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Everything posted by miocean

  1. Annie, I am curious, with your disease being so rare, how did you ever get diagnosed? So many on this forum can't get a diagnosis. With me it was easy. I have diffuse scleroderma that came on rapidly with almost every diagnostic symptom plus a positive ANA. Except for the extremely rapid onset, I am classic, and even that is a symptom. Six years ago, my skin hardened all over my body, my kidneys failed, I developed fibrosis on the lower lobes of my lungs, my GI problems intensified, Raynaud's entered my life, and, most recently, I developed pulmonary hypertension. I have been fortunate. Over the years my skin has softened, my lung disease hasn't progressed, and I had a kidney transplant in March 2010. Keep posting. You can help us and we can help you. It is one big, happy family of people suffering and surviving with this rare disease. But YOU have us beat! miocean
  2. I really haven't had any joint pain, which I attribute to a combination of Physical and Occupational Therapy, chiropractic adjustments, and massage therapy. I did all those things for five years on a weekly or twice weekly basis. All but the massage therapy were covered by my insurance. That I had done at my chiropractor's office at a much lower rate than most facilities. I figured since I was on disability and not buying clothes for work or driving the long distances daily that I could afford this splurge. One of my massage therapists used hot stones. I never had a full hot stone massage, but she would put small stones between my toes and have me hold large ones in my hands during the massage. And you can image, with Raynaud's, how good that felt! She would also rub my feet with hot stones. When she left and a new person came on, my chiropractor asked me how she was. I had been through several so I knew that each was different, but I mentioned that I missed the hot stones. He ordered them for her to use with me!!! She tried, but it wasn't really her technique. I have stopped these therapies since my kidney transplant. I now have a prescription for short term OT because my scleroderma specialist doesn't like the way one of my fingers is retracting, and another prescription for PT because I've been having some shoulder pain for awhile. I have been procrastinating going back because they are so time consuming. I haven't returned to chiropractic for two reasons, one is the pressure on my wound when being adjusted, and another is because of the prednisone and how it weakens the bones. Same with massage, I am just now able to lay on my stomach for short periods. I have noticed that I have stiffness that I never had before, and although I wouldn't describe it as joint pain, feel achey. For the five years I had these therapies they were what got me up in the morning and kept me active and made me interact with other people, otherwise I probably would have just laid around waiting for dialysis time. My therapists and chiropractor are great with me and are aware that I am not like an ordinary person and have to be treated gently. If you decide on any kind of massage therapy, make sure your therapist treats you gently, deep pressure massage can do more harm than good, I found. Now all I have to do is make my appointments! miocean
  3. Dear NorthStarHope, Your sister and your family are certainly going through a lot. We put a lot of trust in our medical system. My local hospital doesn't have the best reputation, but I spent 3 weeks there when scleroderma first hit me, and several other visits since, and there was only one mistake. They came to my room and said they were taking me for a CT scan. I told them I just had one and they said this one was for my leg. When I questioned them it ended up they had the wrong room! Otherwise I received excellent care. The hospital my scleroderma specialist practices at has an excellent reputation and knows the disease, yet it is a teaching hospital and as one sometimes it is the resident doing the procedure. I had my first endoscopy there and was promised I wouldn't feel a thing but that was not the case and it was a terrible experience. There were several other things I could complain about but won't go into here. So, unfortunately, there is no perfect situation. I hope your sister gets the fluid in her lungs situation solved and that she gets home. I hope she is comfortable and receiving good care. I wish there was something I could do. I'm sure you feel that way, it must be very frustrating. miocean
  4. I've had such long history with doctors and hospitals that I have overcome embarrassment and modesty. All this leaving the room while I take off my clothes for an Echo makes me wonder why? The tech is going to see me anyway. My gynecologist holds her conference with me while I am half naked on the table with a cover over me, which at first I found uncomfortable because I was used to the doctor conferencing with me in the office and then examining me, but I am used to it now. My gastrointerologist and I have an 18 year relationship and although he is not an expert on scleroderma, is familiar with me. I first started going to him because when I was running a couple of miles at a clip (those were the days) I would sometimes have to duck in the bushes (it was very early in the a.m. so there wasn't anyone around, but still illegal) or I would mess my pants. When I saw him about the recent incontinence he used a very colloquial term!" The doctors in the field know it is an embarrassing topic but think about how many people stay away from their doctor and medical issues because it is, and end up with really serious problems like dying of colon cancer. We all have been poked, prodded, stuck, and embarrassed because of this disease. I wouldn't walk down the street naked, and appreciate the covering provided during an exam or test, but more for warmth than modesty. With a doctor or in a hospital setting I figure I don't have anything they haven't seen or probably heard before. By the way, the fiber supplement has done nothing to improve the piece of stool that constantly shows up in the bowl. I hope I'm not being too complacent but there are somethings I just chalk up to the disease. Just an FYI, after my kidney transplant my wound bled for weeks and even with bandage changes I was ruining underwear so I had my husband pick up disposable ones. There was one or two occasions they came in handy for sudden diarrhea from the Myfortic. If you are really having problems they could help you out. They are a little bulky and I found them hot, but if an accident happened you could just toss them, clean up, and put on a new pair. miocean
  5. There is a previous thread on heart catherization that will be helpful to you. In it are experiences of others and questions to ask your doctor. I've had two and was scared to death for the first but the only bad part about it was it was a very long day. I may need another one in January, making it 3 in 3 years so I am hoping not to. However, it is really the only definitive test for PH. miocean
  6. I wish you both the best! I don't know what I would have done without my husband through these years of sickness. But, I don't know how to cook! Fortunately, he thrives on it. miocean
  7. Hi Jeni, I have diffuse scleroderma diagnosed in 2004. I have had bowel issues for most of my life. My latest development is that when I urinate, in the bowl will be a small piece of solid bowel. I do not feel it coming out. I talked with my general practitioner about it first, he called it incontinence and asked if I ever soiled my pants, which I haven't. My scleroderma specialist said the disease can damage the sphincter muscle and that might be causing it. My gastrointerologist checked the muscle and said it worked fine and told me to take a fiber supplement. I return to him in a month.So far there has been no change. I am on a lot of medications, mostly anti-rejection medications for my recent kidney transplant. One of them (myfortic) causes diarrhea which plagued me at the beginning but seems to have settled down. I just chalk it up to the disease, as I do many issues I have that doctors don't seem to be able to give me an answer on. I'm fortunate, as I do not work and am on disability so I almost always have access to a bathroom, but I was a teacher for 27 years and know how difficult it can be to have access sometimes. Are you on a scheduled program of colonoscopies? Mine are now every two years. If you haven't seen a gastrointerologist yet, add one more doctor to your list. miocean
  8. Jeannie, That's a reason to celebrate! I'm going to have some chocolates right now. The REAL kind. miocean
  9. I, too, lost hair at the onset of scleroderma, but it became thicker again. I always had fine hair, but a lot of it. It thinned out a lot. Over the years it returned to normal. Now it's thinning again, but that's because of Prograf, an anti-rejection drug I am on. I know it's frustrating and affects your self image, but in the scheme of things, it's not the worst that could happen. Part of it is age, and part of it is the changes of scleroderma, but I accept myself for what I am way more than I ever did, wrinkles around my mouth, flabby skin (better than hard skin!) and all. Talk with your hairdresser about treatments that might make your hair look thicker. It might help. miocean
  10. I'm glad to hear your sister is doing better. I hope she is able to come home soon with no future hospital visits. That is not a fun place. miocean
  11. NORTHSTARHOPE, You can only do what you can do. Is she able to talk on the phone? If so, call her if you can't visit and let her know you are thinking about her. Try to go the 30 miles as often as you can. It's hard, I know. My mother-in-law was in a care center 1 1/2 hours away so we only went once a month, and she didn't have access to a phone. She had dementia so we often wondered if she even remembered we were there 5 minutes after we left. I felt guilty that we didn't go more often, but when we went we spent quality time with her. The most important thing is that she doesn't feel abandoned. She is probably too sick to care right now, but I know it bothers you. Hoping she gets better and comes home soon. miocean
  12. I know most people don't want to think about dying but I have always been realistic about the inevitable. When my mother was dying of cancer (it was a long, slow process) my sister and I made all the arrangements, picked out casket and flowers, and talked with her about what she wanted to be buried in. She insisted upon wearing her wig and SHOES! She told us what dress she wanted to wear and although cancer ravaged her body, she looked beautiful (I never thought I would say that about a dead person!) She asked for a specific person from her church to sing a specific song. We wouldn't have known any of these things if we hadn't been up front with her about it. And it took a lot of the stress out of the process after she died, no running around for things or making the arrangements then. Years ago, in the late 90's before scleroderma, a lump was found on my breast. I opted for a "new" procedure then, a stereotactic biopsy rather than a lumpectomy. It was done with needles using the same technology as a mammogram. The hospital I had it done at required a living will, so I made one up then. Thankfully, it was just a cystic lump. I lost that living will so downloaded one from the internet but mine only includes things about life support. I try to remember to carry one with me to hospitals, dialysis had it on file, and my husband know where to find it. You just made me decide to carry one with me with my medical information (drugs, doctors, contacts, conditions). We also made up wills about 10 years ago, which we are going to revise soon. I will have my lawyer check into a new living will that is more inclusive. I didn't realize certain things were required by different states. In a time of crisis, that is enough of a burden on your loved ones, yet alone to have to make decisions and make arrangements. I remember reading posts about Peanut and how she was preparing for her death by making a presentation to be played at her service and was realistic about it. I know this sounds silly, but I would like to make a multimedia presentation celebrating my life and have Ozzie Osborne's "See You On The Other Side" played. No one knows about this but us now. My husband knows I want to be cremated. I'm interested in others' thoughts about this. We are all suffering from a chronic illness which makes death more of a reality as much as we might not want to admit it. May we all live long and not suffer. miocean
  13. Froggy, After my scleroderma crisis I was put on a GERD medicine. I had never experienced heartburn or reflux but was too sick to question it, I just took it. At one point I decided to stop it on my own and got heartburn so resumed it. I have been on different ones throughout the years. I have had several endoscopies and do have a hiatial hernia but it doesn't cause any problem. I went to my general practitioner about the cough initially. He gave me antibiotics, had a chest x-ray done and it was fine but the cough didn't go away. As I said, it stopped after my transplant. I've had shortness of breath since diagnosis and even though I am off oxygen find that I have to catch my breath after climbing stairs (we live in a multi-level condo with a lot of them) or if I am talking too much. My December CT scan will show if there are any changes in my lungs and from that it will be determined whether or I need another heart catherization. My general practitioner has no problem prescribing pain medications. I am not in pain on a regular basis and when I am take Tylenol, which is the only OTC I can take without doctor approval since my transplant. I hope you feel better. miocean
  14. In regards to the cough... There are posts on the cough. I went through months of coughing, even at night. It got to the point where my husband slept in a different bedroom because of it, I would wake him up. It began when the cooler weather started in September, last year. My scleroderma doctor said it probably wasn't my lungs as all my tests and scans remained the same and said it could be GERD or from Pulmonary Hypertension. I had a heart catherization in January and have mild PH. My doctor suggested getting a wedge pillow to raise my head at night for the GERD. I never did that because in March I had the kidney transplant. I stopped coughing for two reason: one, I coughed once and it hurt so much I didn't do it again, and two, I was in a hospital bed with the head raised. I never did get a wedge pillow and do not cough anymore but as the cooler weather is coming I am wondering if it will happen again. As far as the trouble breathing...I have been on and off oxygen due to interstitial lung disease. I noticed something new around the time I was diagnosed with PH. When I laid down in bed, I would be short of breath (no exertion.) This is one of the symptoms of PH. It still happens, I go to bed and breathe heavily for a few minutes. If it were me I would investigate the possibilities of GERD and/or PH. I hope you feel better soon and that something helps the pain. miocean
  15. I just have to add this to this post. I am very upset with my nephrologist! After such a good report from my scleroderma doctor, who I have always felt is rather cold but good and what she does and who was smiling and thrilled that I was doing so well, I saw my nephrologist. This is a doctor I LOVE, he has been warm, considerate, called me on Sundays after the transplant to see how I was... I greeted him warmly when he walked into the office and the first thing he said was "you look tired." I said I feel great. I told him about the good results from my scleroderma doctor visit. He went over my labs and they were good. My specific gravity in my urine was high last week and I was told to drink more fluids, which I did and it was normal this week. My prograf level had dropped so my dose was increased and it was perfect this week. Creatinine and everything fine. I gained 3 lbs. He said "you're gaining weight." I replied that as long as I stayed around 140 lbs (my weight this week) I'd be happy. He had told me originally that I would gain weight because of the prednisone but I have actually lost a couple of pounds. Then he asked if I wore a mask in Memphis. I said, "You told me I had to wear a mask in Vegas but that I didn't need to wear one in Memphis or Mexico". Well, his reaction to my going to Mexico was VERY negative! He finally said, "Can't you stay within the United States, why not go to Hawaii?" I responded that he told me I could go, "That Cabo was very Americanized." (In 2004 there was a Home Depot, Costco, Superstores and there are two American Hospitals, one has dialysis machines and I heard tonight that there is a Walmart). We are staying in a condo with a full kitchen, we have been there 4 times before and know the precautions about the water, fruits and vegetable and ice. He told me he was worried that I would get parasites and not only could I lose my kidney, I could die! My transplant book says after 3 months you can travel within the US and after 6 months international travel as long as you have access to modern medical facilities. He is checking with my transplant nephrologist to see what he thinks. I could see him having concerns if my tests and labs were bad but that is not the case. I told him I was going for blood work Monday, Sunday and Tuesday the next three weeks because I would be away. He said, "Why are you going for labs so often?" and I said it was because HE told me to go weekly. He had to check the protocol with his nurse and found out that at 7 months out of transplant I should be going every other week. If this had been my first visit with him I'd be looking for a new doctor. He has been great up until now. I know I have been doing a lot, 3 trips in two months, volunteering for two organizations, getting together with friends and trying to live the live I lost for 6 years. I understand he is concerned that I am overdoing it but I do get plenty of rest and a lot of what I do is sitting at the computer, not physical. I just had to vent. Here I have this rather unemotional, cold scleroderma doctor who is all smiles and thrilled that I am doing so well, and a day later, this great, personal doctor who is negative, critical, and uninformed. I am thinking about making an appointment with the transplant nephrologist just for feedback. Maybe he was having a bad day? I know all of you have had your experiences with doctors. What would you do? How should I react? I have already made plane reservations (took out travel insurance, I always do and if you don't you should) and paid for a week in Mexico, the second week is due the beginning of December. I am interested in your responses. miocean
  16. I wish I could help but this is all confusing to me. Last January I was diagnosed with minor PH. I am not being treated for it currently. My sclero specialist said the high normal was 25 but with scleroderma they start looking at it at 20. I got my January numbers from my doctor yesterday. Pulmonary artery pressure was 39/16 right atrial pressure was a mean of 5 right ventricular pressure was 37/16 pulmonary capillary wedge pressure was a mean of 11 Left ventricular pressure was 145/19 Aortic pressure was 142/73. I have no idea what these mean. Any help? My pulmonologist and cardiologist said no treatment necessary at that time, my sclero specialist wanted to put me on Letairis and then the transplant came along and my nephrologist said no. After my CT scan this December I may need another heart catheterization and I have already decided to have it at my scleroderma medical center as she said this test did not give her all the numbers she needs. miocean
  17. Well, we all celebrate for different reasons. Today is the 6 year anniversary of my "death day." On September 29, 2004 I suffered my scleroderma crisis, coded blue twice, and went into chronic renal failure. This was after feeling sick since February so diffuse scleroderma came on me extremely suddenly and changed my life forever. Thankfully, I was in the hospital when this happened or I would have died at home. It's been an "interesting" six years with many changes in lifestyle. After reading the internet I truly believed I would be dead in five years. I found this forum and realized that many survive for years and there was hope. And Amanda kept on encouraging me with "there is life after scleroderma." Forward to 2010. I am almost 7 months post-kidney transplant and am doing very well! I am off oxygen, off anti-depressants, and best of all, have kidney function. I still have scleroderma and always will and things will change as time goes on. Some changes for now: I had a PFT today at my scleroderma doctor's medical center as per her request. I walked into the room and saw a very different machine than at my pulmonologist. I asked "where is the black bag?" and was told they haven't used a machine like that for 3 years. It made my doctor's look like an antique. I don't know whether it was the machine or me but my numbers improved since my last test! I have interstitial lung disease but it doesn't seem to have progressed over the years. I have decided to have my annual CT scan at the same hospital. When I was first diagnosed, my sclero doctor required me to have them there and read by a certain radiologist, but I have been doing them locally over the past several years. Not anything about small town medical facilities, but the six-minute walk test I had done locally in 2009 was done all wrong. Based on the findings of the echo my doctor will determine whether I have to get another heart catheterization. Again, the first one I had was done locally and the doctor did a left heart cath which doesn't give the needed info and the one I had in January (locally but at a different hospital) was a right and left heart cath but still didn't give my specialist all the info she needs so I will have it done at her hospital. I also had an echo at the hospital today. I was not a good patient. Apparently, the requirements have changed and more pictures have to be taken so the test is now 30-40 minutes. Mine took an hour! The room was cold even with blankets, I had the yawns and had trouble laying still and you can't move so things had to be repeated. If there is anything major wrong the doctor will be notified immediately, if not she will send me the results in a week or so. My visit with my scleroderma doctor went very well. She was amazed at the difference in me, even since she saw me in June. She said to my husband, "Look at her!" My skin score went from 11 to 8, I started at 45! I have some tightness around my ankles and feet but I was hard as a rock all over 6 years ago. She deleted depression and renal failure off my chart! I don't have to see her for 6 months! She wants me to return to Physical Therapy for tightness in my shoulders, and Occupational Therapy for my hands for a month. I will have to get this approved by my nephrologist because of the use of the facilities by multiple people and their germs and my weakened immune system and hope he says it's okay because I love my therapists. She said just shower when you come home. I have come to the conclusion that germs are everywhere, things are always being brought to my attention like, did you know, restaurant menus are full of germs because they are never wiped off and you should never let the waitress put them on your silverware? I can't tell you how many pills I have dropped on the ground because of my bad hands and still taken! So I have had plenty of germs. The calcinosis on my buttocks is another issue I deal with. My nephrologist says no surgery for a year so I sit on pillows and carry around a portable gel cushion. My dermatologist told me she could remove them in her office, but when I saw her Practitioner last week she said they are so widespread I might have to go to a general surgeon. If they removed them all I would probably need a skin graft, which my scleroderma specialist said would be extremely difficult for me to heal from and I don't want one. If I can have the one really painful one removed I'll deal with the discomfort of the others. So I'll deal. She was happy to hear I was involved in things again and was interested in the dream granting non-profit I am involved with. I told her I was now the e-Newsletter Manager for the International Scleroderma Network and she was happy to hear that. She was familiar with the Network. So today I celebrate the bad and the good. Celebrate what you can, enjoy the little things, keep hope in your heart. Always remember the friends and family in your life are the most precious gift you will receive and treasure them. Thank you for being there for me and I rejoice in knowing you always will be there for me and others. With gratitude, miocean
  18. WOW! That's great Lisa. I know you put a lot of work into it, especially so soon after your surgery. Congratulations! miocean
  19. My scleroderma specialist measures my mouth every visit. She says it is back to normal when I open it, but I know my dentist has a hard time with me still. I can't eat a big sandwich, usually in a restaurant I order it without the bread or roll because my mouth won't open wide enough. I have vertical lines all around my mouth, top and bottom.They are REALLY noticeable from certain angles. It's such an obvious sign of scleroderma but I try not to let it bother me. miocean
  20. I am so sorry you are losing a relationship after 17 years. When my father was dying from lung cancer, my mother just couldn't handle it, and his sister had to come to take care of him. Illness is difficult for others to deal with. They don't know what to say or do and may resent the burden it places on them. I'm thinking of you. miocean
  21. Judy, I, too, had never heard of Palliative Care. So many people are afraid to bring in Hospice because it tends to sound like a death sentence. It is great to know there is another option. I wish the best for you. miocean
  22. My scleroderma specialist will not see you unless you have been diagnosed with scleroderma. Maybe that is the reason yours wants the referral. I have many doctors, as we all do, and they don't confer with each other. My nephrologist has contacted my transplant neph about my Prograf level and he agreed that the protocol was what he would follow. I am beyond my Primary Care Physician. He is great at common things and giving prescriptions but is way too busy to coordinate my care and knows very little about sclero, thankfully I don't need referrals. miocean
  23. I'm happy today because yesterday we fulfilled the dream of our first "Dream Child." She is 17 and suffers from a bone disease that has caused her to have 8 surgeries in the past 5 years. Her dream was to meet the Jonas Brothers. It wasn't easy, but we were able to make it happen thanks to contacts from Hollywood Records. She was thrilled!
  24. The time has passed quickly but today is the 6 month mark of my transplant. I am doing really well. My white blood cell count (WBC) keeps going up and down but my doctor doesn't seem to be concerned, says that happens, I just have to be careful that I don't catch a cold or get an infection.The frequent urination at night is slowing down. I still get up a couple of times a night but nothing like before. I have so much more energy and in many ways am back to my old self. I've made the effort to see my friends, something I didn't do while on dialysis, either because it took up most of my time or I just didn't have the energy. I met with my childhood friend for lunch the other day and we spent 4 hours talking. I am meeting with friends I used to work with and have a new group of friends through the non-profit I am involved in. I have come to realize through my illness that friends and loved ones are the most important things in life and should be treasured. The new thing is I am very stiff especially by the end of the day. I am attributing it to being more active and scleroderma. I see my specialist the end of September, am having an Echo and PFT then as well. My skin is soft again and I have expression in my face. I am very grateful to my donor and his family. I sent a card to them through the Organ Sharing Network updating them on my good progress and thanking them for this gift of life. miocean
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