Thursday, May 27, 2010

running out of gas, or maybe not!

Once again I am frustrated over hearing "there's nothing we can do, deal with it." I know this is true, but you can only say that for so long before things to happen and body parts start to fall hair...and a few other things! My awareness bands for all my various awareness things...can't wear those anymore. Ya know? Like Blue Lightning, if I ignored a problem too long it would only makes things worse and he would start making a lot of noise. I guess that's what I'm doing! I'm not letting them ignore this and am making some noise! Unlike Blue Lightning though, I will never run into the problem of running out of gas! ;)

So...I called my PCP's office today for an urgent appointment for Thursday at 1. I am planning to get my sandostatin injection for my dumping syndrome, but I am going to talk NUTRITION and what is the solution when I am so sick, in pain, and cramping on just a few crackers, an egg, or some cheese? My body feels it...I ache all over, I'm weak, short of breath, and have chest pain and tightness. I'm generally weak all over. I'm talking pain at times that has had me in tears and yelling out....something I rarely do. I'm not sure what my options are...TPN is out because of my high infection risk, eating is not working...that I've been trying for months and months and have just failed. I'm not sure Pitt has dealt with someone with two opposite conditions so I'm kind of just a test and just figuring it out on my own. The dietitian hasn't been helpful...she's tried, but everything that's ok for one thing is nasty for the other now. I used to handle eggs ok, but now they affect me one way or another. I don't know if my gut is screwier, I am personally screwier, or my meds are just all messed up! I do know that long periods of not eating well makes the digestive problems worse, but what do you do??? I'm always telling people to keep eating as much as possible to prevent that, but, like me, the response always is...easier said than done! I know that. Why do I recommend things I know are ridiculous? I must think I'm a doctor! HA! Only I have the first hand experience...I should know better! It is the's just kind of a stupid truth to know because it's not like there's much that can be done about or pain and then eat again? It's like subjecting yourself to torture...but oh how I love food!

I guess over time my appetite has disappeared which is some ways a blessing because I am not so mentally tortured. The fact is that if I did have an appetite I still wouldn't be able to eat any more. I think I almost always had an appetite even pre-transplant, but now, even on steroids, there's not much there except the occasional craving for something during a time when my gut feels ok...but most of the time I'm a queasy mess and that prevents a desire to even look at food.

I often think, oh, my gut is ok right now, I won't get sick if I eat something...then I have a bite of something and I know that my gut isn't ok after all...and very quickly most of the time. Even just a sip of my Crystal Lite or diet soda can make me sick for a really long time...and THAT kills my appetite for anything's good to try things to make sure that I'm not just in a slump...a one year slump (?) but I try on the cautious end. Nope. No slump! Something has changed. I just wish we knew what it was. The unexplained is pretty maddening! The good thing about being bald? I am not pulling my hair out over all of this...and it's so darn easy to take care of...a simple washcloth does the trick if I don't feel like I have enough energy for a full shower. One of these days though, I won't mind pulling out the mop! :)

Monday, May 24, 2010

The happenin's from Pitt....and life and stuff....

So I went to Pittsburgh last week and basically returned knowing what I did before I went- I have Dumping syndrome, Gastroparesis, Pseudo-Obstruction and there is nothing else they can do. I am not eligible for TPN at this time because of my high infection risk and lack of veins. I am healthier and more active than before the first transplant, so re-transplantation is off the table for now because of the high risks associated with that. I must admit, even the mention that it's off the table threw me for a loop because that is not even an option in my opinion at this point anyway! It hadn't crossed me mind! That could only make things worse if it doesn't work out and I don't feel like I'm there yet either! Basically- deal with it all the best I can. This is what I have been hearing since I was first diagnosed! Ho Hum...

Dr. Kareem noted several things while there. One is my hair loss- instantly. He is quite concerned about it. While I think it's just poor nutrition...still...he seems to think there is more going on. They did a lot of blood testing including thyroid, which came back negative, some testing to see if I am sharing genes with the organ donor, zinc levels, and other things. Another thing he noted is that he has a number of patients who have been transplanted as a result of CIP and the condition has returned a few years later. He did a paper a couple of weeks ago on four of us and included some thoughts on why that might be the case, but basically came to the conclusion that they don't know and it's important to continue the research. This interests me because just a couple of years ago he told me he loves CIP because it is dormant- once you take the organ out, the condition is cured. Apparently, he has since discovered this is not the case in a number of people, especially those who developed it later in life and were not born with it. There is still so much they have to learn, and he acknowledged I am teaching him. Not sure how I feel about that. I guess if I have to go through it, I might as well educate him in the process...I just wish there was a simpler way to do it!

In addition, he noted my case is not normal and he KNOWS I have an underlying condition causing things to deteriorate again. He looked at my hands and noted that one is a different color from the other.He commented on the abnormality of the appearance of the veins in my arms and how they run. He noted a lot of the other abnormalities I have described in mitochondrial disease in a lower blog. My coordinator encouraged me to pursue it because Kareem is really seeking the answers for the cause right now and if I can figure it out in my case, it may help others as well. So, I am going to begin communications with a physician in Cleveland and may make a trip down for testing, which includes a muscle biopsy, in the near future. I may not be helped at this point, the damage has been done, but perhaps the progression could slow down as I am rapidly developing newer problems and my GI tract is really start to enter a bad point again. In addition, if they can learn anything from me to help others in the future, I'm all game for doing that. I'm as ready to find a cause as they are so we can prevent or cure the problem in the future for others. He did mention I could be in chronic rejection and that they may not know about for a long time. It often doesn't appear in testing for a while. I don't know if that's the case or if it's just the effects of the conditions combined and inability to manage the complex diet. I guess only time will tell.

Having said that, I am surviving on string cheese, scrambled eggs with cheese, cottage cheese, sugar free yogurt, occasional mashed potatoes, and rarely pasta. Pills and fluids in small amounts are my main source of nutrition. I also only really eat once a day and that is enough to send my gut into a complete tailspin...and the "really eat" is scrambled eggs...or diabetic yogurt...or 4 oz of cottage cheese. I am often up all night sick and in pain just from that...abdominal and back pain I'm trying to avoid my phenergan and extra pain meds because they wipe me out beyond function and I can often deal with the symptoms much better than the sleepiness. I'm concerned. I ache all over all the time, am weak, fall a lot, unbalanced, and generally feel unwell. I'm tired all the time and get frequent, severe migraines which then make me even more nauseous! I was up all night the other night with pain and nausea so severe I was literally in tears and screaming out for some level of relief...I'm strong and rarely do that. I'm tough and have been through worse, but the other night I was wondering how much more I can handle.

It's so tough to know that every single bite I put into my mouth is going to make me sick to some degree, no matter what it is, but I have to eat anyway. I really wish eating wasn't required for survival. Something that we are supposed to enjoy on earth is something I completely dread and brings me such anguish.

I wake up in the mornings still sick from the night before and with a cough and chest pain from my LPRD (swallowing disorder) and overall slow motility. After a little while, I start to feel better and start doing things. It's a challenge because if I don't eat I actually have more short-term energy and can do more, but once I do eat, I become completely non-functional and fall asleep! It's not healthy to be in either extreme! Then, of course, the overall impact off not eating well over the long-term sets in and I feel bad either way I go. But I continue to do as much as I can!

I saw my osteoporosis doctor on Thursday. She added more testing into the hair loss and suggested that I see my dermatologist as well. She mentioned I have lost bone mass again in the past year and doubled my calcium. She wants me to return in six months instead of one year this time. I am supposed to take my annual Reclast infusion at Hershey Med as soon as I can get into the infusion room. Great...they get to put in an IV line for a ten minute infusion! HA! It'll take them a couple hours just to get the line in!

I'm really tired and sleeping way more than not, so I have trouble writing much right now or keeping people updated on anything anymore- whether G-PACT, Life, my health, or other things. I go through crash phases all the time, but they are becoming more frequent the longer this goes on. I HOPE something starts working right so I can get back to at least 1,000 healthy calories a day and get some spunk back. Plus, I'm tired of being up late at night reeling in pain or fighting off nausea...and having to choose between nausea or being crashed out on pain or nausea meds for days! It's a tough balancing act...but in general I choose nausea/pain over crashouts!

G-PACT continues to go awesomely...I love all my friends, volunteers, and so many who are so passionate! To the ones who are actual volunteers, to those who support us in any way by awareness or donations, to those who simply follow us seeking the help and hope we provide. Everyone is so important and we are all fighting this together, no matter what capacity.

We've had a number of events going on lately and have a new FR director and new PR director. We've also run into, yet another, complication which points to the need for more awareness! Medicare recently decided to stop covering idiopathic GP as a principal diagnosis. We have a large letter writing campaign going among patients and loved ones, have all 28 members of the Digestive Diseases National Coalition active in fighting this decision, top motility doctors, and top attorneys as well. Our voices are being heard...we have declared war. We can only hope it makes a difference. So many of our patients have idiopathic GP and are on Medicare. They face the risk of losing coverage in 2011 if we can't get this decision reversed.

Please pray for all of us at G-PACT as we fight this, in particular our VP/Esq. and myself. We are both feeling the pressure of this and are feeling overwhelmed with the amount of work involved to ensure we protect our members who so desperately need to have this decision reversed. What Medicare does often is a foretelling of what other insurance companies will do, so what we accomplish this first time around is vital! The decision should not affect me since my primary diagnosis goes under the Medicare transplant program, not GP, but there was a time it would have definitely impacted me so I understand the fears and frustrations shared by my many friends! We are determined to get this reversed...the last thing GPers need is another thing taken away or not approved, only adding to the stress of dealing with the condition and the loss of hope.

I still am active with LCBC and just love it and the people there more and more. I like to spoil the Wheelhouse kids, and my wheels are always turning for ideas (so to speak!) on how to take it to a new level and create an environment which provides uniqueness each week so that the kids who participate each week always want to come back and look forward to something different on a regular basis. It's fun...I enjoy being able to make a lot of decisions and plan a lot of things. My current project idea is to make a couple of fleece, tie-knot blankets of video game characters to use when watching movies on the body pillows! It gets cold in there sometimes...and besides...a movie just isn't as good without a blanket to curl up under, even if it's really hot out! :)

Monday, May 10, 2010

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,

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 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'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.