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Everything posted by miocean

  1. Hi Judyt, I have a fitness center a long block away that is part of the hospital I just went to look at but does not do Pulmonary Rehab. They have Physical Therapy upstairs and a small therapy pool but I went to a different PT program. I belonged to that gym for years and did weights, aerobics and yoga. I hired a personal trainer who was great. She left that gym when another new one opened in town and many people went with her so I followed. A month later I got sick. I paid my membership for 6 years, all through the time I was on dialysis and hardly ever went. When I got the kidney I was told no gyms because they are too dirty (my nephew got ringworm from his) so I quit. I used to be a gym rat but find them rather depressing now. Your gym sounds great. I used to have a heart rate monitor but gave it to my niece thinking I would never use it again. I know how to take my pulse and can tell when I am getting short of breath. However, two of my neighbors go to the gym down the street and I really like both of them. It is a little older crowd, not body builders and model wanna bees but not old AND sick. I'll be keeping it in the back of my mind. I could also go back to my personal trainer, she has her own private studio now, mostly Pilates and massage and she teaches yoga at a nearby location (and I gave my yoga mat and exercise ball away). One step at a time for now and for now it's walking for me. I'm going out to lunch today with one of the neighbors mentioned above to the next town north, also a lovely little shopping district and we'll probably walk around after a delicious, locally grown, fresh meal. miocean
  2. I was all set to return to rehab. I called the hospital I started at and asked about starting up again and I need to submit all my recent tests and then they said they might not have room for me. Since I wasn't really happy there I decided to go back to the other hospital which I ruled out originally because they administered a 6 Minute Walk Test to me incorrectly and I was put on oxygen. My lung and scleroderma specialists have since ruled out that test as invalid, so not only did I have to carry O2 and have a converter in my house but it cost my insurance company a lot of money. In order to return I would have to get clearance from my pulmonologist and have an appointment for next week. I happened to be there today for Nutritional Counseling and it is right at the rehab so while I was there I asked if I could see the facility. I was brought into a large area, part of which is open to the public as a gym (one of the reasons I was against it in the first place due to germs) and a side area for rehab. The people there looked old and sick (same as my last location and I found that depressing). I asked some questions and found out they would use a finger oxomiter. When I explained that doesn't work on me due to Raynauds they said they could use an ear probe. I told them that was what was used for my 6 Minute Walk Test and that it was found to be invalid by my specialists and that I needed a forehead probe. They said they didn't have them there, I said I would buy one if I had to. End result is I left there KNOWING it is not the right place for me, I will be unhappy and my readings won't be right. I am planning on calling my pulmonologist tomorrow and cancelling next week. I just can't justify spending my insurance company's money again. I have decided just to work on my own for now. My husband and I have started walking into town in the evening, a delightful little place full of shops, galleries, and restaurants. I have seen the town go through several stages over the years and it is now in a revival and quite beautiful for the holidays all lit up in white lights. It is just a couple of blocks away. This time of year the way the wind whips even on a relatively mild day seasonally the beach is really cold so that is out. I am happier walking and breathing the fresh air even though I walk slowly. I have decided to do what I did when I was a runner, go for distance first and then step up the speed. And my legs still don't hurt!!! :emoticons-line-dance: miocean
  3. Once again, Amanda, I admire what you do so much! It took me a long while on the forum to realize how much you are affected by scleroderma and I know what it took you to do these videos. I am not even be able to get mascara on anymore between my hands and being blind as a bat without my glasses! I used to love wearing eye makeup, lots of pretty colors of course, but now it ends up all over the place so what you see is what you get. "There is life after scleroderma." Amanda Thorpe I lived by those words for so many years and they have been a lifeline to me. miocean
  4. Dear Sweet, There are several medications for PH. Right before my transplant I was diagnosed with it through right heart catherization and echo and applied to be started on Letaris ( the LEAP program) but the transplant prevented the introduction of any new drugs with the anti-rejection ones. I was very concerned about the drug when I researched it so was happy about that. A right heart catherization, done by a person who KNOWS WHAT NUMBERS TO GET FOR SCLERODERMA, is the gold standard for diagnosis. My specialists said the two heart catherizations I had that were done by cardiologists locally did not give them the numbers they needed. If I need to have another one I will have it at my scleroderma center. And remember, if they do a heart catherization and they are only checking pressures and not looking for blockages they should NOT USE DYE. It can kill the kidneys. Best wishes and keep us posted. miocean
  5. Kamlesh, Just wondering, how long have you been off the statin? I was having terrible leg pain and took myself off it and it took 2-3 weeks for me to really feel the difference. miocean
  6. Hi earthblaze, A lot of good advice has been given to you, some that I needed to read again. And you have given good advice, reminding me to deal with it at the time. miocean
  7. :emoticons-clap: :emoticons-clap: :emoticons-clap: Great job Amanda! :emoticons-clap: :emoticons-clap: :emoticons-clap: "But you look so good..." If only they knew. miocean
  8. Hi Hikerwoman. Welcome! You have received good advice from all of the above posters. I have diffuse scleroderma so I can't add anything except that when it comes to medications you and your medical team need to discuss the risks versus benefits. For instance, I have a 21 month old kidney transplant and take some pretty serious drugs to prevent rejection. They cause cancer, anger issues, bone loss, and GI issues, which I am dealing with as they arrive. Right now the cancer has been limited to squamous cell carcinoma (skin cancer) but the reality is without them I would lose the kidney and life on dialysis is difficult as well. The best advice I've received and can give back is keep copies of all your records, tests, anything you can get your hands on and keep it organized. It is difficult to gather it from different locations and doctors if you need it. And become active on the forum and let us know how you are doing. We can learn from you as you share with us. miocean
  9. You can't always go by the numbers: It is the time of the year when I go through all my testing. This primarily consists of heart and lungs, my major organs damaged by the disease besides the kidneys which have been replaced by a kidney from a generous person and is a great gift. I know enough now to be able to read reports and ask for certain numbers and when these tests started coming in the numbers were not good. I had my appointment with my scleroderma specialist today and frankly, I was scared. I told my husband, "I feel like a soldier going off to battle and I don't know how I'll come out of it". Of course, he was right there by my side through all the testing and the doctor visit. After my doctor visit today I feel so relieved!!! Yes, I have a chronic disease with major organ damage but my fears were not realized. I don't need another heart catherization or have Pulmonary Hypertension, and although I have aortic valve stenosis (hardening) it is no greater than a person my age would normally have. The report on the CT scan of my lungs is not in yet so I don't know anything about the fibrosis increasing but according to the dr. and looking at the other tests it probably hasn't. I'll keep my fingers crossed on that one. When a new symptom appears note it you have had any changes in medication: A couple of months after my transplant I was put on Prevastin for cholesterol control as the anti-rejection medications cause high cholesterol. Several months later my legs started to ache. I went to my general practitioner about it and we ruled out all the causes of achey legs except Restless Leg Syndrome. There are no tests for that. The statin did not come up. I tolerated the pain in my legs until I started Pulmonary Rehabilitation in October when an easy workout would put me in bed for hours in pain. It was incredibly depressing. I felt extremely handicapped and worried about my mobility and quality of life. I began to feel guilty that I was given a kidney when I have so many other issues and the kidney could have gone to someone else. I heard that statins can cause leg pain so on Nov. 8th I took myself off the statin and stopped rehab. Lo and behold the pain is GONE!!! So now I can go back to rehab and get myself in better shape. And my depression has lifted. I also noticed that I had some anger issues since my transplant. Prednisone, one of my meds, can cause anger but every dr. I brought it up to has said "not at the low dose (5mg/day) you are on. I KNOW I am not reacting to things in my usual way. I brought it up with my scleroderma doctor and she said even 1 mg can cause anger issues. I thanked her so much for validating me! The best news is my skin has softened from a 45 on a scale of 0-50 to.........0!!!! Thank you for traveling with me on this journey. miocean
  10. And I thought I never win anything! :D :D :D miocean
  11. Hi Vanessa, My skin hardened very rapidly. Within 6 months I was 45 on the Rodnan Skin Score with a scale of 0-50. I suffered sudden renal failure and was on dialysis for 5 1/2 years. Around the 4 year mark my skin started to soften and I am now a 5 seven years later. I never had infusions, it was just natural progression. I understand your feeling of being so tight and uncomfortable, and those awful needle sticks. I was told once I was like trying to get a needle into a watermelon. :P They were having trouble getting a vein for a nuclear stress test necessary for pre-transplant testing and almost had to put a central line in for that. Once, for a colonoscopy, I had at least four people picking up my arms and legs looking for a place to stick me and I wanted to cry and say "stop handling me like a piece of meat." Congratulations on continuing to do Pilates through the pain. I was not flexible enough to even bend slightly and my skin hurt so much even the fabric I wore hurt. Before I understood what was going on and being diagnosed I was standing with my feet in the ocean and crying because the waves hurt so much. I am curious, what is "the renal marker"? I hope all goes well and you are home soon. miocean
  12. Thanks everyone! I am happy to say I was able to complete my busy day of testing at my scleroderma center yesterday, involving hours of my time and quite of bit of walking. I got up at 6 a.m. :yawn: and arrived at the hospital on time. The road I have to take turns into a parking lot during rush hours so we were very lucky. Usually I do not have my husband stay with me and he goes off and shops the ethnic grocery store in the area but I was concerned with all the walking I had to do that I might have problems and he stayed with me all day. :wub: My day started with a 6 Minute Walk Test. This meant going from the parking garage to registration, then to Pulmonary, then to the second floor and walking at the fatest pace I could for 6 minutes. This center does it exactly according to protocol, using a forehead probe. I just had one done with a finger probe at the rehab center and desaturated to 83% after 4 minutes. I was given one with an ear probe in 2009, desaturated to 85% and put on oxygen and test that has now been determined to be invalid. The GREAT news is my saturation was 96% at the end! :emoticons-yes: That is the best it has ever been. Then I walked back to Pulmonary and had a Pulmonary Function Test. When I entered the room I saw a large plastic box and questioned it as I have often been asked if my PFT's were done in a booth. It is called a plethysmograph booth. They asked me if I wanted to be tested that way this time and being the adventurous person I am said sure! I don't have the official results yet but the bad news is my diffusion has gone from 43% to 36%. However, I am also aware that numbers are just numbers and they can often be misleading and will wait to see what my scleroderma specialist and pulmonologists have to say. It is confusing to me to have such a high saturation and such a low diffusion. :emoticon-dont-know: We then went upstairs to the cafeteria for a quick bite, then through the hospital and across the street to the Radiation Lab where I had a High Resolution CT Scan of my chest. I have the cd's but will have to wait for the report to see if my fibrosis has increased since last year. Back through the hospital and down to the parking garage to put away all my heavy files, then up and out of the hospital and down the street for lunch. We have never done that before as I just wasn't capable. We walked backed to the hospital and had to go back to the parking garage because I left my script for my Echo in my bag, the back up to the second floor for the test. Back down to the car and on the way home we stopped at an orchard for apples (after all, NJ is the Garden State :happy1-by-lisa-volz: ) then back to home, arriving around 5:30 p.m. My legs didn't even hurt! :emoticons-line-dance: I still had spoons! :spoon: Today I feel like I have mild shin splints, a familiar feeling from my days of running. I took it easy today so I can be good for tomorrow in NYC. But I am not completely debilitated. :emoticons-yes: Next week I see my sclero specialist and in January the pulmonologist at the center. I will let you know what results I get. miocean
  13. I stopped the statins on Nov. 8th and am happy to say my legs are a lot better. They no longer ache in the evenings with normal exertion. The true test will be the next coming days. Tomorrow I go to my sclero center for a full day of testing starting at leaving here around 7:30 a.m. and getting home around 5 p.m. The testing is spread out throughout the day so my husband and I are going to try and explore the area around the hospital. Then on Saturday I am going into the city (for those of you not from my area, the only city is New York City :P ) and will be doing some walking. Not to the holiday areas or the Occupy Wall Street :rolleyes: but to small specialty stores and some Thai food. Both days will involve more activity so I will be letting you know how I do. miocean
  14. Amanda, I am still bumbling. ^_^ Additional Information About Searching - Advanced Search: To the right of the search bar is a gear. If you click on it you will open a window with specific information to enter to refine your search. The more you enter, the more you can refine your search. For instance, I entered my screen name under "Find Author" and 7 pages of my posts came up but they did not go all the way back to when I joined, only to 2010. I added "renal failure" under "Find Words" and received links to posts in 2009. I then searched under my screen name in "Find Author" and put in "Dates" from January 1, 2006 to present and posts from back then came up. Searching this way is not only a great way to get information but provides you access to your medical issues! So often we forget the what and when and it may be right here. So now you can see how really :terrific: this site is. Give it a try. to all who work so hard to maintain the ISN for all of us. miocean
  15. I was having difficulty signing in to the ISN on my phone. The sign in area was mostly off the screen and I couldn't log in. When I was on my computer I noticed that in the lower left hand corner of the screen is Change Theme. Thinking it would give me choices of colors or pictures I clicked on it AND...low and behold it gave me the following options: Sclero for PC's Sclero for Handhelds and Mobiles I went back to my phone which has a touch screen and was able to enlarge it so I could open it and change to mobile mode. I am now able to post from my phone! I am wondering if those of you who don't have the ability to enlarge your screen on your mobile device are able to change...? Do you have any tips to help others? miocean
  16. I was having difficulty signing in to the ISN on my phone. The sign in area was mostly off the screen and I couldn't log in. When I was on my computer I noticed that in the lower left hand corner of the screen is Change Theme. Thinking it would give me choices of colors or pictures I clicked on it AND...low and behold it gave me the following options: Sclero for PC's Sclero for Handhelds and Mobiles I went back to my phone which has a touch screen and was able to enlarge it so I could open it and change to mobile mode. I am now able to post from my phone! I am wondering if those of you who don't have the ability to enlarge your screen on your mobile device are able to change...? Do you have any tips to help others? miocean
  17. SusieQ, I was wondering how you were doing. :emoticon-dont-know: Everything you say is so encouraging. Kay Tee, Thank you so much and continue to post. miocean
  18. Forums: If you are new to the ISN and are like I was, you have probably come to the forums first, a wonderful place to be. :wub: Here you get support and learn about others personal experiences as they travel the journey of scleroderma. Amazing! You can ask a question and BOOM!!! People chime in almost immediately. And you get answers and find you are not alone. :happy-day: Believe it or not, many others before you have experienced what you are going through or have questions about. It may have been years ago. You can find these posts by going to the search bar on the right top side of your screen. Enter your query. Then, you have a choice of searching "forums" or you can open a window by clicking on that word and search other areas. Like magic, many links relating to your search will come up. Open the link and you will and you can find out more by reading previous posts than what members are currently responding. You may find some more information there. Medical: Besides the forums there is a wealth of medical information available, thousands of pages, incredible! You will find the Medical tab at the very top of the page. When you open it up it brings you to the pages that include accurate information about EVERYTHING (really)! There is a search bar there. Again, enter your query. You will see you can search many areas of the site: All, Medical, Personal Stories etc. Then open and read what pertains to you. A search may yield you hundreds of links in less than a second. REALLY AMAZING!!! :terrific: I am hoping this helps and for those of you lurking out there, come and join in! miocean
  19. Hi Kay Tee, I am going to let you in on a BIG secret..... :lol: But.......you will have to read my post on How to do a search on the ISN website! :lol: miocean
  20. Susie, I am glad your surgery went well and that you are feeling better. :emoticons-line-dance: miocean
  21. Peggy, Please know that we are all thinking about you and wishing you the best. Kamlesh, Good luck with the Medtronic device. Amanda, I am sorry about your friend. To All, Thank you for sharing the good and the bad of your experiences with scleroderma. The honesty and support found on this forum always amazes me. I don't know what I would do without you. You are the strongest people I know. :emoticons-group-hug: miocean
  22. I was going to put "astrologist" in my original post but thought THAT was pushing it. Miocean
  23. Fragile Dancer, I can't imagine what you are going through. :emoticon-crying-kleenex: I have so much trouble with my hands and am thankful I don't have ulcers. Confidentially, they are one of my biggest fears as my Raynaud's worsens. Here is the ISN medical page on digital ulcer treatment. Please note that you should consult your doctor first. I would like to point your attention to Manaku Honey or Medihoney. It has antibiotic properties. You can find posts about it in a search on the forum. Here are my personal experiences: I got ulcers on my buttocks from sitting too long on a bedpan trying to be the good patient :emoticons-yes: I called my doctor and he told me to put petroleum jelly on and go to the dermatologist. My nail tech told me to get Manaku Honey so I stopped by a health food store (regular honey in a jar marked +5) and bought some to put on them and by the time I saw the doctor the next day they were gone. They were small but it worked for me. I later learned it comes in different strengths and +5 is not very strong. A man at my dialysis/transplant support group is diabetic and has ulcers on his foot so badly he has to wear a special boot sometimes. He started using Medihoney and his came in a sheet that he would cut and put over his ulcers. He claims it works better than anything else but is expensive (?) and hard to find. He hasn't worn the boot for a couple of months now. :emoticons-i-care: miocean
  24. I experienced sudden drops in BP in dialysis. While you are on the machine your pressure is monitored and if it drops, the machine alarms. The nurse or tech would then make adjustments including adding saline. Before you are allowed to leave a sitting and a standing pressure is taken. Quite often mine would drop to 70 over something. They do not let you leave until it comes up. There were many times I passed out. I could feel it coming on sometimes with a wave of nausea, sometimes I would throw up. Some centers would have chicken broth for salt, or mine would give me saltines or pretzels (even though no food was allowed, the nurses kept in hidden ;) ). Worse case would be they would have to open up my catheter and give me saline. So salt does help bring the pressure up. Margaret, maybe keeping some salty foods on hand would also help. Interestingly, when BP drops, they put your head BACK. You are in a reclining chair, so it is easy to do there. I was told never to put my head between my legs, contrary to everything we have all been taught. I have a vasovagal response. My school nurse told me if I ever felt faint to get down on the ground as it is less far to fall, similar to Shelley's technique. :D Tell Gareth HI! miocean
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