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miocean

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Everything posted by miocean

  1. In a Palliative Care program

    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
  2. Scleroderma or Diabetes

    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
  3. 6 months today!

    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
  4. I'm happy today because....

    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!
  5. Hand spasms /cramp

    I had hand cramping while on dialysis. Toward the end of treatment my thumbs would fold inward and my index fingers would bend tightly. It was very painful. Sometime, during the course of the day the same thing would happen. The only thing I could do was straighten them out, not easy, and hope the pain would go away. One morning it happened in Occupational Therapy and I was able to show my therapist but he didn't have an answer for it, just figured it was from dialysis the night before. I thought it had to do with the potassium in my body.
  6. What do you want to do before Autumn arrives?

    First of all, I want to enjoy every day that's left of the summer at the beach. It goes by so fast, even as brutally hot as it was where I live this summer. I am now shopping for fall clothes. I've decided I LOVE sweatshirts better than sweaters and everything I had was so old and now is too big that I have picked up a couple of new ones. I am also buying long pants and jeans. I don't know if you remember, but I cleaned out my closets and drawers after my transplant and got rid of everything that didn't fit, now I am even smaller so I am sorry that I got rid of some things. Of course, they changed the styles of pants so skinny is in and I love my bell bottoms. Getting some straight legged jeans, I just can't wear the really tight ones. I have a bunch of warm, cozy blankets because the dialysis unit was so cold so I am all set with that. I will be looking for a pair of black leather gloves, mine are so old they have holes in them but they are so warm I hate to give them up. I want to get together with all my teacher friends who get too busy during the school year. Summer just doesn't last enough! miocean
  7. Do research on the medication and it's side effects so if you do take it as prescribed you will know what to expect. Just remember, they will tell you EVERY side effect and many are rare. Bring the info with you so if you do get side effects and have to seek medical help it will be available. Your vacation sounds wonderful. I live at the beach and am fortunate to be able to enjoy it almost every day in the summer but I have always dreamed of going to Paris. Maybe someday. Enjoy your trip! miocean
  8. I'm new here

    KSA, I am not familiar with morphea as I have diffuse scleroderma but I can tell you that most of us have gone through what you are experiencing. The internet will scare you to death reading about the disease and treatments. Doctors are unfamiliar with the disease. This site is the best resource for accurate information. Not only does it provide a wealth of information on many subjects, the forum members can offer good advice having dealt with the disease themselves. You have already received good advice and links and I second all that has been said. I wish you the best in finding the help you need. miocean
  9. Thank you to the Sclero forum for posting this and to all my forum friends. I've said this before and I'll probably say it many times again, but I don't know what I would do without you. I've asked my sclero dr. about children with it and she said it is rare in children yet I read posts from parents about their children. I have looked for pediatric dialysis patients in this area but haven't found any yet. I guess that is a good thing. I just know how hard both things are and can't imagine going through it as a child. We have our first dream child now. She is 17 and when she was 12 got a tumor on her elbow. She just had her 8th surgery on it, fortunately it is benign. She wants to meet the Jonas Brothers. Her mother already bought tickets for her and two friends so we are getting them a limo, buying her a new outfit, and somehow are getting them to meet with her. They are from this area and do a lot for charity so we have high hopes of it all coming together. It's so nice to have a purpose once again. miocean
  10. Trouble Sleeping

    Well, it's 12:30 a.m. and I'm on the computer because I was just laying in bed. I know it's a combination of meds and iced coffee. I wake up exhausted in the a.m. because I am up so much with my kidney. But this is better than sleeping all the time like I did on dialysis. I took sleep medication for a while, and sometimes take anti-anxiety meeds before I go to bed but I still take a while to fall asleep. I have more energy now than I did before but wish I could sleep like my husband. He lays down and is out in seconds! miocean
  11. Surgery is scheduled!!!

    It's interesting to watch procedures sometimes. Years ago I had sinus problems and the ENT sent a camera up my nose and I watched it on the T.V. I had polyps and they looked like bunches of grapes inside me. Surgery removed them and I haven't had a sinus infection since. When I had my first colonoscopy I didn't quite go to sleep. 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. 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. For my first heart cath I watched on a screen and saw the camera or whatever it was go through my veins to my heart. I always watch when they draw blood, want to see it go in the tube. But then my husband passes out if he sees a needle! miocean
  12. I have diffuse sclero. One of the first things I noticed when I started feeling ill was when I ran my lungs would hurt, not my legs, which I thought was odd. I have had ILD for 6 years and PH since Jan. 2010. I plan on living much longer than the two to three years prognosis. Fortunately, my lungs have been stable for the past few years, the PH is new. Since my transplant I am breathing better, don't know why it would affect my lungs but I'm not complaining! miocean
  13. One of those foolish sounding questions

    As someone whose kidneys failed and was on dialysis 5 1/2 years before a transplant YOU DON'T WANT TO MESS WITH YOUR KIDNEYS!!! I ignored the signs, my doctor's didn't pay as much attention to my creatinine levels as they probably should have and I paid the price. Get to the doctor! Good luck and I hope it ends up to be nothing. miocean
  14. Congratulations Jeannie!!! Thank you for your contributions, may you always maintain the energy to keep up with all the demands you place on yourself. miocean
  15. 4 months now

    I hope I'm not boring you with my updates on my transplant. I am doing so well, it gets better everyday. Finally my Prograf levels are where they should be! My White Blood Cell count had dropped very low so my doctor changed the doses of my medications and took me off an antibiotic and it is now almost normal. I only have to go for bloodwork once a week now! Fortunately, the phlebotomists at the hospital are very good, I have only had a couple that haven't been able to get the vein. I thought that the extreme exhaustion I was experiencing on dialysis was scleroderma fatigue. It is definitely better now, however NOW I know what scleroderma fatigue is like. I still get so tired but nothing like before! I am sleeping well at night, my bladder has finally settled down, yet by the afternoon I am very tired and I don't do that much during the day. My husband and I went for a short walk down the boardwalk the other day and I could barely make it back. But at least I am walking now. Little by little. I had been lurking on a transplant forum since mine and today, in celebration of my so far successful one, I joined. The ISN forum has been so helpful to me, and the transplant one gave me so much needed information that I hope I can return the favor on both. It is scary to have a chronic disease that very few people have even heard of and the internet can make it worse. To hear real life experiences makes it so much easier to bear the effects of the disease. Once again, thank you all. And today, as everyday, thank you to my donor and his family for this gift of life. I know more than likely they won't want OUR organs, but please urge all you know to become a donor. Besides having it noted on your driver's license, it is important to notify your loved ones of your wishes as they can override your request. miocean
  16. New to the forum

    Sis, Itching seems to be an issue that affects most of us, especially in the early stages. I tried so many different things for it both topical and internal and nothing really helped. Part of my problem is I was taking long, hot baths. Over the 6 years I have had the disease the itching has gone away. I don't take hot baths anymore and my skin has softened which I think has helped. In the beginning my hair fell out, too, but it has grown back. I am now on Prograf which cause hair loss and my brush is full of hair again but it doesn't seem to look thinner. My hairdresser said I have baby fine growth in the back which to her meant hair loss. Wishing you the best. miocean
  17. Vitamin D

    MicheleM, Sorry to hear you have had such a hard time of it. I never heard of your problem before and hope you have a full recovery. As far as vitamin D, when I was on dialysis my level was low so they gave me it through the dialysis machine. When I saw my Scleroderma specialist last month she said I should be taking between 400 and 800 units a day. I checked with my nephrologist and even though my D level was in the normal range he told me to take 800 units a day. I have been doing so but haven't noticed any effect from it. miocean
  18. I saw my doctor today and he thought I was doing so well he took me off Wellbutrin so I am now not an any anti-depressants. He also said I don't have to see him again unless I feel I need to. One less med is fine with me. I feel so much better since the transplant even though things are not perfect. I am having trouble with my Prograf levels, which could cause rejection, and my white blood cell count is very low, which could cause infection. My doctor is on top of it and adjusted my doses, I am wearing a mask again in public and have to stay out of the ocean for a while. Better safe than sorry. It is nice to find joy in life again! miocean
  19. Is anyone's body like mine?

    Honey, I have never had the good fortune of being happy with my body. I was a fat teenager, thinned down a little in my early twenties due to walking the beach a lot and having to cook for myself, went up to 200 lbs. in my 30's, dropped to 140 by working out and running, gained 30 lbs, lost it when diagnosed with scleroderma, gained it again on dialysis for 5 years, lost it over the past six months through illness and a kidney transplant. I am now very happy where my weight is and am determined not to gain again. I weigh myself every day and keep an eye on it because it seems the only way I can lose weight is to get sick and I don't want to do that. However, from all the changes, at 57 I have the saggy skin of a much older woman. My inner arms are wrinkly, my thighs saggy, my stomach wrinkled. I still wear sleeveless tops and shorts and a bathing suit and try not to care about it. I figure I have been through a war and so far have come out winning. I have scleroderma mouth with many vertical lines yet recently people have been commenting about how much younger I look. Count your blessings. I think it is much harder if you had a great body to deal with one that isn't. Accept what is. If you want to put on weight, try milkshakes, cookies, candy and ice cream. It worked for me! Good luck, miocean
  20. Sorry I keep disappearing - Update

    Linda, I think you are making a sensible decision. Many wait too long before admitting they need assistance. I hope you will be happy in your new home and that you and your daughter will spend many moments together. I am so sorry to hear of the progression of scleroderma. This disease is just full of surprises. May your shoulder heal quickly. It must have been very scary to be alone and unable to move from the tub. At your new home you will have people taking care of you for a change. Best wishes! miocean
  21. I'm happy today because....

    I'm happy again today because for the first time in 6 years I went in the ocean! Before sclero I swam a mile almost everyday, then with the dialysis catheter I couldn't get wet. All I could manage to do was get in and float around a little but it felt marvelous. miocean
  22. Do you use a laptop or desktop? Is it a mac or pc? I have both but prefer the desktop. They are both macs. My desktop is old and the monitor doesn't work well so we are buying a new one. We went yesterday to look at them and are going back next week to get it. They will move all the things off my old computer to the new one for me. I am excited! I got my laptop when I got sclero, I didn't know how sick I would be and whether or not I'd be able to go up and down stairs. Fortunately that hasn't happened. miocean
  23. what kind of computer do you use?

    It took long enough but I FINALLY have my new iMac. What a difference from my old g4 Cube. I can read the monitor and watch videos and photos now. It is beautiful! It has a few bugs I have to call support for but they will get worked out. I had an independent tech come out to hook up the wireless and I'm glad I did. It took him 3 hours, can't imagine what it would have taken me. He had to do a special connection with my wireless printer to Time Capsule, a back up drive and modem, because the printer is too old for it. He also did some work on my laptop, ends up the reason it was jumping off line so much was it needed a new airport card. He said he would have it for me by the end of the week. It is nice to be up to date again. miocean
  24. Six minute walk test

    I had my fourth six minute walk test today at the hospital where my scleroderma specialist is located. I did research on it before I went and found out that the one I had last year, at a local hospital, when they determined I needed O2, was done wrong. There are very specific directions on how it should be done. The same man did the test as my very first one. I had a forehead oximeter and was connected to 02 in case my level dropped too much. When I was finished he said I did very well. I asked if they had to use the O2 and he said no. He faxed the results to my scleroderma specialist who I saw a little while later. She said the results were so good that I don't need O2 anymore (!) so I am calling the company and having them pick it up. The other good news is that my skin score went from a 16 to an 11. I started out at 45 five and a half years ago so there is quite a difference. Between all of this and a working kidney I feel like a new woman! miocean
  25. Six minute walk test

    Well, it seems your congratulations were in order. I sent my current test result to my pulmonologist and he agreed that I don't need the 02. He said I could keep it in case I needed it but I told him Medicare was paying $350/month for it and I am not using it. We decided to remove it and if I needed it bring it in again. They are coming tomorrow to take it out. miocean
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