Monday, July 19, 2010

The continued ramblings of the Scantephant

As most know, I was in the hospital AGAIN, last week. I was admitted to UPMC on Friday, July 9th after being at HMC on Wed and Thursday for a change of my NJ tube which had become clogged. I was at UPMC for a week basically for symptom control, testing, and nutrition.

I saw Dr. Kareem on Friday, July 16th for the first time since arriving. He gave me a number of options regarding my next steps. In the end, I decided to have him leave in my NJ tube for another week and try to see how it goes eating. If I can't keep up with it well, I still have the tube in for the rest of this week to use for feedings as needed so I don't get into a bind nutritionally. If that happens, we will probably pursue the next phase which is to have a j-tube placed surgically. The good news is, Dr. Kareem has agreed to do it which takes me out of the middle of it between my separate teams of physicians. At the same time, he will also do a full thickness muscle biopsy of my small bowel to try to determine whether or not I am in chronic rejection. Neither one of us thinks this is the case. We think it's more the dumping syndrome and gut dysmotility creating the havoc, but he said as long as he's in there, he might as well do that too along with exploratory surgery of the other organs. He didn't say, but I suspect he'd also do a lot of "clean up" of adhesions from my previous surgeries. He did this a couple years ago when I had my muscles closed. Apparently I was quite a mess at that time. I DO think that adhesions are contributing to some of my current problems so that could be helpful. Of course, any time you have a surgery, it only creates MORE adhesions.

My job this week is to work on eating as well as I can and see if my gut can tolerate it. If it does, great, we'll pull out the tube in clinic on Monday (the 26th). If not, we'll discuss the next option. He says the j-tube is a better option than the Peg/pej in my case because my particular motility issues will only create more problems with leakage and infection around the tube site if placed that way.

Last week in the hospital I started to have a lot of pain in my right hand. That hand has a tendency to be more purple than my left hand, something Dr. Kareem has noticed in some of his pseudo-obstruction patients. At first they thought it was tendonitis. It became so painful that I was requesting Tylenol in between my dilaudid to control it some. The pain started going up my arm and it started to swell near my elbow, so they had me watch for blood clots. In the end, my hand ended up swelling up so much and it became clear that I was holding in fluid because when pressed, my skin maintained it's indentation. They aren't sure why I was having so much pain from it unless it's because the tissues were inflamed from the fluid. Regardless, it has been improving and most of the swelling and pain is gone now. I also developed some fluid buildup in my abdomen which is still trying to dissipate.

For months, I have had difficulty urinating. There's hesitancy and I stop midstream (sorry people, it's life)! I've been to a urologist and had testing done which came back negative, as expected. This is a problem I developed in the final two years before my transplant as well and is not uncommon in CIP. The problem became even more apparent last week. I had been struggling all week with it, and finally lost it emotionally on Thursday after my biopsy. I was tired, coughing a lot because they had trouble getting the scope down my throat because of the NJ tube, and they had whisked in chest x-ray to make sure I wasn't developing aspiration pneumonia and to do an abdominal x-ray because GI thought they had dislodged my tube. I had to pee so much, but I couldn't and hadn't since Wednesday. My nurses decided to do a bladder scan which showed 700 cc's of fluid in there! That's a lot! They decided that, clearly, after all this time there was a problem and they would have to cath me in order to get it out. I was so upset over everything that this only made things worse. Thankfully my friend, Nancy, came by not long after all this started and was able to cheer me up with party hats and blowers.

I still had a lot of problems the rest of Thursday and went at least an 18 hour stretch without peeing. My doctors made it a requirement of discharge that I go before leaving the hospital on Friday, even though in between being cathed on Thursday and the trouble on Friday I had gone twice on my own. I'm still having a lot of trouble with that. When I had told my docs last week and they remembered that I had already seen a urologist, they just all looked at each other and made the comment about how it's the pseudo-obstruction. This new problem scares me somewhat because it may mean that the native condition that caused all my problems in the first place is creating havoc again, although, we've kind of started to come to that conclusion already. Initially, I was concerned about kidney damage because transplant meds often lead to kidney failure 5-10 years post-transplant, but fortunately my kidney numbers still look good!

On the positive front- thanks to a number of people banding together, and a LONG battle for every single vote for four weeks, last Monday G-PACT secured a $20K grant from Chase Community Giving! We have awesome ideas for these funds. We needed this money so much in order to move forward with a number of initiatives and it was just really cool how it all came down in the end! We were nervous in the final days as we had fallen from well within the safety range of receiving them all the way down to the bottom, but thanks to a few dedicated people we pulled through! A number of people hung around for hours online Monday night and IMed every single person who logged on to their friends list on FB and asked them to go vote for us to get the grant. Others had written every single person on their lists individually and asked them to vote. Many re-posted the link on their walls, at least once. In the end, it all paid off and every single vote turned out to be crucial as we barely pulled it out by 42 votes, finishing 189 out of the top 200! We needed to stay in the top 200 to receive the funds. We were all ecstatic once it was over with. While it was kind of fun on Monday night, late, watching as every vote came in like the night of election returns, we were all glad when it was over with and we actually had the final notification that we had in fact made it. A few people ended up in the hospital due to getting sick as a result of working so hard on it. Everyone who worked late that night was exhausted. Many stayed up late too excited to sleep. My room was right next to the nurses station and I was so caught up in what was going on I hadn't even noticed that all night long my door was open and my light was on. Finally, around 1 am one of them yelled into my room and asked what I was still doing up! I was kind of floored that I hadn't complained about my door or noticed it was open all night! I was too engaged in the task! It was worth it. The money will definitely be put to good use. We are going to have a board meeting soon to discuss the best way to use the funds and which awareness project to move forward with first. It's just really cool to see how people are coming together to help fight GP and CIP!

I got to meet Jodee Reid and her daughter, Matisse, and son, Fraanz, on Friday before going home. That was a lot of fun. Matisse has been waiting for almost four years for a small bowel transplant. They came here from New Zealand. I've been in touch with Jodee quite a bit for years, but this is the first time I got to meet Matisse in person. She's a joy and full of life! I had some party hats and blowers left over from my "party" on Thursday that Nancy had brought me that I gave to them and they certainly woke me (and the entire floor!) up! They were up there visiting Pauline too, a young lady from Australia who had a five organ over a year ago and was on my floor again. After they left my room, they went down to the garden with Pauline and her mom for a while. There was a nurse down there playing music, and apparently the kids and Pauline blew their horns as the nurse played and sang!

Sunday, July 18, 2010

This is what it's about...a God learning moment

Yeah, I keep getting it more and more God...

This is what life is all about...I know it in my head, I know it in my heart, but I'm human and it has to be re-enforced from time to time...

So, this morning, I'm sitting in Connections Cafe at LCBC waiting for the doors to the auditorium to open. Every Sunday morning, I arrive early to check in for The Wheelhouse and kill the remaining minutes by meditating, taking my 9:00 meds, people watching, or going around and finding other people to talk to who may happen to be there early (and not running around getting things set up)! There's never a dull moment. There's always someone to talk to or something to see.

This morning was kind of unusual. I was sitting at a table and it was particularly slow and I was extra tired. I had just put away my empty container of meds, and just decided I'd stay there and see who would walk through the doors that I knew and wanted to talk to. I had missed last Sunday so it was really important for me to catch up on the social aspect of everyone's lives. After all, a lot can happen in two weeks!

Instead of catching up on what my friends had been up to, I had an experience I never expected to have when I got up this morning. As I was sitting in the cafe, a man had just finished getting a muffin and some coffee and he looked at me. I waved and said "hi," knowing I had never seen him before, yet he seemed to know me. He asked if he could sit with me, to which I responded "of course!" I moved my stuff to make sure he had room.

After the basic introductions, he said "My first Sunday here was the day you got baptized." I wasn't sure how to respond to that right away because I wasn't exactly sure where he was headed. But he went on and it became clear to me that he needed someone he knew was a believer to talk to. He started to tell me that he had been through a pretty tough time in recent years and had only recently started to come back to church. He stated that he had been church hopping "some," but all the churches he had tried were so traditional and he just wasn't comfortable in the environment. He lost his job two years ago, and had spent the past two years working in a job that was killing him -literally- as he had been working with dangerous chemicals. He knew he couldn't stay there for long and was seeking better employment. I nodded my head in acknowledgment that he had my attention, and I just continued to listen as he shared his story.

He started to talk about how he he was sitting with his son one night a few months ago, apparently drinking and watching sports, and said to himself "there's got to be more to it than this." He was frustrated with his employment and his life felt unfulfilled. He was seeking something, but he wasn't quite sure what. He had applied for five jobs and not yet heard from any of them. He was frustrated, and although he had his health, he knew he was not in a good situation with his job and not satisfied with the direction his life was headed.

He stopped briefly to ask me if I wanted anything from the cafe before the doors opened and then he continued with his story. He described how that night when he realized something was missing in his life, he decided to banter with God. He told God that He wasn't ready to move full-force into this faith thing, but He would meet God halfway. I'm not personally sure how I feel about "negotiating" with God, but I just listened...after all, this was HIS story. He told me that when he talked to God that night he said if God would show Him something, that somehow there's more to this, He would at least start going back to church.

Over the next few weeks or so he was turned down for four of the five jobs he had applied to. He wasn't expecting much, but his final application was in at the Army Depot in Mechanicsburg. Finally, Good Friday arrived. He made sure to emphasize the fact that it was Good Friday several times as he shared. He stated that around 10 that morning the phone rang. It was the Army Depot and they were asking him if he was available to come in for an interview. His eyes lit up as he stated, again, that "it just so happened to be Good Friday!" and that he was off work that day! He went on to describe how he had an interview at noon, and was called and offered the job by 3. Then, once again he said "and it just so happened to be Good Friday!" He said he knew then that there was something...he wasn't sure what, but that he knew it was not something that just happened. There was more behind it.

In spite of that, it took him a couple of weeks to "meet his end of the bargain," as he put it. I had told him earlier when we were introducing ourselves that I started attending LCBC Manheim in 2006 and had attended the Harrisburg campus since it was launched in Linglestown Middle school in 2007. He noted that he had never heard of LCBC until he saw the signs when we moved in last January, and that he only lived a couple of miles away. When he realized that what had happened to him when he prayed that night negotiating with God, and believed that the events that happened to him on Good Friday were not simply coincidental, he decided to check out LCBC. He admitted that he was a little disappointed when he walked in the doors that first Sunday and realized it was a baptismal service rather than a typical gathering with a sermon, but that in the end it was the perfect one to be at. The stories were inspirational and he loved to hear how the lives of others have been changed by Christ too. He concluded by stating that he only wished he could get his family there, but that his wife had begun to watch some TV ministries similar to LCBC and he was encouraged by that.

At that time, the atrium was beginning to empty out and people started to enter the auditorium. He said "well, I guess it's about time for things to get started." I said "yeah, it looks like it. Nice to meet you! Cool Story. I LOVE cool stories like that! See you around!" I proceeded to pack up my stuff and headed to the auditorium to find my friend, Jeff, as he gathered up his muffin and coffee trash to throw out. Again, God had another learning moment in store for me. As much as I enjoyed my chat time with him and was fascinated with his story and his willingness to be so open with me, I still had friends I needed to catch up with...I mean, HAD been two, LONG weeks! :)

As I was catching up with Jeff on football, his love of snow, my love of the sun, his new job, his new hours, his plans for the day, and my Jeep, I saw someone walk to my right and sit down. It was the same man whom I had just spent at least 15 minutes chatting with taking a seat by himself two seats down. It hit me then that I should have stepped out of my comfort zone and invited him to sit with me rather than assume he had someone to sit with, or assume that he wouldn't want to sit with a 32 yo with a tube in her nose! And what was more important? Reaching out to someone who is still seeking and coming to church without family, or making sure I was up to speed on everyone else and making up for what I missed last week?

Over the next few minutes I knew what I needed to do to. As we sat there, listening to Pastor Mike ramble on about the importance of filling out the "Keeping in Touch" forms, I pulled out one of my business cards and handwrote my name and personal e-mail address on the back and handed it to him. I said "just in case you need to talk" and gave him two thumbs up. He said "thank you" and put it away. He thanked me again after the service for giving him my contact info as I said "it was nice to meet you...thanks for sharing your story."

I don't know if he'll write me at all, but I'm sure I'll run into him again. I'm glad that he felt comfortable coming to sit with me and sharing his story before the service, and that after I botched my first opportunity to invite him to sit with me, that he came and sat by me anyway.

I struggled for a long time over whether to get baptized again in March since I did it as a child, but after a lot of prayer I decided to do it because I felt like as a child I didn't fully understand the significance of it and my life has changed tremendously since...something I wanted to share with my new church family and public. I prayed that my story would somehow have an impact on the life of someone, but did not expect to actually hear or experience any outcome from it. Ironically, today was also baptism Sunday where more stories of lives changed by Christ were shared.

This is what it's about. This is what baptism is about. It can be hard to swallow your pride and admit that you need to take that step, especially when you have grown up in a Christian environment your whole life and everyone always assumed you were a Christian. It isn't the most comfortable thing to do to have your very personal, often painful, story shared with so many publicly. It's a little scary to look down into a pool of water and realize that your head is about to go down there and putting your trust in Pastor Mike not to drop you (or drown you as a Steelers fan!). But it's not about pride or discomfort. Jesus humbled himself and suffered great discomfort to reach out to others. He very publicly proclaimed His faith in the Father through baptism in a river in front of thousands of people. It doesn't stop there though. Baptism may be following in obedience what God proclaimed to be importance following the acceptance of Jesus as the Savior, but your life must also follow your proclamation.

I knew that some people who heard my story on March 23 would not have known the details behind my decision or why and how I came to Christ and decided to be baptized. I didn't expect it to lead to anything substantial. After all, I was one of 12 who was baptized that day. But apparently something hit this man in particular. Something big enough that he felt comfortable coming up to a complete stranger and talking about his struggles. That's what it's about.

I'm glad I chose to attend the first service this morning. I'm thankful for the clarity of mind God gave me and the fact that it was an unusually slow morning. It wasn't a coincidence that I was sitting there, tired and quiet, when he came up. Usually by then I would have jetted off somewhere and found someone to laugh it up with, playfully punch, or at least talk to about the events of the past or upcoming weeks. I hope that our interaction this morning was a start of something in his life that will lead to much greater things. After all, that's what it's all about. It's crucial to interact with other believers, study the Bible and worship every week together. It's important to serve in any capacity to ensure the ministry continues. But it's important to stop once and a while and think about those around you who may be there seeking something more, something new or different, and to be one who has shown an example that your life has been changed by Christ and is willing to share it.

Wednesday, July 7, 2010

The Elephant Clog

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'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 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!