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Everything posted by miocean

  1. Hi NorthStarHope, I was thinking about you and was hoping that your absence meant all was going well. I have no experience with ulcers so cannot help, just wanted to say HI! :emoticon-hug: miocean
  2. Dean enjoytheride, Well, you certainly didn't enjoy THAT ride! I would be so frustrated. :temper-tantrum: Do they have a return policy like a department store..they should. When you think of it, it is a very scary medical world out there. You put your trust, life, and money into the hands of "professionals" and they screw up. I know they are human and have a lot of pressure on them between the insurance system today, their patients, and the changes in the medical field but the scheduling department made a big mistake when they scheduled you with that doctor and the doctor should have been upfront and told you she was not the right person to see. :emoticon-bang-head: Thinking of you, miocean
  3. I just wanted to let you know I am doing better without the medication. :VeryHappy: In addition to the counseling session Monday and the appointment with the lung specialist at my center June 3rd, I have been able to get an appointment another scleroderma expert for June 10th! :emoticons-yes: Now I just have to gather my medical records. I have copies of all tests from 2010 to now, with the CT Scans from 2008 until now. I will be able to get copies of a few other things I need, I don't think it is necessary to go years back. I haven't kept all my records, when I was on dialysis, they kept all my tests, which had to be done yearly, and would forward them to the transplant centers so the first place I will go is my nephrologist, who has yet to computerize and I know I have 2 files about 4 inches thick there. My primary has things and so does my cardiologist. Do you keep copies of everything? My blood work alone for the past year would be pages. How do you manage your files? I have a friend who kept everything, yet she was unaware of a standard test they run after a kidney transplant (BK virus), 3 years out said it had never been run on her, yet she goes to a center that specializes in that virus. :emoticon-dont-know: Thanks again, miocean
  4. Well, I've take all of your advice to heart and here is where I am right now; I have a call and email in for a consultation. I had a PFT test yesterday and was very scared because I thought I might have to go on O2 again as I have been short of breath, but my blood oxygen level was 92%, my total lung capacity is 65% and my diffusion rate is up to 45%. I discussed a second opinion with my local pulmonologist and he suggested I see a lung specialist he knows at my scleroderma center. He personally called him and discussed my case. I just made an appointment for June 3rd! I made an appointment for next week with my counselor. I am holding back from the non-profit that was causing so much stress, still doing my job but not getting overly involved. :thank-you-2: So thank you all, my scleroderma friends and family. :thank-you-2: Now, if all the boxes could be magically unpacked and all the paintings on the walls... miocean
  5. akchrist Thank you for the information on scleroderma and cortisone. I declined a shot, not because of the scleroderma, but because of the new kidney, even though my doctors said it wouldn't affect it. I am not in that much pain and don't need to add any more medications to my ever-growing list. Feel Better, miocean
  6. I am taking everybody's advice. Yesterday we went to the beach and we're going again today. My husband got up early and has been painting. The boxes will still be here. Life will not come to an end because my house is a mess. I don't have to do everything at once. I do no have to be perfect. :emoticons-group-hug: See, I'm doing better, and no meds! :emoticons-group-hug: I think I will seek a second opinion. I've been considering it for a while now. Just which doctor is the question now. Thanks and off to the beach I go! miocean
  7. Thanks for your quick replies. You are the best! I just hung up with the nurse at my scleroderma doctor. She want my most recent labs, which is no problem since I have blood work every two weeks, so I will fax them over. They have put me on the cancellation list and I am waiting to find out what she wants done with the next Echo, whether to have it locally or at her center and when. I asked, "what if I had a crisis and couldn't get in to see her?" and was told to call and she would make a decision based on need. Apparently, she is only in the office 1 1/2 days a week and is in clinic (whatever that means) the rest of the time. Here's another part of the story...when I was diagnosed and going through the crisis that caused the coding and subsequent renal failure, I had seen her once and was using a local rheumatologist. HE was concerned about my kidney function but felt his hospital was not the place for me since they knew nothing about scleroderma and it took him 2 days to convince her to admit me, then, when I was re-hospitalized locally one week after being released I called and asked to be brought to her center and she refused! She is the leading expert in the area,, and I am also able to get to Dr. Wigley in Baltimore. There is also a center in PA I interviewed at and like the doctor there but determined it was too far away for immediate help. I've just been too sick over the years on dialysis to do more than go through the motions but want to be more proactive, especially since lung disease is the leading cause of death now. When I was diagnosed, kidney failure was and I really thought I was going to be dead in 5 years, it was only through this board that I realized the internet was not accurate with mortality. I have taken Tai Chi, Transcendental Meditation, yoga, been to counseling for overeating and grief, but the best therapy for me is the beach and I am heading there in a little while to chill, probably literally because it is sunny but not that warm today. :) I am going to hold on the anti-depressant for a little while. Is it time to fire my doctor or at least seek a second opinion? miocean
  8. Hi All, Many of you are familiar with this story but for those new: I was diagnosed in 2004 with diffuse scleroderma and suddenly had a crisis where I stopped breathing, my heart stopped and my kidneys failed. I was on dialysis until March 2010 when I had a kidney transplant. Over the years I was diagnosed with upper and lower GI issues, lung fibrosis, a diffusion rate of 38%, pulmonary hypertension, high blood pressure, high cholesterol and a skin score of 45 on a scale of 0-50. I could barely walk and my fingers curled. I suffered from depression. I've had over 5 years of physical and occupational therapy. Before the transplant my skin began to soften and post transplant my skin score is now a 3. According to my last Echo I no longer have PH. My diffusion rate has improved to 45%. However, my lung fibrosis has increased on both my lower lobes and is now on both my upper lobes. I also have osteoarthritis in my thumb, wear a permanent splint and face surgery eventually. I've always tried to maintain a positive attitude and especially since transplant have highlighted to others the improvement and I definitely am much better than when I was on dialysis. I was taken off anti-depressants but have many anti-rejection drugs to take along with those for still present scleroderma issues, including prednisone and prograf, both dangerous drugs but necessary to maintain the kidney. One will destroy my bones and the other causes cancer. They also both cause anger issues. I have always been a rather mellow person, although at high stress times would get a little hyper. Within the past 4 months I have experienced a lot of changes/stressful situations. We renovated our townhouse from top to bottom, beginning in October and causing us to relocate to an apartment in February. It was done in stages and although I am now back home I figured out we "moved" 4 times in 4 months. There are still boxes everywhere, painting to be done, and rooms to be set up, but I am home. I volunteer for two non-profits, including the ISN, but have recently found my work for the other one is equal to a full time job, plus I am having personality issues with the head of it. I have a friend in Japan who suffered through the earthquake/tsunami and other who nearly died of diabetic ketone acidosis all in the same week. I was hearing terrible stories of sick children. I ran out of an anxiety medicine I have been on for 40 years due to miscommunication between the pharmacy and the doctor. I turned into a terror. I over reacted to many things. It damaged my relationship with my husband who literally became afraid to talk to me. I hardly ever hear from my friends and those that I thought were new friends are not really friends. However, it has always been the case that I am the one to contact my friends rather than they calling me so that is not really a new thing. I also have fatigue issues, sometimes I am in bed at 3:30 p.m. I believe everyone thinks I am "cured" because of obvious physical changes since the transplant and my portraying everything so positively. I am problem solving, setting up a committee to help with the non-profit, trying not to become over involved, staying distant from the person I am having issues with, talking with my husband about what is going on, and got the ok to go back on anti-depressants. Here is the deal: the anti-depressant has toxic reactions with 3 other medicines I am on. My nephrologist and general practitioner have approved it for my use and I've been on it before. When I was on it, it caused a lack of all emotion, I didn't cry for 6 years even through deaths of loved ones, and didn't get really happy either. My doctor warned me that could happen again. Off it, I experience emotions and get teary at emails. Today, without the new medicine, I was fine. I saw my scleroderma specialist in March and she wanted to see me again in September and have a repeat PFT and Echo but her staff had left when my appointment was over and when I called 5 weeks ago they said her earliest appointment was November and they weren't scheduling yet, to call the beginning of May. I did and got the same story so I asked to speak to the nurse, explained everything to her regarding the fatigue, anger and appointment and have yet to hear back. I will call again tomorrow. I don't know what to do. I know I have been through a lot lately, things that would cause a healthy person to stress out. I don't know if I should add another medicine to the 25-30 pills I take daily. I can't start taking it until I get final approval from my nephrologist about the dosage and timing with my other meds. I am wondering that as things calm down around my home and my personal life if I will really need it. I am the one who requested it. I need some guidance. No fancy fonts or emoticons in this one. You are my "go to" experts and have been through the years. Thank you in advance, miocean
  9. Janey, :emoticons-group-hug: YOUR SITE LOOKS BEAUTIFUL! :emoticons-group-hug: I don't do kitchens but bookmarked it for my husband, who is an excellent cook and thrives on reading cookbooks. May you have much success with it and may many enjoy it! miocean
  10. miocean


    :happy1-by-lisa-volz: My Avatar is self-explanatory. :happy1-by-lisa-volz: This is a view of my beach in NJ, looking north towards the jetty. I am sorry Snooki is not in it! :glare: miocean
  11. :emoticons-group-hug: Susieq :emoticons-group-hug: That is such great news! You are an inspiration! miocean
  12. I'm so happy for you! :emoticons-group-hug: miocean
  13. Hi Dawn, Joining the club with celebration of the great news! :emoticons-line-dance: miocean
  14. Hi Indy, I have diffuse scleroderma. I was a runner, too, although my runs were 3-5 miles a couple of times a week. One of the first things I noticed was I would get tired, but it wasn't my legs, it was my lungs. Rather quickly, other symptoms appeared. My blood pressure went really high, I'm talking 200 over 120, and I had a crisis where I coded twice and my kidneys failed. I was hospitalized at the time so I was helped immediately, thankfully. At that time, 2004, the leading cause of death from scleroderma was kidney failure, with a life expectancy of 5 years according to the internet, so of course, I thought I was dying. I found this forum and found others who had long beaten those odds, even with kidney failure. There have been improvements in treatment for kidney disease with faster diagnosis, medications and dialysis and now the leading cause of death is Lung Disease, with a 2-3 year expectancy. I also have had this since 2004 and I am still alive and kickin'! Don't believe everything you read on the internet. I am so glad you have found this forum and hope you continue to post. It's a frustrating disease, because everyone is different. There seems to be times where the disease progresses, and other times where it plateaus. A specialist will be an asset to your medical team which, unfortunately you will probably acquire along the way. miocean
  15. Hi Margaret, I am so sorry :( to hear that Gareth is experiencing problems again. At my last scleroderma specialist appointment a couple of weeks ago she whipped out the "something or other necrosis". All I heard was the necrosis part and said, "well that means death" and she told me the only thing for it was a hip TRANSPLANT which I had never heard of. I researched it and it seems to me like transplant and replacement are interchangeable. (Someone correct me if I am wrong). Here is the Mayo Clinic page for Avascular Necrosis . Steroid use can cause it, and it mentioned Lupus, so to me that links to scleroderma. Also heavy alcohol use, which I'm sure is not the case with Gareth. I'm glad your doctor likes Gareth, that is so important with his disabilities. I have a non-verbal sister-in-law who is mentally disabled. She just had a hip transplant (age 40+) and did very well. She actually recovered quicker than those I know who have had one. I guess she was in so much pain and unable to communicate it that anything was an improvement. The nurses all loved her and they had no problem understanding her needs as she has her own way of communicating and understands most of what you say to her. I am having problem with my thumb joint right now and will bring this up to the hand surgeon I will be seeing and also my nephrologist because dialysis and kidney failure can also cause it. miocean
  16. I found this very interesting as it begins "After his death "...he was diagnosed. According to Scleroderma and Paul Klee he "died at the age of 60 in Switzerland due to severe scleroderma, which was diagnosed in 1936. From this time on, this connective tissue disease had followed him continuously and had strongly influenced his enjoyment of life, personal development and creative power in art work, before finally causing his death in 1940." I just had a conversation with Shelley about how scleroderma deaths are usually put down to other causes. My mother-in-law's death certificate reads congestive heart failure although it was scleroderma that caused her body to shut down. How would scleroderma be diagnosed after death? miocean
  17. Sherrytrifle, I've had several endoscopies and colonoscopies. When I had my first colonoscopy I didn't quite go to sleep, even though I was sedated. I didn't feel anything and didn't have my contacts in so couldn't see that great but saw the inside of my colon on the monitor. When the doctor said he was going to take a biopsy, I could see the pincher thing go out and back. For the other ones I was out like a light. The worst part is the prep for it the day before, :temper-tantrum: be prepared to have to drink yucky stuff and be near a toilet. You have to be on a liquid diet the day before and can't have anything red or purple. You will go into recovery after it and they will tell you it's ok to pass gas as a lot of air goes in you colon during the procedure. The doctor should talk with you immediately afterwards and tell you whether any polyps were found, biopsies were taken, or if you have diverticulitis. Mine took pictures and showed them to me. I have had a couple of polyps, all benign, and have slight diverticulitis but it doesn't bother me and I don't eat a special diet for it. The same thing with my first endoscopy, I didn't quite go out and it was awful, they had to hold me down and I felt every minute of it. Everyone I have had since then I was out and didn't feel a thing. The very worse part of either of these procedures was trying to get the IV in my arm as I am a hard stick, although that has improved as my skin has softened. Are they looking for something in particular, are you having symptoms, or is this just a baseline test? I hope you do well, welcome back, and keep us posted. miocean
  18. Dear Margaret, I'm sorry to hear about Gareth. I hope you get an answer on Friday. :emoticons-i-care: miocean
  19. Yes, Amanda, I too am a little late in wishing you congratulations on being a grandmother. :emoticon-congratulations: I never had a baby myself so grandchildren are not an option and most of my friends are posting pictures of theirs now and they are just the cutest things! :emoticon-hug: May her life be blessed with health and happiness! miocean
  20. Well, I never knew it was called Valley Fever :blink: but when I visited Las Vegas after having my kidney transplant I had to wear a mask there because there are certain parts of the U.S. where you can pick up bacteria from the soil and it's a very long word that begins with a "c" so I guess that is it. People with weakened immune systems are very susceptible to it. I have to be very careful around soil, in general, because of the bacteria, and am not allowed to garden. That is fine with me because as much as I love the look of flowers I do not like planting them so my husband does that. I have Interstitial Lung Disease and my lungs have shown a spot on them for years that none of my doctors seem worried about. :emoticon-dont-know: I see my pulmonologist soon and will have all my scans and reports with me so I will question it. It's odd about how we can test positive/negative for certain things. I am positive for Epstein-Barr Virus, yet never had mono or anything other than a flu. I found out after my transplant that I am positive for CMV Virus but so was my donor so the likelihood of getting it active again decreases for me, especially now that I am a year out. In September my Pap showed active HPV Virus but this month it did not. It sure sounds like I have Herpes but I have never had genital warts or even a fever blister on my lips that I can remember. I did have Chicken Pox. It sounds like the majority of people have these diseases without even knowing it. I guess we should all live in glass boxes and wear masks and gloves when we go out. :blush: miocean
  21. Jean, I am sorry you are having issues with pain :emoticon-crying-kleenex: and that there is no magic pill to fix it. You may want to investigate a chiropractor for your back pain but make sure X-rays are taken before he/she manipulates you. I've always wanted to go to Paris! Enjoy yourself :emoticons-line-dance: I've discovered you just do what you can do and try to make the best of things. miocean
  22. Dear Jeannie, :temper-tantrum: I am so sorry you are having pain AND hair issues! :temper-tantrum: I will be on prednisone the rest of my life as it is the protocol for my transplant. I have read of people who have had 4 hip replacements since their transplant. When I was at the scleroderma specialist she mentioned a hip TRANSPLANT! :emoticon-crying-kleenex: Never heard of it, has anybody else? miocean
  23. This donation was in memory of my mother, for her birthday. For the past several years I have been unable to travel to her gravesite to place flowers, which has made me feel very guilty because she was always the "grave tender" in the family. I have memories of being very little and going to the cemetery with flowers from her garden. Although this year I could have made the trip she always said "you can do more for the living than you can for the dead." miocean
  24. :emoticons-line-dance: I saw a tree starting to flower with pink blooms and forsythia today!:emoticons-line-dance: But it's still on the cold side. miocean
  25. Hi Christine, I am sending you a link to brain fog from an earlier post. Although when I discussed this with my sclero specialist she did not feel it was related to the disease and neither did my nephrologist think it was related to an anti-rejection drug, Prograf, that I take for my kidney transplant, many on my transplant forum complain of ADD like behavior. :emoticon-dont-know: However, I, personally, have notes all over the place and find it difficult to retain information. Always a good student and quick learner I now find things take longer to absorb and I really believe it is a combination of the disease, medication, and age. The only solution would be more testing and more medication, so I just have piles of papers, stickies and notes on my phone, alarms set to take medications, and I try to write everything down. The trouble is finding where I put it, especially since I knocked my "organized" pile of notes on the floor and now can't find anything. Or I take a note and then later don't know what the note means. :blush: miocean
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