I just wanted to share with you guys something really cool that happened this week. You know I've been frustrated by the worsening of my problems and the recent increased pain, nausea, and difficulty eating. I've still been plugging away and doing as much as I can! But, I do fear the future as I see this headed exactly where it was several years ago, only a lot faster with more problems as I develop new problems believed now to be caused by a mitochondrial disease (read previous notes). There was no guarantee my problems wouldn't return since we didn't know the cause in the first place.It scares me because this can easily suck the life out of me and keep me from doing anything and can leave me homebound. I'm already having a lot of problems with my driving by not noticing things, getting confused where I am, and getting signs mixed up. A lot of that is meds, some is the fact that I do have some slightly advanced brain atrophy for my age due to the native condition probably, malnutrition, and perhaps medication damage because I have had a lot of neurological medication reactions . I'm also losing my hair a lot which is one reason I wear so many hats or bandanas! My pain is a lot worse all over my body and in my gut, and my osteoporosis has worsened. I fall frequently and have a lot of trouble focusing sometimes. The difference between now and several years ago is I have learned a lot more how to manage it and how to work through it. I've trained my brain how to focus on the task I am doing and get it done. I force myself to avoid other distractions as much as possible. I'm not able to accomplish much with a lot going on around me, but if I can avoid that, I focus quite well on the task at hand, Unfortunately, because I have to focus so hard, I often miss crucial things that are going on around me.
Anyhoo, it's been discouraging because when I have to stop and take a breather from G-PACT, which often happens when I need to step back from other people's problems for a while or I just can't focus on things to get them done, I kind of revert to memories pre-transplant when I gradually had to stop everything. I refuse to go there, but my fear has been that I may end up there and I would begin to feel like my life was meaningless, simply laying in bed incapable of walking even five feet to the bathroom. G-PACT has become so incredibly successful since my return in 2007 and thanks to the growth of volunteers, increased awareness of the condition, and the passion younger people have to help us fight. I can't leave anytime soon. I do delegate a lot more as the volunteers are much more knowledgeable about how we operate and more and more capable of taking on tasks I couldn't previously delegate. We now have over 20 volunteers nationwide, way up from the four we had three years ago and 12-15 one year ago! The quality/education of volunteers is increasing drastically as well and we get along so well.
I had a few days last week where I was particularly discouraged because I was so sick I wasn't able to get much done for G-PACT, but there is SO much to do. My list never ends in projects and ideas! It's a full-time job if I'd let it be because I am so creative and always brainstorming, and there are always management issues to deal with as far as keeping things organized and everyone on track. While I love it, I need a break from it frequently due too to the intense nature of the people I deal with on a daily basis.
God continues to bless G-PACT in unfathomable ways. Anyone who doubts that I am in the right field and doing what I am supposed to be doing is not following our work very closely! It's amazing how God is providing for us and how He continually shows me I am on the right path and that our team is making a huge impact. This past week He showed me that in spite of the fact that I do struggle at time keeping up with all of my responsibilities as a leader in this area, and my struggle with my own worsening health problems, that He's not finished with me yet. We continue to be invited to speak and display at conferences and our message is really getting out there in the medical field and media.
On a particular down day, God sent me the most incredible message in the form of a volunteer. She is from the H-burg area, has GP, TONS of Fundraising experience, loads of ideas, and is so passionate she had herself up and running with e-mail and everything in less than a day once we got her started! She is so anxious to work with my life group on organizing a big local event already, but has ideas on how to make our program work on a national level. She will now coordinate all FR events and take a LOAD off of me! Plus, being in H-burg, there are so many events we can pull off locally (and I hope to have the help of some of my LCBC friends and family in the process!!!) hint hint...It's amazing and I have so many stories like this...such as last minute, massive funding and donations coming through making DDNC do-able this past March and so many other things. Whenever things look down and I am getting discouraged, God pulls a God moment and gets my mind and focus back on track. How on earth can I doubt that He still has a future for me and with me, blessing the work G-PACT is doing in spite of the times I get down and wonder myself where my life is headed. Why do I ever doubt that He will always show me the way, and that my life has been spared for a purpose...and how much 4 extra years has given me to help make an impact on the DTP world and get G-PACT more established so if something does happen to me, I am now confident it will all be taken care of by the fabulous volunteers I have now. Some people don't get clear indications that they are doing what God wants them to do...but in my case, I get them frequently and it never ceases to blow me away! Thank you for letting me share a piece of God's work in my life with you! I love hearing other God stories, and hope you were encouraged by this one!
Love you,
Carissa
Monday, May 10, 2010
Wednesday, May 5, 2010
Prayer on a day I was struggling
To my God you amaze me. You work in ways I'll never see.
I don't understand what I must endure,
but I know your intentions are pure.
I'm struggling right now with my pain, sometimes I can't see what I gain,
by being so ill, is this truly your will?
It's tough to continue, this path I pursue,
of serving all others, not ...just sisters and brothers.
I know that my fight, is won through your might,
but sometimes I feel, like I got a bad deal.
But I know that you chose me, one who refuses to be,
one to let a bad day, stop the price that I pay,
to ensure through my battle, my faith will not rattle,
to the point of failure, as I seek a cure,
for so many in need, and that blessing and deed,
keeps me fighting to serve, in spite of the curve,
that often leaves me crying, as I feel like I'm trying,
but too sick to keep going, and reaping and sowing.
Please help me today, I ask and I pray,
to continue the work, and without a quirk.
When my life you spared, I knew that you cared,
and use me as a tool, to fight this illness so cruel!
Please give me your strength, in very great length,
and help me to work, in spite of the quirk,
of my gut being bad, make my symptoms a tad! -Amen
I don't understand what I must endure,
but I know your intentions are pure.
I'm struggling right now with my pain, sometimes I can't see what I gain,
by being so ill, is this truly your will?
It's tough to continue, this path I pursue,
of serving all others, not ...just sisters and brothers.
I know that my fight, is won through your might,
but sometimes I feel, like I got a bad deal.
But I know that you chose me, one who refuses to be,
one to let a bad day, stop the price that I pay,
to ensure through my battle, my faith will not rattle,
to the point of failure, as I seek a cure,
for so many in need, and that blessing and deed,
keeps me fighting to serve, in spite of the curve,
that often leaves me crying, as I feel like I'm trying,
but too sick to keep going, and reaping and sowing.
Please help me today, I ask and I pray,
to continue the work, and without a quirk.
When my life you spared, I knew that you cared,
and use me as a tool, to fight this illness so cruel!
Please give me your strength, in very great length,
and help me to work, in spite of the quirk,
of my gut being bad, make my symptoms a tad! -Amen
I never said it would be in a nutshell...
I know this has been a LONG time in coming, especially for the people who don't talk to me in person very much or follow me on FB, so it's long...but mostly new even for those who DO hear from me more frequently...
As promised last week, I'm finally writing an update on my health and what my PCP and I discussed on Friday. Most know that I basically decided there is little Pittsburgh can do for me at this point, so I decided to take matters into my own hands and seek out my local doctors at Hershey Med for new insight. I sometimes feel like Pittsburgh gets so caught up in making sure I'm not in rejection or bleeding from somewhere that they tend to not look at the overall picture, but that is so crucial too! I still keep in touch with them, but am not putting myself 100% in their hands unless I have a specific transplant related issue right now.
My feelings about my overall management were validated as I felt like my PCP had some much better insight into what is happening and gave me some pretty good ideas. Nothing is a bombshell, but she validated a lot of the things I have known but Pittsburgh hasn't told me!
The Nutrition Factor:
Every Monday I get my labs done and every week I hear from my coordinator that my labs look good. I know that although my numbers may look good on paper, there is no way I am not malnourished. I am unable to keep even 1,000 calories in each day. When my PCP pulled out my labs, she noted that while my potassium, magnesium, calcium, zinc, and other minerals appear to be normal (although my potassium is borderline as usual), my overall protein lab indicating general malnutrition is quite low! She shook her head and said "Of course your mag, potassium, phos, zinc, etc are normal. You're on so many pills!" I realized she's right. I am on very high doses of supplements. It's a false indication of how much I truly am getting down when I'm getting it all in powdered or capsuled form! I told her I am so frustrated because I KNOW I am not getting enough nutrition- I am weak, I ache all the time, I am nauseous or in pain all the time, I fall a lot, I am tired all the time, and I have no energy, but as long as I look ok on paper, that's all Pittsburgh relies on. But, I was a bit flustered that my labs do indicate poor general nutrition and I wasn't told just because my specific numbers look ok.
It helped to know that because she gave me some new diet ideas. While complicated and me having to remind her from time to time of the fact that I have to avoid this or that because of one of the conditions, we did get down to a couple of things to try again. She wants me to add protein powder to whatever I do eat if I can handle the taste! She gave me the name of the exact one she uses and how much to use. She said to mix it in with my scrambled eggs or mashed potatoes. She also gave me a recipe for a fat free, sugar free protein shake...not sure about that one, but I'll try it. She said her 16 yo son drinks them every morning and he used to always skip breakfast. She promised to buy the stuff off of me if I can't tolerate it, but it's an option.
She also wants me to make baby food out of things now. Even though I chew everything up well if I try to expand beyond scrambled eggs and potatoes, she did say pureeing the food takes it down to an even more digested type state and I may do better that way. Pureeing foods is common in GP. I'm not sure how it will work with dumping as solid foods are better for that...but should be easier to digest for the gastroparesis without taking me to full liquids which is bad for the dumping syndrome!
I described to her exactly what happens to my food as it proceeds down my digestive tract...where it starts, where it stops, where it gets hung up, what the symptoms are in each location, and a number of other things. She listened and it made sense. She could see my frustration with all of it and she expressed it too! But, she looked at me as a whole and recognized how ill I have been and had ideas on how to improve my overall nutrition and health to an extent. These are suggestions not even made by the dietitian or doctors at Pittsburgh...not because they lack the knowledge or info, I just think they are overwhelmed and look at things from a transplant only standpoint most of the time. Plus, as she said, I am so well "known" to them and not quite as well known to her so she may see things they don't look at anymore.
Explanation? For EVERYTHING? Under ONE name?
I also discussed something with her that has been mentioned to me on a number of occasions, but I have not paid a whole lot of attention to because I realize there is not much that can be done and I am tired of being run through a bunch of tests anyway. I was also doing better, but since my conditions have worsened or returned, I see it as more important to pursue once again because there are a few options that may slow progression down if I know more. As most people know, nobody knows what initially caused all of my problems...not just the GP and CIP, but the long QT, abnormal potassium drops on IV potassium, low blood pressure reactions, peripheral neuropathy, Factor V Leiden (blood clotting disorder), extreme sensitivity to meds, sudden body paralysis and muscle spasms, and a whole host of other symptoms not yet linked under one specific diagnosis.
Back in 2001 or 2002, I went to the University of Rochester in NY seeking a diagnosis of Andersen's syndrome. Andersen's (now known as Andersen's-Tawil syndrome) is a genetic condition categorized under a potassium channel related periodic paralysis (HKPP). Periodic Paralysis' are conditions in which the body, for no apparent reason and not necessarily diet related, either drops or raises potassium levels suddenly and produces symptoms such as paralysis of body parts and other symptoms while the levels are either low or high, depending on type. I don't want to get into details here, but basically, I went to pursue Andersen's based on the fact that my potassium drops drastically (4.3-2.7 once in 2.5 hours on IV potassium and after a full day of receiving it!) so it is not only diet related. Andersen's specifically has the long QT element to it. Long QT is the heart condition I have which has sent me into cardiac arrest on a few occasions. People with Andersen's are especially sensitive to low potassium and at high risk for cardiac arrest when potassium is low or even borderline normal. It can also cause gastroparesis, pseudo-obstruction, and many of the other things I suffer from. Some I had back then, some I have developed since. At the time, Andersen's was just starting to be researched and there wasn't (and still isn't) a definitive way to diagnose it in most people. While a few genes had been identified, there was (and still is) a long ways to go. I fit many aspects of it, but was not clear-cut for diagnosis. They were unable to officially say that was what was going on, but they also never ruled it out or took me off the list. They still have my genetic test results to use for future studies.
I mention Andersen's as a way to lead up to something even bigger! My GI doctor at HMC at the time, who is now in NC but we still keep in touch, has thought for years that my underlying problem is somehow related to a problem with my potassium channels. He said, as recently as a year ago, that it's the only thing he knows of that would cause my body to dump IV potassium like that without abnormal kidney function. Even since the transplant I have lost IV potassium in large amounts so it wasn't just an absorption issue pre-transplant (and besides, this was IV potassium which had nothing to do with gut absorption abnormalities).
I was driving home last week from some event and I was having a lot of body pain. For years we have considered the possibility that I have an auto-immune disorder, but my docs have always said that even if I do they would treat it the same way I am being treated now- with steroids. However, I have noticed since starting on steroids that all of those problems have actually worsened. So I came home and researched what conditions out there fit my symptoms of auto-immune conditions that could be worsened (or at least not improved) on steroids. Voila! An under-active immune system of course. This could explain a lot. While I am on immuno-suppression therapy, I had signs of a weak immune system long before my transplant. When I would get septic, my white blood cell count always dropped to below normal rather than get high. Once I had a bad virus in college which should have made my counts skyrocket, yet they were only elevated one point (11, normal is up to 10). Only once that I know of have I ever had an infection where my white blood cell count went up and not down. I've also always had a significantly low body temperature which would be the opposite of an auto-immune condition. I actually feel feverish when my temperature is normal.
After further research, I discovered that a person with a weak immune system very possibly fits into a category of conditions known as "mitochondrial diseases." Also poorly understood and only recently starting to be researched, these conditions were brought to my attention about two years ago by a number of friends who have GP and CIP and other issues I have. They suggested MD as a possible cause for what is happening with me too. So, I researched even further...
Mitochondrial diseases are genetic conditions in which the mitochondria in the cells are affected which results in a person developing problems with multiple organ systems. In these conditions, the potassium channels can also be altered resulting in other problems such as HKPP, which includes Andersen's. So, I've suddenly linked up Andersen's under an overall mitochondrial disease (some of which haven't even been identified yet), which links up my GP, CIP, Long QT, potassium drops, body pain, paralysis on steroids, and muscle spasms, low body temperature, and low white blood cells during an infection.
Another problem I have led my doctor to pursue an epilepsy diagnosis in 2003, although I mentioned it to her as only happening in conjunction with drops in blood pressure. I had noticed for years that when my blood pressure would drop upon standing, not only would everything go black and my heartrate would increase, but my body would jerk uncontrollably all over. I have asked people for years if this is normal, and no one has ever been able to explain it until about a year ago. I mentioned it once and a number of my friends with a mitochondrial disease said it sounded just like POTS (Postural orthostatic tachycardic syndrome). POTS is a specific dysautonomia which, although not required, is commonly associated with mitochondrial diseases. At the time it sounded like a possibility, but I wasn't ready to pursue it as I felt like there were so many other factors going on and I wasn't on board with the possibility of having a mitochondrial disease anyway. I just felt like I would be pursuing something in left field and the doctors who even have the capabilities of diagnosing any of these things are few and far between.
Anyway, after taking all of this into consideration and putting the pieces together, it became quite clear to me that a mitochondrial disease is not at all in left field as an explanation for all of these things, plus a few other problems I have developed over time as well. So, I mentioned it to my PCP on Friday. She said absolutely to pursue it, but since they are such new conditions and would take a big trip to pursue, that I should begin by contacting the physicians via e-mail and describing my medical history and asking them if they think I'm on the right track, then considering traveling to Boston or Cleveland to see if I might in fact have an MD linking everything under one common cause. Although a genetic condition, it is not at all uncommon for no other family members to have it or show any symptoms. That was another thing that kept me from seriously considering an MD as a cause until I found out I very possibly could be the only one to ever show any signs of anything.
When recommending that I contact these doctors via e-mail, I mentioned that doctors often don't like e-mail communication because there is a lot of liability involved in that. She agreed, but also said that since MD's are so uncommon at this point, doctors who research them will probably be anxious to talk to someone like me because they want to learn as much as they can. So, she feels like they will be open to helping me figure out if I'm at least headed in the right direction before making a big trip for testing (usually a muscle biopsy is performed, which can be normal) and I may have to fight with Medicare to even get it covered if I decide to go. I'm not in a rush, but it would help me in a lot of ways to have a better understanding into what keeps happening with my body and why I have such unusual problems.
How is it now?
We discussed this. I am having a lot of problems managing the combination of dumping syndrome and gastroparesis. I mentioned a few things I had been trying on my own and she gave me feedback on some other management options as well. As a result of the appointment I have also come up with some thoughts on my own of new things to try. I know how to deal with GP and CIP. I haven't figured out how to manage two opposite conditions. However, I am afraid that the GP has worsened and the CIP is returning. I'm having more problems related to an entirely slow gut, with some dumping syndrome aspects.
For the past few weeks, in spite of the fact that I am two to three weeks beyond the last time I was supposed to have my injection for DS, my system is still running slowly. While I still have heart palpitations, sweating, dizziness, and fall into a deep sleep after I eat (the more cardiac/pancreatic related symptoms), the GI related part of dumping syndrome is not as bad. Instead, now my food isn't moving through my system at all. Recently it has been taking a few days to leave my stomach and then getting stuck in my small bowel too as I have experienced a rise in obstruction symptoms and related pain, and less of the DS GI symptoms. I still have the nasty feeling of sudden fatigue and like I've run a marathon after eating, but my food isn't going anywhere so it's lingering not just in my stomach, but through my whole small bowel too. I have the "marathon" DS symptoms when the food IS leaving via the pyloric sphincter, but once it's beyond that, it stops until the next portion of food reaches the pyloric sphincter, dumps, then stops in my small bowel. Since it takes so long for food to reach my pyloric sphincter and leave my stomach, and the food seems to only be reaching my pyloric sphincter in small portions, I am constantly both dumping and backed up. It's complicated. I don't know which condition is going to act up the most on any given day, but lately I've been eating much more on the CP and CIP diet than the DS diet because things are definitely sluggish in spite of not having had my sandostatin in at least six weeks. I often can't sleep well because I am up all night sick or in a lot of pain. I do fear that I'm headed towards TPN again. I'm fighting it, especially based on all the problems I had last fall/winter and being even more immuno-suppressed post-tx, but something has to start working because I keep getting weaker, I fall more frequently, and I have just gradually felt worse and worse and developed more problems over the course of the past year.
How am I doing otherwise?
Great otherwise! In spite of feeling sick all the time, I am happy and still moving forward with life. G-PACT is going well and there are always new things going on there! There's never a lack of things for me to do, and the G-PACT team is really amazing. I love meeting new people all the time and hearing stories. It's exciting to see so much progress and success in the organization! I have so many ideas for next steps and future projects running around in my head! I can't believe that it's been almost 9 years since we started! Sometimes I sit back and think "what the heck have I gotten myself into?" I know one thing...it's good I was so naive about what is involved in running a non-profit when I got the "bright" idea to do it in 2001 or it wouldn't exist! But it's been the greatest thing for me to have a focus in life and I really enjoy doing what I do...MOST of the time! :) Nah...I wouldn't change A THING!
I still love volunteering in the office and in the Wheelhouse at LCBC and being actively involved with my life group. Just last week a few of us went to a local organization to pack beans and rice for the people of Haiti. I'm very much looking forward to the day I pull the top off the Jeep for the summer, and then Steelers football after that!
So, overall I'm managing quite well. I do get frustrated and down on occasion, but who wouldn't? There's so much to manage and it's a constant battle without a break. I am just thankful that in spite of it all, I am here and well enough to still function in ways that can make a difference.
As promised last week, I'm finally writing an update on my health and what my PCP and I discussed on Friday. Most know that I basically decided there is little Pittsburgh can do for me at this point, so I decided to take matters into my own hands and seek out my local doctors at Hershey Med for new insight. I sometimes feel like Pittsburgh gets so caught up in making sure I'm not in rejection or bleeding from somewhere that they tend to not look at the overall picture, but that is so crucial too! I still keep in touch with them, but am not putting myself 100% in their hands unless I have a specific transplant related issue right now.
My feelings about my overall management were validated as I felt like my PCP had some much better insight into what is happening and gave me some pretty good ideas. Nothing is a bombshell, but she validated a lot of the things I have known but Pittsburgh hasn't told me!
The Nutrition Factor:
Every Monday I get my labs done and every week I hear from my coordinator that my labs look good. I know that although my numbers may look good on paper, there is no way I am not malnourished. I am unable to keep even 1,000 calories in each day. When my PCP pulled out my labs, she noted that while my potassium, magnesium, calcium, zinc, and other minerals appear to be normal (although my potassium is borderline as usual), my overall protein lab indicating general malnutrition is quite low! She shook her head and said "Of course your mag, potassium, phos, zinc, etc are normal. You're on so many pills!" I realized she's right. I am on very high doses of supplements. It's a false indication of how much I truly am getting down when I'm getting it all in powdered or capsuled form! I told her I am so frustrated because I KNOW I am not getting enough nutrition- I am weak, I ache all the time, I am nauseous or in pain all the time, I fall a lot, I am tired all the time, and I have no energy, but as long as I look ok on paper, that's all Pittsburgh relies on. But, I was a bit flustered that my labs do indicate poor general nutrition and I wasn't told just because my specific numbers look ok.
It helped to know that because she gave me some new diet ideas. While complicated and me having to remind her from time to time of the fact that I have to avoid this or that because of one of the conditions, we did get down to a couple of things to try again. She wants me to add protein powder to whatever I do eat if I can handle the taste! She gave me the name of the exact one she uses and how much to use. She said to mix it in with my scrambled eggs or mashed potatoes. She also gave me a recipe for a fat free, sugar free protein shake...not sure about that one, but I'll try it. She said her 16 yo son drinks them every morning and he used to always skip breakfast. She promised to buy the stuff off of me if I can't tolerate it, but it's an option.
She also wants me to make baby food out of things now. Even though I chew everything up well if I try to expand beyond scrambled eggs and potatoes, she did say pureeing the food takes it down to an even more digested type state and I may do better that way. Pureeing foods is common in GP. I'm not sure how it will work with dumping as solid foods are better for that...but should be easier to digest for the gastroparesis without taking me to full liquids which is bad for the dumping syndrome!
I described to her exactly what happens to my food as it proceeds down my digestive tract...where it starts, where it stops, where it gets hung up, what the symptoms are in each location, and a number of other things. She listened and it made sense. She could see my frustration with all of it and she expressed it too! But, she looked at me as a whole and recognized how ill I have been and had ideas on how to improve my overall nutrition and health to an extent. These are suggestions not even made by the dietitian or doctors at Pittsburgh...not because they lack the knowledge or info, I just think they are overwhelmed and look at things from a transplant only standpoint most of the time. Plus, as she said, I am so well "known" to them and not quite as well known to her so she may see things they don't look at anymore.
Explanation? For EVERYTHING? Under ONE name?
I also discussed something with her that has been mentioned to me on a number of occasions, but I have not paid a whole lot of attention to because I realize there is not much that can be done and I am tired of being run through a bunch of tests anyway. I was also doing better, but since my conditions have worsened or returned, I see it as more important to pursue once again because there are a few options that may slow progression down if I know more. As most people know, nobody knows what initially caused all of my problems...not just the GP and CIP, but the long QT, abnormal potassium drops on IV potassium, low blood pressure reactions, peripheral neuropathy, Factor V Leiden (blood clotting disorder), extreme sensitivity to meds, sudden body paralysis and muscle spasms, and a whole host of other symptoms not yet linked under one specific diagnosis.
Back in 2001 or 2002, I went to the University of Rochester in NY seeking a diagnosis of Andersen's syndrome. Andersen's (now known as Andersen's-Tawil syndrome) is a genetic condition categorized under a potassium channel related periodic paralysis (HKPP). Periodic Paralysis' are conditions in which the body, for no apparent reason and not necessarily diet related, either drops or raises potassium levels suddenly and produces symptoms such as paralysis of body parts and other symptoms while the levels are either low or high, depending on type. I don't want to get into details here, but basically, I went to pursue Andersen's based on the fact that my potassium drops drastically (4.3-2.7 once in 2.5 hours on IV potassium and after a full day of receiving it!) so it is not only diet related. Andersen's specifically has the long QT element to it. Long QT is the heart condition I have which has sent me into cardiac arrest on a few occasions. People with Andersen's are especially sensitive to low potassium and at high risk for cardiac arrest when potassium is low or even borderline normal. It can also cause gastroparesis, pseudo-obstruction, and many of the other things I suffer from. Some I had back then, some I have developed since. At the time, Andersen's was just starting to be researched and there wasn't (and still isn't) a definitive way to diagnose it in most people. While a few genes had been identified, there was (and still is) a long ways to go. I fit many aspects of it, but was not clear-cut for diagnosis. They were unable to officially say that was what was going on, but they also never ruled it out or took me off the list. They still have my genetic test results to use for future studies.
I mention Andersen's as a way to lead up to something even bigger! My GI doctor at HMC at the time, who is now in NC but we still keep in touch, has thought for years that my underlying problem is somehow related to a problem with my potassium channels. He said, as recently as a year ago, that it's the only thing he knows of that would cause my body to dump IV potassium like that without abnormal kidney function. Even since the transplant I have lost IV potassium in large amounts so it wasn't just an absorption issue pre-transplant (and besides, this was IV potassium which had nothing to do with gut absorption abnormalities).
I was driving home last week from some event and I was having a lot of body pain. For years we have considered the possibility that I have an auto-immune disorder, but my docs have always said that even if I do they would treat it the same way I am being treated now- with steroids. However, I have noticed since starting on steroids that all of those problems have actually worsened. So I came home and researched what conditions out there fit my symptoms of auto-immune conditions that could be worsened (or at least not improved) on steroids. Voila! An under-active immune system of course. This could explain a lot. While I am on immuno-suppression therapy, I had signs of a weak immune system long before my transplant. When I would get septic, my white blood cell count always dropped to below normal rather than get high. Once I had a bad virus in college which should have made my counts skyrocket, yet they were only elevated one point (11, normal is up to 10). Only once that I know of have I ever had an infection where my white blood cell count went up and not down. I've also always had a significantly low body temperature which would be the opposite of an auto-immune condition. I actually feel feverish when my temperature is normal.
After further research, I discovered that a person with a weak immune system very possibly fits into a category of conditions known as "mitochondrial diseases." Also poorly understood and only recently starting to be researched, these conditions were brought to my attention about two years ago by a number of friends who have GP and CIP and other issues I have. They suggested MD as a possible cause for what is happening with me too. So, I researched even further...
Mitochondrial diseases are genetic conditions in which the mitochondria in the cells are affected which results in a person developing problems with multiple organ systems. In these conditions, the potassium channels can also be altered resulting in other problems such as HKPP, which includes Andersen's. So, I've suddenly linked up Andersen's under an overall mitochondrial disease (some of which haven't even been identified yet), which links up my GP, CIP, Long QT, potassium drops, body pain, paralysis on steroids, and muscle spasms, low body temperature, and low white blood cells during an infection.
Another problem I have led my doctor to pursue an epilepsy diagnosis in 2003, although I mentioned it to her as only happening in conjunction with drops in blood pressure. I had noticed for years that when my blood pressure would drop upon standing, not only would everything go black and my heartrate would increase, but my body would jerk uncontrollably all over. I have asked people for years if this is normal, and no one has ever been able to explain it until about a year ago. I mentioned it once and a number of my friends with a mitochondrial disease said it sounded just like POTS (Postural orthostatic tachycardic syndrome). POTS is a specific dysautonomia which, although not required, is commonly associated with mitochondrial diseases. At the time it sounded like a possibility, but I wasn't ready to pursue it as I felt like there were so many other factors going on and I wasn't on board with the possibility of having a mitochondrial disease anyway. I just felt like I would be pursuing something in left field and the doctors who even have the capabilities of diagnosing any of these things are few and far between.
Anyway, after taking all of this into consideration and putting the pieces together, it became quite clear to me that a mitochondrial disease is not at all in left field as an explanation for all of these things, plus a few other problems I have developed over time as well. So, I mentioned it to my PCP on Friday. She said absolutely to pursue it, but since they are such new conditions and would take a big trip to pursue, that I should begin by contacting the physicians via e-mail and describing my medical history and asking them if they think I'm on the right track, then considering traveling to Boston or Cleveland to see if I might in fact have an MD linking everything under one common cause. Although a genetic condition, it is not at all uncommon for no other family members to have it or show any symptoms. That was another thing that kept me from seriously considering an MD as a cause until I found out I very possibly could be the only one to ever show any signs of anything.
When recommending that I contact these doctors via e-mail, I mentioned that doctors often don't like e-mail communication because there is a lot of liability involved in that. She agreed, but also said that since MD's are so uncommon at this point, doctors who research them will probably be anxious to talk to someone like me because they want to learn as much as they can. So, she feels like they will be open to helping me figure out if I'm at least headed in the right direction before making a big trip for testing (usually a muscle biopsy is performed, which can be normal) and I may have to fight with Medicare to even get it covered if I decide to go. I'm not in a rush, but it would help me in a lot of ways to have a better understanding into what keeps happening with my body and why I have such unusual problems.
How is it now?
We discussed this. I am having a lot of problems managing the combination of dumping syndrome and gastroparesis. I mentioned a few things I had been trying on my own and she gave me feedback on some other management options as well. As a result of the appointment I have also come up with some thoughts on my own of new things to try. I know how to deal with GP and CIP. I haven't figured out how to manage two opposite conditions. However, I am afraid that the GP has worsened and the CIP is returning. I'm having more problems related to an entirely slow gut, with some dumping syndrome aspects.
For the past few weeks, in spite of the fact that I am two to three weeks beyond the last time I was supposed to have my injection for DS, my system is still running slowly. While I still have heart palpitations, sweating, dizziness, and fall into a deep sleep after I eat (the more cardiac/pancreatic related symptoms), the GI related part of dumping syndrome is not as bad. Instead, now my food isn't moving through my system at all. Recently it has been taking a few days to leave my stomach and then getting stuck in my small bowel too as I have experienced a rise in obstruction symptoms and related pain, and less of the DS GI symptoms. I still have the nasty feeling of sudden fatigue and like I've run a marathon after eating, but my food isn't going anywhere so it's lingering not just in my stomach, but through my whole small bowel too. I have the "marathon" DS symptoms when the food IS leaving via the pyloric sphincter, but once it's beyond that, it stops until the next portion of food reaches the pyloric sphincter, dumps, then stops in my small bowel. Since it takes so long for food to reach my pyloric sphincter and leave my stomach, and the food seems to only be reaching my pyloric sphincter in small portions, I am constantly both dumping and backed up. It's complicated. I don't know which condition is going to act up the most on any given day, but lately I've been eating much more on the CP and CIP diet than the DS diet because things are definitely sluggish in spite of not having had my sandostatin in at least six weeks. I often can't sleep well because I am up all night sick or in a lot of pain. I do fear that I'm headed towards TPN again. I'm fighting it, especially based on all the problems I had last fall/winter and being even more immuno-suppressed post-tx, but something has to start working because I keep getting weaker, I fall more frequently, and I have just gradually felt worse and worse and developed more problems over the course of the past year.
How am I doing otherwise?
Great otherwise! In spite of feeling sick all the time, I am happy and still moving forward with life. G-PACT is going well and there are always new things going on there! There's never a lack of things for me to do, and the G-PACT team is really amazing. I love meeting new people all the time and hearing stories. It's exciting to see so much progress and success in the organization! I have so many ideas for next steps and future projects running around in my head! I can't believe that it's been almost 9 years since we started! Sometimes I sit back and think "what the heck have I gotten myself into?" I know one thing...it's good I was so naive about what is involved in running a non-profit when I got the "bright" idea to do it in 2001 or it wouldn't exist! But it's been the greatest thing for me to have a focus in life and I really enjoy doing what I do...MOST of the time! :) Nah...I wouldn't change A THING!
I still love volunteering in the office and in the Wheelhouse at LCBC and being actively involved with my life group. Just last week a few of us went to a local organization to pack beans and rice for the people of Haiti. I'm very much looking forward to the day I pull the top off the Jeep for the summer, and then Steelers football after that!
So, overall I'm managing quite well. I do get frustrated and down on occasion, but who wouldn't? There's so much to manage and it's a constant battle without a break. I am just thankful that in spite of it all, I am here and well enough to still function in ways that can make a difference.
Tuesday, February 23, 2010
Senator McCain: Please Support Gastric Motility Research
I have been a long time supporter of Senator McCain and voted for him in the last election. I respect his service as POW and not leaving his men behind when given the opportunity to leave, knowing that the decision would only result in more torture for him. His lifelong service to our country is a clear indication that he truly does care for America.
However, he has recently made some comments in regards to funding gastric motility research which are disturbing and detrimental to our cause. Please read and sign this petition G-PACT is sponsoring. We are going to lobby at the Digestive Diseases National Coalition on March 7-8 and have the opportunity to meet with Senator McCain to educate him on the need for research funds into gastroparesis and chronic intestinal pseudo-obstruction.
However, he has recently made some comments in regards to funding gastric motility research which are disturbing and detrimental to our cause. Please read and sign this petition G-PACT is sponsoring. We are going to lobby at the Digestive Diseases National Coalition on March 7-8 and have the opportunity to meet with Senator McCain to educate him on the need for research funds into gastroparesis and chronic intestinal pseudo-obstruction.
Just Imagine...
Can you imagine never being able to eat again? Hooking up to IV nutrition or tube feedings every day in order to live? Carrying your nutrition on your back all day or being attached to a pole all night? Or, simply having to "survive" on chicken broth, Ensure, and small bites of food all day long? And in spite of that, still dealing with malnutrition, dehydration, weight loss, abdominal pain, nausea, and vomiting on a daily basis?
Frequent trips to the ER and hospital become routine...just a part of life. Social activities are non-existent because most of them involve food. If you do go out, you end up ordering water, maybe a soda, and pulling that pack of crackers out of your purse to nibble at. You feel fortunate that you are even capable of keeping that down, realizing that many people in similar situations can't. Making plans is a challenge. You may feel well and up for an outing, but then while out the symptoms attack and a planned fun-filled evening becomes a drag very quickly. That's what life with gastroparesis and intestinal pseudo-obstruction is like.
These conditions are so poorly understood. They are so hidden that people often don't believe they are real or are not as serious as they actually are. Although difficult to understand, patients suffering from GP and CIP may look completely healthy. They may drive, work, shop, go to church, take care of a family, and look great on the outside. Their color may be nice, they may look strong and energetic, and they may appear to be feeling well. Yet, the turmoil churning within them is by no means normal.
Remember the last time you had the flu. After 24 hours of nausea, vomiting, perhaps diarrhea, and aches and pains, you couldn't wait to get back to work and your normal activities. As you tried to return to your routine activities, however, you did notice you felt weaker than usual. It was more challenging to get things done because you had a day of surviving on toast, crackers, and soup...not exactly a champions dinner!
Now, take that day and multiply it by years. Add medication, medical procedures, hospitalizations, chronic malnutrition complications, invasive treatments, surgeries, and additional illnesses that develop over time. You are getting closer to understanding what life with GP and CIP is like, but you are still not there.
On top of the physical issues, because the conditions are so poorly understood, people with GP and CIP often have to live with the challenges of stereotyping by society. It is often believed that patients are exaggerating their conditions because they don't "look sick." Others believe those who suffer really just have an eating disorder and use a "mild" condition as an excuse for not eating well. People simply don't understand that a couple sips of soup can send one's gut into a frenzy and result in hours of nausea, abdominal pain, and vomiting. Sometimes this lasts even for days. One wrong bite of food can result in a bowel obstruction and trip to the hospital for an NG tube for suction or surgery to remove the blockage. There are no cold and flu treatments to help symptoms or treat the conditions at all. At best, patients can try some anti-nausea medications with nasty side effects, or drugs that are so expensive insurance companies only provide 12 a month...so they have to decide which 12 times a month they are sick enough to take it. On top of that, any drugs that may help are pulled from the market and no longer available. Once that is removed, even if restarted through compassionate clearance programs, they never quite work as well again. But the odds of getting on that program are slim to none. They feel like everything has been taken away from them...not only health, a normal life, food, and even friends and family who jump ship, but the only treatment that keeps them even somewhat functioning.
Think back again to the day you had the flu. You probably did not want to lift your head off the bed or couch. You felt too weak to make it to the bathroom. Every time you sat up, you felt your head spin and the nausea increased even more. Finally, it was a battle of determination to force yourself up and walk to distance to the bathroom. While you were up, you tried to grab as many items as you needed so you didn't have to get back up again for a long time. By the time you get back to bed, you were so weak and wiped out that all you wanted to do is sleep or watch TV. But you couldn't get your mind off the nausea. It was so overwhelming that you curled up into a ball on your side and just waited for it to pass. You took flu medication in hopes of sleeping it off and had hope that tomorrow would be better.
People with GP and CIP don't have that hope that tomorrow will be better right now. Each day varies and some are better than others, but inevitably the bad days will always come back. There are limited options to treat symptoms, but they don't work well. Patients are basically told to "live with it." In some cases, it can't be lived with. While most people with GP get by on what is available, because there are no other options, quality of life is certainly very poor. Many survive on less than 1,000 calories a day, severe weight loss, disability, tube feedings, IV nutrition, medication with nasty side effects, and a life full of invasive medical treatments and hospitalizations. GP and CIP are not just simple illnesses which can be cured through diet changes, medication, or surgery. They do not mildly impact life. They have a profound influence on every daily activities, regardless of severity. There is no escape. Is this the kind of life a person wants to "just live with?"
There are also many situations in which living with GP and CIP are no longer an option. In severe cases, chronic malnutrition takes over and people are unable to survive the trauma on the body. The body often quits absorbing, organs shut down, and the liver may fail for those who have been on long term IV nutrition. Veins become inaccessible and there is no way for them to receive nutrition. Some who are fortunate enough to be aware of the option and be eligible may pursue a five organ transplant as a last resort to stay alive. While this can be miraculous and life saving, it doesn't come without its own complications for life. Individuals who reach this level of severity have become desperate. There are no options. They either risk their lives by going through a transplant, recognizing that even if they make it to the transplant and out of the OR, they face a lifetime of complications and possible organ rejection. But the only other option is starvation. There's not really a choice when you get to that point.
Living with GP and CIP is hard to describe. The best patients can do to help others understand is to tell people to consider what it would feel like to have the flu, every single day, and the impact that would have on your life. But then you have to throw in additional health problems and the stereotypes, comments, and claims by others that what they deal with is not real and not worthy of attention. Because they don't "look" sick, family and friends who don't believe put a wedge between them or completely leave, believing that the person is trying to use a mild condition to "benefit" from resources such as disability, have an excuse to get out of unwanted duties, a way to receive special parking "privileges," and other accommodations at work and school. They are often looked at oddly when forced to admit they are on disability because of a "stomach" problem, can't lift a box of sodas into their cars because they are too weak, get glared at because they park in an HP spot but get out of the car walking, and dealing with other colleagues and students who are jealous of the accommodations received to make life easier to live and adaptation into society easier.
GP and CIP need more attention. People don't understand what it is really like to fight these conditions and what daily life is like for those who suffer. They are downplayed as simply being conditions that can be controlled if "you would just eat correctly and avoid certain foods." While in some instances this is true, there is a very wide spectrum to the level that people die from these conditions as well. If not to the point of dying physically, many are unable to truly "live" at all as GP and CIP zaps the life out of them. Note how long it took you to recover from just a 24 hour flu. Then realize that in GP and CIP there is no recovery. There is no in between. It is a daily battle, with ups and downs, unknowns, and a life full of complexity and misunderstanding. Try to step into their shoes for a short time. Next time you have your head in the toilet, imagine life like that every day. Be thankful for what you have. Be thankful you will recover and life will return to normal. And remember those whose lives will never return to normal. Give back. Help them fight. Support them. Try to understand. Let them vent without judging them. Encourage them. They often lack self-confidence because they have either been judged so much or feel as if they are incapable of accomplishing important things because of being ill. Also, realize that you are dealing with some of the strongest, toughest, people you will ever meet. Thank you for taking the time to read this and step into the lives of those suffering from GP and CIP for a short time.
Frequent trips to the ER and hospital become routine...just a part of life. Social activities are non-existent because most of them involve food. If you do go out, you end up ordering water, maybe a soda, and pulling that pack of crackers out of your purse to nibble at. You feel fortunate that you are even capable of keeping that down, realizing that many people in similar situations can't. Making plans is a challenge. You may feel well and up for an outing, but then while out the symptoms attack and a planned fun-filled evening becomes a drag very quickly. That's what life with gastroparesis and intestinal pseudo-obstruction is like.
These conditions are so poorly understood. They are so hidden that people often don't believe they are real or are not as serious as they actually are. Although difficult to understand, patients suffering from GP and CIP may look completely healthy. They may drive, work, shop, go to church, take care of a family, and look great on the outside. Their color may be nice, they may look strong and energetic, and they may appear to be feeling well. Yet, the turmoil churning within them is by no means normal.
Remember the last time you had the flu. After 24 hours of nausea, vomiting, perhaps diarrhea, and aches and pains, you couldn't wait to get back to work and your normal activities. As you tried to return to your routine activities, however, you did notice you felt weaker than usual. It was more challenging to get things done because you had a day of surviving on toast, crackers, and soup...not exactly a champions dinner!
Now, take that day and multiply it by years. Add medication, medical procedures, hospitalizations, chronic malnutrition complications, invasive treatments, surgeries, and additional illnesses that develop over time. You are getting closer to understanding what life with GP and CIP is like, but you are still not there.
On top of the physical issues, because the conditions are so poorly understood, people with GP and CIP often have to live with the challenges of stereotyping by society. It is often believed that patients are exaggerating their conditions because they don't "look sick." Others believe those who suffer really just have an eating disorder and use a "mild" condition as an excuse for not eating well. People simply don't understand that a couple sips of soup can send one's gut into a frenzy and result in hours of nausea, abdominal pain, and vomiting. Sometimes this lasts even for days. One wrong bite of food can result in a bowel obstruction and trip to the hospital for an NG tube for suction or surgery to remove the blockage. There are no cold and flu treatments to help symptoms or treat the conditions at all. At best, patients can try some anti-nausea medications with nasty side effects, or drugs that are so expensive insurance companies only provide 12 a month...so they have to decide which 12 times a month they are sick enough to take it. On top of that, any drugs that may help are pulled from the market and no longer available. Once that is removed, even if restarted through compassionate clearance programs, they never quite work as well again. But the odds of getting on that program are slim to none. They feel like everything has been taken away from them...not only health, a normal life, food, and even friends and family who jump ship, but the only treatment that keeps them even somewhat functioning.
Think back again to the day you had the flu. You probably did not want to lift your head off the bed or couch. You felt too weak to make it to the bathroom. Every time you sat up, you felt your head spin and the nausea increased even more. Finally, it was a battle of determination to force yourself up and walk to distance to the bathroom. While you were up, you tried to grab as many items as you needed so you didn't have to get back up again for a long time. By the time you get back to bed, you were so weak and wiped out that all you wanted to do is sleep or watch TV. But you couldn't get your mind off the nausea. It was so overwhelming that you curled up into a ball on your side and just waited for it to pass. You took flu medication in hopes of sleeping it off and had hope that tomorrow would be better.
People with GP and CIP don't have that hope that tomorrow will be better right now. Each day varies and some are better than others, but inevitably the bad days will always come back. There are limited options to treat symptoms, but they don't work well. Patients are basically told to "live with it." In some cases, it can't be lived with. While most people with GP get by on what is available, because there are no other options, quality of life is certainly very poor. Many survive on less than 1,000 calories a day, severe weight loss, disability, tube feedings, IV nutrition, medication with nasty side effects, and a life full of invasive medical treatments and hospitalizations. GP and CIP are not just simple illnesses which can be cured through diet changes, medication, or surgery. They do not mildly impact life. They have a profound influence on every daily activities, regardless of severity. There is no escape. Is this the kind of life a person wants to "just live with?"
There are also many situations in which living with GP and CIP are no longer an option. In severe cases, chronic malnutrition takes over and people are unable to survive the trauma on the body. The body often quits absorbing, organs shut down, and the liver may fail for those who have been on long term IV nutrition. Veins become inaccessible and there is no way for them to receive nutrition. Some who are fortunate enough to be aware of the option and be eligible may pursue a five organ transplant as a last resort to stay alive. While this can be miraculous and life saving, it doesn't come without its own complications for life. Individuals who reach this level of severity have become desperate. There are no options. They either risk their lives by going through a transplant, recognizing that even if they make it to the transplant and out of the OR, they face a lifetime of complications and possible organ rejection. But the only other option is starvation. There's not really a choice when you get to that point.
Living with GP and CIP is hard to describe. The best patients can do to help others understand is to tell people to consider what it would feel like to have the flu, every single day, and the impact that would have on your life. But then you have to throw in additional health problems and the stereotypes, comments, and claims by others that what they deal with is not real and not worthy of attention. Because they don't "look" sick, family and friends who don't believe put a wedge between them or completely leave, believing that the person is trying to use a mild condition to "benefit" from resources such as disability, have an excuse to get out of unwanted duties, a way to receive special parking "privileges," and other accommodations at work and school. They are often looked at oddly when forced to admit they are on disability because of a "stomach" problem, can't lift a box of sodas into their cars because they are too weak, get glared at because they park in an HP spot but get out of the car walking, and dealing with other colleagues and students who are jealous of the accommodations received to make life easier to live and adaptation into society easier.
GP and CIP need more attention. People don't understand what it is really like to fight these conditions and what daily life is like for those who suffer. They are downplayed as simply being conditions that can be controlled if "you would just eat correctly and avoid certain foods." While in some instances this is true, there is a very wide spectrum to the level that people die from these conditions as well. If not to the point of dying physically, many are unable to truly "live" at all as GP and CIP zaps the life out of them. Note how long it took you to recover from just a 24 hour flu. Then realize that in GP and CIP there is no recovery. There is no in between. It is a daily battle, with ups and downs, unknowns, and a life full of complexity and misunderstanding. Try to step into their shoes for a short time. Next time you have your head in the toilet, imagine life like that every day. Be thankful for what you have. Be thankful you will recover and life will return to normal. And remember those whose lives will never return to normal. Give back. Help them fight. Support them. Try to understand. Let them vent without judging them. Encourage them. They often lack self-confidence because they have either been judged so much or feel as if they are incapable of accomplishing important things because of being ill. Also, realize that you are dealing with some of the strongest, toughest, people you will ever meet. Thank you for taking the time to read this and step into the lives of those suffering from GP and CIP for a short time.
Sunday, December 20, 2009
2009 in review
The year 2009 came in like a lion and appears to be leaving in the same manner! New Years Eve seemed to be the coldest, windiest day of winter as I welcomed in the year with my Life Group and a collection of other local groups in a progressive dinner event, followed by the wrench drop in Mechanicsburg. Now I am looking out the window as a blizzard passes through the Harrisburg area. We already have close to a foot and the snow is expected to continue to fall through the night and into the morning!
This year has had its ups and downs. It’s been the toughest year I’ve had physically since my transplant in 2006, but a great year in other aspects. I have been able to participate in some incredible growth and activity within G-PACT, the non-profit I founded in 2001 for Gastroparesis. This year marked the beginning of our expansion into Chronic Intestinal Pseudo-Obstruction as well. I spent 18-20 hour days, 7 days a week through January, February, and early March completely overhauling all of G-PACT’s design work and website. It was certainly worth it as we joined the board of the Digestive Diseases National Coalition in March. Over one weekend each year, we attend a conference and one day lobbying with them and other digestive organizations in Washington, DC to increase awareness of our conditions and express our initiatives. This year G-PACT was the most largely represented group there with seven people traveling all the way from NY and NC!
In May, we exhibited again at the largest annual international GI conference known as Digestive Diseases Week (DDW) which was held in Chicago this year. We were invited to attend the Medtronic reception and meet other physicians and surgeons who treat GP and CIP, as well as additional Medtronic staff. The week also provided us with opportunities to introduce ourselves to physicians we had never met, speak with many we have worked with for years, and educate many on the conditions as a whole. It was a busy week buzzing with activity. A total of eight people helped with the exhibition that week coming in from MN, OH, PA, and TN. This year the event will be held in New Orleans and all of the same people plan to attend once again.
In June, G-PACT also exhibited at the Oley Foundation Conference held in St. Petersburg, FL. More of a patient-oriented event than the other two and geared towards people on home nutrition, we had the opportunity to meet with many patients we have served over the years and meet new ones as well. Representatives traveled from NY and NC as both attendees and exhibitors.
In August, I had the opportunity to attend the Willow Creek Leadership Summit, hosted via satellite by my church, for the second year in a row. That is an amazing experience and helpful in my work with G-PACT.
The growth of G-PACT has expanded into other areas as well. We have had recent encouraging teleconferences with the FDA regarding new drug studies, and have developed a close relationship with personnel there. In recent meetings, the group of 10-12 physicians, technicians, surgeons, and other staff have been very impressed with our selected patient group and with and the individual G-PACT volunteers. For the first time they recognize our dire situation and have an enhanced, more urgent interest in helping us find a better treatment option, focusing on medication to actually help gastric motility rather than medication to treat symptoms. They commented that we are the nicest, most dedicated patient group/non-profit they have ever worked with and that we truly are a team!
We also have launched several new programs and started working on a number of new ones. The number of people contacting us and joining our groups each week is astounding. We are really making an impact and I love doing what I do! It’s rewarding to see things moving in the right direction! God continues to give me wisdom as a very young leader in a rapidly growing organization. I know I am in the right place!
One of the other big highlights of my year has been my experience with LCBC Harrisburg. LCBC is the church I began attending in July 2006, immediately after I returned home from my transplant for the first time in almost two years. In October, 2007 a new campus was launched in Harrisburg and I jumped on board immediately working in kidMin (Kid Ministry) and have loved every moment! We have been meeting in a local school, but during the spring of this year we finally purchased a permanent home! We are moving in during January and there is much to be done! I have helped working with some of the demolition projects and am excited about soon beginning to help with the painting and design work for the kidMin rooms. I have served in many capacities including Life Group Leader (teaching kids in small breakout groups), kid greeter (welcoming kids as they come in the door), and in the kidArcade (a place for children whose parents worship in one service and serve in the second). My main role in the new building will be Captain of the kidArcade as I will be in charge of heading it up every week and being responsible for its upkeep. Our theme is changing from Safari Adventures to kidVenture Island.
I also volunteer in the LCBC HOB (Harrisburg Office Building) approximately one day a week. I really enjoy that too and may have more volunteer opportunities throughout the week once we move into our new location. I’m looking forward to that, as well as being able to go in every Sunday without having to dig everything out of moving boxes! While the temporary experience has been fun and bonding, and a great way to meet people, we are all ready to settle down in a permanent spot and focus on more things. My Life Group, a small group of about 10-12 people in their late 20’s and 30’s, has been awesome. I’ve never felt closer to a small group of people who are so open, accepting, and fun. Sunday is my favorite day of the week!
In May, I was thrilled to welcome our newest family member, Nolan, into the family! He was born on May 13 to my younger sister, Celeste, and her husband, John. He’s their first. Nolan makes my third nephew! My older sister and brother-in-law, Ben and Faith, experienced a change recently as well when they moved out of Etters to Manheim in order to be closer to their church. My parents keep busy with work as usual and love playing the grandparent role more and more!
Physically, this has been a very challenging year from the start. Last Christmas I received what was the greatest gift that day. Dr. Kareem (transplant surgeon) finally listened to me and started me on a treatment for the severe Dumping Syndrome I developed as a result of the transplant. The medication kicked in immediately. I thought I finally had my digestive conditions managed quite well. Unfortunately, I was still battling with extreme fatigue with unexplained anemia and required high doses of weekly blood product injections, numerous blood transfusions, and eventually six iron infusions. In the midst of all of this, I began to notice additional GI complications.
In April, it was discovered that my stomach was emptying slowly and I was given the diagnosis of Gastroparesis once again. Thinking it was caused by my medication for the Dumping Syndrome, the dosage was decreased. It was not long before my Dumping Syndrome got out of control once again. Testing later in July again showed Gastroparesis, and the Dumping Syndrome continued as well. Unable to absorb or eat much food, I started to lose a good deal of weight. I have been hospitalized multiple times since with malnutrition and weight loss down to 87 pounds. In September, my doctors placed another central line in my neck for TPN (IV nutrition) in an effort to get my weight up and my nutrition more stable. As usual, I started getting sepsis (infections in my line) and once had to be airlifted to Pittsburgh from Hershey Medical Center once I was stable enough for the trip. Within a few weeks I developed another infection on Thanksgiving Day and was admitted to the MICU at Hershey Med. Within six days of having a new line placed in my chest, the line was removed in the OR in Pittsburgh because it was already draining with infection again.
I am now trying to learn to eat enough to maintain my weight and nutrition in spite of dealing with both Gastroparesis and Dumping Syndrome, two opposite conditions! It’s too dangerous for me to remain on TPN, especially with a weakened immune system, and they said eventually it will kill me. My doctors continue to adjust my meds in an effort to help me be as asymptomatic as possible. I am working with the transplant dietitian more closely and am trying to learn how to move on with life in spite of how debilitating this continues to be for me. They are trying to work more closely with my local doctors in an effort to cut down on the frequent trips to Pittsburgh. I require weekly labs to follow my nutrition, especially my potassium which has been low and puts me at risk for cardiac arrest due to my long QT interval (heart condition). Please pray that between the medical team at Pittsburgh and my own efforts that we can keep everything under control.
I experienced a sad event a few weeks ago at the loss of my 6 ½ year old guinea pig, Spunky, due to old age. We went through a lot together and I still look for him to come shooting out of his igloo every morning to greet me. But, I still have my Jeep, Blue Lightning, and enjoy the summers out with top off! One of my transplant friends and I have plans to go muddin’ together soon!
I hope everyone has a great holiday and an awesome New Year! Although I am not sure exactly what my New Year’s Eve plans involve yet, I do know that I have a pretty full calendar for the next few weeks. And that’s the way I like it!
This year has had its ups and downs. It’s been the toughest year I’ve had physically since my transplant in 2006, but a great year in other aspects. I have been able to participate in some incredible growth and activity within G-PACT, the non-profit I founded in 2001 for Gastroparesis. This year marked the beginning of our expansion into Chronic Intestinal Pseudo-Obstruction as well. I spent 18-20 hour days, 7 days a week through January, February, and early March completely overhauling all of G-PACT’s design work and website. It was certainly worth it as we joined the board of the Digestive Diseases National Coalition in March. Over one weekend each year, we attend a conference and one day lobbying with them and other digestive organizations in Washington, DC to increase awareness of our conditions and express our initiatives. This year G-PACT was the most largely represented group there with seven people traveling all the way from NY and NC!
In May, we exhibited again at the largest annual international GI conference known as Digestive Diseases Week (DDW) which was held in Chicago this year. We were invited to attend the Medtronic reception and meet other physicians and surgeons who treat GP and CIP, as well as additional Medtronic staff. The week also provided us with opportunities to introduce ourselves to physicians we had never met, speak with many we have worked with for years, and educate many on the conditions as a whole. It was a busy week buzzing with activity. A total of eight people helped with the exhibition that week coming in from MN, OH, PA, and TN. This year the event will be held in New Orleans and all of the same people plan to attend once again.
In June, G-PACT also exhibited at the Oley Foundation Conference held in St. Petersburg, FL. More of a patient-oriented event than the other two and geared towards people on home nutrition, we had the opportunity to meet with many patients we have served over the years and meet new ones as well. Representatives traveled from NY and NC as both attendees and exhibitors.
In August, I had the opportunity to attend the Willow Creek Leadership Summit, hosted via satellite by my church, for the second year in a row. That is an amazing experience and helpful in my work with G-PACT.
The growth of G-PACT has expanded into other areas as well. We have had recent encouraging teleconferences with the FDA regarding new drug studies, and have developed a close relationship with personnel there. In recent meetings, the group of 10-12 physicians, technicians, surgeons, and other staff have been very impressed with our selected patient group and with and the individual G-PACT volunteers. For the first time they recognize our dire situation and have an enhanced, more urgent interest in helping us find a better treatment option, focusing on medication to actually help gastric motility rather than medication to treat symptoms. They commented that we are the nicest, most dedicated patient group/non-profit they have ever worked with and that we truly are a team!
We also have launched several new programs and started working on a number of new ones. The number of people contacting us and joining our groups each week is astounding. We are really making an impact and I love doing what I do! It’s rewarding to see things moving in the right direction! God continues to give me wisdom as a very young leader in a rapidly growing organization. I know I am in the right place!
One of the other big highlights of my year has been my experience with LCBC Harrisburg. LCBC is the church I began attending in July 2006, immediately after I returned home from my transplant for the first time in almost two years. In October, 2007 a new campus was launched in Harrisburg and I jumped on board immediately working in kidMin (Kid Ministry) and have loved every moment! We have been meeting in a local school, but during the spring of this year we finally purchased a permanent home! We are moving in during January and there is much to be done! I have helped working with some of the demolition projects and am excited about soon beginning to help with the painting and design work for the kidMin rooms. I have served in many capacities including Life Group Leader (teaching kids in small breakout groups), kid greeter (welcoming kids as they come in the door), and in the kidArcade (a place for children whose parents worship in one service and serve in the second). My main role in the new building will be Captain of the kidArcade as I will be in charge of heading it up every week and being responsible for its upkeep. Our theme is changing from Safari Adventures to kidVenture Island.
I also volunteer in the LCBC HOB (Harrisburg Office Building) approximately one day a week. I really enjoy that too and may have more volunteer opportunities throughout the week once we move into our new location. I’m looking forward to that, as well as being able to go in every Sunday without having to dig everything out of moving boxes! While the temporary experience has been fun and bonding, and a great way to meet people, we are all ready to settle down in a permanent spot and focus on more things. My Life Group, a small group of about 10-12 people in their late 20’s and 30’s, has been awesome. I’ve never felt closer to a small group of people who are so open, accepting, and fun. Sunday is my favorite day of the week!
In May, I was thrilled to welcome our newest family member, Nolan, into the family! He was born on May 13 to my younger sister, Celeste, and her husband, John. He’s their first. Nolan makes my third nephew! My older sister and brother-in-law, Ben and Faith, experienced a change recently as well when they moved out of Etters to Manheim in order to be closer to their church. My parents keep busy with work as usual and love playing the grandparent role more and more!
Physically, this has been a very challenging year from the start. Last Christmas I received what was the greatest gift that day. Dr. Kareem (transplant surgeon) finally listened to me and started me on a treatment for the severe Dumping Syndrome I developed as a result of the transplant. The medication kicked in immediately. I thought I finally had my digestive conditions managed quite well. Unfortunately, I was still battling with extreme fatigue with unexplained anemia and required high doses of weekly blood product injections, numerous blood transfusions, and eventually six iron infusions. In the midst of all of this, I began to notice additional GI complications.
In April, it was discovered that my stomach was emptying slowly and I was given the diagnosis of Gastroparesis once again. Thinking it was caused by my medication for the Dumping Syndrome, the dosage was decreased. It was not long before my Dumping Syndrome got out of control once again. Testing later in July again showed Gastroparesis, and the Dumping Syndrome continued as well. Unable to absorb or eat much food, I started to lose a good deal of weight. I have been hospitalized multiple times since with malnutrition and weight loss down to 87 pounds. In September, my doctors placed another central line in my neck for TPN (IV nutrition) in an effort to get my weight up and my nutrition more stable. As usual, I started getting sepsis (infections in my line) and once had to be airlifted to Pittsburgh from Hershey Medical Center once I was stable enough for the trip. Within a few weeks I developed another infection on Thanksgiving Day and was admitted to the MICU at Hershey Med. Within six days of having a new line placed in my chest, the line was removed in the OR in Pittsburgh because it was already draining with infection again.
I am now trying to learn to eat enough to maintain my weight and nutrition in spite of dealing with both Gastroparesis and Dumping Syndrome, two opposite conditions! It’s too dangerous for me to remain on TPN, especially with a weakened immune system, and they said eventually it will kill me. My doctors continue to adjust my meds in an effort to help me be as asymptomatic as possible. I am working with the transplant dietitian more closely and am trying to learn how to move on with life in spite of how debilitating this continues to be for me. They are trying to work more closely with my local doctors in an effort to cut down on the frequent trips to Pittsburgh. I require weekly labs to follow my nutrition, especially my potassium which has been low and puts me at risk for cardiac arrest due to my long QT interval (heart condition). Please pray that between the medical team at Pittsburgh and my own efforts that we can keep everything under control.
I experienced a sad event a few weeks ago at the loss of my 6 ½ year old guinea pig, Spunky, due to old age. We went through a lot together and I still look for him to come shooting out of his igloo every morning to greet me. But, I still have my Jeep, Blue Lightning, and enjoy the summers out with top off! One of my transplant friends and I have plans to go muddin’ together soon!
I hope everyone has a great holiday and an awesome New Year! Although I am not sure exactly what my New Year’s Eve plans involve yet, I do know that I have a pretty full calendar for the next few weeks. And that’s the way I like it!
Subscribe to:
Posts (Atom)