But his comment was, "your ANA is slightly elevated, but that is unremarkable in a woman your age." Your other Facebook friends can't see our private group discussions, only that you are a member of the group. Since then we have always marked our engagement anniversary - the moment when we committed to each other.
After 11 months, this valiant enabler of my treatment was getting blocked up, and was an ongoing infection risk.
Gigi.
allogeneic, blood cancer, celebrate, depersonalisation, exercise, faith, GVHD, lymphoma, marriage, prayer, recovery, Scrubs, steroids, transplant, wedding. That was achieved after some uncertainties. Trying to get insurance to approve the stem cell transplant. And thank you Ruth, a constant presence through tough times, my ezer kenegdo - lifesaver alongside me - for your skill, humour and resilience and for just being here with me.
She was explicit about the rigours of the transplant process, referring to it as “Tiger Territory”, due to multiple risks. The group is really supportive and gives advice you can use. May the challenges that life brings your way, May you always be each other's best friend. One year ago yesterday, at 10am Chicago time, I got my stem cells back after having had my damaged immune system obliterated. Before I actually vanished (if that's possible?)
The couple-of-weeks recovery stay in Belfast City Hospital turned into a further two months as an in-patient. Older patients and those with low-risk disease show the greatest gains over time, while people with high-risk factors showed the least change, its researchers said. My chemo brain, scleroderma brain fog, is bothersome. If you're right for the trial, he will be on it.
This period is described as ‘neutropenic’ because your white blood cell counts will be very low. Having not driven for a year, medical reports, insurance and Driver Vehicle Licensing were all lined up and I could drive again. Before transplant I had something like a 50/50 chance of surviving 5 years (per Dr Phil Clements of UCLA, if a patient has scleroderma and lung involvement and is rapidly progressing, 50/50 is what he sees in his experience.)
Thanks! 25-Aug-2018 Celebrant role at Daniel & Tammy's Wedding. had an autologous stem cell transplant in the last year; had an allogeneic stem cell transplant in the last two years; are taking medication to suppress your immune system, including treatment for graft vs host disease (GvHD). In the background, I agreed with my consultant Dr. Finnegan that, in the unlikely event of my being in hospital, we would do everything possible to get me up and out just to do the ceremony. You will be at risk of picking up infections from many sources, including your food, but lots can be done to help prevent it. As energy and strength improved, I didn't need the stairlift much in September, so it was removed by the very efficient man from Stairlift Solutions, Bangor. The TLC and FVC also went from 77% each to over 90% each. 16 January 2019 at 07:58 PM, Post-transplant experiences - initial reflection, Managing after donor transplant - looking forwards, an intentional focus for energy rather than being distracted by trivia, sense of participation and buy-in from others. Thank you ladies. My symptoms just seems like a lot of middle aged woman issues. My transplant physician, Dr. John Koreth, explained that it would give me the best chance of recovery. Our files can be used in your presentation to your insurance company (medical journal articles about success rates, lists of other insurance companies who approved HSCT, lists of patient blogs, video's of Scleroderma experts recommending HSCT for aggressive scleroderma.) “Being there” is a title of an interesting Peter Sellars film and I am thankful to ‘be there’ for Ruth, our sons, family and close friends. So, if you go thru the cytxan and they put u on cellcept to maintain- do not stop it. 17-Mar-2018 Home-bake of Ruth's Birthday Cake. I just put in a request to join the FB Group. Ulcers on fingertips - is there hope?
The answer was right in front of him and he didn't know how to interpret it. It's recommended for agressive cases. Thank you to Dr. Lawless & team, City Hospital, who got me to transplant.
It would be great if I could come and say hello at some point and see how your getting on!
Treatment with allogeneic hematopoietic stem cell transplantation (HSCT) is associated with short and long-term toxicities that can result in alterations in sexual functioning. Marti Hand | The neurologist I saw for the carpal tunnel did the blood test that showed my ANA was positive. Daniel is the eldest son of our good friends Maurice and Adrienne. It's right on my nail. On St Patrick's Day, rather than birthday cake making, there were multiple bowls of blood due to stomach bleeds. It develops when blood cells formed from the donor's stem cells think your cells are foreign and attack them. The first ulcer I had came right ... My hands are better than they were, but they are still damaged.
I'm finally coming back again to Northern Ireland in febuary at some point. Just was skating along fine on metho till bad reaction, stopped all drugs and bam went down hill within 4 months. In a pre-transplant St James’s hospital consultation, it was made clear that my chances of survival to 18 months post-transplant were one-in-four. I was Freaking out that I may have had cancer on top of the scleroderma. Having relapsed with Non-Hodgkin Lymphoma in April 2017, my prayer to God in May 2017 was concise: “Please help me get to transplant and through transplant”. I went thru a hellish two weeks of being ct scanned for possible bladder cancer due to microscopic blood in urine, wound up in local er with non-specific chest pain to rule out a blood clot only to hear that the ct of the chest showed new/worse lung nodules, enlarged lymph nodes and congestive heart failure. I travel way too much and wear myself out because I’m running around, not because Scleroderma is making me nap all the time. I am one year old following last year’s donor stem cell transplant. I hope some new research will bring a new answer for you very soon.
It felt strange not being part of everyday society, especially at the start of the school year, when everyone but me was going back to work. 64 Replies, I was diagnosed last December.....first with Systemic Sclerosis, then with limited Scleroderma, then with Morphea and in March the specialist ...
It was a rough 6 … Maybeth harvey |
To both Cyndy and Amy, 05-Feb-2018 Friends Patrick & Ines for meal in Apartment. Everything worked out. There is a lifetime max of how many times you can get the Cytoxan series. Are there any active members reading this in the Phoenix area that might be interested in starting an informal support group?
If you come to my Facebook group, Scleroderma Stem Cell Phioneers, I have the medical journal articles that talk about the heart and about the results of the clinical trial to date.
These aims give me. My lungs, which were my life threatening issue, improved. Can't explain microscopic blood in urine though. It was a rough 6 weeks in Chicago, I’m not gonna lie. I don't know which antibody I have . 5 Replies, I was diagnosed with Systemic Scerloderma in 2014 right after both parents passed away 6 days apart I took care of both for many years and I ... Thank you so much for sharing such fantastic news! -Which Antibody do you have? will check out the web site thanks. 136 Replies, Within 12 weeks my entire body has thickened and now the skin seems to be hardening.