tag:blogger.com,1999:blog-1062706137840523082024-03-13T22:28:48.314-07:00Kickboxing for SclerodermaHolly's Blog: The musings of a physician diagnosed with a rare diseaseHollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.comBlogger77125tag:blogger.com,1999:blog-106270613784052308.post-80332487365888645992013-02-11T16:25:00.000-08:002013-02-11T16:34:05.615-08:00Steady, As She Goes<div class="separator" style="clear: both; text-align: center;">
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<i>PHOTO OF THEN...</i>
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It's been a long time since I updated my blog, but so much is happening in my life and in the world of scleroderma, that I felt it was time to share the news.
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First and foremost, Dr. Burt has now published two articles on me, or at least me and my cohorts. :) Both articles were published in Lancet, a very well-respected journal. The most recent just came out this month. So, I want to post the links here in case you want to access and read these articles. The data, in summary, show very encouraging results. Those with aggressive forms of scleroderma are living longer and living better, thus far, following autologous stem cell transplantation. Relapse rate after transplant is about 30%, and 5 year survival is 78%. For a disease which typically can take 7-12% of patients each year in its aggressive form, the form which requires stem cell treatment, these results are encouraging. <b> <i>Those who did best received their transplants early, prior to any cardiac involvement.</i></b> Dr. Burt is continuing his research in scleroderma and stem cell transplants, but there will no longer be a control group. He is comparing two different conditioning regimens (the chemotherapy used to eliminate the faulty immune system will be different in the two groups) but both groups will receive stem cell transplant to reboot the immune system.
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<a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)62114-X/fulltext">Here is the most recent article</a>, discussing all 90 patients transplanted so far between Dr. Burt and his colleague in Brazil. This includes patients who were older and had more long standing disease than within the ASSIST trial.
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<a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60982-3/fulltext">Here is the article which discusses the 19 patients in the ASSIST trial</a>, in which I participated.
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I, unfortunately, meet relapse criteria. However, it's not as bad as it sounds. The criteria are very strict, if you will. Because my skin began to tighten again about 14 months after the transplant, my local doctors tried new therapy for me. I did not tolerate the treatment, and developed complications. Hence, I have really not been on any immunosuppressants for any extended period of time... perhaps 60 days total. But, using any new treatment at all qualifies as a "relapse."
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At my most recent appointment with Dr. Burt, we discussed the use of immunosuppressants, and he feels that my situation is so stable that there is no need. My lung function is stable year over year for the first time. My cardiac status is stable. My kidneys, after a brief decline in function last year, are once again running full steam. All of the potentially life-threatening complications are seemingly stable. I am enjoying riding my horse, and my biggest health issue at present is a dumb back injury I got falling in my garden. I love normal problems. :)
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I got my second set of teal streaks in my hair recently... so much fun. I'm streaking for scleroderma. I continue to work for scleroderma awareness, I continue in my volunteer capacity with the Scleroderma Foundation, I'm planning my third education day (April 27) and just loving time with my kids and family.
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NOW! Hair aplenty!</i>
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I'm looking forward to reading the ASTIS trial--I contacted the investigators this month, and they are hoping to go to press this year, too. This European stem cell transplant trial in scleroderma is larger than ASSIST and will definitely add substantially to our understanding of the treatment's potential. The SCOT trial, the multi-center US trial, is not yet published, and I look forward to those results, as well. In the meanwhile, some of the SCOT investigators have started a new trial which does not include total body irradiation, and is enrolling in Colorado and Seattle. This trial, called STAT, also will not have a control arm.
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I am so encouraged that my own experience with the control arm, as painful as it was to lose cardiac and pulmonary function, may have contributed to medical science. Dr. Burt says "no;" he believes that it was never necessary to have a control arm. But, I understand the need for solid science. I just always thought I'd be on the other side of the bench.
Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com8tag:blogger.com,1999:blog-106270613784052308.post-73801846333494521232011-09-19T16:27:00.000-07:002011-09-20T15:39:58.168-07:00Politics<div class="separator" style="clear: both; text-align: center;">
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<i>“Politics is supposed to be the second oldest profession. I have come to realize that it bears a very close resemblance to the first.”
- Ronald Reagan<blockquote></blockquote></i>
I had the honor of visiting Washington, D.C., this past week on behalf of the Scleroderma Foundation. The work we do locally to provide support and education to those with scleroderma is vital. Our local fundraisers provide "seed" money for researchers, who can do early studies on a good idea, but we cannot raise the kind of funds we need to do big clinical trials. That money, in general, comes from the NIH (National Institutes of Health).
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The NIH is a large organization, but the research money is allocated across the nation. Much of the "bench" research in the United States is funded with NIH dollars, as is a great deal of clinical research.
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As you are no doubt aware, scleroderma research does receive some funding from the NIH. Our goal in visiting Washington, D.C., was really two-fold. First, we tried to impress upon our representatives the importance of NIH funding. We talked about high tech jobs, advancement of science, and the health of our citizens. Second, we are hoping that some of the Congressional leaders with whom we spoke will join us on a bill, the "Scleroderma Research and Awareness Act." This bill, which asks for no additional funding, does ask that the NIH fund scleroderma research and that the CDC (Centers for Disease Control) promote awareness of scleroderma. The ultimate goal is that those affected will be diagnosed more quickly (because their doctors recognize the disease) and will have treatments available (because the research has been done). Ideally, when the cause is eventually known, the disease may even be preventable or curable.
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So, we spent an exhausting couple of days marching through the House and Senate buildings, discussing our message and our "ask." It was very interesting to see the back side of politics, where the deals are made and the decisions are influenced. I came to realize that the saying "the halls of power" is quite accurate--many of our meeting took place in hallways, as staff members have limited space available to them (the buildings are gorgeous but staffs have grown substantially since they were built).
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One of the unexpected highlights of my trip was meeting with the Senior Policy Advisor to Congressman Brian Bilbray, Gary Kline. (photo above) From our leadership within the Foundation, I learned that Congressman Bilbray is a huge supporter of the NIH--he has an incredible reputation on the "hill" for his emphasis on funding of the NIH. In addition, Gary felt that the Congressman would be interested in supporting the bill. So, I'm holding my breath (maybe not, lungs won't tolerate that) and hoping that he was right. Regardless, it felt great to think that my trip was worthwhile and quite heartwarming to know that my own Congressman was such a great supporter of medical research.
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OK, next blog will review the results of my one year follow-up in Chicago. But, wanted to share this rather more exciting information first! :)
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ADDENDUM: Congressman Bilbray is, indeed, co-sponsoring the Scleroderma Research and Awareness Act. Thank you, Congressman!Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com13tag:blogger.com,1999:blog-106270613784052308.post-24687727596335870052011-08-14T17:45:00.000-07:002011-08-14T17:45:10.714-07:00Radio, Radio<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7UpOGbsbZ1lTxJItfVKQ2vw_gQRGmQTxe0RLZ9se_O72hA75zDHfviKJnkznr8Y5LHMDKXPqztDz-76qnHM1Fc_r_CeOHNC0Ble_Sb7cgIB_ZCHNy-_P7012inyAV__4cQzM63PXZl7pq/s1600/Screen+shot+2011-08-14+at+5.37.05+PM.png" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="295" width="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7UpOGbsbZ1lTxJItfVKQ2vw_gQRGmQTxe0RLZ9se_O72hA75zDHfviKJnkznr8Y5LHMDKXPqztDz-76qnHM1Fc_r_CeOHNC0Ble_Sb7cgIB_ZCHNy-_P7012inyAV__4cQzM63PXZl7pq/s400/Screen+shot+2011-08-14+at+5.37.05+PM.png" /></a></div><br />
Dr. Burt was recently interviewed on air regarding the ASSIST study, and a link is provided <a href="http://download.thelancet.com/flatcontentassets/audio/lancet/2011/05august.mp3">here</a> for those interested. The interview once again reviews the phenomenal results this study has shows as compared to any other prior intervention with aggressive systemic scleroderma.<br />
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I return to Chicago late this month for a reevaluation. I'm feeling pretty well overall, although I still have symptoms of disease. The transplant didn't "cure" me but my life is vastly improved. My biggest complaints remain my shortness of breath and my joint pain.<br />
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I'm heading to my first horse show in more than a year this week. I'm pretty nervous, as Costa and I have not really figured each other out. It will be a lot of work to get there, I'm sure, but I want to enjoy this opportunity to go out and have some fun, see my friends, and share in the excitement of a horse show.<br />
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Then it's on to Yosemite to remember the life of Steve's brother, Dale, who passed away from a brain tumor nearly 10 years ago. We call it, "Lunch with Dale," our annual pilgrimage to his favorite site. Nothing like perspective to make you appreciate the gift of a good day.<br />
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Here's hoping you are enjoying one, as well. :)<br />
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Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com1tag:blogger.com,1999:blog-106270613784052308.post-1856344160917027752011-08-10T15:01:00.000-07:002011-08-10T15:02:13.082-07:00Happy Birthday to Me!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT73eW5P00hkKKMcSbPWeJgzDHt7rgBMat41yLlXrpxtLR2acuN5bu3HwQbZsqg4VR1P7X4Z2-wdexfImt_wV8kTx_cyELHXVvjNlKKNLi-tztZ_fmTqyy9I7AKYPIweJ8AWDATImt6d_Q/s1600/IMG_8758.JPG" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="267" width="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT73eW5P00hkKKMcSbPWeJgzDHt7rgBMat41yLlXrpxtLR2acuN5bu3HwQbZsqg4VR1P7X4Z2-wdexfImt_wV8kTx_cyELHXVvjNlKKNLi-tztZ_fmTqyy9I7AKYPIweJ8AWDATImt6d_Q/s400/IMG_8758.JPG" /></a></div><br />
Can you believe it's been a year?<br />
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Today is the one year anniversary of my stem cell transplant. It's amazing to be where I am. <br />
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I had a rather shocking moment at the Scleroderma National Convention this year. Dr. Burt said during his lecture that the average life expectancy of someone with systemic scleroderma and a TAPSE score of less than 1.8 was one year. Well, one year ago my TAPSE was 1.6, but today I enjoyed a wonderful ride on my new horse, Costa, and I plan to attend a horse show next week. :)<br />
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I am so lucky to have enjoyed this ride, as well, with all of you. Thanks for all of the love and support of the past year. My fight continues, but it doesn't feel like a fight every day anymore. It feels like a magical and wonderful life.<br />
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I am so grateful, and I hope that we will continue to make progress in the treatment of scleroderma.<br />
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<a href="http://www.youtube.com/watch?v=nwX89HTAS80">Video of Holly and Costa</a><br />
Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com3tag:blogger.com,1999:blog-106270613784052308.post-67036565125776512512011-07-21T13:31:00.000-07:002011-07-21T13:31:41.530-07:00HUGE NEWS!<i>I am excited to report that the results of the ASSIST study are about to be published, and you fans get a sneak peak at the abstract! :)<br />
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I am one of the 9 patients who got control, and one of the 7 who went on to stem cell transplant, just in case you are wondering about my 15 minutes. It's big news, and I think should be a game changer in the treatment of scleroderma. Due to these results, Dr. Burt has started a new study which does not include control, and is comparing two different types of non-myeloablative stem cell transplant.<br />
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The Lancet, Early Online Publication, 20 July 2011doi:10.1016/S0140-6736(11)60982-3Cite or Link Using DOI<br />
Autologous non-myeloablative haemopoietic stem-cell transplantation compared with pulse cyclophosphamide once per month for systemic sclerosis (ASSIST): an open-label, randomised phase 2 trial<br />
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Dr Richard K Burt MD a , Sanjiv J Shah MD b, Karin Dill MD c, Prof Thomas Grant FACR c, Prof Mihai Gheorghiade MD d, James Schroeder MD e, Prof Robert Craig MD f, Prof Ikuo Hirano MD f, Karin Marshall RN c, Eric Ruderman MD e, Borko Jovanovic PhD g, Francesca Milanetti MD a h, Sandeep Jain MRCP a, Kristin Boyce RN a, Amy Morgan CNP a, James Carr MD c, Prof Walter Barr MD e ‡<br />
Summary<br />
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Background<br />
Non-randomised studies of haemopoietic stem-cell transplantation (HSCT) in systemic sclerosis have shown improvements in lung function and skin flexibility but high treatment-related mortality. We aimed to assess safety and efficacy of autologous non-myeloablative HSCT in a phase 2 trial compared with the standard of care, cyclophosphamide.<br />
Methods<br />
In our open-label, randomised, controlled phase 2 trial, we consecutively enrolled patients at Northwestern Memorial Hospital (Chicago, IL, USA) who were aged younger than 60 years with diffuse systemic sclerosis, modified Rodnan skin scores (mRSS) of more than 14, and internal organ involvement or restricted skin involvement (mRSS <14) but coexistent pulmonary involvement. We randomly allocated patients 1:1 by use of a computer-generated sequence with a mixed block design (blocks of ten and four) to receive HSCT, 200 mg/kg intravenous cyclophosphamide, and 6·5 mg/kg intravenous rabbit antithymocyte globulin or to receive 1·0 g/m2 intravenous cyclophosphamide once per month for 6 months. The primary outcome for all enrolled patients was improvement at 12 months' follow-up, defined as a decrease in mRSS (>25% for those with initial mRSS >14) or an increase in forced vital capacity by more than 10%. Patients in the control group with disease progression (>25% increase in mRSS or decrease of >10% in forced vital capacity) despite treatment with cyclophosphamide could switch to HSCT 12 months after enrolment. This study is registered with ClinicalTrials.gov, number NCT00278525.<br />
Findings<br />
Between Jan 18, 2006, and Nov 10, 2009 we enrolled 19 patients. All ten patients randomly allocated to receive HSCT improved at or before 12 months' follow-up, compared with none of nine allocated to cyclophosphamide (odds ratio 110, 95% CI 14·04—∞; p=0·00001). Eight of nine controls had disease progression (without interval improvement) compared with no patients treated by HSCT (p=0·0001), and seven patients switched to HSCT. Compared with baseline, data for 11 patients with follow-up to 2 years after HSCT suggested that improvements in mRSS (p<0·0001) and forced vital capacity (p<0·03) persisted.<br />
Interpretation<br />
Non-myeloablative autologous HSCT improves skin and pulmonary function in patients with systemic sclerosis for up to 2 years and is preferable to the current standard of care, but longer follow-up is needed.<br />
Funding<br />
NoneHollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com7tag:blogger.com,1999:blog-106270613784052308.post-44849478030557619752011-06-28T12:22:00.000-07:002011-06-28T12:24:54.251-07:00The Boys of Summer<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhay_Pb4FQtwCl6oogLuQ3t8Ngt5piwBgoCxRh9BCaMdq2RiwNKA7gU_U21zRZeLYVEUkRNnq3y7gNjhmNWrtBqgn3b1bwtDEp6ujChGsDO-fuz6glBesoq17S0VaW34azRblLYiPZrM2DJ/s1600/P1000896.JPG" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhay_Pb4FQtwCl6oogLuQ3t8Ngt5piwBgoCxRh9BCaMdq2RiwNKA7gU_U21zRZeLYVEUkRNnq3y7gNjhmNWrtBqgn3b1bwtDEp6ujChGsDO-fuz6glBesoq17S0VaW34azRblLYiPZrM2DJ/s400/P1000896.JPG" /></a></div><br />
Summer is here!<br />
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June was a CRAZY month for me. I ran my first Education Day for the San Diego Chapter of the Scleroderma Foundation. I think it was a success, based on the feedback and evaluations I received. It was a lot of work, and I admit that I feel quite exhausted! Jake was a big help to me, though, and even spoke at the event.<br />
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The boys have been off school for about a week now, and that is terrific. After last summer's adventures, I really want to spend a lot of time with my boys this summer. Jake entered a robot competition at the Del Mar Fair and earned 3rd prize. He and Luke are playing lots of tennis and doing some fun learning activities with me, as well.<br />
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Luke is also spearheading the "Luke Laps" team for the annual Scleroderma Foundation fundraiser, so don't forget to visit his page at <a href="http://www.firstgiving.com/fundraiser/holly-hauser/stepping-out-to-cure-scleroderma-san-diego-2011">Firstgiving</a>. He is 89% to goal, and with just a few short weeks left, he is excited to be a part of this process.<br />
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I have been deeply touched by the commitment of my boys to helping me with these projects. They have been amazing. I had been hesitant to include them in much--their lives are already impacted enough by this disease. But, they expressed interest and enthusiasm, and I am very proud of their efforts.Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com0tag:blogger.com,1999:blog-106270613784052308.post-59709594084174347252011-05-17T11:48:00.000-07:002011-05-17T11:48:35.651-07:00A Difficult Patient<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx-oNl2HuK5u-SQD1EbSb0n9V9wjheCxo4bDeakqVoQWgzz4xIreFqh12W0YgPPyv7_IKWpSLWUcf5HFlDu5Q5HDnZr5XAi-jM0feCjbepMYKvYh6ptgQcUlZD7ikjij34eZMw6qBWuPqx/s1600/Screen+shot+2011-05-17+at+11.42.58+AM.png" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="130" width="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx-oNl2HuK5u-SQD1EbSb0n9V9wjheCxo4bDeakqVoQWgzz4xIreFqh12W0YgPPyv7_IKWpSLWUcf5HFlDu5Q5HDnZr5XAi-jM0feCjbepMYKvYh6ptgQcUlZD7ikjij34eZMw6qBWuPqx/s400/Screen+shot+2011-05-17+at+11.42.58+AM.png" /></a></div><br />
As I prepare for the Linda Lee Wells Memorial Annual Education Day (what a mouthful!), I have spent more time reading the comments and questions on "the scleroderma sites," particularly on www.inspire.com. Here, the Scleroderma Foundation has joined with Team Inspire to create a safe place for patients to communicate with one another, to share their stories of success and failure, and to question their doctors' advice. <br />
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I find that last area is, in fact, where a lot of posts focus. Perhaps it's just the discussions that I am drawn to opening and reading... but a lot of patients are wondering why their doctors have so much difficulty relating to them as people, listening to their concerns, considering them as partner, and approaching them with compassion. I admit it is hard for me to see the medical community lambasted at times, but my perspective has definitely shifted over these past 4 years.<br />
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When I first became a scleroderma blog voyeur, I was offended by the vitriol often blasted at the medical field. But, having now lived in the world of "patient" for some time, I admit I could blast a few doctors, myself. I have become, quite probably, a difficult patient. I refuse to return to doctors who offend me, who don't listen, who don't believe, or who patronize rather than work with me as a partner. It's hard--especially as a woman, and someone who loves to be liked and hates conflict--to stand up for myself. So, mostly I don't. I just don't schedule the return visit. But, driving home I have the best comments and most brilliant comebacks for all the injustices of my latest medical experience.<br />
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Becoming a patient is never a choice. I certainly don't relish the "sick role." But, if I have to be a person with scleroderma, I'm going to fight the disease and fight for the right kind of care. I'm a difficult patient. I think that we all need to be difficult patients. Not angry patients, not abusive patients--but patients who challenge our doctors' advice, who read the medical literature, who ask the right questions and demand the answers. Patients who understand the disease, want to know the options, accept the limitations of science, and can partner with their doctors. And, I can also assure you, doctors are out there who welcome these partnerships, who don't label this behavior as difficult, and who thrive on the challenge. Those are my fabulous doctors. I owe them a debt of gratitude I can never repay.<br />
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The philosophy of my health care team, whether they know it or not, is called "Patient-centered care." In this context it means "treating patients as partners, involving them in planning their health care and encouraging them to take responsibility for their own health." (AAFP 1998) Research also shows that patients who help to shape their treatment plans are far more likely to adhere to the plan. Difficult? I think not!<br />
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I read a brilliant essay on being a difficult patient which inspired my post today. Written by a scientist and a mother who died a few years back from scleroderma, I highly recommend it if you or a family member are struggling with any kind of disease. <br />
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<a href="http://content.healthaffairs.org/content/27/5/1416.full">Article on Being a Difficult Patient</a>Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com3tag:blogger.com,1999:blog-106270613784052308.post-43227625209418044602011-05-04T16:51:00.000-07:002011-05-04T16:51:36.773-07:00Pump It Up<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQutmd6WhyphenhyphenFMXbXSskgzpGKEBziZX4YtR03y8BRHwrTuO6kFq2lvvdOxQ9MabKJTW1VAWJZA1KOKKLjBzE2ohDchUncVDsG_kKpT0fDLlVa2Oo0b5dpPrwF7sRH2QXk4cf8Cyx7phaB80E/s1600/Screen+shot+2011-05-04+at+4.40.27+PM.png" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="200" width="197" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQutmd6WhyphenhyphenFMXbXSskgzpGKEBziZX4YtR03y8BRHwrTuO6kFq2lvvdOxQ9MabKJTW1VAWJZA1KOKKLjBzE2ohDchUncVDsG_kKpT0fDLlVa2Oo0b5dpPrwF7sRH2QXk4cf8Cyx7phaB80E/s200/Screen+shot+2011-05-04+at+4.40.27+PM.png" /></a></div><br />
Ah, if only I were "This Year's Model." <br />
<br />
But, given that I had my own little rebirth in 2010, I am trying to "Pump it Up" a bit. When I saw Dr. Furst last month he advised me to participate in a formal cardiac rehab program. However, my cardiologist suggested that I just go ahead and exercise at home, which seemed much easier to me.<br />
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I started back on my elliptical, and increased my program by one minute per day. Today, I reached my first goal of 20 minutes on the elliptical. Now, I know to most of you this seems fairly pathetic, but I am pretty proud of my progress. I plan to spend at least a month at 20 minutes now, as this is a decent start, and see how my joints and other symptoms take the new program.<br />
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I can hardly believe the progress I've made in a year, though! Whoo hoo!<br />
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Our team is coming together for the scleroderma walk in July, and now I am a bit more confident that I can be ready. Don't forget to check the site (see the last post) to sign up to walk with us! :)Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com2tag:blogger.com,1999:blog-106270613784052308.post-79774012917210134182011-04-20T09:53:00.000-07:002011-04-20T09:58:11.691-07:00Kickboxing Rides Again!<i>"There is no use trying," said Alice; "one can't believe impossible things."<br />
"I dare say you haven't had much practice," said the Queen. "When I was your age, I always did it for half an hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."<br />
- Lewis Carroll</i><br />
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<a href="http://www.firstgiving.com/fundraiser/holly-hauser/stepping-out-to-cure-scleroderma-san-diego-2011
">FirstGiving</a><br />
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Kickboxing for Scleroderma began as a team. A team inspired by my recent diagnosis of scleroderma, and committed to finding a cure, we did our first fundraising walk in 2007. This team led to my blog, and my involvement with the Scleroderma Foundation... I know that I have enjoyed tremendous support through this process, and I hope that I have given back even a fraction of that which I have gained. Now that my strength is improved, I am committed to giving back even more.<br />
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You are part of this team, and I am so grateful.<br />
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My sons, Jake and Luke, has stepped up this year as team leaders. <br />
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Luke is our fund raiser, and you must see the adorable (no bias here!) video that he has created for our annual walk. Check the link above. Luke has lofty goals, and plays the task master both on his video and here at home, making sure we properly promote our team: LUKE LAPS! Please visit the page. :)<br />
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Jake--home today with me and recovering from a nasty oral surgery--is the head of the "envelope stuffing committee" as he calls it with all of his wonderful humor. He is technically one of 3 people running the annual Linda Lee Wells Memorial Education Day, a completely free event (you are all welcome to come!), run and staffed by an all volunteer group, to provide a top notch educational event.<br />
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See the link below, and join us!<br />
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<a href="http://scleroderma.eventbrite.com/">Eventbrite</a>Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com6tag:blogger.com,1999:blog-106270613784052308.post-84669673341242867862011-04-03T17:28:00.000-07:002011-04-03T17:28:05.652-07:00Work in Progress<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhflzZA1Hf9AowEJ3YbGg-IuW5wolezu6VGIoDNI0NvO9rpQjIVezeOxo1QG_1UbIWD7WSWpcFfxDX9M8sDJxqyGTlFnVBIqU15tOqGzJeemUFi8MO3CIKaq6OAJrkYsRg3lR9vEBXJmVnY/s1600/12065669231219144528Anonymous_work_in_progress-1.svg.med.png" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="183" width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhflzZA1Hf9AowEJ3YbGg-IuW5wolezu6VGIoDNI0NvO9rpQjIVezeOxo1QG_1UbIWD7WSWpcFfxDX9M8sDJxqyGTlFnVBIqU15tOqGzJeemUFi8MO3CIKaq6OAJrkYsRg3lR9vEBXJmVnY/s200/12065669231219144528Anonymous_work_in_progress-1.svg.med.png" /></a></div><br />
I had a busy couple of weeks, seeing several doctors and collecting opinions on my progress. And, the general consensus seems to be that I am, in fact, a work in progress.<br />
<br />
My new cardiologist, a specialist in heart failure, seems to think that my heart may be recovering. Additional formal testing is scheduled.<br />
<br />
My pulmonologist seems very happy with the improvement in my lung CT, and was not horrified by the tiny drop in my pulmonary function testing. She thinks that the slight difference may reflect the difference in machines between Chicago and San Diego, or may reflect my underlying connective tissue tightness. Overall, however, she is happy with my progress.<br />
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My rheumatologist is also pleased with my progress. On substantially less medication than I was on pre-transplant, I do have some arthritis pains. My Raynauds symptoms are worse. But, again, overall I feel better, have more energy, and she is satisfied.<br />
<br />
Regardless, everyone seems to agree that I have done what I can. The stem cell transplant can take up to 2 years to see full benefit, so now we wait. :)<br />
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I am sorry to report that Alexander needs a lay up to recover from a ligament injury, but I plan to find a way to keep riding. Stay tuned!Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com2tag:blogger.com,1999:blog-106270613784052308.post-80468481912857296322011-03-17T22:21:00.000-07:002011-03-17T22:21:21.413-07:00A Rough Week<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiysOR_mUr7hqakldXKk-xrNYfgwSAbMkgATMX25f30EtGsaMPEgot2VDByEb3nmhUrUQNytBeXbY_B5yaxKmoEffkU4cnOK_qR5OwC9GL3e6SU5o8CxZGW37ucT0B0uRxiiuDaHquLd2k4/s1600/IMG_3084.jpeg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="200" width="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiysOR_mUr7hqakldXKk-xrNYfgwSAbMkgATMX25f30EtGsaMPEgot2VDByEb3nmhUrUQNytBeXbY_B5yaxKmoEffkU4cnOK_qR5OwC9GL3e6SU5o8CxZGW37ucT0B0uRxiiuDaHquLd2k4/s200/IMG_3084.jpeg" /></a></div><br />
Sometimes it seems like life throws you curve balls, and this has been one of those weeks. It started when I foolishly (again) left my purse in my car during Luke's tennis match down at Barnes Tennis Center. I returned to a bashed in car and a stolen purse, along with many of my other personal belongings. It's hard already, but without an income, losing all that stuff was even harder.<br />
<br />
Then our beautiful horse Alexander became sore after a too tough dressage training session, I think. Hopefully that's all it is, but the poor guy is just not right. We were planning our first show on him this weekend, but that's been scratched. :( I am disappointed.<br />
<br />
But, the light on my horizon was the thought that I might have found a new, young hunter prospect who looked absolutely perfect. Sold today, of course, and I was to see him Monday.<br />
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The last straw was my pulmonary function testing. It put me over the edge today. Cranky all day anyway, and then my numbers are down into the 50th percentiles for the first time. Don't understand, can't explain... don't have any answers but I do have another full week of doctor's appointments next week. Wish I could just walk away from it all sometimes.<br />
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Not my week.Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com3tag:blogger.com,1999:blog-106270613784052308.post-82747726146071942392011-03-01T20:00:00.000-08:002011-03-01T20:23:10.255-08:00Follow Your PassionI had a lovely "coffee" with a friend today, and she got me thinking about how stem cell therapy for autoimmune diseases began. I came home and found this video on YouTube of Dr. Burt, the man who did my stem cell transplant, discussing how he began his work.<br />
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Hope you enjoy it. :) There is a part 2 and a part 3, as well, which you can also find on YouTube.<br />
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<iframe title="YouTube video player" width="480" height="390" src="http://www.youtube.com/embed/s3TgPFy1Ozo" frameborder="0" allowfullscreen></iframe>Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com2tag:blogger.com,1999:blog-106270613784052308.post-78310562483914337752011-02-21T20:16:00.000-08:002011-02-21T20:16:09.052-08:00How to Save a Life<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTO_MEgQUhtwl526Dt86UeWYcGZ6DzWaDW25sHwOpDR_ve9JSokYNZ9tZDNzyNbQIpGrz4RV8D099M7PPA3-MDHDFkkNgrr2B3cI47Y4vYwTYTXnhyphenhyphenFx3RS746qqekdqO67DNXBa0UBP3x/s1600/stanley.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="128" width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTO_MEgQUhtwl526Dt86UeWYcGZ6DzWaDW25sHwOpDR_ve9JSokYNZ9tZDNzyNbQIpGrz4RV8D099M7PPA3-MDHDFkkNgrr2B3cI47Y4vYwTYTXnhyphenhyphenFx3RS746qqekdqO67DNXBa0UBP3x/s200/stanley.jpg" /></a></div><br />
Success! I am home from Chicago and feeling quite well, despite a, ah, pneumomediastinum as a rather unusual complication of my heart catheterization. Seems to be healing up fine, though!<br />
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The best news continues to be the dramatic drop in my pulmonary artery pressure. In addition, however, the CT scan of my lungs also showed substantial improvement. It would appear that the stem cell transplant was a resounding success!<br />
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I am quite hopeful that the damage already done to my body by scleroderma can be controlled. My heart testing, in particular my echocardiogram, showed continued decline in the function of my heart. My TAPSE (tricuspid annular plane systolic excursion) has dropped from above 3.0 cm less than a year ago to 1.6 cm on this study (with a level of 2.1 cm in August 2010). This value can estimate right ventricular ejection fraction (RVEF), and a level of less that 1.96 cm correlates with a RVEF of less than 40%. This, in turn, predicts big problems. Also, my right ventricle continues to become more hypokinetic--it doesn't move as well or pump as strongly.<br />
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Dr. Burt is eager to publish the findings of his study, and showed me several graphs of his results. The bottom line is that Cytoxan does not seem to work. The stem cell transplant works quite well, but is far more effective done earlier, before Cytoxan, than when it is delayed until after Cytoxan as was my situation. He intends to begin a new trial comparing two variations of stem cell transplant and will no longer use a control arm with Cytoxan based on these results.<br />
<br />
How to Save a Life: if you have aggressive, early scleroderma, please talk to experts about getting a stem cell transplant early.<br />
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Oh, and try to have some fun in the meantime. Is this horse the cutest thing you have EVER seen? It was so much fun to ride him the other day! And enjoy your friends and your family, and travel often, and kiss your mother with that mouth, after all. :)Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com9tag:blogger.com,1999:blog-106270613784052308.post-20299307449976828062011-02-15T18:50:00.000-08:002011-02-15T18:50:36.536-08:00About A Girl<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgABRcnYKlJ3702l7AjcF1uI5EBvkWoKCk1PUuleYHxxJdoqic01u-TmE_0SlvNFaeaJ-Lg7vLNHbpLgeyjLNjo6wGxlEtAxXSM7XhoqF2cyr4QNffCe-jkKghnRxM4Z9T1DyyQa3JgnzXO/s1600/IMG_0318_2.JPG" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="150" width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgABRcnYKlJ3702l7AjcF1uI5EBvkWoKCk1PUuleYHxxJdoqic01u-TmE_0SlvNFaeaJ-Lg7vLNHbpLgeyjLNjo6wGxlEtAxXSM7XhoqF2cyr4QNffCe-jkKghnRxM4Z9T1DyyQa3JgnzXO/s200/IMG_0318_2.JPG" /></a></div><br />
Had a wonderful evening with my stem cell transplant buddies. After spending a month cooped up together in the hospital, we were looking forward to an actual dinner out! So, we arranged to have our 6 month follow-up visits on the same day--tomorrow--and planned a night out in the big city for tonight.<br />
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We went to a fabulous restaurant in Chicago. It was very nice to just sit in peace, eating great food and chatting a bit about our lives "on the outside." Neither of my stem cell buddies has scleroderma, so their experiences have been quite different from mine. (Dr. Burt does stem cell transplants for several autoimmune diseases.) All the same, we have shared something very unique and it was nice to see how well we are all recovering.<br />
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I had a lot more testing today and will get my official results tomorrow. I do have my results from the pulmonary function testing, which is stable. That's good, but after yesterday I had even begun to hope for improvement. I'll try not to get too greedy... :)Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com1tag:blogger.com,1999:blog-106270613784052308.post-57274903666528413692011-02-14T17:50:00.000-08:002011-02-14T20:47:00.017-08:00Valentine's Surprise<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm1ozw1Da85ssrafY5Ab45MT2-Gpfb6p7dbm-JxBxFn1TwRTabCWXGiHTGJZHYOITDBRBsup8JbTPk0R53GRO8YI0IpA3qS1h8wsqPq72ILE00w3JqP_fj8P7kljg-5TG3G_EtMsZK3rM7/s1600/heart_clip_art_01.jpg" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="144" width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm1ozw1Da85ssrafY5Ab45MT2-Gpfb6p7dbm-JxBxFn1TwRTabCWXGiHTGJZHYOITDBRBsup8JbTPk0R53GRO8YI0IpA3qS1h8wsqPq72ILE00w3JqP_fj8P7kljg-5TG3G_EtMsZK3rM7/s200/heart_clip_art_01.jpg" /></a></div><br />
I was pretty hopeful that having a heart catheterization on Valentine's Day had to be a good omen. My preliminary results show incredible improvement. I am stunned beyond belief.<br />
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My mean pulmonary artery pressure dropped from 26 pre-transplant to 14 today. Normal. <br />
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Still lots of follow-up testing to be done tomorrow, but honestly I'm almost numb from the good news. I always steel myself a little, ready myself for that news I've become accustomed to... I'm not sure exactly how excited I can get just yet. But, here's hoping the good news keeps coming tomorrow and I think in time I will figure out the right way to celebrate! :)Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com7tag:blogger.com,1999:blog-106270613784052308.post-17214126278246287172011-02-07T21:20:00.000-08:002011-02-07T21:20:55.940-08:00One of Us<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh87SPxoi6iaROUJPelgw6Tm9G3lOtzzdl-ka_aN4T-9pE32veuQscn9MxNNLP8Er1h4-NofwpgkDrFuQA-JX5ee3vztlo7rKKj4ntjyHQmoWwiS1eS9_JPUd1FRH4YmjW3zqz8UNcABw7I/s1600/Dave+%2526+Anthony+006.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="150" width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh87SPxoi6iaROUJPelgw6Tm9G3lOtzzdl-ka_aN4T-9pE32veuQscn9MxNNLP8Er1h4-NofwpgkDrFuQA-JX5ee3vztlo7rKKj4ntjyHQmoWwiS1eS9_JPUd1FRH4YmjW3zqz8UNcABw7I/s200/Dave+%2526+Anthony+006.jpg" /></a></div><br />
<i>Someday, the light will shine like a sun through my skin & they will say, What have you done with your life? & though there are many moments I think I will remember, in the end, I will be proud to say, I was one of us.</i><br />
-Brian Andreas<br />
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I attended my first scleroderma support group this past Saturday. It is a strange and comforting and disturbing experience: I see around the room the old me, the present me, and the future me. Kind of "A Christmas Carol" moment. :) But, more importantly, I enjoyed just meeting new friends and laughing about some of the unusual shared issues faced by those with this disease.<br />
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I am also a week away from the answer to the question that seems to be most concerning to me of late: what is my pulmonary artery pressure? I will celebrate Valentine's Day with my cardiology team in the cath room and hope for good news there!<br />
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Just hoping the weather's not too ugly in Chicago next week... we have enjoyed, as my friend Marcy says, Chamber of Commerce weather the past few days in San Diego. Gorgeous, sunny, crisp and clear. I had a wonderful ride on Xander this morning and was even able to sneak in a little trip to Disneyland with my children, husband and parents last week! <br />
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I feel my arthritis slowly but steadily creeping back up on me. I didn't miss it while it gave me a brief respite. Just hoping the big news is good news. Wish me luck!Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com5tag:blogger.com,1999:blog-106270613784052308.post-50589553476221065662011-01-21T15:06:00.000-08:002011-01-21T15:06:08.056-08:00Gearing up for Progress... or Failure<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhud4FQnYt_JjaoLEvDyS-t-vwGFltp65rcbmOmsFfYtMlFncppgn1eLeTKwV44ew7k5aMm83pp58pV9NVP6qBnJb46GdImKHtinjVUqxPmiO7s2tA02A00DMIRZd271MlZyLvUKufMd2mt/s1600/SFlogo_color_300dpi.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="130" width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhud4FQnYt_JjaoLEvDyS-t-vwGFltp65rcbmOmsFfYtMlFncppgn1eLeTKwV44ew7k5aMm83pp58pV9NVP6qBnJb46GdImKHtinjVUqxPmiO7s2tA02A00DMIRZd271MlZyLvUKufMd2mt/s200/SFlogo_color_300dpi.jpg" /></a></div><br />
It's funny how someone sends you the right thing at the right time, so often. I bit off more than I can possibly chew this week, without a doubt. Still struggling with C. diff, and still not able to spend a lot of time on the computer, etc, I agreed to a leadership position with the Scleroderma Foundation, Greater San Diego Chapter. I am trying to arrange our Education Day on June 18 (please come!!!) and have great aspirations and dreams of success. These were somewhat dampened at my visit with Dr. Furst this week when he cautioned me that starting a new event like this is going to take time. Expect 30 people or so, he said, and I cringed inside. All this work for 30 people? Wouldn't that feel like failure?<br />
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And then my wonderful friend, Sarah, sent out a little link on Facebook to a story about a man who started a nonprofit in Rhode Island meant to foster creativity. An audience member at a recent talk asked him what the best way is to go about that. And he answered:<br />
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So much of our existence is mediated. We're getting billions of messages every day telling us what we should wear, what we should eat, what we should drive, how we should look, who we should date, you know, whatever, and you come to AS220 and someone starts playing a guitar solo, and they fail.<br />
And they start again.<br />
That's human.<br />
We could all identify with that.<br />
It's amazing.<br />
Okay?<br />
And it's empowering to us to have that experience and make that connection. As opposed to being fed perfection. Something we cannot identify with. That's humbling - not humbling, it's, it's, it's, demoralizing -- you know? Because we can never live up to those expectations. So we keep buying more, to try to achieve these expectations that are false.<br />
So I think [the answer is] creating environments where people feel safe to fail, and other people have the opportunity to experience that.<br />
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So, it's given me pause, these messages that I have been gently getting this week. I can't always expect perfection and will try to be satisfied with progress, slow and steady. And I will try to see my many failures in this new light.Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com8tag:blogger.com,1999:blog-106270613784052308.post-10843137003637522692011-01-06T22:31:00.000-08:002011-01-06T22:31:53.431-08:00The (Kick)Boxer<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNtUY2futYHqnF4Y-vapafu8lBiag_2NWENCsGTqjminecBpAJivf3udrByDSgelayzg9g8TZMtajiYLm0_yVtfHj8CJ7ZkezYOso2hkyeV7sVNbIsiXxlJ_GhcFmAlRvMzHhE_gcY3Apv/s1600/Boxer.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="200" width="138" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNtUY2futYHqnF4Y-vapafu8lBiag_2NWENCsGTqjminecBpAJivf3udrByDSgelayzg9g8TZMtajiYLm0_yVtfHj8CJ7ZkezYOso2hkyeV7sVNbIsiXxlJ_GhcFmAlRvMzHhE_gcY3Apv/s200/Boxer.jpg" /></a></div><br />
In the clearing stands a boxer<br />
And a fighter by his trade<br />
And he carries a reminder <br />
Of every glove that laid him down<br />
Or cut him 'till he cried out<br />
In his anger and his shame<br />
"I am leaving, I am leaving"<br />
But the fighter still remains<br />
<br />
<i>-Paul Simon</i><br />
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As 2011 begins, I am reminded of the importance of the fight. I know that everyone has causes near and dear to their hearts, so this isn't just about scleroderma. But, today I found myself thinking about my friends who have lost their fight against this disease, and I just wanted to acknowledge their fight and their impact, in the hope that the blows they threw will collectively result in a knockout in the not too distant future. <br />
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My new year's goal is to become a better fighter. I am going to become more active with the Scleroderma Foundation now that the bulk of my treatment is behind me. I have Bonnie as my muse. :) Today is her birthday, so she's on my mind, too. <br />
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Unfortunately, my main fight will be delayed by the warm up act: a (hopefully) brief third round against C. Diff. I knew this was coming, so it's no surprise, and quick action from my doctor has hopefully staved off the worst of it this time. <br />
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And my fight will enjoy many interruptions of the best kind, if 2011 goes my way. We head to the desert to watch the boys play tennis again this weekend, and hope to hit plenty of horse shows in the year ahead, too! But, I am looking forward to focusing much of my attention and time on the fight... that is after I find my brain and my ambition, both of which seemed to have taken a much needed (?) hiatus in 2010. For the record, it was my brain that made me type "much needed" in the prior sentence. When it acts, it acts on its own these days.Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com5tag:blogger.com,1999:blog-106270613784052308.post-86183325515663960482010-12-26T23:10:00.000-08:002010-12-26T23:10:58.540-08:00Happy Happy!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGCf8Mn-fwZ5_Kpw-X9IHrNQVujt_8yfqcrEtPiUHZXQQ7ZYYFsdjVd9-T5pvR8G0QmK0aUUwqrDGrv_sm8OQPavtQxOu8EiXMmDt5VLoCr0PVyYRWx5rmgmw7FEJNkEQmdFRtRzjgHSkA/s1600/IMG_1846.JPG" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="144" width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGCf8Mn-fwZ5_Kpw-X9IHrNQVujt_8yfqcrEtPiUHZXQQ7ZYYFsdjVd9-T5pvR8G0QmK0aUUwqrDGrv_sm8OQPavtQxOu8EiXMmDt5VLoCr0PVyYRWx5rmgmw7FEJNkEQmdFRtRzjgHSkA/s200/IMG_1846.JPG" /></a></div><br />
Just a little note of gratitude for all of the wonderful people in my life. :) Best wishes for a wonderful and healthy 2011.Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com3tag:blogger.com,1999:blog-106270613784052308.post-5687308467142388422010-12-21T21:34:00.000-08:002010-12-21T21:34:20.445-08:00Merry Christmas, My Friends!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG_Rty2SpRl2PMgqO3unS6TaMrvSZKmT5UYIfu6-auPC1e6ysVE6zHymx8Kb6OCZsnI4sGSYooJccGWwJ8oevWygmpBEMtTiNDzNnLAiMfRm73QkhB18tpmJl6MvAHKNxOSIDOdSkBJudX/s1600/IMG_1548.JPG" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="222" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG_Rty2SpRl2PMgqO3unS6TaMrvSZKmT5UYIfu6-auPC1e6ysVE6zHymx8Kb6OCZsnI4sGSYooJccGWwJ8oevWygmpBEMtTiNDzNnLAiMfRm73QkhB18tpmJl6MvAHKNxOSIDOdSkBJudX/s320/IMG_1548.JPG" /></a></div><br />
It's the most wonderful time of the year!<br />
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I hope everyone is having a wonderful holiday season. I feel a great sense of renewal this year, celebrating my first Christmas with my new immune system. :) <br />
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Steve arranged a little birthday celebration for me (see pic), reserving a private room at my favorite restaurant so that I could be with my close friends and family. It was such a fun evening, and we could just relax and chat for hours. <br />
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I am planning a fun gathering for Christmas, as well. I admit it's hard to get it all together, but that's true for everyone, and I am so grateful that I am able to try! Can't wait! Almost ready...<br />
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Last thing to do is build a small dock out front so that arriving guests will be able to "park" despite all of this rain. :)Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com1tag:blogger.com,1999:blog-106270613784052308.post-78894223257676502492010-12-13T19:33:00.000-08:002010-12-13T19:45:47.810-08:00Going Dutch!<object width="480" height="300"><param name="movie" value="http://www.youtube.com/v/oNPnvkKbdqQ?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/oNPnvkKbdqQ?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="300"></embed></object><br />
Steve has paid his dues with me in so many ways, but perhaps none so great as riding in the hunters. For the past 3 years (since I was so rudely removed from tennis!), he has diligently taken riding lessons so we could once again share in sport. Dressed in his coat and tie, he has successfully competed in the hunter classes at the horse shows, stealing only a brief yearning glance now and then at all the OTHER men riding the big jumpers (in regular shirts!) in the grass field.<br />
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Now Steve's time has come. We've gone Dutch! We purchased Alexander, a 14 year old Dutch Warmblood jumper who had become a bit homeless after the death of his owner last year. His circumstances and ours aligned just perfectly, and we are a two horse family. :)<br />
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I have been riding Xander as well as Atlas, and having a great time. My scleroderma does interfere with my riding, and poor Xander is now "bitted up" like my good old Atlas in a stronger port-style bit. Because I am not able to close my fingers on the reins, I need more control with a strong bit in the horses' mouths. I tried one day to ride Xander in the jumper field, but my endurance is not there yet. I am still quite short of breath and need short courses and frequent breaks.<br />
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However, just when I was feeling sorry for myself and feeling like I wasn't making progress, I happened to send a video of myself on the new horse along to my doctors in Chicago. I email with them quite a bit, as I get my labs drawn here and communicate results back to them, so I attached the video on a lark. I was super surprised to hear back right away--they were quite impressed! Dr. Burt is hoping to use the video in an upcoming presentation on stem cell transplants. :) I made a short version for him, which you can view above, and I hope it helps to inspire hope in others with this disease. It really felt great to know that I was actually ahead of schedule.<br />
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Except on my holiday cards. :)Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com8tag:blogger.com,1999:blog-106270613784052308.post-48797172987047833292010-11-24T22:32:00.000-08:002010-11-24T22:32:21.205-08:00Happy Thanksgiving!<div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxkZEmi8ItOSEqyCNeu3Vx1OaelmdwFwoYs6N6rNbME_zKXQpLtoWtoLGvPbaNs-7ZHEBSvZ4_NB9F-Qg51gCFpTqg5xbXsldTQU1qlwCxWCu_MGrQyYV70z24R9VWqrnm6YqDLQ9iUmSB/s1600/IMG_1363-1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxkZEmi8ItOSEqyCNeu3Vx1OaelmdwFwoYs6N6rNbME_zKXQpLtoWtoLGvPbaNs-7ZHEBSvZ4_NB9F-Qg51gCFpTqg5xbXsldTQU1qlwCxWCu_MGrQyYV70z24R9VWqrnm6YqDLQ9iUmSB/s320/IMG_1363-1.jpg" width="213" /></a></div>I can hardly believe that the holiday season is upon us. When I first came home from the hospital, the days dragged by in slow succession. This past month, as I've tried (unsuccessfully) to catch up a little, it seems the days went by in a blink.<br />
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My amazing tennis team, with whom I have not been able to play for over 2 years now, had a 100 days party for me! I was able to make my first "public" appearance in--if not a crowd--at least an intimate group of healthy people. It was such fun to see my good friends and catch up on everything I've seemed to have missed of late. <br />
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I've taken in a boarder, of sorts... a friend called with stories of a beautiful homeless horse; so, unable to resist, I welcomed him into my life... if only for a while. He's in the photo on this page, with my trainer aboard. We will see. It's the first truly crazy, impulsive, shall we say "Holly-thing" I've done in several years. It felt GREAT! The excitement of seeing him come in off a trailer in the dark, unsure what color he might be, and then riding him these last few days and seeing what a gem he is... it makes me feel young at heart. <br />
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The only thing that doesn't make me feel young at heart these days is my dang heart. I saw my pulmonologist today to review the latest echocardiogram. She suggested a referral to the heart failure clinic. My heart is showing "global hypokinesis" and a low "ejection fraction." Although initially assumed that these issues were related to the lung disease, and may still be, several doctors have now suggested that scleroderma is in my heart causing the same stiffening of the tissues. This does not allow the heart to relax properly when it needs to... like... every beat. So, this can lead the heart to fail as a pump. Medications could be changed, things could be addressed, but not with impulsive Holly (who needs to get right back to the stable) driving this car.<br />
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I talked my doctor into another 4 month check. These data seem pretty similar to August, and I still have to hope that the hit my heart took during transplant will recover. After all I went through to regain my health, I just need to keep hoping that the heart can bounce back. It got hit from all sides--high pulmonary pressures, interstitial lung disease, huge chemo doses, and now this scleroderma infiltration (presumed) causing diastolic dysfunction. <br />
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But my heart told me what it needs. It just needs more time at the stables, to let go of it all and do some riding. :) <br />
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Happy Thanksgiving to all. I wish I could be with you, but know you have my love, and that you are the blessings I count on this day and every day.Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com5tag:blogger.com,1999:blog-106270613784052308.post-20035110313666006582010-11-10T19:44:00.000-08:002010-11-10T19:44:46.516-08:00Life to the Theme From Star Wars<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh90OI_xRPL7dlv_828-NhmBBasck2M5efrtmbC4K9ErC0SykpEO0MwnvzgfnLesh8V6eOJH_UTbmHzo8b0Y5wLyss53gJ4ymQqRqGr-hrtVdgPvbx3PjzoMDnuzqRVP60FiJy-BANtcGfN/s1600/Photo+on+2010-11-10+at+19.26.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh90OI_xRPL7dlv_828-NhmBBasck2M5efrtmbC4K9ErC0SykpEO0MwnvzgfnLesh8V6eOJH_UTbmHzo8b0Y5wLyss53gJ4ymQqRqGr-hrtVdgPvbx3PjzoMDnuzqRVP60FiJy-BANtcGfN/s320/Photo+on+2010-11-10+at+19.26.jpg" width="320" /></a></div>It's a typical evening at the H-W home. Luke and Jake are practicing piano. Jake is learning... you guessed it... the Theme from Star Wars, which I have come to know and love. :)<br />
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It's wonderful for me to see life returning to its usual rhythm, with its usual ebbs and flows. I feel such an incredible weight off of my shoulders now that the stem cell transplant is behind me. I know that I have done everything that I can do medically to overcome this disease, so I am freed from the worry and angst of what I should (or shouldn't) do next. I still take my handfuls of pills each day, and still have plenty of symptoms, but that nagging feeling of impending doom just seems to have floated away.<br />
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It may have found you, or someone else I know and love. Possibly the worst thing about having scleroderma is the conversation I have all too often... it always begins with, "I know this doesn't compare to what you are going through..." and ends in any number of personal crises. I am sorry if I haven't been the kind of friend and listener I once was, but I promise--I'm back. Bring it on. If I can help, if you need a shoulder, or just a good ear, please let me know. <br />
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And for those who haven't seen me lately, I'm finally growing some hair! And eyebrows! And eyelashes! I don't have a real photo, so my Mac Photo Booth will have to do for tonight.Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com8tag:blogger.com,1999:blog-106270613784052308.post-33325780557192770642010-10-31T22:05:00.000-07:002010-10-31T22:05:19.814-07:00Happy Halloween!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqh2I5oFzi1dGMV5TsygPYmpbXkbplebYWr85qVRhgKYMU4-N6s8vx5ldUFDnPVyT2UOLENhtoe4yr4ttgrgKrQRFYejXl6EeANjoBI37jlTgi4_ADcg3seEB0n6GuuWN3nZRAq1JTO8CM/s1600/IMG_1356.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqh2I5oFzi1dGMV5TsygPYmpbXkbplebYWr85qVRhgKYMU4-N6s8vx5ldUFDnPVyT2UOLENhtoe4yr4ttgrgKrQRFYejXl6EeANjoBI37jlTgi4_ADcg3seEB0n6GuuWN3nZRAq1JTO8CM/s320/IMG_1356.jpg" width="213" /></a></div>With most of my spooky times behind me, I am enjoying a slow recovery from the stem cell transplant. :)<br />
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My hair is coming in, my eyebrows are back, and I even had to shave my legs! My gut is recovering, and an annoying cough seems to be the last remnant of the two bouts of pneumonia. <br />
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I saw my specialist at UCLA last week, and my skin score had worsened a bit from the last visit in September. I was not shocked--in fact, I was more surprised when it was so improved last time. I had never expected improvement, just hoped for stabilization of the disease. I recall that my skin score improved briefly after Cytoxan last year, as well, so perhaps the temporary loosening was also related to the pre-transplant Cytoxan. I am hopeful that it will stabilize.<br />
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I have been exercising a little, with the heart rate still a limiting factor. Further research suggests it is also a temporary post-transplant phenomenon. I am advised to wait 6 months and it will normalize, but my doctor is checking an echocardiogram just to be sure. :)<br />
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The boys, however, just don't stop moving. Jake had a huge win in a tennis tournament in Palm Desert this weekend, and Luke was a consolation round finalist. It was great fun to be outdoors in the warm, breezy, desert air watching the boys play beautiful tennis. After the long weekend away, I was ready to collapse, but the boys inspired me to help toss up some Halloween decorations--and away they went trick-or-treating! It was all I could do to answer the door. I got some funny looks when I forgot my hat...some of the kids must have thought I went all out for Halloween!Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com2tag:blogger.com,1999:blog-106270613784052308.post-85619093320920364012010-10-19T20:58:00.000-07:002010-10-19T20:58:05.228-07:00Back in the Saddle<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhx1VP-fbudFljq1hLo_5FCqufuCS49ZVe1UipMyyzwA1EGKSc3hRl5bZeAlw806fc1oFOYK1bbsOB460pe6vbdgRV4FgtLWcQRSXwenZH_jkHNaTqSAiSOUfGHsVNqk5nLA1opFtGGuVe/s1600/1313--6203.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhx1VP-fbudFljq1hLo_5FCqufuCS49ZVe1UipMyyzwA1EGKSc3hRl5bZeAlw806fc1oFOYK1bbsOB460pe6vbdgRV4FgtLWcQRSXwenZH_jkHNaTqSAiSOUfGHsVNqk5nLA1opFtGGuVe/s320/1313--6203.jpg" width="320" /></a></div>I am thrilled to report that I was able to ride my sweet Atlas last week--not once, but twice! I rode for just a few minutes, but dang I was sore! I have lost so much endurance and muscle since this photo was taken just a few short months ago in May. However, that is a small price to pay for the potential benefits this stem cell transplant may bring.<br />
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One issue which is keeping me from increasing my exercise program more quickly is persistent tachycardia (fast heart rate). I'm not sure if it is a double edged sword--my deconditioning is leading to the tachycardia which limits my exercise capacity... or if the cardiac involvement of my scleroderma is leading to the tachycardia... or if the Cytoxan-mediated weakening of my heart is more persistent than my doctors in Chicago had hoped. My gastroenterologist discussed the issue with me at our visit this week. She was concerned enough to suggest cardiac testing, but I admit I'm hesitant given how much testing has been done on my poor heart already this year. <br />
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So I continue with my short little exercise routines and hope for the best.<br />
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Promised updates: Jake lost in the quarterfinals of his last tournament, and Luke's been rained out.<br />
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Yes, it's true non-Southern Californians! We've had a week of drab and rainy weather! You can gloat away.Hollyhttp://www.blogger.com/profile/02361765105991101873noreply@blogger.com4