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Everything posted by miocean

  1. Addition to #6 Right Heart Catherization; When my scleroderma doctor revisited a repeat of a right heart catherization in the future I expressed my concern over the dye used and the effect on my transplanted kidney. She said they would NOT use dye to determined pulmonary hypertension, that dye is only used to detect clots. A scleroderma patient should NEVER have dye or contrast in tests. So that is another question to ask, or just insist on no contrast. miocean
  2. Erika and others, Thank you all. As far as my hands go, unfortunately they have worsened. Even though I have had YEARS of occupational therapy my fingers curl and I have difficulty holding things. Without the therapy I am sure they would be claws. On top of all of that my carpal/metacarpal joint (the one that connects the thumb to the hand) has deteriorated. I have to wear a neoprene splint now, am in a lot of pain, and will be consulting with a hand surgeon. I have permission from my scleroderma specialist and nephrologist to do this. It will mean, most likely, a cortisone shot or two to begin with and surgery down the road. It is one that requires a long recovery and I am not looking forward to it. I will go and have a baseline done and proceed from there. Has anyone else had this surgery? Right now I am under doctor orders to rest. I have been trying to do too much. Due to a conflict between my pharmacy and my doctor I have been without my anti-anxiety medication for a couple of days and it is really showing. I hate to admit I am dependent on it but after 40 years of use I am. You really don't want to be around me now. :temper-tantrum: miocean
  3. Enjoythe ride, When I called the national SS number they told me they did not know and I would have to call my local office. When I called there I was told I have disability "until my file comes up for review." When I asked when that would be I was put on hold and after a few minutes received the answer "not for a couple of years." They couldn't give me anything more definate than that so I am just going by the 3 year information and will see what happens then. It is so reassuring to know that so many of our futures are in such good hands. :blink: miocean
  4. :happy-dance: Hi everyone. :happy-dance: I titled this my favorite quote from Amanda Thorpe. It helped me through some very rough times. Keep it in mind when the going gets tough, I hope this bit of news will encourage everyone: Seven years ago when diagnosed with scleroderma my skin score was a 45 on a scale of 0-50. A couple of years ago it went to 28. After my kidney transplant it went to 11...then it went to 8 and now (drumroll) it is 3 miocen
  5. Hi Christine, Welcome to the best place for information, humor, and support! You are probably at the "scared to death" stage, I just want to let you know that I have had scleroderma for 7 years with renal failure and interstitial lung disease (the major causes of death) and I am still alive and kicking'! If I had gone by what I read I would have been dead four years ago. When I found this forum I discovered others who were beating the statistics and it motivated me to go on. So stay calm, be informed, ask questions and don't' read to excess the horror stories on the internet. :emoticons-group-hug: As a matter of fact, read my newest post for some GOOD news! :emoticons-group-hug: miocean
  6. I have a friend who has been turned down many times for SS Disability (not scleroderma) by the same judge. Her attorney has finally requested a different judge. She is currently in the hospital, almost died. That's pretty disabled. Again, I received disability for renal failure not specifically scleroderma. I just received a copy of my award statement, which I requested because I couldn't find it. No one at SS could give me an answer as to how long benefits continued after transplant although the social worker told me 3 years. My report reads: BENEFITS SHALL CONTINUE AS LONG AS BENEFICIARY MEETS ELIGIBILITY REQUIREMENTS whatever that means. By the way, keep your awards statement if you have one. Sometimes you need it. miocean
  7. Hi Weasel, You received good advice from everyone. The only thing I will add is don't do anything to mess with your kidney function! :temper-tantrum:The last thing you want to do is go on dialysis, take it from me. :temper-tantrum: miocean
  8. :emoticons-line-dance: Today I am celebrating the one year anniversary of my kidney transplant! :emoticons-line-dance: :emoticons-clap: Every day is a celebration as a year ago my life changed for the better due to the gift of a kidney by my donor and his family. It's difficult to realize that a year has passed, and the journey I traveled to get here. I feel so much better and am just beginning to understand how vey sick I was. Denial is a very interesting thing, it actually helped me move through the past six years of dealing with scleroderma and the related kidney failure. I lost many things I loved, teaching art to little kids, creating art on my own, the ability to run and swim, even walk distances, but gained so much also. The support of my husband has been incredible and without him I don't know if I would have made it. He did everything for me, especially boosting my spirits with his sense of humor. My family, which enlarged immensely when I married, has been so supportive and encouraging. My friends have stayed with me, scheduling activities around my dialysis days so I could participate and keeping in touch via email. My circle of friends has expanded through my involvement with a non-profit and planning my high school reunion has reunited me with people from my past. This forum was a blessing during the long period of "lurking" and then actively participating. I don't know what I would have done without all of you and your insight and sharing. I've learned that the people in your life are the most important thing, and that you should help others in whatever capacity you can. My days are filled with activity once again, helping to make sick children's dreams come true, creating the eNewsletter for the ISN (with Shelley's help), and participating in a Dialysis/Transplant Support Group. My creative skills are being put to use via technology, my latest venture video editing. We are traveling and just returned from a long awaited trip to our favorite destination, Cabo San Lucas, Mexico. I will always have diffuse scleroderma and the damage it has brought to my organs. Fortunately, the transplant has also brought an improvement in many functions on my tests. Unfortunately, my lung fibrosis has increased. However, my diffusion rate has increased and the medicine they would treat my lungs with is the same I am on for rejection of the kidney so I am in a holding pattern. I am now suffering with the loss of a joint at the base of my thumb due to OA and, believe it or not, it is more painful and frustrating than the damage to my hands from scleroderma. I'll deal with these things one day at a time. In general, I have confidence in my doctors but experience the same frustration as many of you, the lack of articulation between them. :emoticons-thankyou: Thank you for being there, and if you are also lurking, join in and share. You may not realize it, but in asking questions and sharing your story you are helping many others deal with the disease. :emoticons-thankyou: miocean
  9. Wendi, I've had both a right and left heart catherization. The procedure is nothing to worry about but there are some questions one should ask prior to it. I found these things out prior to my second one when I was getting close to a kidney transplant and really researched it: 1. Are they doing a right, left, or both side catherization and why? My first one was a left heart, which was necessary for me to get cardiac approval for a transplant but did not give my scleroderma doctor the numbers she needed for pulmonary hypertension. My second one was done by a different doctor and he did both. 2. If they find a blockage during the procedure, what will be done? Will they put in a stent? I found out that the hospital I had my first one at was not equipped to put in stents, so if a blockage was found, I would have to undergo the procedure at a different facility to do so. 3. If they put in a stent, what kind will it be? There a some that are medically treated that have had controversy over the past few years and I read that I could NOT have that kind because of being so close to transplant. 4. What will they use to close up the incision? The first time the doctor used a collagen plug, the second time a star clasp. I had to carry a card around with me for 90 days saying I had a collagen plug. The star clasp is metal so I have to remember to say I have metal in my body when I have an MRI. 5. How long will I have to lay flat afterwards? To keep a clot from forming, you have to lay flat for several hours. With the collagen plug the time is shorter for some reason.You can end up being in the hospital many hours between the prep, the procedure and the recovery. Once I was overnight. 6. Are there any side effects from the dye used? You have to drink a lot of fluid after to release the dye from your body. Since I was on dialysis, I had to be dialyzed after it, which is why I was overnight once, by the time it was over, the it was too late to get dialysis, so I had to wait until the next day. I have since learned that the dye can damage the kidneys so if there is any loss of kidney function already, extra caution needs to be taken. I discovered most of the things after the fact. Go in prepared with the right questions and informed. I hope this helps. miocean
  10. I just read a post on my transplant forum from someone in New Zealand and the report was not good. I'm so sorry to hear about the loss of lives and terrible destruction.Thinking of all of you. miocean
  11. I'm sending wishes that all our New Zealand friends are well and safe from harm. miocean
  12. :emoticons-group-hug: Cheryl and Vanessa, Best wishes for a speedy recovery! :emoticons-group-hug: miocean
  13. :happy1-by-lisa-volz: Your blogs made me smile on difficult days. Glad you're back! :happy1-by-lisa-volz: miocean
  14. Dear Jeannie, :emoticon-congratulations: May everyone be blessed with health. Enjoy the little bundle of joy! miocean
  15. ;)So I want to know... do you still have a hole in your house? ;) miocean
  16. :emoticons-line-dance: I've missed the blogs of Barbara and Barefut! :emoticons-line-dance: Welcome back! miocean
  17. Post kidney transplant, one of the things I am not allowed to do is garden because of the bacteria in the dirt. I was the same as Buttons as a child, frustrated my mother to death, who wanted a little girl she could dress up. miocean
  18. I am just amazed at what all of you are able to do with your lives beyond this disease! I always had a lot of hobbies. Besides teaching art to little kids, a VERY active job, I dabbled in many artistic areas on my own. I was primarily a painter and potter. I truly loved working with clay and dreamed of making it may career but became a teacher, allowing me to share my love of art with others. I painted in watercolors, I guess you would call it impressionistic, but about 12 years ago switched to large abstract acrylics. I've woven baskets, done needle point, sewed, and dabbled in knitting and crocheting. Problem is I hate to follow directions so many of those things just don't work for me. I took metals classes and fabricated and cast pieces in silver, not being able to set up a personal studio or continue classes I turned to beading jewelry. I became interested in the computer and made multi-media presentations for my students. I loved taking pictures and dabbled with Photoshop. I was very active, running and swimming in the ocean, walking the beach for miles and then... WHAM, BAM, SCLERODERMA!!! and kidney failure. Over a period of six months my life slowed down and then suddenly stopped. For almost six years I did very little but go to dialysis and sit around. I tried beading but dropped more beads than I got onto the pins. I really had no desire to paint. I used the computer, but mostly for communicating and research. Feeling MUCH better almost a year post kidney transplant I volunteer for a non-profit, am their Public Relations coordinator, and am using my creative skills again, but in a different capacity, all on the computer. I am back to photography and creating presentations and am just getting interested in video. Tomorrow I have my first workshop in this. My hands greatly limit me as to what I can do, but fortunately, I am still able to handle a keyboard and mouse. I can no longer hold a large camera, but things are so small today I can manage those. I "try" to do the eNewslettter for ISN, but cannot do the html so what you receive is really a little done by me and a LOT done by Shelley (thanks, Shelley!) I never gave up the beach and although I can't walk or swim anymore, I enjoy my time there. We are renovating our townhouse right now and I have created a ton of stuff that is all over the place. So my question is, what do you do with the stuff? I love it and it is special to me but I have also collected and my husband is an artist as well so every bit of wall, floor and counter space is taken. :rolleyes: miocean
  19. Aw, Jeannie, I hope you start feeling better but I would opt for a hot toddy instead of the margarita. (Or two or three!) We all have our ups and downs with the disease, mostly declines in things rather than improvements, unfortunately. Feeling sick is frustrating, depressing and discouraging for healthy people and compounded for us. Take this time to wrap yourself in a blanket and plop your body on the couch. Sometimes we need to just withdraw and hibernate for a couple of days. Sending you some spoons, miocean
  20. Queenie, I have traveled with scleroderma many times over the past six years, recently returning from a wonderful two-week visit to Mexico, the longest air flight, 5 hours. I have been on 2 hour flights many times. I have traveled with oxygen and made arrangements for a tank from my oxygen provider in case I needed it but I didn't have to use it. I do get wheelchair assistance as the airport I use is gigantic and there is no way I could walk to the gates and you do get whisked right through all the gates and customs making things very easy for you and everyone traveling with you. I make sure I take it easy on the trips. For the past six years I really had no choice because I was on dialysis and many of my days were shortened for treatments, hours sitting in the chair, and exhaustion afterwards. On this trip to Mexico (just returned last night) I made sure I rested, took naps, and didn't overdo it. Today is just a hang-out, catch-up day and then back to life as usual tomorrow. By the way, I found Mexico to be as beautiful as I remembered, safe and VERY clean. I was in Los Cabos, a tourist area, and live in a tourist area in NJ. My town could learn a lot as far as cleanliness on the beaches and bathrooms from Mexico! miocean
  21. :happy-day: I missed the party but there is always reason to celebrate! Congratulations ISN! :happy-day: miocean
  22. Wishing you the very best trip and I am very interested to find out what they tell you. miocean
  23. :emoticons-yes: :emoticons-yes: :emoticons-yes: Voy a Mexico manana! :emoticons-yes: :emoticons-yes: :emoticons-yes: :emoticons-yes: miocean
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