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Everything posted by miocean

  1. I learned more doctor names than I care to reveal but here it goes: 2 Rheumatologists, 2 Pulmonologists, 2 Nephrologists, Gastroenterologist, Cardiologist, Dermatologist, Gynecologist, Neurologist, Otolaryngologist, Psychologist, Opthomologist, and multiple Anesthesiologists, Phlebotomists, Pharmacologists, and Radiologists, , I also have several meteorologists, cosmetologists, technologists, and am married to a mixologist! :lol: miocean
  2. Hi Kamlesh, First of all, it is good to see you back posting. I tried acupuncture for neuropathy and renal failure. It didn't make my kidneys come back, even though the Chinese medicine doctor felt certain it would. :rolleyes: I don't think it did anything for the neuropathy either. I did find the needles to be especially painful, although some people said it doesn't hurt, it HURT!!! It was not covered by insurance so I stopped. Personally, I found it to be a waste of time, money and false hope. I wouldn't discourage you from trying, but do some research and try to find others who have been to that same person. I much later spoke with others who had used the same person I did and they all said it HURT! miocean
  3. I started pulmonary rehab and was looking forward to its benefits. I qualify due to Interstitial Lung Disease. Medicare will cover 36 sessions/once in a lifetime. I have 55% lung capacity and a diffusion rate of 43%. I carefully researched facilities and chose one that I felt would be best for me. My session consisted of weighing in, blood pressure, pulse oximetry with either a finger or forehead probe (I have Raynaud's and often do not get a reading from my finger), stretching, and easy 12 minute walk on a treadmill, 12 minutes on an arm bike, 12 minutes on a reclining step machine, stretching and a short education session. My oxygen and blood pressure were taken on each machine. I didn't desaturate below 92% and my heart rate and BP were fine. I rated the activities as fairly easy with mild shortness of breath. However, when I got home my legs hurt so badly I would have to go to bed and rest for hours. I found this to be very depressing and anxiety creating. It reminded me of dialysis, hours taken out of my day in an environment with sick people and machines, then in bed for hours. I was losing 3 days of my life each week. My achy legs started shortly after my kidney transplant over a year ago and at first I attributed them to inactivity but now feel it is medicine related. Just about all of my meds have achy limbs as a side effect. The pain is worsening to the point where I want to cry (and I don't cry). I took myself off the statin a over a week ago and have put rehab on hold, all with doctor permission. The other meds I can't go off. I didn't have a problem with my legs before, even though I was going to Physical Therapy 2x's a week and Occupational Therapy 2x's as well for about 5 years. I went to see my Primary who spent almost 2 hours with me, going over everything. I have to go to my vascular doctor and have the pressures tested in my legs. More doctors. I do fine with moderate walking and managing the stairs at home. I don't understand why such an easy workout would debilitate me so much. Now I just want to crawl back under the covers and hide most of the time. I know I am depressed. My doctors are not in favor of adding anti-depressants to my already too many pills. I am looking into talk therapy, have to straighten out some insurance issues. I'm sure this is part of my cycle: the sudden onset of scleroderma with renal failure and major organ damage, loss of job and life as I knew it, years of depressing dialysis > kidney transplant, feeling so much better, trying to return to my past self, slow realization that this is not possible because I have scleroderma > depression. I know many of you can relate...thanks for letting me share. miocean
  4. JBG, I'm glad your surgery was successful. :emoticons-clap: it sounds quite intensive.You must be happy to be out of medical facilities and home. miocean
  5. Sweet, I am happy that you feel relieved and that things aren't are serious as originally presented. It made me think, though...we sclerodermians who deal with so much can say that they are "super happy with this" when someone who hasn't experienced a chronic disease like ours would be freaking out! :temper-tantrum: We are The Best, aren't we? Looking forward to continued good news, miocean
  6. Dear Sweet, I am thinking about you and wish you strength during all this testing and stress. I like Shelley's idea of stress management therapy. In the meantime, as hard as it is to do this, since there isn't anything you can do about it right now except for what you are already doing, focus on the joy of seeing your son and grand daughters. Keep us posted and know you have a ton of support here. miocean
  7. :temper-tantrum: Back on doctors... :temper-tantrum: but just because it's that time again. If you remember the beginning of this thread in July, I had been well-advised to take a break from the medical machine and if you read that post I would have to start it up in the fall. Well, it is fall and so back I go. I can't tell you what a nice break it was to almost be able to pretend I wasn't sick. ^_^ I did most of the things on my bucket list and especially enjoyed the time spent on the beach. I still have "stuff" to put away, and I wish I had done more creatively although I did do some photography, a series on beach umbrellas, one on the wood knots in a cabin in the Catskills and another of closeups of driftwood from Hurricane Irene. I made a fall wreath for the front door and am working on accepting my hands are definitely not what they once were. In addition to the rounds of testing I need to complete, I have started Pulmonary Rehabilitation 3 x's weekly. My Interstitial Lung Disease has increased from the 2009-2010 CT scans and I have 55% lung function with a diffusion rate of 43% according to my PFT. Add to that the years I sat around in a dialysis chair and the inactivity due to weakness, coupled with laziness and you have one out-of-shape person! The most difficult thing about rehab so far is getting a reading on me with an oximeter, the finger ones don't work because of Raynaud's and even the forehead one won't read. The best thing about it is I am the youngest one in the room!!! :emoticons-yes: (Except for the people that work there.) Everyone is very friendly as part of the purpose of the rehab is psychosocial and my researching the right facility will pay off. It is very clean and the therapist wiped down the machines between people. The educational part at the end was on preventing pneumonia, and was basically what I have to do germ prevention wise since the transplant...practice good hand hygiene, stay away from sick people, wear a mask if necessary (giving me a chance to pull out my "bling" decorated masks), keeping your core body warm, wear a hat and gloves, and something I hadn't known, to use a scarf and keep your nose and mouth covered when you are outside. I wish I didn't have to go back on doctors and through all the testing but we all know that is just the way it is. :unsure: miocean
  8. Dear Amanda, I've been staring at this post trying to think of what to write for a long time now. You've always been such an inspiration to me and others. I am sorry you had to miss out on that special occasion. I am saddened that this disease takes so much away from so many. I am amazed at what you DO despite it all. :emoticon-hug: miocean
  9. Dear Jean, Your qualifications are impressive and I know you will be a great contributor to the ISN! miocean
  10. Dear Bleev, I understand your fears about the future and wish you the best on you CT scan tomorrow. The people here can and will help you through all to come. I have had ILD for 7 years now with ups and downs am and holding steady right now with about 50% lung function. I am following the classic pattern of diffuse scleroderma with sudden onset and major organ damage but, continuing the pattern, I should hold steady where I am. If you get this in time, you should make sure they don't use contrast for your scan. Contrast is a dye they inject into you and, unfortunately, it can damage the kidneys. I don't mean to frighten you with this, sometimes contrast is necessary for a test, but should be avoided when possible. I have yearly CT scans without contrast and they are able to see the fibrosis in my lungs without it. If they do use contrast, ask to have your kidney function monitored, creatine especially through blood work and urinalysis, and monitor your blood pressure as well and if it goes high, notify your doctor immediately. Also ask whether it is a high resolution CT scan (HRCT) One of the tests you will probably also need to have is a pulmonary function tests (PFT) which measures your lung capacity and your diffusion rate (DCLO - how your lungs put oxygen back into your body). You may also need a 6 Minute Walk Test which tests how your lungs function under exertion. Please let us know how it goes and try to be calm. I know that is not that easy. miocean
  11. Shelley, How did you get to be so smart? miocean
  12. miocean


    Well, so much for dropping pictures into the post. :emoticon-dont-know: Didn't work. :temper-tantrum: miocean
  13. miocean


    Busy... Those of you who know me will find me on the beach! Any time of year! I have to admit I have become an internet addict. I am on the computer almost all the time, even on the beach I use my phone. I love looking up things. I'll read an article that will link me to another one or create a question that I just have to look up. Since my attention span is shorter now this works well for me as I can jump around and read what I want rather than trying to get through a book. I was always inquisitive, when young I would read the dictionary or look up things in the encyclopedia for fun. I've been taking photos and enjoy that. For instance, I just discovered I could drop photos into this post. When I first tried they were too big so I had to figure out how to resize. The first two were easy and then I ran into problems, too small, too big, too blurry. I mistaken stumbled onto something cool, but can't resize it without it getting blurry and I'll probably forget what I did that I liked! So now I've been at it an hour and it is WAY past my bedtime. Warm...silk underwear, layers, and gloves! miocean
  14. Dear Concerned Daughter, First of all, you have come to the best place in the world for information and support for scleroderma. There are thousands of pages of medical information backed by real life experiences of those that deal with the disease. Here is a link to the page on Scleroderma and Genetics. I understand your concern. My mother had some issues that are symptomatic of the disease but was never diagnosed. I have no children but worry about my niece who in her mid 20's has health issues that a person her age shouldn't have, especially fatigue and body aches. I am very open with her about my disease. When she went to her doctor she mentioned her aunt has scleroderma and fortunately her doctor was familiar with it and immediately asked to see her hands. She is fine at this point. There is an ANA test but the test alone will not give a diagnosis so don't bother asking for it unless you experience symptoms. Diagnosis is usually symptom based, backed up by the test. It is a very difficult disease to diagnosis as everyone experiences it differently. I would advise you not to worry about something that hasn't happened and may never, but also to be informed and aware and if you or your sister begin to experience symptoms you bring it to the attention of your doctor. Your knowledge will help you with your mother and grandmother as well. You can search for just about anything on the forums or medical pages. To do a search on the forum, use the search box on the top right of this page To search the medical pages, go to the "Medical" tab at the top of the page and put in your search. I hope this will help you. miocean
  15. Hi Marsha and others, Who me? Raynaud's? :emoticon-dont-know: I was sitting in the doctor's office a couple of months ago and it was very cold. He asked how my Raynauds was and I said "I don't really have Raynaud's" looked down at my fingers and they were blue! So I am officially in the club! :emoticons-yes: I was diagnosed with it years ago but other than a slight blue tinge when it gets really cold it doesn't seem to be the biggest issue with me. I have always been a glove wearer in cold weather and have them from thick to thin and sometimes layer them. I have all different weight coats as well and layer clothes. Last year I bought a good pair of silk underwear and it was the best investment I ever made! I avoid the cold aisles of the supermarket. I haven't had ulcers yet. I am already on blood pressure medicine, along with the 25 or so other pills :unsure: I take daily so I would be reluctant to do something else unless I did start to get ulcers. I try to be prepared for things. For instance when I go to the beach I have my bathing suit, a light coverup, a long sleeve shirt, pants, and a sweatshirt!!! One day a lady sitting near me asked, "How many outfits do you have?" :D That reminds me, we are heading to the beach in a little while and I am going to put my lightest pair of gloves in my bag. :blink: miocean
  16. Hi Georgie, At a GFR of 25 you are doing pretty well. My GFR after transplant is 45. It is my understanding that until it drops to 15 there is no need for dialysis. I go to a support group for Dialysis/Transplant candidates and there are several people with diabetes who are holding steady with a GRF like yours. My nephrologist told me that he pays more attention to the creatine level than GRF for me as a post transplant patient. Mine has been averaging 1.2-1.3. It as 8 when I was on dialysis. Just recently went it jumped to 1.6 , back down then back up to 1.5 again. I had a biopsy and thankfully everything was fine. I am wishing you the best and always keep asking questions. What is your creatine? Are you spilling protein? Do you have edema? Is your urine foamy? :balloons: Keep your spirits up! miocean
  17. :emoticons-line-dance:EXCELLENT, AMANDA!!!! :emoticons-line-dance: You amaze me more and more... miocean
  18. Lately I've been waking up early with a full bladder. I DON'T WANT TO GET UP! Then I remember to be so grateful for a full bladder and think of my donor and his family who gave me a kidney. How easy it is to forget NEVER having a full bladder, sitting for hours in a dialysis chair to remove the fluids, having a highly restrictive diet and fluid restriction, being depressed, feeling terrible and immediately after kidney transplant getting up every 15 minutes with a full bladder! Just a reminder to me to remember to be grateful to what I do have, rather than do bemoan the things I've lost. miocean
  19. Hi Jalee, I do not have the same thick cuticle problem you do but I do get weekly manicures. I started years ago because I am a chronic nail bitter, and not only that, I have a compulsion to use the ragged edges of the nails and pick on things. This goes back to childhood when I would drive my mother crazy because I would pick the bindings off my blankets and she would have to sew them back on. I have destroyed many a skirt picking the hem out of it. I also am unable to apply polish myself anymore. Since my kidney transplant I am no longer allowed to use the common items in the salon due to infection or fungus. They keep a box for me that has all my own tools and polishes which I provide. This is a common practice in some areas. Where my sister lives most salons have boxes with their client's names on them.I am not one for change and use the same color for a long time. Right now my nails are silver and have been for months. I also NEVER allow anyone to cut my cuticles, they are just pushed back. Cuticles serve a purpose and cutting them increases the risk of infection. Again, I don't know what you are dealing with. :emoticon-dont-know: My nail tech is very gentle and understands how sensitive my hands are. I am not allowed to have pedicures. If you do a search on the dangers of pedicures you will understand why. Since I can't have pedicures I just have a toe polish change, must less expensive and keeps those beach toes looking good! I would suggest you talk with friends who get manicures and get a good recommendation. For the small additional investment, I would also ask what tools are needed and provide them yourself. I only need a cuticle pusher, file, and the tool that cleans under your nails. If the salon won't keep them, you can bring them with you. Instead of polish, which would show the growth of your nail if you are not able to go frequently, your nails can be gently buffed (you would need the right buffer for this.) The salon may also work out something special price wise if you just want to have your cuticles pushed back and your nails filed. miocean
  20. Congratulations! :emoticons-line-dance: I never had children so no grandchildren for me. My friends are all posting pictures of their grandbabies and my younger friends their babies. They are just too cute. I do have two nieces nearby ages 1 and 4 so I can enjoy those little ones and their joy of life. I miss teaching. They were my thousands of kids! :emoticons-group-hug: miocean
  21. Thanks to everyone on this wonderful forum! Miocean :emoticons-thankyou:
  22. Margaret, I'm glad Gareth is pain free :emoticons-group-hug: miocean
  23. Thank you for all your well wishes to those of us in the path of Hurricane Irene. I live one mile form the ocean and 200 yards from a major river and was fine. Lower areas or streets near the beach were mandatory evacuation. We are all fine in this coastal area of NJ, some are still without power and a beach north of us lost their boardwalk but in general we are fine. It is the inland areas and New England that are in difficulty now. North Jersey flooded out 3-4 times this winter with the snow melt and is flooding again. The Passaic Falls are the second highest on the East coast, second to Niagara, and the river is creating havoc. Towns north of here are being evacuate as I write this. If I needed to get to my scleroderma hospital it would be very difficult because the major highway is underwater. Thousands in NJ are still without power. Vermont has been devastated, towns totally cut off as bridges have washed out and it was a tropical storm when it passed through there. Thousands are without power, 700,000 in NJ alone. We were very lucky here. Before the storm I received an email from a friend in Florida who has been through many hurricanes. I sent it out and others added to it. I organized it and compiled it and believe it would be useful to anyone, anywhere who might experience an emergency situation. Especially for those of us with scleroderma or other disabilities. I am so grateful I am not on dialysis because I always worried what I would do without access to the machine. I remember after Katrina they showed a man in a wheelchair after getting out of the Superdome and he said he hadn't had dialysis in 5 days and would die soon without it. In a recent storm my hospital lost power and had to transport patients to other places as their generators could not power enough. Pretty scary. If you have any other suggestions, please add: EMERGENCY PREPARATIONS Be prepared to lose power for anywhere from a day to as long as 2 weeks. Freezer: The larger the blocks of ice you freeze the longer it will keep your freezer frozen. Buy gallon jugs of drinking water, take out about a cup and put it in another container for freezing or drinking (water expands when frozen) and then freeze as many gallon jugs as possible to squeeze into the freezer. Pack the food as tight as you can around these jugs. The water in the jugs, as it melts, will be your drinking water if your water supply is tainted, compromised or non-existent. The more full the freezer is when the power goes out, the longer it will stay frozen. Also, put everything that can be frozen into the freezer. Water: Fill all bathtubs with water for flushing commodes, bathing, and if necessary, drinking. If your water stops running, keep a bucket handy to flush with. Remember to have plenty of drinking water handy. Your water may not be drinkable after a storm. Have bleach handy, a coupe of drops can purify water. Power: Make sure you have an ample amount of batteries and flashlights and/or flood type lights that run on batteries. You never know how long you will lose power. Do NOT use candles during the storm! If a window breaks or wind gets in from any source, you could very well have a house fire, when fire engines cannot come to your aid. Battery drive hurricane lamps can be invaluable. A battery backed up surge protector will keep your computer from crashing when the power comes back on. You can also use it to charge phones. A crank radio, a headset or a battery powered one to keep up to date on what is happening. Extra batteries. DON'T WAIT UNTIL THE LAST MINUTE TO GET BATTERIES. Food: Stock up on foods that do not need refrigeration, such as canned Tuna and Salmon, Breads, Peanut Butter and Jelly, canned Baked Beans, energy and breakfast bars (they can really help sustain you). Have a hand can opener & plenty of canned goods. Money: You may need some cash..a few 100 bucks, no larger than 20s. The ATMs will not work if the power goes out. Medications: BE SURE TO HAVE ALL PRESCRIPTIONS FILLED with enough to last for at least a week or longer. Have a GOOD first aid kit handy. Safety: Stay away from doors and windows and find a safe place in the center of your house, if possible. You don't want to be injured by flying glass at a time when even ambulances cannot get through. Gas: Make sure your car is full of gas, as pumps may not work after a storm. Windows: Those that can and are in the path of the storm should board up their windows. You may have to do some exterior painting afterwards, but it is worth it to be safe. Taping them absolutely does not protect them and is very difficult to remove. Loose Items Outside: VERY IMPORTANT: Be sure you bring everything inside that you can and that your neighbor does the same. You would be amazed at what a hurricane can pick up and throw right through your windows. Don't even leave a hose out. The story about hurricane winds making a feather pierce a wooden telephone pole are widespread. Valuable Papers/Jewelry: If you have to evacuate, bring them with you. if you can't, put them in a waterproof box, safety deposit box, safe or the dishwasher since it has a water tight seal. Extras: Chainsaw, plenty of extra fuel, Generator + fuel + drop cords and a cord where you can plug in more than 1 lamp. Park your cars facing outward. Pay attention to official announcements. If told to leave, LEAVE!!! miocean
  24. To "Bookworms" family, "Mary from Texas" and I joined the forum within a few days of each other. She was an inspiration to me and to many others. I am so saddened to hear of her passing. We were all very fortunate to have her contributions and insight into the issues that plague us. May you have special memories to treasure forever. miocean
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