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Everything posted by miocean

  1. Here is a more direct link to Sherrill. Even after all these years I am still learning how to use this site. It really awesome to see what it contains. miocean
  2. I am so grateful for this thread. :thank-you-2: There's always hope. Dialysis is awful but it does keep you alive. It seemed to me that only a couple of people had renal failure here and one that I know of passed away, a wonderful contributor to this site, Sherrill Knaggs, who helped me through at the beginning. She did beautiful artwork that you will find throughout the site among other things. Hi, Jeanann, I see you figured it out. :happy-dance: Good to see you here! Georgie, to private message someone you click the little box to the right of their sign in name. You filled me in but I am always willing to hear about this. Amanda, how many years did it take for them to come back? One of my nephrologists said he knows a woman whose came back after 3. I kept on hoping but after a year pursued the transplant route. The biopsy is scheduled for Wednesday. I did all the pre-admission blood work and my nephrologist called today. (He's great!) My creatinine has dropped again to 1.3. (American levels are .1-1.2 for normal function). He had no concern about my GFR. He feels certain it is prograf toxicity and reassured me that is is not resembling scleroderma renal failure :happy-day: which he described as extremely high blood pressure with a sudden stoppage of the kidney, exactly what happened to me but the only way to tell is the biopsy. He gave me the option of going ahead and having it or changing the med dose and seeing what happens. Although I REALLY don't want to have to do this, and although I am suffering anxiety, and probably have over researched it, I am mentally prepared and have planned for it so I decided to do it. I also pulled the all too famous, "What would you tell your wife to do if it was her?" He said to do it. My transplant center does not do protocol biopsies, which means they would biopsy you at 3 months, 6 months, 12 months regardless as to how you are doing but he said they were leaning toward it as it shows problems early on and extends the transplant. He is changing my dose anyway so we'll see. If I waited until next month and my creatinine changed again I would just have to go through all of this anxiety again. I'll keep you posted. miocean
  3. Dear Georgie, I am one of the unfortunate ones that lost my kidneys :temper-tantrum: but unlike you my kidneys did not come back. It is debatable now as to whether or not it was actually scleroderma renal failure or cardiac related even though I was diagnosed with diffuse scleroderma prior to the failure and the biopsy of my native kidneys showed scleroderma renal failure. I did 5 1/2 years of in center hemo dialysis with a catheter as my vascular system is not strong enough to support a fistula or graft. My sclero specialist advised against peritoneal due to risk of infection but catheters get infected too as I learned from experience. I received the gift of a kidney March 2010. My GRF has run around 50 since transplant. I am currently having some issues with creatinine levels fluctuating that might be toxicity to the anti-rejection medication so next week I am having a biopsy. It is unusual for scleroderma to attack a transplanted kidney, according to my specialist but we shall see. What is your creatinine? Mine was 8 while I was on dialysis and had been holding steady at 1.2 for the past year but lately has been jumping to 1.6 then falling back then jumping again so the biopsy is to see what might be causing this. It could be something as simple as the hot weather has come and I'm dehydrated, even though I've been drinking a lot. Are you a transplant candidate? Please private message me. You are so lucky your function returned even at that level. I would love to talk with you about what you have gone through. Fortunately, there do not seem to be many on the forum who lost kidney function and it is so encouraging to hear that yours came back. This forum is the best place to be for support and the ISN site has a wealth of information. There are always people here for you. :emoticon-hug: miocean
  4. :emoticons-line-dance: Today, in celebration of World Scleroderma Day, I have posted it as my status on a social network and am wearing my scleroderma awareness bracelet. :emoticons-line-dance: I am grateful for all of the support I have found on this forum and the courage and sense of humor you have shown in dealing with this disease. :emoticons-group-hug: I am celebrating at my favorite place, the beach (who would ever guess that of me?) because I am still alive after 7 years since diagnosis in spite of kidney failure and transplant, interstitial lung disease, Stage 2 heart failure, GI damage, limited mobility, and the emotional ups and downs that happen between what the disease and the side effects of the medicines taken to treat the symptoms of the disease bring. There is no cure for scleroderma and until recently very little research was funded to find a cure. That is slowly changing and trials are being done world wide to find ways to if not cure at least stop the often rapid progression. Thank you to all of you who have participated in a trial, because of my kidney damage I do not qualify for any. Know that you are helping others. :emoticons-thankyou: miocean Do something today for yourself to celebrate in whatever capacity you can. Hug your loved ones, eat that piece of chocolate, take that bubble bath. Be strong, all my fellow sclerodermians. Do something today to celebrate. If I could drink I would toast you all!
  5. Hi Amanda, I am sorry you are feeling sick after treatment. I'm with Joelf, after over a year on prednisone my weight has been creeping up and I truly thought that wouldn't happen. :( Of course, my eating has increased and my craving for sugar is back so maybe that has something to do with it. And I've been lax about weighing myself. In other words, I've slipped back into my old pattern of behavior. I only had two monthly infusions of methotrexate before I developed toxicity and I thought the extreme vomiting and diarrhea was normal until I was in dialysis and had to keep on asking to be taken off the machine to go to the bathroom. I was made to go directly to emergency and spent 3 days in the hospital. No more for me. It's a two-edged sword, the drugs will either save us or kill us. I wouldn't wait, I would seek medical advice. I learned the hard way what can happen if you don't. :o Try to keep smiling! miocean
  6. Jeannie, I am so sorry you had to go through all of that. :temper-tantrum: Healthy people get sick when they travel, let alone someone with an autoimmune disease. You put out a lot of good points, though, as far as what you should think about, especially when it comes to oxygen. The same thing applies to medications. Always carry a list with you, and let people you are with know where you keep this information. I carry a list of my doctors (it is becoming longer and longer). Just a little oxygen story, as an aside... When I was on O2 we had a new furnace put in. It is located in a space under the living room next to the garage where we stored the 200 lb. tank. A couple of weeks later we had to bring a plumber into the same area and he immediately noticed the smell of gas! They didn't tighten a connection on the pipes and we were leaking gas right next to the tank and a car filled with gas! Could have blown up an entire row of condos! Fortunately it didn't happen. Hope you and everyone else feels better! :emoticon-hug: :emoticon-hug: :emoticon-hug: miocean
  7. Marsha, That's great to hear. :emoticons-line-dance: I would bring everything with me but I would email him and ask him in advance what he is most interested in having. Since my major issues were my lung fibrosis he wanted the actual CT scans, not just the reports. I had been to a lung specialist the week before who graphed all my data from lung function tests so that was all ready for him. You have plenty of time to be well prepared for the visit and get everything he needs. I brought things he didn't need to look at but at least I had them if he did. You will need a list of your medications and one thing I always have for my doctors to put in their files is a list of all my doctors, their specialty, and contact info (phone and fax). Please keep us posted. I would have loved to just sat and talked with him for a long time but he is a busy man. He spent about 1 1/2 hours with me and did not rush. miocean
  8. After 15 months with my new kidney my nephrologist wants to have a biopsy because my creatine is jumping around. I could give you a lot of numbers but they wouldn't mean anything to most. My neph says I am not spilling protein and has emphasized that this is NOT rejection, but could be prograf toxicity and perhaps my level should be dropped. I have consulted my transplant center, as has my neph, and they are in agreement with the biopsy but they also suggested an ultrasound and a renal scan. I know with the warmer weather this could be a hydration issue, but I have been drinking lot of fluids. The decision is where to have this done. I could have it locally, performed by a DOCTOR who is excellent, part of my group, and recommended by my transplant center at a hospital that is part of their group but not a transplant center (and doesn't have the best of reputations, but bad things have been said about all the hospitals involved, even my transplant center). I could have it done at any other local hospital but it would be done by a radiologist and they are not transplant centers. Or I could travel back to my center, which would involve several trips (about 2 hours each way) and it would be done by a radiologist. When I mentioned going back to the transplant center my nephrologist commented that they have not been following me the past year, that he has. He understands my feelings about the hospitals and said I could have it anywhere I want. Of course, all options require an overnight stay to monitor bleeding with worse case scenario a transfusion. I have pretty much decided that since my transplant center and nephrologist highly recommend the doctor and I know him to be excellent that I would have him do it ON THE CONDITION that if anything happens to me I am to be transported to my transplant center. I had a biopsy locally when this all first happened and it was no big deal. My nephrologist has even said that I don't even need to have this done but he has been absolutely wonderful at monitoring me so if it is his opinion to do it, I will. It is very unusual for scleroderma to take a transplanted kidney, but it is always a possibility. The thought of going back into one of those germ factories is really discouraging. I have managed to stay out of the hospital for a while, except for my transplant. Any feedback or advice is appreciated. If there are any questions I should be asking, let me know. miocean
  9. I have a lot of questions as well. What exactly happened in that CT scan room? The last thing I remember is thinking, I am going to die in this room with people staring at me and heard plastic being ripped open. I know I did not have a blood pressure cuff on at that time. My local nephrologist did a biopsy on my kidney which came back scleroderma renal failure. When I later told my sclero doctor he did the biopsy she said it was unnecessary and she knew it was scleroderma renal failure. However, this scleroderma expert says I don't fit the pattern and that if there was a sudden drop in blood pressure, that in itself would have caused the kidney failure. He said the biopsy would come back scleroderma even if it was the drop in blood pressure that caused it. I've learned through my dialysis/transplant support group that kidney takes heart and that heart takes kidney. Does it matter? The end result is the same. But my curiosity has been aroused. I have some unanswered questions that will require getting records for. What caused me to code in the first place? It's sort of like asking what caused the scleroderma? Thanks for all your concern, miocean
  10. Dear Lynn, I am at a loss as to what to say to you. I'm sure you have explored all the options. I know how you feel about wanting to do everything you can while you can. We are here for you. miocean
  11. Yesterday my husband and I for a consultation with a scleroderma expert. It was a 400 mile round trip journey taking 12 hours but well worth it. I have been receiving mixed messages from the assortment of doctors who deal with my multiple organ damage and general care and management of diffuse scleroderma. It was an honor to meet this man who has dedicated his life to finding a cure for this disease. At the end of the visit I asked him why he chose scleroderma as his field and he said he wanted a challenge and to leave his mark, that the apathy toward the disease was terrible, and that he had a personal relationship with a woman who was deaf but was a wonderful dancer, she could feel the beat through the floor. When the disease struck, everything was taken away from her. He touched his heart as he said this. I fit the classic diffuse scleroderma profile to a T. Sudden onset with multiple organ damage, over a period of time a softening of the skin, and a plateau of lung damage. Many of you know that I had a crisis where I stopped breathing, my heart stopped and my kidneys failed. However, even though I was diagnosed with scleroderma renal failure through biopsy he doesn't think that is what cause my kidneys to fail! I don't fit the pattern, which he described as a loss of kidney function, sometimes a crisis, but afterwards an ability to produce some urine. Because I urinated for the last time when I coded and then produced very little urine (maybe a shot glass a day) he feels it was my HEART that caused the kidney failure with a sudden drop in blood pressure after it being high. With scleroderma renal failure the kidneys can come back but that was not the case with me as apparently my kidney failure was cardiac related. As for my lung fibrosis, he still has to review the CT scans but based on everything he knew up to this point from reports, I have stabilized with around 55% of lung capacity and a diffusion rate of 45% with fibrosis on both my upper and lower lobes. There is no real treatment, drugs have been used that may halt the progression for a period of time but when they are stopped, after the same period of time with patients not on the medications, the lungs return to the same level. I am on myfortic (Mycophenolate or CellCept) for organ rejection which is becoming the drug of choice for treatment so the question is whether my dose can be increased without damage to my transplant. Basically, I can function quite well, I will get out of breath because I don't get enough oxygen. But if I function at my own pace and stop and catch my breath when needed I am fine and don't need oxygen. On to pulmonary hypertension. This has been a back and forth of "she has it, she doesn't have it" and the bottom line is I will need to have another heart catherization, this time with a doctor at my center who will know what to look for and what numbers to get. He said the basic cardiologist doesn't really know what to look for and my scleroderma specialist has mentioned she "didn't get the numbers she needed". There is no immediate hurry for this so I will plan on having this done in the fall by the doctor he recommended. I am fortunate in that my scleroderma specialist ran the clinic at my center in the past, trained my current specialist, and is familiar with the doctors there. Next is the use of a statin to reduce cholesterol. He doesn't believe my achy legs were caused by the statin and that current research shows that statins may actually help scleroderma! The anti-rejection medications I am on cause high cholesterol so I have to manage this some way. One of the things he is going to do is coordinate my care, something we all have been frustrated with in dealing with different doctors and the lack of communication between them, and their basic lack of knowledge of scleroderma. This is bound to be an interesting discussion between my doctors, I wish I could be a fly on the wall! But, there is going to be discussion!!! He told me to calm down, that I am doing really well, have managed the disease well and that although he doesn't see a need for me to come to see him on a regular basis he will be in touch with me via email and that he will assist in managing my disease. To those of you who have participated in trials, thank you . I don't qualify for any because of the kidney but progress is being made through these trials that helps us all. miocean
  12. :emoticons-line-dance: Congratulations! :emoticons-line-dance: May everyone be blessed with health! miocean
  13. Lynn, That is great news! :emoticon-congratulations: Best wishes on your lung function as well! miocean
  14. Yesterday I had an appointment with the lung specialist at my scleroderma center. This was an appointment I was able to get quickly, unlike my scleroderma specialist who I had been unable to get an appointment with (I finally was booked for July but had been told there were no openings until November and they weren't taking appointments at this time :temper-tantrum: ). My concern was that my CT Scan from 2010 compared to 09 showed significant worsening of fibrosis and my PFTs showed slight improvement. in lung function. I spent hours prior to my appointment organizing my medical records. I kept many of the reports and tests done over the past 7 years but not everything, I discovered, and I didn't have them in any order, just piles of papers. I always assumed I could get them from my doctor but discovered it isn't that easy, especially when you have such a complicated disease. In addition, being on a transplant list for a kidney at 3 centers required yearly extensive testing, always kept on record at my dialysis center and are now in thick files at my nephrologist who has yet to be computerized. I now have a binder organized by areas like PFTs, six-minute walk tests, colonoscopies, CT Scans (which I also have on disk from 2007) etc. I also have the films from the calcinosis on my neck but no reports from the doctor. I remember he told me I made the medical journals for that one but don't really know why. I have discovered I have no endoscopy reports and I don't have my ANA test. I think it was 1:180 and I know it was speckled pattern. Does anybody know how long a doctor keeps records? This was taken in 2004 and I haven't seen that doctor since then. So my task now will be to try and get my records as complete as possible. In the binder I also placed a copy of my living will and Power of Attorney just in case... Back to the lung specialist: HE called me twice before the appointment to discuss things and make sure everything he needed would be available. He also gave me his email so I could send my medications and list of doctors. He has access to all my records through the computer system at the center and duplicated it for me, giving me papers an inch thick upon my arrival (which I now have to go through and organize in my binder, there may be reports and tests I am missing in them). He took my lung studies and plotted them on a graph giving me an overall picture of my lungs over the years. Except for 2007 where things spike really high and really low and he said to discount as invalid my lungs have been at a plateau. He took me to a computer and I looked at my lungs past and present. He very clearly pointed out the fibrosis at the beginning and where it is now. It was really amazing to see these 3-d images on a screen and travel through my lungs. Again, this showed some changes but not "significant worsening." So all of that is really good news. The bad news is that my lungs have only 55% capacity. But I don't need oxygen! :emoticons-line-dance: He also said he doesn't believe I ever had pulmonary hypertension. My sclero specialist believed I did from a right heart cath in 2010 and wanted to put me on Letaris which never happened because of the kidney transplant. He said she was looking at the numbers wrong and he would tell her. I mentioned that she wanted to "revisit" that at my next appointment and there was a possibility of another right heart cath and he said that "he didn't always agree with that particular specialist about her ideas with testing." So that is more good news. :happy-dance: I am already on myfortic for anti-rejection of the kidney which would be the course of treatment of the progression of the fibrosis. As we know, there is really no means to permanently stop the progression. :emoticon-bang-head: I am almost ready for my appointment next Friday. I was VERY impressed with the lung specialist and complimented him on his communication with me and all the work he put into preparing for my visit. When you've seen as many doctors as I (we) have you know they come in all styles. :spoon: :spoon: Here's some spoons for all of us. I'll keep you posted about my appointment next week, miocean
  15. That was a great article about facing adversity that was just posted in the Sclero News Forum. I think it is a positive attitude that carries one through this journey. I tried not to be a moaner and groaner and make life miserable for those around me. I try to make my husband aware of my aches and pains without dwelling on them. It is important as my caregiver that he be aware of things but he doesn't have to be miserable. It's hard enough as it is. miocean
  16. Dear Lisa, It is good hearing from you again! It is very uplifting to read about your daughter's strength and bravery, we all know where she gets it from. Both of you are true inspirations! Best wishes with your elbow and knee. miocean
  17. Dear Enjoy, I was told to contact the Nurse/Patient Advocate if I ever had trouble in a hospital. I never had the need to so I don't know how it works or if it applies in your situation. I hope you are able to work everything out. miocean
  18. Susie, I am glad that the thyroid issue is good news! :emoticons-line-dance: I was one of the lucky ones. I sort of missed menopause. A couple of hot flashes and spotty periods and it came and went. My gynecologist put me on a hormone for a couple of months and right around the same time I started with the scleroderma symptoms. I don't think they were related. I have a friend who is suffering from it terribly right now and has tried everything from diet to acupuncture and nothing has worked. It sounds like it is miserable. :temper-tantrum: I'll be thinking about you, miocean
  19. :emoticons-line-dance: I'm happy today because I eliminated a major factor of stress in my life, am being proactive about my medical care, and it's a beautiful day! :emoticons-line-dance: :woohoo: And I am headed for the beach! :woohoo: miocean
  20. Tamara, I am going to add my concern about the swelling in your legs. Please do not ignore it. That was one of my first symptoms and I ended up with kidney failure. I don't want to alarm you, there could be many other reasons for this, but get to a doctor and have him do blood work and a urinalysis. It is so much better to be safe than sorry. Please let us know how you are doing. miocean
  21. I have had bowel issues for many years, even before the scleroderma diagnosis. I have been on and off oxygen over the past 7 years with a nasal canula. I have noticed no difference. However, my bowel issues have not been obstruction, more diarrhea. miocean
  22. Dear Amanda, Sometimes you just wonder how much more you can take. I know you have the positive attitude that will carry you through. But still... :temper-tantrum: I read that one symptom of Pulmonary Hypertension is shortness of breath when you lay in bed at night. Well, I have that. My last hearth catherization, Jan. 2010 showed PH but my most recent ECCO, Dec. 2010 did not. I get out of breath easily. My fibrosis has increased so but has my PFT. We sclerodermians are just mysteries. :emoticon-dont-know: miocean
  23. Hello Lynn, I'm sorry you are in so much pain and frustration. I had a painful bump on my big toe for years. I could only wear two pairs of shoes, a pair of sneakers and a pair of black flats that I wore so much the leather wore off! My physical therapist treated it with a cold laser for a long time and eventually the bump went down. I still have trouble with shoes, the least bit of pressure in that spot hurts so much. I love summer because I can wear sandals One thing I have noticed is the soles of my feet have become very sensitive. I used to be able to walk barefoot everywhere and now prefer something, whether it be slippers or sandals, even inside. Hope things ease up soon, miocean
  24. I was diagnosed 7 years ago and found encouragement on this site when I saw that there were many who had been dealing with the disease for so many years. The internet is a scary place when you look up mortality in scleroderma, and although I feel deeply for all of us who suffer, those of you who made it through so many years gave me hope. miocean
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