tag:blogger.com,1999:blog-76490111144696141992024-03-14T06:38:43.564-04:00My Stem Cell TransplantPatrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.comBlogger78125tag:blogger.com,1999:blog-7649011114469614199.post-73263608341521761782017-08-31T23:53:00.000-04:002017-08-31T23:53:07.790-04:006 years!I celebrated my immune system's 6th birthday on the 26th! I finished with the trial last year, so no followup in Chicago this time. Dr. Burt wouldn't use the word cure when I last saw him, but did say that he doesn't expect me to have to worry about Crohn's again. That sounds like a lot of words for "cure," to me. I'm still symptom and medication free and, considering how much better the rest of my health has gotten over the last year, I'm not concerned about pursuing any testing.<br />
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I read one of the most empowering books I've ever read a few months ago called <i>You are the Placebo,</i> by Dr. Joe Dispenza, which helped me to understand and explore an aspect of my stem cell transplant that I tried to write about after my two year followup but I couldn't figure out. The book explores the placebo effect and how your past memories, states of being, thoughts, feelings, attitudes, beliefs, and perceptions interrelate to influence your health.<br />
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These ideas helped me recognized that, even during the worst parts of Crohn's during my teenage years, a small part of me maintained the belief that I would eventually be healthy, and not too far along into my life. I of course had no idea how this might happen at the time. It felt as if there was a block on my mind that kept me from imagining too far into my future. I remember daydreaming and finding it believable that I could become healthy and figure out how to trick someone into entering a relationship with me, which would give me the opportunity to explore the intimacy and love I was lacking (which happened). I didn't consciously imagine a lifetime of suffering, though part of me implicitly knew that's what was in store if something didn't come along to heal me, as is customary with an incurable, chronic illness. Amidst my daydreams and fantasies of my own demise that regularly accompanied dissociation from my pain and misery in hopes that something would remove me from that suffering, the blockage of imagining a prolonged, suffering-filled existence too far into the future allowed a more open space for me to imagine the possibility of becoming healthy. While I still have no idea how reality actually works, it is completely clear to me now that things are more likely to happen if you believe they are possible and things are less likely to happen if you believe they're impossible. These beliefs would not have taken root had I not sufficiently entertained them.<br />
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My belief in this stem cell transplant was amplified by seeing the promising results of the trials. It seemed too good to be true. I got as carried away as I could with the idea of a stem cell transplant fully restoring my health. I was all in. The two most likely outcomes, in my mind, were achieving a very high level of health or dying, both of which, at the time, were preferable to my dance with Crohn's. Still having a strong preference between health and death, I spent much more time imagining what I might get to do when I became healthy. The death option didn't evoke further potential imagining because I didn't understand death yet, which spared my attention for more productive, life-affirming uses.<br />
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Despite being allergic to one of the chemotherapies, I had pretty much an ideal transplant. Other patients I talked with generally didn't tolerate the chemo as well as I did and had other issues pop up. I fully believed the stem cell transplant would make it so Crohn's wouldn't be a problem for me again. Dr. Burt was even updating to a new protocol with the intent of getting even longer remission for patients which only fueled my fantasy of being fully healthy and never having to deal with Crohn's again. The fantasy, as I best understand it, was ultimately comprised of the past memories, thoughts, feelings, states of being, attitudes, beliefs, and perceptions that Dispenza explores. My memories of childhood before Crohn's helped me to recall that being healthy <i>is </i>possible in my life. These memories connected me with thoughts about living life as a healthy person, and what it might feel like. Through these thoughts and feelings my imagination had the capacity to take me beyond my typical state of being, which was rooted in fear and despair, and entertain a more peaceful, healed existence. While it feels impossible to quantify, I am left to suppose that these aspects planted and nurtured the tiny seeds that would grow quietly in parts of me that blossomed into an attitude of perseverance, that things would work out, which came with the optimistic belief that I would be healthy. Having a semblance of connection with this belief, seemingly enough to keep it functional, let me be open to perceiving the ways that life could orchestrate such a grand recovery for me if I was able to be open to it and work towards it.<br />
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Having this knowledge of how the mind works, and my personal encounters with its dynamics, I am left being very cautious about how to optimally view my health. How would I consciously balance a grim prognosis of illness, and what we've learned about health and medicine, with the knowledge that I am likely to be healthier with a mindset which involves <i>not</i> believing that a terminal diagnosis means I will likely be unhealthy and die? How much do I choose to believe in myself versus a very real seeming medical diagnosis, with potentially millions, billions, or trillions of dollars of industry and research behind it? Given my experience with a previous doctor saying that I don't need a stem cell transplant and that my Crohn's was all in my head, and my experience with mainstream mental healthcare proposing ideas that were off the mark of the roots of my problems, I'm uncomfortably familiar with the need to reject ideas that don't ring true or seem like they will serve me well, even if they come from an authority figure with years of knowledge and experience. If I crumbled to my doctor and went with his assertion that I didn't need a stem cell transplant and it was all in my head, I would not be as healthy as I am today. If I never saw through the wild goose chase the Western approach to mental health sent me on, I would not have secured my scant grip on reality, and probably be medicated, thrown into a psychiatric hospital, or dead.<br />
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The farthest I've figured to take this so far is to hold conflicting viewpoints as holding essential elements of truth. I might be afflicted with an illness that comes with a set of constraints that I have to honor to restore my health, but I would temper any pessimism or fears of fatality, and rely more heavily on nurturing empowering, optimistic beliefs. Just because there "isn't a cure" for something <i>yet</i> doesn't mean it's a good idea to assume you won't be cured. There is a certain degree of value to installing productive, life-affirming beliefs regardless of how true or believable they may seem at the time. This flirts with questioning the validity of science and medicine, which can be terrifying to confront, especially from a vulnerable-feeling position of illness, but it's also freeing if you go through the process. Questioning what ideas you accept as reality and the beliefs you permit to function in your subconscious is a birthplace for harnessing power and control over your health. No matter how impressive their lab coat is or their credentials are, be wary of buying ideas from anyone who seems overly certain of how reality actually works, especially when the ideas are unfavorable to your life. There's no substitute in the world for your intuition based on direct lived experience.<br />
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Where I would be without having spent a period of life physically healthy for comparison. Where would I be if the rest of my mental structure was steering me away from health because I lacked appropriate mental inputs for believing I could achieve health? I'm not sure yet what advice I would give to another person about all of this, but I know what I'd do. If I were to get sick, you would find me stacking the deck in my favor; leveraging my mind as much as possible, imagining pathways that lead me to health, and taking every step along those pathways I could to strengthen my body and supply what it needs to heal. I now view medical professionals as people who are well intentioned, hopefully will be helpful, potentially incompetent and having blindspots, and ultimately capable of helping me figure out my health, even if I have to do work on my own. I am ultimately the one responsible for wringing out all of the life I have here.<br />
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I'm still in the process of exploring and understanding how my trauma relates to my experience with illness and health. I can't help but notice parallels between immune system and psyche. Something compelled my immune system to identify my body as a threat and attack it. In a similar way, my childhood trauma installed negative beliefs about myself and the world that would generate negative thoughts and feelings, unhelpfully attacking my mind (hello, inner critic!), causing more damage the longer this went unchecked. This also left me susceptible to other threats (unhealthy relationships, tolerating unhealthy behavior, abandoning my own needs, taking responsibility for others' emotions, to name a few), in a psychoemotionally weakened, boundary-broken state. In a similar way, my body was more prone to getting sick and other ailments due to an immune system preoccupied with attacking itself, on top of the disruption from steroids and immunosuppressants. Destroying my immune system with chemo to reset it did the trick for my immune system, but I haven't had the same kind of psychoemotional reset. I think psychedelics hold promise for achieving something like this, which I can hopefully speak to from personal experience in the near future. In lieu of that, a guerrilla warfare style of healing has moved me along my path to mental health. Meditation, yoga, therapy, writing, dance, intimate relationships, nutrition, exercise, marijuana, studying trauma, psychology, spirituality, and other tools have provided guidance for identifying and uninstalling the negative beliefs that still haunt me from the past. The good news is, there's no shortage of replacement ideas and beliefs to try on to see if they will help me get to where I'm interested in taking my health and my life.<br />
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I intend to explore and share more as I glean more understanding of these disorienting experiences that I can put into (hopefully) coherent words. I know there's still much more to uncover, and I'm extremely grateful to have the physical and mental health to put these puzzle pieces together.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com4tag:blogger.com,1999:blog-7649011114469614199.post-36058033180669953962016-11-22T18:46:00.000-05:002016-11-22T18:46:11.972-05:005 Year FollowupFinally getting around to posting an update. I had my fifth and final followup in August, and celebrated my immune system's 5th birthday. The followup went really well. Everything is still fine. No signs of Crohn's, and I'm not on any medication for it. I hadn't thought to use my right to opt out of the parts of the trial that I didn't want to do until the day before my colonoscopy was scheduled when, during a moment of clarity, I thought, "why the <i>hell </i>am I going to get a colonoscopy when I don't want or need to?" So I skipped it. I had already done the abdominal MRI by then, so they had some data, and I got to enjoy my time (and eating) in Chicago more.<br />
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After reflecting, now that the I'm finished with the trial, I realized this treatment gave me a new problem. My expectations for my health drastically increased, and I now take it for granted at times. Which is a much better problem than expecting to be sick indefinitely, so I'll happily take it. Before discovering that a stem cell transplant was an option, my prognosis was grim, so I had penciled in suffering and misery pretty much indefinitely for my future. A life of sitting on the toilet, playing videogames, and going to the doctor certainly wasn't what I dreamed of, but seemed most likely. I am <i>extremely</i> fortunate that all of the many pieces came together for this and to be so healthy today. It is still weird to think about the gloom of my diagnosis when I was 10 and that I escaped what's usually a life sentence. I am humbled and so fortunate that the world conspired for me to have a second chance at life without this horrible disease.</div>
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I haven't healed from all of the damage Crohn's inflicted, but regaining my physical health put me in a position to discover the psychological trauma that was lingering. It managed to go unnoticed by any of my healthcare providers over the years, including a psychiatrist and therapist. It turns out that emotional neglect/abuse and years of a severe chronic illness that left me disabled gave me a lot of wounds to heal, and many doctors are unprepared to help. I wonder how much less severe my case would have been if I had a good therapist alongside my physical treatment. Given the incompetence (which I don't mean insultingly anymore) I encountered with my physical and mental health issues, I have to urge you to take charge of your own care. I'm afraid to think of the condition I would be in right now if I surrendered to what my doctors and therapists had to offer. Good intentions do not equal good care.</div>
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For other patients reading this, I finally started to get a handle on what I was experiencing with the <a href="https://en.wikipedia.org/wiki/Trauma_model_of_mental_disorders">trauma model</a>, and I hope you find it valuable if you need it. The framework of the DSM and its diagnoses didn't give me a detailed enough picture to make real progress. I "had" depression, anxiety, ADHD, suicidal thoughts, no self-esteem and the rest of that wonderful package, and the cause was a lifetime of unprocessed emotions and pain. At this point, I honestly believe my trauma caused and/or worsened my Crohn's as a way of trying to save me from suffering (yes, that's as morbid as it sounds). I'll probably never know for sure, but it wouldn't be the most shocking consequence of trauma I've heard of.<br />
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Thank you to everyone for the support over the years. I'll update this if anything significant about my physical health changes, or just to say I'm still doing fine at some point in the future. I'm not expecting any health issues because of the stem cell transplant to crop up, but you never know. I still don't have the best immune system on the planet, but it's not trying to kill me anymore. And I plan to be able to say the same about my mind soon, too.</div>
Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com3tag:blogger.com,1999:blog-7649011114469614199.post-92026989047034540592015-08-26T21:45:00.001-04:002015-08-26T21:45:30.435-04:00Year +4No update since last year because there hasn't really been anything to say. I'm still symptom free and Crohn's medication free. I had my 4 year followup at Northwestern a few weeks ago and, as expected, all of my tests (blood work, MRI, colonoscopy and biopsies) came back fine.<br />
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I asked Dr. Burt again about his thoughts on remaining Crohn's free long-term. He previously told me he expected that I would remain Crohn's free for "a good number of years," which wasn't particularly quantifiable. With the data he's collected and the transplants he's done since, he said he doesn't think I'll relapse. That's obviously not a guarantee given how little data there is, but I don't think he would have changed his prediction without good reasons. He was very hesitant to use the word "cure" in the past and, to me, it's semantics. Not relapsing and being cured are effectively the same as far as my quality of life is concerned.<br />
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Overall, the transplants using umbilical cord blood weren't doing exactly what Dr. Burt thought they would, so he is revising the trial protocol to achieve better results in terms of lasting remission with future transplants. He now thinks the key to long lasting remission is the chemotherapy regimen, so he's proceeding with trials using sibling donors and autologous stem cells because they are safer to use. There may also be a characteristic of the umbilical cord blood stem cells that is important in long-term remission, but not enough is known yet for him to be sure. That sounds like what he will investigate if just the chemotherapy protocol doesn't do the trick. My chemotherapy protocol was almost identical to the one he is going with for the new trials, and I received umbilical cord blood stem cells, so that, from my understanding, is why he thinks I won't relapse. Just have to wait and see what the new data says.<br />
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I'll have one more followup next year that technically counts for the current trial since the primary concerns are safety and efficacy. Beyond that, I'll happily continue to followup if the logistics are feasible.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-25959972150616614992014-08-26T13:16:00.000-04:002014-08-26T13:16:01.676-04:00Year +3It's been a while since the last update but, again, there hasn't been much to say. I almost made it through my ~6 month trip abroad without getting sick, but I ended up with a cold at the very end of it, most likely due to too much exercise and not nearly enough rest for a week straight. If I remember correctly, my last cold happened over a year before that, and I've been far from a germaphobe.<br />
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I had my 3 year followup at Northwestern in the beginning of August. MRI and colonoscopy showed no sign of Crohn's. Biopsies and blood work were normal. Dr. Burt ordered another chimerism test. He said he has had patients who didn't show any of the donor's immune system until later on, so he wanted to check it again. The results for that should be back within a few weeks. I'll post another update if anything is different, but I think the chances are low for the chimerism to change at this point, so I'm not expecting it to. My reflux stays in check as long as I remember to take Aciphex, and I'm still symptom free and medication free as far as Crohn's is concerned. I'll post another update around the end of the year if nothing noteworthy happens before then.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-31061715104643599282014-01-15T19:45:00.000-05:002014-08-13T13:59:19.784-04:00+2 Years, 4 Months, 19 DaysNo real news on the medical side of things. Still doing very well - no symptoms except for reflux when I forget to take my medication.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-20571612760020960242013-11-27T22:27:00.000-05:002013-11-27T22:27:06.892-05:00+2 Years, 3 Months, 1 DayI didn't mean to go so long without posting an update, but you can continue taking no news as good news. Counting the days is a bit too annoying now, but it has actually been 27 months as of yesterday since day 0. I celebrated my second "birthday" 3 months ago, and things are continuing to go well. I'm still symptom free and medication free. I have been having a bit more of an issue with acid reflux when I'm more active (weightlifting, specifically) but taking Aciphex twice on days when I need it seems to be doing the trick. I haven't been sick since my last cold in May, aside from food poisoning/a short GI bug. Hopefully there's not much to report before my next followup in the summer, but I'll try to post an update in January.<div>
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Some other exciting news is that I will be studying abroad at Uppsala University in Sweden for the spring semester. I have kept my blog posts pretty dry and to the point purposely so the stem cell transplant can speak for itself, so I intend to start another blog that will have some more substance for those interested in keeping up with my adventures, which I will link to here when the time comes.</div>
Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-51911839579158885572013-06-20T19:05:00.002-04:002013-06-20T19:05:33.813-04:00Day +664, 2 Year FollowupIt's been a while since my last post but that's because there hasn't been much to say. Since then, I came down with the flu in March, for which I got Tamiflu, but that passed without any issues. I also had a sinus infection in May, which went away a bit more quickly than previous infections and without an antibiotic. It would appear now that I'm lactose intolerant since milk hasn't been sitting well with my stomach but I feel fine when I don't drink it. Still no Crohn's issues.<br />
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I had my followup at Northwestern last week. I had bloodwork, an MRI, and a colonoscopy for testing, and saw the GI and Dr. Burt. All of the tests showed no signs of active Crohn's. Dr. Burt said that the chimerism may not actually be an overwhelmingly important piece to staying Crohn's-free long term, which may be good news for me since I didn't inherit any of my donors' immune systems. They've had varying degrees of success with transplants since mine, it seems, but I don't know much beyond that. They just need more patients to collect more data to figure it all out.<br />
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I won't have another followup until next summer, but I'll try to remember to periodically post updates even if not much has happened.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com1tag:blogger.com,1999:blog-7649011114469614199.post-77017111768154164242013-02-10T20:49:00.000-05:002013-02-10T20:49:07.943-05:00Day +534I got over the rest of the cold reasonably quickly. As expected, the chimerism results came back 100% my own cells. The fertility testing came back completely normally. I misunderstood how the immunization titer testing would be handled. They actually didn't test for it at my followup, so I'll see my PCP at some point when I'm not at school and get that done. Dr. Burt didn't say it was terribly pressing and that I need to take care of it right away so I'll wait until it's more convenient. Other than that, I'm still feeling great. No symptoms whatsoever.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-22430826339310022902013-01-14T23:59:00.001-05:002013-01-14T23:59:48.018-05:00Day +507, 1 Year FollowupI managed to get a cold a few days before going to Chicago, but it hasn't been that bad. I'm still not quite over it, but I think I will be soon. I saw my GI, Dr. Yun, on Monday. It was pretty uneventful - just a normal assessment. I'm going to take Aciphex every other day now and see if that's enough to take care of the reflux. I'm still not on any Crohn's medications. I got my blood drawn afterwards, including for one last chimerism test, which was just part of the protocol for the 1 year followup. No expectation for it to have changed since last time.<br />
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I had a colonoscopy on Wednesday. Everything went very well for that. There were no signs of active Crohn's Disease, just leftover scarring and pseudopolyps. Dr. Yun took biopsies all throughout and those showed no signs of active Crohn's, as well.<br />
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I had an MR enterography (same process as last time) and then saw Dr. Burt on Friday. When I met with Dr. Burt, he had the results. Again, no signs of active Crohn's Disease. Regarding the blood work results, everything was fine. My sedimentation rate and C-reactive protein (inflammatory markers) were barely above normal. That is most likely due to my cold, though, given the rest of the tests showing no issues.<br />
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Dr. Burt was, of course, extremely happy with how I am doing. So pleased that he won't <i>let</i> me have another colonoscopy unless I start to have symptoms. The results regarding whether or not I'll need my immunizations again will take a while longer to come back, as will the chimerism test. I'll post another update about that when the time comes. After that, there isn't much else to be concerned with other than how long I stay Crohn's-free.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com4tag:blogger.com,1999:blog-7649011114469614199.post-71014366937116720512012-12-27T15:52:00.004-05:002012-12-27T15:52:30.597-05:00Day +489Not much to report on the health front. I still feel great. Only got sick once during the semester, which surprised me a bit.<br />
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I'll be in Chicago from January 6th-12th for my followup. I'm scheduled for a colonoscopy, abdomen MRI, blood work (including immunization titer), fertility testing, and appointments with the GI and Dr. Burt. At the latest, I'll post an update at the end of that week.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-28630483160500810262012-11-13T18:12:00.000-05:002012-11-13T18:12:07.052-05:00Day +445It's been close to 3 months since my last update, and not all that much has happened since. I got a sinus infection a few weeks ago that a 10 day course of antibiotics took care of, but nothing really noteworthy other than that. I had some labs drawn last week that were all normal. I had some minor GI issues for a couple days that passed - it was probably just something I ate. Other than that, no symptoms to speak of!<br />
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I'm working on setting up my followup at Northwestern in January over my winter break. I can guess how most of the testing would come back at this point, but I still don't know if I'll need my immunizations again. I'll try not to go quite this long without updating again, but assume no news is good news.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-84491016878143275592012-08-26T12:03:00.000-04:002012-08-26T12:03:45.720-04:00Day +365Well, today is my immune system's "birthday." I wanted to have made a video by now for prospective patients talking about the decision to do a stem cell transplant now that I'm a year out, but moving, getting ready for school, and my computer breaking has delayed that. Hopefully I can get it done soon.<br />
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I'm still symptom free, though, and I can stop the last antibiotic, Acyclovir. Now I'm just on Aciphex for reflux, and Claritin and Nasonex for seasonal allergies. There really isn't anything else health related worth mentioning for now. I'll go into more detail in the video.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com2tag:blogger.com,1999:blog-7649011114469614199.post-46726342583870252062012-07-11T21:45:00.000-04:002012-07-11T21:45:54.548-04:00Day +320I'm still doing really well - symptom free. I had my wisdom teeth removed last Thursday and that went very well. Not much bleeding afterwards, the pain meds didn't make me really out of it, and they had me do a 5 day course of Clindamycin while my gums healed to prevent an infection.<br />
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Scheduling didn't work out to have a follow up this summer, so I'll be going sometime in January instead. Since I'm doing well, Dr. Burt is fine with putting it off until after the fall semester. I'll go ahead and stop taking Acyclovir at the 1 year mark.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-55234168563606449652012-06-11T19:08:00.001-04:002012-06-11T19:08:30.984-04:00Day +290I'm still doing great. My allergies are in check and I have no symptoms to speak of.<br />
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I had the growth hormone testing a few weeks ago and saw my endocrinologist last week. The results were fine, and he was content with the latest set of labs for now, so I won't need to supplement growth hormone. I'll still follow up with him twice a year for the time being because it's hard to know exactly what the transplant might affect. I'm hoping to get my 1 year follow up scheduled soon for sometime in July.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com1tag:blogger.com,1999:blog-7649011114469614199.post-20345710812938593672012-05-11T16:43:00.000-04:002012-05-11T16:43:25.620-04:00Day +259I'm still doing well. My seasonal allergies got a bit worse, to about where they normally were in the past, so I've started using Nasonex again in addition to Claritin. That seems to be enough for now.<br />
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I found out that the third cord blood patient didn't end up with any donor immune cells, either. Dr. Burt now thinks that there isn't enough blood from cord blood transplants, even using two, for the chimerism to happen. Not sure why it happened with the first patient, though, with HIPAA and all. As far as I know, the focus will be sibling donors now, and cord blood as a fall back if there is no eligible sibling donor. Needless to say, this gives me more questions to ask Dr. Burt when I see him sometime this summer.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-42011658576325107472012-04-18T21:42:00.000-04:002012-04-18T21:42:29.736-04:00Day +236The Erythema Nodosum was pretty much gone in about a week like my doctor guessed it would. It cropped up slightly again a few days later but it was short-lived.<br />
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I did get the chimerism results from the final test a few weeks ago and, as expected, no donor cells are present in my immune system. You can refer to the Day +174 entry for the implications of that.<br />
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I'm still feeling great overall. Started going back to the gym again this week. Hopefully now I can stay healthy for more than a few weeks at a time.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-55699360289679345372012-04-03T11:52:00.000-04:002012-04-03T11:52:09.826-04:00Day +221The Z-pak took care of the sinus infection. However, either due to the medication or sinus infection, I developed <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001884/">Erythema Nodosum</a> over the weekend, so I have annoying red bumps on my arms, legs, and feet that feel like bruises. There really isn't much to do to treat it. Eventually it will just go away on its own. My PCP said he could prescribe Prednisone but I'll gladly avoid that and tolerate things until they get better. I tried Ibuprofen but that didn't help. I'll be referred to a dermatologist if things aren't getting better by Monday.<br />
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I still feel great otherwise. No GI symptoms, my appetite is better than ever, and my energy level is good.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com1tag:blogger.com,1999:blog-7649011114469614199.post-65458238163938914682012-03-25T20:29:00.001-04:002012-03-25T20:29:09.684-04:00Day +212I managed to get sick again with another sinus infection. It may have been partly leftover from last time or I got another one while on vacation. I was just getting back from a trip to Florida for spring break so Dr. Burt went ahead and prescribed a Z-pak. If I'm not feeling better after the 5 days, I'll do another round of it.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-51929216060778767202012-03-17T10:37:00.002-04:002012-03-17T10:37:47.859-04:00Day +204I'm feeling much better now. The Amoxicillin took care of the ear/sinus infection by the end of the course early this week, and I still feel great otherwise. There's not much going on as long as I stay healthy so I probably won't be posting updates too often unless something comes up. No news is good news.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-5931846460350379332012-03-03T17:43:00.000-05:002012-03-03T17:43:13.998-05:00Day +190On Sunday, I started getting a cold. I never felt that bad from it but eventually the congestion was a lot of yellow/green mucus so I saw my PCP on Thursday. Turned out I have an ear infection and likely a sinus infection. She prescribed Amoxicillin which will deal with both. I wasn't around anyone who was sick to my knowledge so I'm not sure where I got it from. Aside from that, I'm still feeling great. I had started going to the gym again the week after getting back from Chicago. I'm waiting until I get better to work out again, though.<br />
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I saw my endocrinologist this week, as well. Most of the hormone testing came back normal. A couple were borderline so he's having me repeat those. I asked about getting a bone density scan done given everything and he agreed it would be a good idea. I'm also scheduled for growth hormone testing in May.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-46747064569916809262012-02-16T23:09:00.001-05:002012-02-16T23:09:39.257-05:00Day +174, 6 Month FollowupOn Tuesday morning, I had an MR Enterography, lab work, and appointment with Dr. Yun, the new GI.<br />
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The MR Enterography gives a better picture than the CT, and it uses less radiation, so that's what Dr. Yun prefers to have done. It's similar to the CT but it takes longer. You still have the barium to drink, and then you follow breathing instructions. They give a shot of Glucagon to relax the abdominal muscles to get a better picture, and also inject a dye towards the end (slightly different than the CT dye - makes you feel cooler instead of warmer). </div>
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The appointment with Dr. Yun was just going over how I've been since the transplant and a bit before, and so we could meet before she did the colonoscopy.</div>
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I saw Dr. Burt on Wednesday. It wasn't anything surprising. Just quickly went over how I'd been feeling and how things would go from here; 6 more months on Acyclovir, and no more blood work is necessary. He had gotten the results of the chimerism test from January and donor cells still hadn't shown up. They drew blood to test for it one last time with the rest of the blood work earlier. At least some cells should have shown up by now if they were going to, so Dr. Burt isn't expecting them to at this point. It's hard to say for sure, but it could be because I didn't get the last dose of Campath. He also mentioned they adjusted the chemo for conditioning to improve the process. I essentially will end up with a much better autologous transplants. My immune system is the same, but having received umbilical cord blood stem cells from a healthy donor was a lot better than using my own from my unhealthy immune system. I can count on having to deal with Crohn's again at some point, unfortunately. There's no way to know when for sure, though. For as little data there is on allogeneic transplants, there's even less for when the donor immune cells don't take. It would seem reasonable to expect at least a few years, given how effective the autologous transplants were.<br />
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I had the colonoscopy today. The prep is so much easier to drink when you're healthy. Dr. Yun and I discussed not pushing anything if the stricture was still an issue so there wasn't a repeat of last time. We were on the same page there. Luckily, it didn't end up being an issue. The stricture has healed, along with most of the inflammation. There were a few scattered pseudopolyps in the sigmoid colon, and everything else was quiescent. It hasn't even been a full 6 months yet, and there's at least another 6 months for the stem cells to keep working.<br />
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Even before the testing this week I would have deemed the transplant extremely successful, despite the donor cells not showing up. I have a life again. I'm back in school, and should have no health issues getting in the way of graduating. I can go out whenever I want to. I don't have to decide if it's one of the rare occasions I'm feeling up to it and worry about how I'm feeling while I'm out of the house. I have the energy and ability to exercise and play sports again. Without the transplant, I couldn't have reasonably expected to be even close to such a good position. There were no more medications to try, I wouldn't agree to surgery, and pursuing to hookworms would have been rather uncertain. I don't have any regret about doing the transplant. I would do it all over again in an instant. It may seem scary, but not doing it was far scarier for me. For other patients who aren't sure about doing it, have an evaluation at the very least to find out if you're a candidate. You can talk to Dr. Burt and ask questions to get the best possible understanding of it. You can say no in the end if you really don't want to, but it really is something I think you would find entirely worthwhile. </div>Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com1tag:blogger.com,1999:blog-7649011114469614199.post-11831469485181214942012-02-03T17:09:00.000-05:002012-02-03T17:09:24.387-05:00Day +161I've been feeling even better this week. No more vomiting, my GI symptoms are gone, and the post nasal drip is better. The chimerism results aren't ready yet. This will probably be the last post until the follow up unless there's something noteworthy to say.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com1tag:blogger.com,1999:blog-7649011114469614199.post-7658245418675518112012-01-28T13:34:00.000-05:002012-01-28T13:34:21.306-05:00Day +155Labs were fine this week. The only culture result that came back so far was C. diff and it was negative. I had some more vomiting on Monday because of mucus building up in my stomach again. The results of the chimerism test should be back relatively soon.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-60546392480565930172012-01-20T20:14:00.000-05:002012-01-20T20:14:03.159-05:00Day +147Dr. Burt changed his mind about blood test frequency, so I'll be getting it drawn every 2 weeks for now. I saw my GI on Tuesday and she ordered more cultures, mainly for C diff once again, and added Sed rate and inflammation markers to my usual blood work. I'll followup with her in 2 weeks. If worse comes to worst, the colonoscopy at Northwestern should provide the answer to what's going on.<br />
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I had some more vomiting mucus yesterday that was similar to the week before, but it didn't persist as long. I managed to take Zofran and that calmed my stomach down. I've been fine since. Mucus seems to keep building up in my stomach because of post-nasal drip left by the cold. I'm still taking Mucinex D to help with it.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com0tag:blogger.com,1999:blog-7649011114469614199.post-32173563621444310322012-01-13T19:26:00.000-05:002012-01-13T19:26:42.301-05:00Day +140Labs were fine again this week. Dr. Burt said I can start getting them drawn monthly now. I finally got my followup scheduled this week. I'll be in Chicago February 13th-17th for a CT scan, colonoscopy, blood work, and appointments with a new transplant GI (Dr. Craig retired) and Dr. Burt.<br />
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I was talking with the 3rd Crohn's patient who had the cord blood transplant earlier. She had a chimerism test done a little more than a month post-transplant and it didn't show any donor cells at that time, either. It may not really mean much but I think it's worth noting for comparison.<br />
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I made a trip to the ER last night/this morning. I was vomiting pretty consistently for a few hours, all mucus after the first few times and my stomach was empty. I felt really dehydrated and fatigued, and couldn't keep sips of water down so I figured it was worth going for IV fluids at the very least. Looking awful and saying "stem cell transplant" really cut down on the wait time. They started fluids, did blood work, an EKG, got a chest X ray, and gave me Zofran. The EKG was normal, my WBC were slightly elevated, and the X ray didn't show anything of concern. It was most likely a lot of built up mucus from the cold I've had, possibly a mild virus. My stomach had settled and I was able to drink and keep down water. They gave me a prescription for Zofran and let me go. I feel fine now today. Eating normally without nausea and without taking Zofran. Hopefully the mucus got cleared out of my stomach and it won't cause more issues.Patrickhttp://www.blogger.com/profile/02057914438098506089noreply@blogger.com2