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Undergoing Stem Cell Transplant


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#41 scragporter

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Posted 06 December 2008 - 08:44 AM

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

#42 PrincessB

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Posted 07 December 2008 - 10:05 PM

Well done Craig, and all the other halves out there, who help us through!

My cheering them on is helping, I'm glad to hear :) I didn't have mouth ulcers actually, I did have a skin rash for a while, I'd forgotten about that, it was all over my feet and hands and legs, but they gave me some medication for it and it cleared up. Since I left hospital, I haven't really been ill more than a normal person. I take antibiotics and an antiviral every day to ward off illnesses. I was in hospital with gastroenteritis in September, but it was a precautionary measure. I haven't been told to change my diet, so I eat everything I did before, including shellfish, whatever. My appetite came back very quickly, even in hospital I was hungry, the nurses couldn't believe it. The food was awful though! Is yours all heat-treated too? The only meal I looked forward to was Coco Pops in the morning, the rest of the time I ate white bread and Coke. When I got out, all I wanted to eat were salads and sandwiches, all the cold food I hadn't been able to have.

My boyfriend would sterilise his lips so that he could kiss me, and his neck so that I could nestle in for a cuddle :)

Keep up the good work little beauties!
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#43 scragporter

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Posted 08 December 2008 - 12:49 PM

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.

#44 Shelley Ensz

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Posted 08 December 2008 - 12:57 PM

Hi Sharon,

Oh yippee, tomorrow will be a big day for you!!! Congratulations on making it through this phase. I bet you'll love your new "hotel hospital".
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#45 jefa

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Posted 08 December 2008 - 09:43 PM

This will add a whole new meaning to the expression "salad days" for you. I am glad improvements are starting to appear. :D
Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#46 scragporter

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Posted 10 December 2008 - 04:47 AM

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

#47 Purr

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Posted 10 December 2008 - 05:03 AM

I'm so very happy for both of you!!!

Christy
Love makes the world go around!

#48 ozzy69

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Posted 10 December 2008 - 09:00 AM

Craig and Sharon,

That is great news!! It is wonderful to hear things are going so well!! I am sure things will keep improving. I went for lung test and CT scans today. They did not say anything about my CT scan but she did mention my lung scores were lower than three months ago. They give me a breathing treatment and it did bring them up some. I guess I will have to wait till the doctor calls to get the final results. Thanks so much for keeping us informed!! We are doing a happy dance for you!!

hugs,
Nina Lynn

#49 Peggy

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Posted 10 December 2008 - 11:48 AM

What wonderful news! You will truly have something to celebrate this holiday season! I wish you all the best on your new life that's ahead of you that is hopefully free of all that scleroderma does to you. You are a new and improved on your way to a while different life. I so envy you and am so happy for you!!

Warm hugs,

Peggy

#50 ashu

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Posted 10 December 2008 - 07:22 PM

Hello,

My daughterwho is 11completed years .is suffering from scleroderma on medication since 5yrs.pretty looking girl has become partially cripled. So after going through few opinions we decided to go for stem cell transplantation. Since we stay in remote area of India with a few knowledge of doctors we are going for stem cell transplantation in a couple of days. You must be well knowledgeble regarding this therapy. Can you give me the procedure and period of treatment and success rate regarding it. I have a great gratitude if you reply for me, since having 11 years old girl with mental agony this will be helpfull to me.

thanking you

Dr. Damayanti,
M/o Ashu

#51 PrincessB

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Posted 10 December 2008 - 09:32 PM

That's great news Craig and Sharon, I'm really happy for you! Happy recuperating in the hotel xxx
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#52 scragporter

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Posted 11 December 2008 - 03:32 PM

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

#53 ozzy69

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Posted 12 December 2008 - 11:43 AM

Sharon,


I hope your blood test come out great and you get your central line out! Your in our thoughts..
Lots of hugs,
Nina Lynn

#54 canon

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Posted 12 December 2008 - 07:28 PM

Sharon and Graig,

It's wonderful to hear you have done so well, both of you!! Hope you are having some fun now and able to relax alittle. Keeping you in my thoughts for a steady improvement in all your labs and skin improvements Sharon.

With gentle thoughts,

Judy
A happy heart is good medicine.

#55 Snowbird

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Posted 13 December 2008 - 03:54 PM

Hi Sharon and Craig

I'm waayyy late on chiming in on this one...but wish you every success with your ongoing treatments Sharon...so glad to hear you are doing so well and having improvements in many areas. Best wishes to both of you!
Sending good wishes your way!

#56 smac0719

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Posted 14 December 2008 - 01:56 PM

Wow! I have been out of the loop too long. Reading this thread has me in complete chills!! I am happy that you are having success with your treatment. This is excellent news for those of us who may have to face the decisions you have made. I am also glad to hear you have BCBS as I do too. I have researched stem cell treatment under my plan and it is currently not covered for scleroderma as it is considered experimental and investigational for this diagnosis. Hopefully there will be enough sucess stories in the near future to change that guideline.

Best wishes to you Sharon and my thoughts are with you for a great recovery. Craig, you are an angel for being so supportive to your wife and for allowing us to take this journey with you. Thank you!

Peace and blessings!!
I may have Scleroderma, but Scleroderma doesn't have me!

#57 scragporter

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Posted 15 December 2008 - 10:29 AM

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.scleroder...l.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

#58 scragporter

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Posted 23 December 2008 - 04:56 AM

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

#59 Shelley Ensz

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Posted 23 December 2008 - 05:54 AM

Hi Sharon and Craig,

I'm delighted that you will be home for the holidays!! It is a very good sign that you've made it this far without any major complications. I hope you have wonderful holidays...and the New Year will be a totally fresh start for you Sharon, won't it?

Craig, thank you for the information on how people can advocate for their stem cell transplant. That will be absolutely vital info to some people.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#60 smac0719

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Posted 23 December 2008 - 11:54 AM

This wonderful news and a wonder present!! I wish you continued improvement for the remainder of the year and the new year.
I may have Scleroderma, but Scleroderma doesn't have me!