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miocean

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Everything posted by miocean

  1. Update on Lung Transplant Evaluation

    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
  2. Update on Lung Transplant Evaluation

    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
  3. Calcinosis on buttocks

    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
  4. Esophageal Dysmotility?

    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
  5. I think I have scleroderma

    Hi Ugh. Great name, fits how most of us feel some of the time. "I've had problems when I was a child with my immune system attacking itself, and for my whole life I've had problems with exercising because my lungs were weak." Can your share your childhood experience of your immune system attacking itself? What were your symptoms? Did you ever get a diagnosis? Have you ever had a Pulmonary Function Test or a 6 Minute Walk Test? Perhaps you should go to a pulmonologist and get tested. I would also suggest some calming exercises, meditation, a creative outlet or anything else than can help with the stress. I am curious about your previous symptoms and if you have any other current ones besides the shiny hands and lung issues. Good luck ditching the nicotine, it is a hard habit to break. miocean
  6. Oh what a buzz: swimming with hearing aids in

    I am guilty of swimming with sunglasses on. Last year I lost two pairs of prescription sunglasses in the ocean. I know you have to sacrifice things to King Neptune every once in a while. In the past it was usually an earring, or cheap sunglasses or something small, not TWO pairs of very expensive shades. I was even wearing a strap to hold them on the second time. I can't even count how many contact lenses I've lost. I am now being refitted for them. I hope I don't set a new record! Shelley, we were in a restaurant the other day when we heard the hostess ask if anyone found a hearing aid. miocean
  7. Althora, Please see if there is a scleroderma specialist in your area and even if you have to travel a distance for a visit, please go. Scleroderma is difficult to diagnosis. I went to so many doctors trying to find out what was wrong with me that it was a relief to finally get a diagnosis. I wish I had gotten it sooner as the disease had progressed rapidly within 6 months. If you are still concerned about it, set your mind at rest by seeing a specialist. Keep us posted. miocean
  8. Dear Fragile Dancer, Social Security is very helpful in answering questions so to get a definitive answer, call your local office. I went on Medicare due to disability and was able to keep my insurance from my job as secondary coverage. My spouse went on Medicare due to age and stayed on my policy for secondary insurance. We are very fortunate because that gives us both great insurance. I would think that you would be able to have both also but call to be sure. I wish everyone had great insurance and no one had scleroderma! miocean
  9. Birth of Baby Antelope

    How very lucky you are to experience this! I have seen puppies born and baby moose in the wild and I feel it is a great gift when animals trust you enough to come near. We have whales off our coast right now but you have to be on a boat to see them. The porpoises will be swimming by as soon as the ocean warms up a little. There is park south of us where fox live and they are friendly critters, often out in the road looking for people to feed them (although you shouldn't). We, too, have deer that live by a major highway and get hit by cars. Now, if I get to see a bald eagle I will be thrilled! Miocean
  10. Stereotactic biopsy

    HI Sadie, I had a stereotactic breast biopsy years ago when the procedure was relatively new. It is much less invasive than a lumpectomy. The only risk I was told of at the time was that there was a possibility that the needles could miss an area. I am sure over the years they have refined this down to a science. I was not diagnosed with scleroderma at the time and had no active symptoms. The procedure is painless. The area is numbed and then using guided imaging like a mammogram several needle samples are taken to be analyzed. I have no visible scar or mark left from it. My area of concern ended up being cystic breasts and I hope you end up with a benign diagnosis as well. I am sure you are very worried and hope the test eases that for you. Best wishes, miocean
  11. I was going through some old photos of me and found several with a prominent line down my forehead, similar to Athora's photo. These were also when I was in my late 20's/early 30's when I parted my hair down the middle. Oh No! I had en coupe de sabre years ago and didn't know it! GASP! I started looking a pictures of it online and mine wasn't nearly as severe as what I saw. I then searched for "prominent forehead vein" and came up with images that look more like my forehead. With my skin hardening, softening and atrophying it isn't that visible now but I can still see it. I've worn bangs for years so I sort of forgot all about it. Athora, I hope you find an answer to this line on your forehead and whatever it is it eases your mind. My example is to show how easily we can think we have something we do not just by reading the symptoms. I hope you find a good doctor who can help you. Please let us know. miocean miocean
  12. Yes, Jeannie, it is good to hear from you, and Shelley, you always make me laugh! I picture a barn loom as one so big you need a barn to keep it in. I am also guilty of an over abundance of art supplies, not to mention stacks of paintings. These "children" of mine I once thought were so precious I couldn't part with them now take up so much space and my current work is so much better it makes them seem like the black sheep of the family (who live in the barn with the looms!) :D My reading material is also digital these days but my husband worked for a newspaper and LOVES newspapers so we have piles of these until they go out to be recycled. We could open up a kitchen supply company with his cookware and gadgets but they are minor faults I can't complain, especially about the kitchen stuff because I get to enjoy the fruits of his labor. I had stopped reading books because I had trouble holding them so digital books have brought the joy of reading back to me. We still don't like buying digital music so CDs are another space taker upper. Why did we decide to manifest so much stuff? miocean
  13. I have scleroderma.

    Hi FC, Yes, there are a lot of variables and it is nerve-racking! I hope this forum helps you as much as it helps me. In the beginning it reassured me that so many lived for so many years with the disease because reading the internet can make it sound like a death sentence. I have had diffuse scleroderma for 10 years now, with renal failure, a kidney transplant, lung fibrosis and pulmonary hypertension. I use oxygen for exertion and am applying for a lung transplant. The people here have kept my spirits up and have inspired me along my journey. They have taught me how to laugh at adversity and, as you said, man up. It is never easy and some days are harder than others. I make sure I do the things I love to do which includes art, traveling, and going to the beach. I can't do them in the same way I used to but have found ways to adapt. :emoticon-hug: Here's a hug for you. Stay in touch. miocean
  14. Kathy, Your list is very comprehensive. Thanks for sharing it. Depending on where you live you can get just about anything online. For my niece's wedding I went online and looked at dresses. I just didn't have the energy to go store to store, trying things on, getting dressed and undressed. I found the perfect dress on the first order! Of course, knowing your size helps a lot. I also ordered dress sandals and the company I used was so helpful! It took 3 tries to get the size right but I had each new pair the very next day! Amazing, isn't it? I use mail order for the majority of my medications, and I have three different speciality pharmacies I have to use. Most of the time this works out great! They are very helpful, especially if I need an advance supply for traveling. Great suggestions, keep them coming! miocean
  15. Four years ago today I was in surgery receiving a kidney transplant. This is a day of mixed emotions: although I am celebrating today for this gift of life I know there is a family who is grieving. They know how much I appreciate this gift as I have anonymously sent notes to them over the years. It is a day that is both happy and sad. I will be spending it at the lung transplant center going through interviews for the process of a lung transplant. Today I see a nutritionist, a psychiatrist, a social worker, and a financial planner. Not exactly the way I would choose to celebrate! Next week I see the transplant doctor and the following week an endocrinologist. That should finish up the testing and screening. miocean
  16. Kidney Transplant Anniversary

    Thanks, Shelley! miocean
  17. Kidney Transplant Anniversary

    Hi Shelley, Both my scleroderma specialist and my GI doctor have told me a Nissen fundoplication would not work for me, that it would just cause more issues in the future. I brought it up at the lung transplant center and was told that different doctors have different opinions, so it is possible they may consider it. I'll bring it up again at my next appointment. I know how reflux damages the lungs and completely understand why precious lungs would not be transplanted in me if I would only damage them. There is a center I could apply to that does higher risk patients but it is far away. We would have to relocate and I just can't think about that right now. I'm just grateful that I can function fairly well using oxygen only for exertion. We just returned from a 2 week trip and I was able to go to the beach and go in the ocean. And you know how happy that makes me. :emoticons-line-dance: miocean
  18. Kidney Transplant Anniversary

    Hi all, I have met with the lung transplant doctor and an endocrinologist. All of my thyroid panels came back normal. I am now considered a "pre-patient." I have not been accepted to the program but will be seeing the lung transplant doctor every 3 months. When my next visit is scheduled in June I will see the surgeon and have a repeat of my pulmonary function tests. Basically, my lungs are not damaged enough to be considered for transplant at this time and the damage to my esophagus may exclude me from being a candidate. I am at the same place I was last year with no complaints. The damage to my lungs is not increasing and I have found some great additions to my ever growing list of "ologists!" I'll keep you posted! miocean
  19. Chat Room "News" for ALL Forum Members

    I have enjoyed the chats I have participated in as they have allowed me to know other forum members more intimately than just through their scleroderma issues. It is like talking with friends you have something in common with and catching up on their lives. Many times the conversation gets ahead of me...but when I post my thought the conversation will return. One suggestion I would like to make is to post the chat the day before it is occurring as well as the day of. Many times I get on the forum, read the heading bar, and realize I missed the chat by a little while. Or perhaps have a second bar that states chats are Tuesdays, Wednesdays, and Fridays as a reminder for all of us suffering from brain fog. I also had trouble getting in the chat room because of my Java settings. I was able to go to a previous post on trouble getting into the chat room and found that I had to lower my security to get in. I then received all kinds of warnings but went through them anyway and then reset my Java when the chat was over. I hope this doesn't discourage others. Thank you to the chat moderators for making sure they are there for all of us. miocean
  20. HI Kathy, Having experienced all the things you are going though I can understand how frustrating it is! The best thing I did when my fingers began to curl was to go to Occupational Therapy. I have a wonderful hand therapist who worked with me off and on (mostly on) for 5 years. Although my fingers are curved, I can hold things and make a fist now. It is a big commitment in time, but do you think your rheumatologist would write up a prescription for Occupational Therapy? If you can't spare the time to go somewhere there are hand exercise videos online you can do at home. I went through the same thing Jo did with rings but had them sized more often and now have guards on some to make them smaller in case my fingers swell again. I also learned to let go of some things. Yes, I would like everything around my house to be perfect, as I am a little obsessive/compulsive about things being in the right place. I have accepted that it won't always be the way I want it. I have two friends, neither who suffers from a chronic illness, who have accepted the fact that they are not great housekeepers. Their philosophy is if you come to my house you are coming to see my or my family and that is more important than how my house looks. My husband says, "I shop, I chop, and I mop." And he does. Since he is doing all these things, I don't complain that it is not done the way I would do it (unless I am having a prednisone anger moment ). Lately he has been spending a lot of his time taking me to all day medical appointments. When I thanked him today for all he did yesterday he replied, "That's what I'm here for." Try not to feel guilty. There are many ways you are doing things for him that you are not even aware of. Save your energy for things that are really important, like that baby of yours. My little nieces don't understand that I can't lift them up or run around with them, so I do other things to make up for it. We engage in more quiet play and art activities. Thanks for posting and updating us all. miocean
  21. Kidney Transplant Anniversary

    The meetings with the psychiatrist, nutritionist, social worker, and financial planner went well. I was surprisingly calm, no anxiety. I've done everything that was suggested, finished pulmonary rehab, lost weight, sought therapy when needed, been compliant with medications, etc. Amazingly, each professional had read my file and knew about me! The financial planner was not able to get information from my secondary insurance but is looking into it. They said they would be there for me every step of the way and if I needed anything at any time to contact them. My husband did a great job during the interviews. I did come to the realization that besides him I do not have many support/caregiving people, or at least I didn't think so at the time. Since then a cousin has offered her help, and she is a nurse. My sister lives far away, but has always offered to come if I needed her. There are probably others who would help...I will have to think about this. I am one of those (like most of you) who finds it difficult to ask for help. This week I meet with the transplant doctor. I have some questions about interpreting some of the tests I had. I also see my pulmonologist the day before so he can help with my questions. The following week I see a bone endocrinologist and that should finish me up. Then the team will get together and decide whether I am a candidate or not. I have mixed emotions about this. I have been trying my best to do what I have to do and then let go of it. Not so easy for the Queen Of Worrying! miocean
  22. Shelley, I think about you and Gene often and hope that you are full of happy memories. I know you are grateful for every moment and made the best of each and every day. Here are some to help you through these times. :emoticon-hug: miocean
  23. GI Testing Completed

    Ten years ago I began to experience my first symptom of scleroderma: waking up in the middle of the night with pain and tingling in my hands and arms. I thought I had carpal tunnel syndrome. Six months later I was in end stage renal failure and on dialysis. Five and a half years later I received a kidney transplant. Four years later I am now applying for a lung transplant. It hasn't been an easy journey but at least it has been a journey. Last year at this time my best friend was diagnosed with lung cancer that spread to her brain. She died in within 6 months. I do understand what my doctor meant by her statement. It is frustrating, though, that scleroderma is such a misunderstood, little-known, deadly disease. It is rarely mentioned in discussions of autoimmune diseases, while lupus and multiple sclerosis are. All we can do is try to create an awareness of scleroderma, support each other, and hope for strides in treatment and toward a cure. Let's face it, there are no nice diseases. Thanks everyone, for your concerns. I am nearing the end of the transplant evaluation. Tomorrow I have a cardiac stress test and meet with a neurologist. I have two more days of interviews and appointments and should be all finished up by the end of the month. I'll keep you posted. miocean
  24. It seems like it has been taking forever (because it has been months) but I am nearing the end of my lung transplant screening at the 2nd center I applied to. The first center rejected me immediately due to extreme reflux and damage to my esophagus but the second one is willing to test further. I started this process around July and was told I would be finished in Sept. Here is the update on the current lung tests: My Pulmonary Function Tests were very similar to last year. I had a very slight improvement on my Forced Vital Capacity and a slight decrease in my Total Lung Capacity and Diffusion. The differences were very minor and my scleroderma doctor, pulmonary hypertension specialist and I are very happy with that. The numbers are not good, but no severe decline. I still desaturated on my 6 Minute Walk Test but walked 50 meters further! I think Pulmonary Rehabilitation and exercising more contributed greatly to this. Although I have finished rehab I have joined a gym and am continuing to exercise as I don't want to lose what I have gained. My Echo confirmed the numbers of my heart catherization in August or September where my pressures went down to 23 (normal.) My PH specialist is continuing my protocol of Adcirca, a diuretic, oxygen during exertion, and exercise for now, I will probably have another heart cath this summer. My CT Scan showed very little change from last year according to my PH specialist! This is great news because last year my fibrosis had increased and my lungs had started to honeycomb. I haven't read the report myself yet. This week I spent a 13 hour day from start to finish at the transplant center. A two hour commute to and from, six tests and a meeting with the PH specialist. I had the CT scan, a Sniff Test to see if my diaphragm is working (it is), a chest X-ray, an arterial blood gas test, EKG, Echo, and the appointment with the PH specialist. I am still very impressed with the organization and professionalism of this center. I have had experiences with 11 hospitals in the past including kidney transplant screening so I have a good basis to judge. I now have a neurological evaluation scheduled in a couple of weeks and maybe a few more interviews but the testing part is finished. Once these evaluations are finished the center will let me know whether I qualify or not. It was last year at this time that I learned about the increase in fibrosis and developed pulmonary hypertension, putting me in the position to see if I am a candidate for a transplant. I started the transplant process and medication for the pulmonary hypertension but also put out a lot of positive energy that my lungs wouldn't get any worse and did everything I could to improve them including the rehab and a series of breath work. I have been seeing a therapist and working on dealing with the stress and anxiety of all of this. It hasn't been easy, it never is as we well know... So now this part of the journey is almost over and an answer is in the future. I have found some new, better doctors. I also learned about the GI damage scleroderma has caused. I am amazed at the dedication my husband has shown, the time he has given up, and his unwavering support. Sometimes I think it is harder on him than it is on me. I will let you know what happens next. One way or another, it will work out. miocean
  25. I am very saddened to hear about the loss of Gene and send out healing thoughts to Shelley Ensz and all the members of the ISN family. miocean
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