runner, doing 3 miles before going to a very active job as an art teacher and an occasional 5k. I swam a mile in my beautiful Atlantic ocean every day in the summer. My husband and I wilderness camped in the North Woods of Maine and did some mountain climbing. Then BOOM scleroderma: sudden onset with renal failure. Suddenly I was on soul sucking dialysis 3 times a week, I had to retire on disability, I could no longer hold a paint brush, could barely write my name. Even on dialysis I traveled by air within the United States. My center set up dialysis at a center where I was going. I arranged for wheelchair assistance at the airport and that is something I would definitely recommend. I did feel a little foolish at first because to look at me there wasn't anything visibly wrong but there was no way I could walk the distance to the gates in our large airports. I didn't travel out of the country because insurance did not cover dialysis there. I received a kidney transplant after 5 1/2 years and back I went to international traveling as we love Mexico. I now have pulmonary hypertension and use oxygen on exertion. I have a high tech portable oxygen converter that is FAA approved. It also has a car charger. I bought the backpack for it which is heavy but makes everything easier. We go to Mexico for a few weeks every year and always get travel insurance. I get the one throughout the airline although there are other policies that give more extensive coverage that you can look into online. We go to an area with hospitals and good medical care and I don't do high risk activities so the basic one works for me. I did have to use it once as I got an infection before the trip and wasn't able to go because of twice daily infusions. After filling out a form, everything was taken care of for the flight. We have done many long distance road trips. I did need to use the oxygen all the time when we were in a high altitude area at the Grand Canyon. You will find you learn wayyyy more than you want to about things. For instance, your wife's pulmonary function tests and a 6 minute walk test will give you an idea of her lung function and whether she needs oxygen. I hope you have a scleroderma specialist and the sooner the better. Here is a link to the U.S. ones. If there are none in Canada it would be worth the trip to one in California. Make sure you keep a copy of every lab, test, scans, and doctor's notes if you can get them. I think that is enough for now. There are so many people here to help you and support you. My husband has been incredible, as I know you will be. As he says, he "chops, shops and mops." He has also never complained about how his life has changed. It's not easy being the caregiver. Your wife has a lot going for her. She is going into this in great physical condition and she has you. Yes, things will change. I can no longer swim a mile in the ocean but on a calm day I can go in. I can't run but I can walk. I am grateful for the things I can do. And my attitude is do it while you can because you never know when you can't. And that doesn't apply just to people with scleroderma, everyone should have that attitude. Please message me if your wife wants more information or has questions. Best wishes to you both! miocean
  13. Hi Georgia, I have diffuse scleroderma with Interstial Lung Disease and Pulmonary Hypertension as well. I also have a kidney transplant, esophageal dismotility, GI issues and have been seeking a lung transplant but was turned down at two centers due to how complicated my disease is. I sleep elevated and try not to eat 3-4 hours before bedtime. I use oxygen for exertion. Years ago they tried cyclophosphamide to stop the progression of the lung fibrosis but I had a toxic reaction to it and it was stopped. I take about 25-30 pills a day. I hope you are seeing a scleroderma specialist and a pulmonary hypertension specialist. My PH is managed with oral medication right now. The gold standard for diagnosis is a right heart catherization. Have you had one? Do you know what your pressure was? Mine was 45 but is now 23 with the medication, which is normal. A 6 Minute Walk Test and Pulmonary Function Tests should also be done and if you are dropping below 87% on the walk test you should be using supplemental oxygen. We all have our down moments and the best thing I can recommend for that is to find a good therapist. An objective viewpoint can help you deal with both the disease and your family. Perhaps your husband will even be willing to go to a session or two with you. There were times I have wanted to give up, too, but then I think of how hard it would be on my husband without me. I am sure you think of the same things about your family. I try not to let my illness stop me. Even on dialysis I traveled. Since my kidney transplant I go even more places for longer periods of time. I have a portable oxygen converter that charges in the car and is approved for air travel. I use wheelchair assistance at airports. I go to the beach every day and when the ocean is calm I can even go in it. We try to go on as many trips as we can. The next two months we have week long car trips planned and early next year we will be going out of the country for a month. My nephew is diabetic and just went through surgeries on his feet to prevent amputation. He went to a theme park and rented a scooter so he could do everything he wanted to. I know the thought of using assisted devices like a scooter, wheelchair and oxygen are not appealing but if it means continue to have the kind of life you and your family want it is well worth the stares you get. Another thing I do is plan downtime. I know that I will need time to rest after a couple of days of activity and work it into my trips and for when I return. I also need it if I have a couple of busy family days. Try to explain to your family that there will be times when you need to regroup. It may mean sleeping all day or just laying on the couch reading a book. Granted, I don't have children so this is easier for me. My husband also does most of the housework and cooking so that is a big help. I worry about how all this affects him as well. This group is extremely supportive and is where I come when I have my down moments. Everyone understands because they have been there. Please keep posting and let us know how you are doing. Sending you healing thoughts, miocean
  14. Besides the obvious gains of knowing wayyyyy more about chronic illness than I ever cared to, knowing how to keep organized medical records and to advocate for myself, and the things the Amanda and Jo mentioned, I have gained understanding of the following:: Acceptance: my life is not what I pictured it to be but I try to make it the best it can be. I am more aware of what others may be going through. No one's life is perfect. Adjustment: I can't do everything I'd like to do but I do what I can. If I push myself to do a lot at once, I also have to plan for down time. Gratefulness: Although I grieve for things I've lost, I am very grateful that I once had them and am grateful for the things I have and can do now. Kindness to myself: When I find myself aggravated or mad at myself because I can't do something or I've received a negative report I ask myself if this is the way I would treat someone in a similar situation. Usually I would be much kinder to another person and then try to nurture myself the way I would them. The reality of change: the ten years since diagnosis have been a roller coaster of ups and downs. I know now I will have good days and bad days, periods of feeling really good and then not. The only thing certain in life is change. Learning what is important: before scleroderma I put most of my emphasis on my career. When that was taken away I suffered an identity crisis. I learned it is who you are, not what you do, that is what is really important. Life is precious: every moment is a gift. Some are better than others. One never knows when a life will end, whether our own or someone we love. Treasure the moments and the people in life. Forgive yourself and others. I'm not perfect and I have my really bad moments but I think I have become a better person in ways that really matter. miocean
  15. Fortunately, or unfortunately, going through the kidney transplant process gave me a great awareness of the ups and downs of transplantation. I had 8 living donors, each time one volunteered I got my hopes up, each one was turned down for one reason or another. One was so promising I went 1,000 miles away for 10 days of testing and was accepted only to have the donor turned down. I received several calls for a kidney before the one that was right for me came along. The man who sat in my dialysis chair on the shift before me died from a heart attack a couple of days after his transplant, he never left the hospital. Another person I know went into rejection right after transplant and then had to wait a few more years for another. There are definitely risks. I know lungs are even more difficult and scarce and how precious organs are. Although disappointed that I was not accepted I am in full agreement that a person that has a good chance to maintain the organ should receive it over someone who is a high risk to lose it. Rejection is just hard to handle. It reminds me of applying to colleges and being turned down by the first choice. However, I ended up at the school that was right for me. It reminds me of submitting work for art shows only to be turned away. But then, there were art shows I got into and sold work or won awards. It's not like I've been thinking, "oh goodie, goodie, I get to have a lung transplant." :emoticons-line-dance: It actually scares me even more than the kidney transplant did and I was pretty afraid of that. I know how much better I feel now though and how much better my quality of life is. I am very fortunate to have the life I have now. miocean
  16. This brings up the question treatment versus no treatment. Although it will be difficult my husband is willing to pursue evaluation at the center that does high risk scleroderma patients even thought is a long trip there.. I am going to give it a rest for a little while and then find out if they would consider me. I have all the tests to forward to them if they will. Shelley, the coordinator told me the doctor knew of my complications but wanted to give me a chance. (And having good insurance probably helped as they made quite a bit of money from all the appointments and testing.) I did gain some good things from the experience, I now have an excellent pulmonary hypertension specialist, a new GI doctor who is familiar with scleroderma, and we have driven in New York City so many times it is easy now. Thank you all as always, miocean
  17. I received a call this morning from the transplant center. I was presented today and due to scleroderma , esophagus dismotility, pulmonary hypertension and a kidney transplant I am not a candidate for a lung transplant there. Time for Plan C. miocean
  18. This is all so very different from the kidney transplant. Once I knew I qualified it was just a matter of waiting and I waited 5 1/2 years so I guess I can wait for this as well... I am so very fortunate to have so much support from you and the people close to me! I saw my pulmonologist today and the bottom line with my pulmonary function test is that my diffusion has gone down around 7%. All the other numbers transpose about the same. So I guess its not all that bad. He received notes from the lung transplant doctor and they didn't have any of the negative things said to me, just clinical facts about tests that were done and what others to come. So I guess that is a positive as well. They haven't said "no" yet. We discussed applying to another center. He suggested I call there and talk with someone about my situation and see if they would want to move forward with me. He thinks it is best if I do it because I can answer their questions better. My husband and I talked about it and he is willing to do whatever I want. This center would involve relocating temporarily. I think your advice, Shelley, is what I will follow. Thankfully, right now I don't need a transplant. If things deteriorate I can always apply to the other center. I need a little break from all this. In a couple of weeks I see the pulmonary hypertension specialist, have an Echo and will see if another right heart catherization is in order, which I am pretty sure will be. That is enough on my plate for now, especially dealing with the pain from the calcinosis. But then, that is another thread. miocean
  19. Best wishes with your new doggie. I hope you have many years of health and happiness with her. Happy trails! miocean
  20. The meeting with the surgeon went as expected today except it was the fastest doctor appointment I have ever had! No one in the waiting room, no forms to fill out as I was already in the system, and a quick evaluation. I have a CT scan scheduled for next week and then will make a follow up to go over a plan. He spoke about the risk of infection and that the calcinosis can come back, things I am well aware of. He also mentioned bringing in a plastic surgeon in addition to doing everything to minimize the risks. I'll see where that takes me. I feel I am in good hands. I just don't want anything to interfere with all the plans I've made to live life to the fullest! miocean
  21. Thanks Jo and Shelley. As usual, you've said just the right things to lift my spirits! Fortunately I do bounce back quickly and am feeling more positive about the lung issue. Whatever happens I was given 10 years more already than I should have so that is a plus. I have the same risk of skin cancer from the kidney transplant and am very compliant about seeing the dermatologist for the least little thing I find. There is the option of going to another center if I choose. I wonder how and when one decides enough is enough. I've already decided that I'm going to do what I can while I can so I planned another trip for the fall! miocean
  22. I had a follow up at the transplant center two days ago and found it very discouraging. The doctor reinforced that my esophagus is not working. I brought up the possibility of fixing it and he said that would be discussed when he presents me. He now wants me to have a barium test to see how my small intestine is working. I've already had a barium swallow and a gastric emptying study. It seems like an entire upper GI series could have been done, testing the esophagus, stomach and small intestine all at the same time so why didn't they just do that to begin with? After this test he said he'll present me. It just doesn't sound like they will list me. I've known this from the beginning but it is frustrating to go through a year of testing to end up in the same spot as I started. He also commented on my tan again and the risk of melanoma. I then had my pulmonary function tests and they also tested my muscles. The regular part was no problem. I have never had my muscles tested and had trouble with that part. They block the line you breath out so it feels like you are blowing into a balloon that won't blow up. I had to use my hand to wrap my mouth around the mouth piece to prevent air loss. Since my hands don't work very well the first two times I tried it air escaped. The technician finally had me use both hands and that worked, she said my muscles are fine. I asked for the results and she said the doctor would have them in a day but gave me a copy of them on the spot. All of my numbers have gone down since January: my diffusion has gone from 31 to 25, my total lung capacity from 59 to 57 and my forced vital capacity from a predicted of 2.12 to 1.96. I have a call into the doctor for interpretation as this test uses the reference scale of Crapo/Hsu and it looks like my others use the EigenWang. The tech said the scale used might make the numbers different. Needless to say this was very depressing. On top of that my lungs hurt from all the testing. I was really at the bottom yesterday. But today is another day and I will pick myself up and go on. Stupid scleroderma. miocean
  23. Four years later... After a lull in the multiplication of the calcinosis on my buttocks it seems to have taken on a life of its own. Not only is it increasing in amount and size, the pain from it is also. It is very uncomfortable to sit on a hard surface and now it hurts when I am laying down in bed. When I awake in the morning I am aware of the pain from it. I am very fortunate that it has not ulcerated or become infected. I am in a study on calcinosis with my scleroderma specialist but all she does is look at it and measure it. Surgery is the only option yet she could not recommend a surgeon. I finally contacted the doctor that coordinated the removal of the calcinosis on my neck and have an appointment with him in a couple of weeks. I did not want to have surgery due to the risk of infection but I am afraid it is the only option. I asked my dermatologist about laser and he didn't think that would work. Of course, I don't want to have it done this summer and ruin my beach time! I will let you know what I find out. miocean
  24. Brianala, These are great questions and I am looking forward to the responses as well. My esophagus is not working either and I have also been told that a Nissen would not work for me. The surgeon at the lung transplant center discussed a Dor Fundoplication where the stomach is wrapped around the esophagus leaving a donut hole for food to go down. On my transplant forum I also read about a Linx procedure. This is a relatively new procedure done laproscopically. The device looks like a metal ring of beads and it is designed to open and close as you swallow. I saw my GI doctor today and discussed these with her. She said the Linx is less invasive and the good thing about it is it can be removed if it isn't working. If you have a hiatal hernia it has to be a small one. My is 2 centimeters so it is a possibility I will discuss with the doctors at the lung transplant center. I am also taking Shelley's advice and if I have a procedure done I will find the most qualified doctor to do it. Thanks for your post. miocean
  25. Here is another chapter in the seemingly never-ending lung transplant evaluation that I began 12 months ago: I am now considered a "pre-patient" and have been attending education seminars at the center with my husband. It is required that I take 12 hours of education a year. I have now completed 4. We have picked up some new information but much of it is general post transplant procedures which I am familiar with due to the kidney transplant. The interesting thing is the other people in the seminars. The people that are listed are all on oxygen, even at rest, which I am not as I only need it for exertion. Most are older than I am and look like they have a higher BMI than they should. In my mind, this confirms that I am currently not sick enough and that if my lungs do worsen I am in good physical condition to be listed. I also learned that the doctors meet as a group and discuss the patients. I met with the surgeon, a session that I was very interested in, as he specializes in both the lungs and the esophagus. The damage to my esophagus from scleroderma is what eliminated me from another center and may from this one as well. I asked about a Nissen Fundoplication and he agreed with my Gi and scleroderma doctors that it would not work for me, that a Dor Fundoplication would be a better solution. With this procedure they leave a donut hole when wrapping the stomach and the esophagus so the food goes down. In one of the education seminars a person who is listed and waiting mentioned that he has bad reflux so this would be fixed after the lung transplant so I asked the surgeon about it and he said that is the way they usually do it. He also looked at my tan skin, told me I had to stay out of the sun and that "we look for compliance." In a couple of weeks I meet with the lung transplant doctor and have a complete pulmonary function test. This will be the first PFT at this center so I do not know if it will differ from others that I have had a my doctor's and scleroderma center. I plan on asking him what the other doctors at the discussion have brought up about my case. I also have an appointment with the pulmonary hypertension specialist and may need another right heart catherization. All in all I am doing well. I do need to use oxygen when walking or exerting myself, but not in slow movements or walking on flat surfaces for short distances. I need to remember to move slowly and do pursed lip breathing. The humidity at this time of the year makes breathing a little more difficult but I am able to do the things I enjoy with moderation. I have even been able to go in the ocean, and you know how much that means to me! miocean
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