So, what happens when you cross an elephants nose and a slow rate of tube feeding formula? Clogged noses! Yep! Over a 6 day period, I was in the ED twice from a clogged up NJ tube! This is frustrating because it's the third trip I have made since discharge just over three weeks ago, and I'm looking at least another 4-5 weeks with this tube. On Tuesday, June 29 I went back in, exactly a week after the last time I had been there. The labs I had drawn the week before showed severe anemia and I had been scheduled to go to the infusion room for a unit of blood. However, when I woke up on Tuesday morning my tube was clogged up. I knew this wouldn't be fixable anywhere but the ED, so I solved two problems at once by going to the ED for blood (they ended up giving me two units) and to have my tube unclogged. Unfortunately, they were unsuccessful with Clog Zapper again and the whole thing had to be replaced. I was there from noon to 1 am between both problems. It took three attempts and x-rays to get it in the right spot. I had been off tube feedings since about 6:30 in the morning, so I was feeling pretty lousy by the time I got home. I slept most of the time in the ED thankfully! Partly because of exhaustion, and partly because I had to be pre-medicated with IV Benadryl for the blood. I was falling asleep before they even medicated me though.
On Sunday morning, July 4, I was at LCBC in the first gathering and noticed my pump had stopped and was flashing an occluded error message. I kept restarting it, but figured I was in a mess again. That morning I had tried to flush it and it had been sluggish. I flushed it with Coke and extra well to try to keep it open, but apparently I didn't do enough. Around 9:30 I noticed the message (I had turned off the alarm to avoid disturbing the service if any alarms went off). Finally, I left the gathering and went to an empty, private kidMin bathroom to try to unclog it (take a look in the bags of people with DTP sometime...you'll find interesting items, especially for those on nutritional support!). I wasn't successful, so I left early to come home and try more aggressively. None of those tricks worked, so I reluctantly headed back to the ED expecting a really long day! They almost decided not to do the Clog Zapper at all since it had failed both times before, but as per protocol they ended up doing it. This time was more encouraging almost immediately because the nurse said he felt like he had pushed through a tight spot when advancing the wire for the flush. I also had a much stronger taste of the Clog Zapper in my throat than I ever had before, so I was encouraged that it might actually work! After an hour, they tried to flush it again and it opened right up! Finally a "simple" solution to the clogged tube and a much shorter wait! I was able to be home in time for some of the evening of the fourth!
My nurse was great...he had dealt with a lot of NJ's when he worked in med/surg. He said that one reason it keeps getting clogged is because my rate is not fast enough and it ends up building up and solidifying. I had considered this was part of the problem, but it's not something I am able to change right now because my gut can only tolerate 20 cc's an hour. The other thing he said is that I need to flush it with more fluid and every four hours. This I can change, although it's not real easy. When I am only getting drips of fluid at 20 cc's an hour, a bolus of no less than 30 cc's at once makes me pretty sick. He said technically I should do 60, but 30 would at least get me through the tube. So, since then I have been using at least 40. In the morning and evening I use a little Coke and then water because I don't get out of bed every four hours and hope that will keep it open overnight and clear any formula out in the morning. I flush it more frequently during the day and he recommended that I get a prescription for Clog Zapper to use whenever it does get clogged. That way, I can avoid the ED unless I actually need a tube change. It would also cut a few hours off of ED time if that had already been tried before going in.
So, what's up with my doctors and the status of the potential j-tube? I don't really know except that not much is going to happen until at least mid-August. My transplant coordinator is going to be out of town the next two weeks. She said clinic is looking crazy. She encouraged me to wait until after she comes back so both she and Kareem can spend more time with me. So, my mom and I are scheduled to go back on July 29 to Pittsburgh. I'll discuss my options then and just hang in there with the NJ for that much longer. It's ok...my main rush is I am tired of it getting clogged all the time, but hopefully I have some better solutions on preventing that now and it will function better. plus it's a little annoying to have this thing right in my face, but I figure if an elephant can do it, I might as well not complain about it! It's a little easier to deal with something when you know it is helping though!
So, anyway, getting back on track...I will be attending the Global Leadership Summit which has a Satellite campus at LCBC every year as a host site. This year LCBC Harrisburg will be a host as well! I've been the last two years in Manheim and it's one of the highlights of my year, so I definitely don't want to miss it! That takes place the first Thursday and Friday in August, so I plan to wait until at least then to do anything towards the j-tube since I don't want to miss out on that and won't see Kareem until less than two weeks before. I may even wait until the end of August because G-PACT is holding a DTP Facebook Awareness week at the end of August that I'd like to be part of. Although my friends and other volunteers would be excellent handling it without me, I just want to be a part of the daily events and the whole week too! But I will see how things stand at that point and then decide. G-PACT's 9 year anniversary is August 23, so we have chosen that week to do an annual event through Facebook to increase awareness. We have some cool ideas started :)
On Monday, I was able to enjoy an evening out with one of my friends, Bonita. We went to Best Buy to play with the iPads, then to Panera bread just to sit and talk for almost two hours. It was great to hold an intelligent conversation with someone who has been wrangling with some similar questions and issues in life as I have been recently. It was nice to swap theories, ideas, and opinions openly. Then today (or Tuesday!) I went to see Toy Story 3 with one of my LCBC Life Group friends, Janae. It was a really great movie! I highly recommend it to ANYONE! I often have trouble making it through movies...I get bored, tired, or lose focus, but I didn't with this one!
Other than the medical drama, I've spent a lot of my time on G-PACT and sleeping A LOT! My biggest G-PACT project lately has been trying to get votes for us to win $20,000. We are in the running for it, but it's been really stressful and the competition has gotten tougher! I've been pretty worked up over it because it's really important for us to receive these funds, so it's been nice to have some down "chill" time with friends to kind of keep things at bay. There are 5 days left...I'm stressed because if things don't get better we will lose out on this, but I'll also be glad when it's over...regardless of how it goes...because I'm so tired of pushing it so hard and I have so much else I have shoved aside in order to get this accomplished. I need to get back into my regular, and newly added, work. I hope to eventually get out of the administrative aspect of G-PACT and move into writing and illustrating childrens books about DTP, tube feedings, TPN, life at school, talking to friends, not being able to eat, and other issues kids face and then sell them to raise funds for G-PACT. I also want to work on a book for young adults...humorous, yet serious, on dealing with DTP and include a lot of my Carissaisms. Eventually, I'd also like to write my own memoir. Right now I don't even have the time to keep up with the basic work I have to do! This is good in one sense because it means we have grown so much, BUT it's also frustrating. I am so grateful that there is so much help out there for me now though! We can get so much more accomplished now with about 30 people volunteering! And they are all so passionate and awesome! :)
I've been enjoying time in the Jeep recently with the top off! So much fun! I just love the summer, even though it's been so HOT! I am extra sensitive to the heat this year. I think my neuropathy has worsened because I have so much pain after being in the heat now that I didn't used to have as much. I get home and my hands and feet feel like they are on fire for a long time and I can't feel them well. I know partly it's because my nutrition is compromised more, but primarily most things I have had going on in my body are just deteriorating. I did hear about a doctor at Childrens Hospital of Pitt who knows a good deal about mitochondrial diseases and may be able to get some starter info and point me in the right direction as to whether or not I should pursue it before I actually make a trip out to Cleveland. He may even be able to diagnose me or find some of the markers for it through some genetic testing. I am hopeful that I can get in to see him next time I go to Pitt! My friends who have it have told me that I need to get in to see someone...and soon...because if it is Mito, I am on some meds that are making certain aspects of my condition worse. There are also some things that can be done to help slow things down and help me feel better in other ways. So, based on that, there's more of an urgency for me to get it checked out so we can try some new things and prevent some other potential problems or at least delay them some!
Thanks for your continued support. I'll try to keep posting on a more regular basis, especially since things are changing so often these days! Your prayers are appreciated for:
Wisdom as I make some tough medical decisions
My physicians to come to an understanding/agreement on my treatment so I don't lose support from either team
Increased nutrition and overall improved health status
No more tube (nose) blockages!
Friends who are battling some really tough physical challenges right now, many in the TICU at Pitt
Strength to continue the fight...physically, emotionally, spiritually, and mentally
Opportunities with G-PACT- the guidance I need as a leader and servant to so many people and the vision to remain in tact, especially during the challenging times when we seem to just hit brick walls!
Showing posts with label G-PACT. Chronic Intestinal Pseudo Obstruction. Mitochondrial Disease.. Show all posts
Showing posts with label G-PACT. Chronic Intestinal Pseudo Obstruction. Mitochondrial Disease.. Show all posts
Wednesday, July 7, 2010
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! :)
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! :)
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