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Everything posted by scragporter

  1. Hi, Long-term disability is a major factor due to the present management being on relieving symptoms rather than treating the condition. New therapies are coming out all the time and the treatments are getting better. A lot of these chronic disorders are now more effectively treated and the management is improving year on year. Patients are seeing improvement, my wife being one and she is hiking mountains where she couldn`t climb stairs two years ago. My wife got better and she tells me all the time how she didn`t know how bad she was until she improved. Why should disability be the final outcome when there are tough ladies on this website battling everyday? Thanks Craig
  2. Hi Amberjolie My wife had bad digital ulcers from scleroderma; she would put nitro paste around the edges, not directly on the broken area. She also used to use hot packs inside her gloves; you get them from camping stores. She had electric gloves but they were very bulky and hard to get on and off. She also had a hot wax tub that she placed her hands in which would help with the contractures and loosen the skin up. Viagra and meds for pulmonary hypertension helped to some degree in improving them. She has none since her stemcell transplant two years ago. I used to live in England the damp weather is Brutal. All the best Craig
  3. Hi J, My wife didn`t tell anyone for two years as she didn`t want to scare our two boys. She told me not to talk to anyone as she felt others wouldn`t understand. I found it difficult to cope with but found solace in just reading the post on this website and it helped me a great deal. She was in denial for a while and wouldn`t read about the condition. Since she got better after her stemcell transplant at the Northwestern she is shouting from the roof tops about her treatment and stood in front of 120 people with autoimmune disease about her journey with sclero on Friday. All the best, Craig
  4. We had a great turn out for the evening presentation. Over 125 people came to the venue, there was over 20 with scleroderma 2 of them have had non myeloblative stem cell transplants over 2 years ago and none are on any immunosuppressant or steroids. They got to talk about there treatment and how marvelous it is to have their lives back. With Dr Burt’s Assist trial you no longer have to do a control arm with cyclophosphamide like the SCOT trial you always get the stem cell transplant. It is the only treatment that treats the cause of scleroderma the faulty immune system and not just symptom management. Centers all over the world are performing the non myeloblative stem cell transplant as it has been proven to be tailor made for autoimmune disease and not a cancer treatment. Dr Burt and the Northwestern saved my wife's life.
  5. Just a reminder that there are still a few places available for Friday's talk by Dr Burt in Phoenix. If anyone is interested please PM and let me know. Thanks Craig.
  6. At the talk in Phoenix there will be a number of people who have undergone the stem cell transplant at the Northwestern for Scleroderma and other autoimmune diseases. They will be able to discuss their treatment with people who come along. You can send me a PM for more information.
  7. Thank you I forgot to post the date Dr Burt is here in Phoenix its Friday 7th January and the talk is free at the venue.
  8. My wife had a stem cell transplant for systemic scleroderma 2 years ago at the Northwestern under the care of Dr. Burt. She is back to work as a RN and life is good again for us. She is off all her immunosuppressants and her pulmonary artery pressures are now normal off those meds. Dr. Burt, who treated my wife, is giving a lecture to medical staff in the day but in the evening is giving a talk about his treatment for scleroderma to the public at 6 30pm at Squaw Peak Pointe Hilton on 16th st if anyone in Phoenix is interested let me know and I can reserve you a spot.
  9. Sorry to hear about your daughters ulcers, vasodilators like norvasc helped my Raynauds, also viagra can help with circulation and nitro paste applied topically around the ulcers can aid in helping circulation to the affected areas. Pulmonary hypertensive meds like Bosantan and Leitaris have been shown to aid not only pulmonary hypertension but aid secondary digital ulceration healing. I was on Leitaris for my pulmonary hypertension and with the other meds my ulcers improved. I also had IV cyclophosphamide over six months once monthly it somewhat helped soften my skin and stopped my lungs from deteriorating for awhile. Sharon
  10. Hi, Fighting insurance when you are dealing with health problems is a nightmare. You need to send as much evidence as possible I have many research articles, videos and patient testimonies that can help you. The letter which pokey linked to is how we got Blue Cross to pay for it. I helped a lady in Sacremento who got her appeal granted also. You can contact us any time and I will help you. Craig
  11. Hi thanks for thinking of me, I'm doing well my white cell count is up and climbing which is good. No infections thus far which is good. Overall feel very well indeed! Cheers Sharon and craig
  12. Hi Sorry to hear your having trouble getting coverage. I had stem cell in November my husband wrote a great letter which will help you with your fight. If you go to my website, which is listed on the ISN Story Collections Page as Sharon's Stem Cell Transplant Blog, there are links that can help you. Good Luck!!
  13. Hi everyone, after some concern with my white cell count not being as high as it should have they decided to let me go home. This was music to our ears!! It is so nice to be home and be with the family. We realize how lucky we are to have gone through the treatment without many complications. I have been truly blessed. I now just have to avoid getting an infection and get my strength back. So we are going to have a quiet family holiday. We wish everyone a Merry and Warm holiday and a Happy New Year!! Best wishes Sharon and Craig
  14. Hi, Blue Cross Blue Shield paid 100% for the procedure. You will be told that the procedure is not covered. We went to a medical appeal and proved using research that the procedure was cost effective and the best treatment option in the long term treatment of scleroderma. Other insurance companies like United Health Care are very supportive of this treatment. I have put together a letter on how we fought for the procedure and it has helped others who have been through the medical appeal process. Read below. Letter to Aid others Fighting Insurance Companies After dealing with Blue Cross Blue Shield and knowing how traumatic it can be particularly for people who are already suffering with major symptoms of scleroderma. We would like to share with others advice that we found useful with dealing with this most difficult experience. When dealing with people outside the medical field always talk in terms of bone marrow transplantation instead of stem cell transplant. Bone marrow transplantation makes a regular person think of cancer which has been around for along time. They may know people who have had this treatment, so they are usually more sympathetic. Stem cells, to people who do not know better, may have negative connotations. Always mention it’s your own stem cells that are harvested and returned. You need to be very proactive in dealing with the insurance. Educate yourself in the various trials Astis, Assist and Scot trials. Knowledge about the research will help you get the insurance people to get over the “experimental†blinkers they all wear. Send all the positive research you can attain - scleroderma is a rare condition and trial data is expanding but is limited. Use the data for stem cell transplantation for all autoimmune diseases as well as the sclero trials. Laar’s and Tyndalls’s articles talks of 10 years worth of data with over 700 people being treated this was published in 2006. Tell the insurance well over a 1000 worldwide have been treated now. Tyndal and Furst’s article mention’s 170 people for scleroderma being treated. Quote Dr. Burt’s research at every opportunity. His latest research mentions 926 treated people for autoimmune diseases and stem cell transplantation. There is a video from Austin 8 news, which explains the procedure very well and should be sent to lay people and your case manager before you arrive to explain the procedure and give added credibility to your request for help. Here is their news site: http://www.sclerodermatrial.org/announce/ This is a link off of that site: mms://vidsrv1.duhs.duke.edu/dcms/scot/scot_tv_release.wmv It is imperative to express Dr Burt’s credibility and biography. Send his old and new bio to the insurance, as he is the world’s pioneer in stem cell transplantation and has treated the most people for autoimmune disease. Insurance will constantly express their doubts about the treatment. Emphasize that they are mistaken and Dr. Burt is the expert with the relevant knowledge, skills and experience. I printed every article off of his from the links on the northwestern site and sent it to the insurance. It is important to have the backing of your personal physicians: pulmonologist, rheumatologist, renal doctors and/or whoever is seeing you. Ask your doctors for their help. Explain what you are doing with regard to stem cell transplantation, educate them on the merits of the procedure, and get letters from all of them to send to the insurance. When the medical appeal occurs, your doctors need to speak with the medical director of your health insurance. Ask your doctors to emphasize the symptoms you have, that they are worsening, and major medical complications await. Ensure this happens by passing on their pager numbers to your case manager. Follow up with both parties to ensure the conversation has happened. The present management philosophy of scleroderma is to treat the symptoms rather than treating the disease. Emphasize that stem cell transplantation is a potential treatment for scleroderma and complications from scleroderma can be prevented if the disease is treated early on. Tell them you are on the precipice and that an avalanche of complications will arise unless they act quickly to help you. This also has a cost implication that is beneficial to the insurance company. Emphasize this point. Insurance companies fear expensive complications down the way. Pulmonary Fibrosis can lead to lung transplantation that costs a minimum of $300,000. Pulmonary hypertension and flolan treatment costs a minimum of $100,000 per year; dialysis for kidney failure costs $50,000 per year, and disability costs equipment and care. Comparatively, a stem cell transplant is cheap, half the price of a lifetime of treating symptoms. Emphasize other insurance companies, such as United Health Care, Etna, Medicare, and now Blue Cross Blue Shield are saving lives by paying for stem cell transplants. Your health insurance should too. Have a go at them but communicate appropriately, talk calmly, be tenacious, but don’t lose your cool. They want you to lose your cool and start shouting this way they will call into question your sanity and being irrational. Keep telling them their logic is wrong. You pay your premiums and when needed they are cheap compared to others. Talk about Michael Moore and his film Sicko. Quote the world health organization statistics for America spending the most but languishing way down the polls and how insurance is dragging this country down. Tell them you will not rest until they do the decent thing. You will go public and never go away. Call your case manager daily ensure they return your calls; they like to delay and hide behind answering machines. Speak with a congressman tell them at the insurance what you are doing. There are many patient testimonies on the Internet of people who have gone before us, heroes one and all; this is important evidence. I can forward you their website and blogs. We all can share our acceptance letters fax them to your health insurance. Have your employer on your side by contacting your manager or supervisor; let them know what you are doing, then go to the top to the Directors not their assistants. Send them the Austin News 8 video I referred to earlier. Make an appointment and see everyone personally. Find the head of Human Resources (HR) and make the appointment with the senior people not the junior HR representatives. They will ask you to see junior. Tell them it is of the utmost importance that you see the head HR person. I was told by one junior HR rep to come back post appeal. No way would I do this! The vice president of HR was one of our crucial advocates as he negotiated the contracts with the Insurance Company; after all they are his clients. We got our physicians and medical people on board prior to our meeting with the HR director. 10 doctors total called and emailed the HR director and senior managers to let him know we were coming. The director will have their arms in the air waving the white flag of surrender when you arrive. Share the research and make sure they watch the video so they understand the procedure and treatment, and ensure they know their role in all of this. Ask that they become one of your advocates, a liason with whoever they negotiate with at the health insurance company. They must insist you are to be helped and are an important member of the company. Remember reputation and retention of staff is everything for a HR in recruitment. I hope this helps people going through this most traumatic experience of appeal, insurance and transplant. Remember what you are fighting for is your future so tenacity and hope is the key. We are willing to help anyone who needs it 24/7. Craig
  15. Hi Georgette, Both my hands were swollen, tight and curling in, the right hand was worse than the left and they were very painful when manipulated. I went to an occupational therapist who firstly did paraffin wax treatment on both hands, then she massaged my hands, then she did bending and straightening of all fingers and wrists. She told me to tell her if it was too painful so she could stop. I felt that was beneficial I also had night splints to wear which I confess I was not good about wearing. She also gave me some exercises and putty which I could work with at home. After having cyclophosphamide and stem cell treatment they are getting straighter and less swollen as the skin is less taught. I still will continue to work with the occupational therapist. I would tell your therapist that you cannot tolerate the same treatment he gave you which caused you problems, let him know exactly what you are feeling. Sincerest regards Sharon
  16. Thank you for your words of support. Ashu I sent you a private message explaing the procedure and treatment with regards to stem cell treatment. Sharon is doing well and enjoying her freedom. She is going for blood test tomorrow and hopefully the central line will come out shortly. Cheers Craig
  17. Freedom!!! The day has come Day 20 of hospitalization and Day 15 post transplant and Sharon has the all clear for discharge to the hotel. The central line needs to remain as it’s a tunneled catheter and the platelets are not high enough at present to remove it. The white cell count yesterday was 1.3 but today its 12.2 what a response. We visited the Hospital Chapel yesterday and asked for some divine assistance something helped. Sharon says she is," Looking forward to breathing some cold fresh Chicago air and embracing my cooking". I Hope her new immune systems up to it !! Thanks for your support Craig and Sharon
  18. Hi Ozzy, Sharons doing well thanks still awaiting counts to come up so we can escape the BMT unit. I asked Dr Burt and he said ~sometimes (rarely) it goes away but usually it does not. It seems to help everything else. All the best Craig
  19. Hi Nina, Sharons fingers already feel warmer and Lisa aka Peanut her Raynaud's went away. I will ask Dr Burt for you on what results he has found. Cheers Craig
  20. Well this is Day 18 of being hospitalized and Day 13 post transplant, my white cell actually went up to 2 but today they dropped to 1.4 I was disappointed as they were going to discharge me today. Like princessB said that it's not unusual to drop and the rise again. Patience is a virtue!! Dr Burt did however allow me to leave the unit to go to the cafeteria, it was so nice to escape and get a change of scenery and a hot coffee. Apart from that I'm feeling great, eating well, the diet that your allowed is a lot less stringent they will let you eat salad! Hopefully Day 14 tomorrow I'm hoping to discharged back to the hotel. Thanks for all your wonderful messages.
  21. Thankyou for your lovely replies, We are so pleased that sharing our treatment has given others with scleroderma an insight into this treatment and hope others get the chance we have had. I have a friend also with scleroderma who is eager to see my results from the stem cell transplant as she also got randomised to chemotherapy control arm. It's important to get the treatment sooner rather than later the stronger you are the better you will deal with the teament regime. Preventing the complications from becoming permanent was a great insentive for me. Today is day 11 post transplant my white cell count for the first time is coming up more substantially they are 1.4 on there way to the 4.5 we need, Dr Bucha who works with Dr Burt's says they are very elegant in there arrival like ballet dancers slow but perfect. I have finally been disconnected from my continuous IV. Most of my meds can now be given orally it's so nice to be free with out being tethered. I still have the central line so they can draw the daily labs and give blood products as needed. I am slowly getting used to being bald and now I am free of bad hair days!! We still await more white cells to arrive so I'll be out of the neutropenic range. We continue to be cautious another weekend in hospital watching the brutal Chicago weather from the 15th Floor window, I'm actually not envious of being out in that weather. Finally I would like to thank Craig for his ever loving support and care. He has been truly fantastic from the time I got diagnosed with scleroderma, he has been instrumental in the treatment that I have received and supporting me, my advocate and loving husband although he still won't even give me a peck on the cheek because of germs! Shazza x x x
  22. Princess B Thankyou for your lovely reply I was pleased to hear about your progress and the fact you went to back to work a month following transplant, I too am looking forward to going back to work but it may not be that soon as I deal with sometimes infectious patients. How good were you with following guidelines when discharged with regards eating out? Diet? avoiding infection? Did you get any post transplant infections? Losing your hair as a woman is a big deal but I realize that in time it will grow back. At present I have mouth sores and neupogen shot pain which unfortunately go with the whole process of which I'm sure you are aware of. The nurses and doctors have been fantastic I could not have asked for better care. Also with this unit you can go out of your room and walk the corridors thus getting some exercise and a change of scenery. My skin scores were 22 so I will be interested to know what they would score me now, my skin is softer and more pliable for the first time in years my skin on the back of my hands is wrinkly sounds awful to some but my skin was so taught you could not even pinch it. I am working on getting my hands into better shape but they are loosing up somewhat. Craig, my husband has been fantastic he's definately "my rock" i cannot thank him enough for all the wonderful support he has shown me throughout his treatment. Thankyou for your support we want other people with systemic scleroderma that there are treatment options out there preferably before the disease progresses too far. Waiting patiently for an imminent arrival of a new immune system or "little beauties" to arrive. Best wishes Sharon
  23. Getting into nursing school is wonderful it is a career far more than a job and is very rewarding. My wife and I have been nurses for 20 years and it has so many different avenues you can enjoy. Travel nursing is a good adventure when you have the experience in the area you specialize in. My wife got round the cold issue in Gi nursing by wearing layers to work and making the air conditioning tolerable in the unit she worked. The other staff understood her needs and wanted to help as much as possible. Sharon has cotton glove liners you can wear under the latex gloves. Good luck to you with your great adventure in Nursing.
  24. Hi, Day 9 is here and the white cell count is at 0.2 up from 0.1 a move in the right direction but a long way from where we need to be safe. Dr Burt checked under the microscope blood smears and they showed white cells too immature to count but are developing and our immanent arrival of the new immune system is in sight. Princess B and other transplant recipients what changes have you seen post transplant and how quick did you recover? Finally today couldn’t stand the hair issue any longer as it was getting annoying as it was falling out in clumps and getting everywhere and itching so bad. With the platelet counts being so low shaving was out the question so Craig cut it with scissors and then trimmed the rest with clippers. It feels much better now and my collection of hats will be put to full use. Sharon
  25. We had high hopes for today but I guess giving birth to a new immune system can vary from person to person. Sharon’s white cell count is still 0.1 and no neutrophils so we continue with the isolation and hand washing. Still no fevers or signs of infection touch wood. It feels like skating on ice each day getting nearer to the edge of the pond where you can be safe and worrying any minute the ice could break and you are going to have issues. On the menu today we have blood ordered to rectify a low hemoglobin and an infusion of platelets to get this clotting factor up. Sharon feels great and is being very patient. I showed Dr. Burt the Immunologist performing Sharon`s stem cell transplant the medical resources on this site as he wasn’t aware of it. Thanks for your support Craig and Sharon
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