I’ve been struggling to keep people updated, outside of blurbs in FB, but I am able to write this summary up today. This gives you have a general idea what to pray for with me if you do, what’s been up and what is coming up in case u haven’t been able to follow things or are not on Facebook.
1. Surgery went well, tube in and working. I am having a really hard time getting my rate to a level which will allow me to maintain weight at this point. I need to get even higher than that to even start gaining anything. At this point I am still losing at times. Gaining weight on tube feeds is much more difficult than on TPN (IV junk), especially if the gut can only tolerate so much. Confirmed return of GP and CIP not surprising, but not encouraging. Biopsy of removed lymph node looked ok…a little inflammation and stuff, but nothing that would make them think I am in chronic rejection! =)
2. Recovered from bowel obstruction w/ no surgical intervention, but the effects of losing an extra couple of weeks without nutrition and the additional weeks in the hospital have made me extra physically weak too. I can hardly walk, stairs are almost impossible, curbs outside stores have almost brought me down a few times. I have to pull myself up stairs with the hand rails or crawl up, and I am loaded down with my tube feeding backpack and anything else I need to carry at the same time. It’s going to take a lot of either personal rehab at home using what I’ve learned over the years, or some outside rehab to get anywhere close to where I was before the surgery. I was bad off strength wise before surgery because I was almost to the point of using my walker again even before that. So, I have a long ways to go in that aspect, but better nutrition will also factor in once I can get that up. I’ve almost fallen many times already and was falling a lot before the surgery…in Target once, at Giant once, at home a lot. After my transplant when I came home I did fall and burst my head open, so it makes me nervous. I do have osteoporosis even worse now than then. I am also wobbly on my feet and lose my balance. This could be meds, weakness, neurological/neuromuscular issues, and/or a combo…but my fall risk is extremely high.
3. Potassium still running low w/ supplements. They’ve increased me to very high levels. Encouraged to start seeing my cardiologist at Hershey Medical Center again for more routine EKG’s again because of my history of cardiac arrest due to my long QT interval. Was not concerned as long as my potassium/nutrition was better, but with everything coming back, we have to be cautious again.
4. Mom said schedule appointment with the Mitochondrial Disease doctors to start pursuing that avenue as an explanation for all of my problems. If I do have a Mito, I may be on some meds that are actually contributing to my problems. So, I could do something to slow the progression down. This is a condition, if you didn’t know, which is genetic and ties all of my seemingly unrelated problems together. Apparently considered by Dr. Koch (greatest GI doc in the world) in the early 2000’s for me, but he never said anything b/c he didn’t think anything could be done AND it can be hard to diagnose. Told me he had considered it for me when I saw him at DDW in 2008 and brought it up on my own. Mito testing, however, is not often covered by insurance so I’d need to be able to get into a research study or something. UPMC has two top mito docs, rare docs to find…again, there is a reason my fam was moved to PA in 1995! I have always been the one to benefit the most from the move!
5. The arm that was beat up in the hospital is still very painful and unusable for labs for weeks, if not longer. I’m still in enough pain to take dilaudid at least twice a day which wears off quickly. If you know me much at all u know that I despise pain meds and I always have leftovers after surgeries because I just don’t take it! Other pain meds for the chronic pain is the same. More nausea meds still, so I’m kinda loopy between it all…in case u can’t tell!
6. I need to allow myself time to heal, but again, you all know me and I don’t like to do that. I just like to keep going and it’s a very healthy way to be…most of the time! But now my body is really dictating for me quite clearly what I can and can’t do...i.e. it literally won’t move sometimes or the pain or fatigue hits when I want to get up and do something stupid. I AM paying attention most of the time…I think…because I know I am slowing things down if I don’t. But I am frustrated! Driving some, but not much because of the meds and I’m trying to back off on those. It’s important for me to figure out the line between where I need to push in order to heal better. Sitting around at home all day, even doing things for G-PACT, isn’t good and won’t help me gain any physical strength. But doing TOO much that I create problems is a concern as well. So I am working on that line and trying to just take it day by day, even hour by hour.
LCBC’ers…I think Sunday’s sermon was meant for me. I do feel like things are out of control with my health and I can’t personally get them under control, but I keep trying. I need to just be still and let God on this one…and I do feel like I had been soooooo busy with G-PACT and other life activities that this is a time for me to get grounded again by being forced to slow down for a while, focus on my health a bit more, stop trying to save the entire world from their problems, and figure out a healthier way to move forward in the future and juggling the many things I want to do. The problem is I am passionate about everything and I want to do everything all the time. To top that off, I’m a perfectionist! Deadly…
Saturday, October 2, 2010
Thursday, September 2, 2010
It's Carissa this time. Thanks Celeste for your posts on Tuesday :)
Costa came in this morning and they pulled the NG tube out. That was a relief. I feel a lot better just from that hose removed. The NG is MUCH bigger than the NJ so it's even more annoying. He said I could have ice chips (I had asked last night if I could have SOMETHING because I was feeling sick from not eating and not getting tube feeds...weird how that is), told me to walk, blah blah.
Then Kareem came in later and he always changes everything around. He walked in and said "Why are you on so many antibiotics???!!! Are we trying to make you sick?" To which I responded..."I think so!" Then he saw my j-tube connected to a drainage bag and said "Why are you hooked up to that???" I'm like "Kareem, I don't know! I didn't do it!" He said "stop the antibiotics, stop the fluids, disconnect that j-tube from drainage, You're not two days post-transplant!" My response was, "that's fine with me!" He was upset that Costa had me on so much stuff. That's typical. Kareem is more aggressive, Costa is a lot more cautious, and Kareem is the boss so what he says is final!
I'm happy because these IV drugs make me feel horrible. The less I have to take, the better I feel and the less things I'm connected to, the more human I feel too! I'm still getting vancomycin 2x/day with IV benadryl and tylenol because I've been running a low grade fever all day and they want to knock any potential infections out before they really get started. They weren't able to find a spot for a central line in my neck, so they stuck it in my femoral. That's a scary spot because it's really unclean, not to mention a pain to access! The sooner they can pull it out the safer I will feel. Yeah, kind of running out of "real estate" as my nurse said when he saw that they had also stuck an IV line in my foot on Tuesday. They couldn't find a vein anywhere else. Never a fun experience. When they infiltrate, it feels like a sprained foot. Thankfully, this one was pulled out before I even woke up.
Today I got two runs of potassium, one of magnesium, one of calcium, and a unit of blood. They are starting me back on weekly Arinesp injections (helps body produce red blood cells) because my counts have been running low again. Hopefully that will help my energy levels.
Anywho...the fluids are still running at a fairly slow rate because I had some really bad nausea this afternoon after they pulled the NG and it wasn't suctioning the junk out of my gut anymore. My nurse said it's up to me if we keep the fluids going, but I haven't been drinking much at all. With no tube feeds, I think it's too early to stop them. They were going to start tube feeds tonight at a rate of 5cc's/hour, but they decided to wait until tomorrow morning to give my gut more time to wake up from the anesthesia. They said I could hook the j-tube back up to drain, but I didn't want to do that unless the nausea didn't ease up enough after a dose of phenergan. I feel better than this afternoon and tons better than yesterday. Hopefully tomorrow I'll start grazing again like I do and they can start the tube feeds up. They are going to use the same formula I have been using at home since they know I tolerate it ok. I am taking most meds orally now with the exception of phenergan (nausea), my cortef (steroids), and dilaudid (pain).
Overall, I'm doing well. I'm getting around on my own most of the time. I kind of freak my nurses out sometimes because I do things they think they should be helping me with. I just like to get things done and they are too slow getting here when I call!
Costa said biopsy results of my lymph node should be back early next week. Other than that, not much to report. Just trying to get things straightened out.
Oh, this is funny...Dr. Costa said they were really impressed with the placement of the NJ tube I came in with. He asked who did it, and I said Hershey Med. Then I realized that, yeah, Hershey got it down my nose, but they didn't get it in far enough because the next day I woke up coughing and with stuff in my throat and chest. So, instead of going back to the ER, I pushed it in the rest of the way myself...HA! I seriously should be a doctor...to impress these guys with any medical procedure says something! They ARE the best!
Costa came in this morning and they pulled the NG tube out. That was a relief. I feel a lot better just from that hose removed. The NG is MUCH bigger than the NJ so it's even more annoying. He said I could have ice chips (I had asked last night if I could have SOMETHING because I was feeling sick from not eating and not getting tube feeds...weird how that is), told me to walk, blah blah.
Then Kareem came in later and he always changes everything around. He walked in and said "Why are you on so many antibiotics???!!! Are we trying to make you sick?" To which I responded..."I think so!" Then he saw my j-tube connected to a drainage bag and said "Why are you hooked up to that???" I'm like "Kareem, I don't know! I didn't do it!" He said "stop the antibiotics, stop the fluids, disconnect that j-tube from drainage, You're not two days post-transplant!" My response was, "that's fine with me!" He was upset that Costa had me on so much stuff. That's typical. Kareem is more aggressive, Costa is a lot more cautious, and Kareem is the boss so what he says is final!
I'm happy because these IV drugs make me feel horrible. The less I have to take, the better I feel and the less things I'm connected to, the more human I feel too! I'm still getting vancomycin 2x/day with IV benadryl and tylenol because I've been running a low grade fever all day and they want to knock any potential infections out before they really get started. They weren't able to find a spot for a central line in my neck, so they stuck it in my femoral. That's a scary spot because it's really unclean, not to mention a pain to access! The sooner they can pull it out the safer I will feel. Yeah, kind of running out of "real estate" as my nurse said when he saw that they had also stuck an IV line in my foot on Tuesday. They couldn't find a vein anywhere else. Never a fun experience. When they infiltrate, it feels like a sprained foot. Thankfully, this one was pulled out before I even woke up.
Today I got two runs of potassium, one of magnesium, one of calcium, and a unit of blood. They are starting me back on weekly Arinesp injections (helps body produce red blood cells) because my counts have been running low again. Hopefully that will help my energy levels.
Anywho...the fluids are still running at a fairly slow rate because I had some really bad nausea this afternoon after they pulled the NG and it wasn't suctioning the junk out of my gut anymore. My nurse said it's up to me if we keep the fluids going, but I haven't been drinking much at all. With no tube feeds, I think it's too early to stop them. They were going to start tube feeds tonight at a rate of 5cc's/hour, but they decided to wait until tomorrow morning to give my gut more time to wake up from the anesthesia. They said I could hook the j-tube back up to drain, but I didn't want to do that unless the nausea didn't ease up enough after a dose of phenergan. I feel better than this afternoon and tons better than yesterday. Hopefully tomorrow I'll start grazing again like I do and they can start the tube feeds up. They are going to use the same formula I have been using at home since they know I tolerate it ok. I am taking most meds orally now with the exception of phenergan (nausea), my cortef (steroids), and dilaudid (pain).
Overall, I'm doing well. I'm getting around on my own most of the time. I kind of freak my nurses out sometimes because I do things they think they should be helping me with. I just like to get things done and they are too slow getting here when I call!
Costa said biopsy results of my lymph node should be back early next week. Other than that, not much to report. Just trying to get things straightened out.
Oh, this is funny...Dr. Costa said they were really impressed with the placement of the NJ tube I came in with. He asked who did it, and I said Hershey Med. Then I realized that, yeah, Hershey got it down my nose, but they didn't get it in far enough because the next day I woke up coughing and with stuff in my throat and chest. So, instead of going back to the ER, I pushed it in the rest of the way myself...HA! I seriously should be a doctor...to impress these guys with any medical procedure says something! They ARE the best!
Tuesday, August 31, 2010
The post-surgical news so far is good...
(Celeste, again...)
So far, everything I have heard regarding Carissa's post-surgical condition has been good. They were in the process of moving her to her room around dinner time this evening after having several post-surgical infusions (potassium and I'm not sure what else).
When I spoke with Mom around dinner time, she had only seen Carissa for a few minutes in a hallway. She said that her color looked good and overall she seemed about as well as could be expected at this point. While Kareem was able to place the j-tube, Carissa is not quite done being a "Scantephant". She still has an NJ (or NG, we're not sure which) tube. This is a new one that was placed while Carissa was sedated and Mom says it is a bit larger than what she's had for the last few months. We suspect that the purpose of this one is primarily drainage for the next few days, as has been typical following other surgeries she has ha in the past. Dr. Kareem said that he plans to begin feedings through the j-tube in a few days.
The great news is that Carissa is not having to go to the TICU! They are moving her to 11 North (we suspect 12 North is full) which is another floor dedicated to transplant patients. She will be so much happier there and it makes visiting much easier for Mom and Dad.
I suspect that Carissa will not be up for other visitors for a few days. So, if you are in the Pittsburgh area, please make sure you call and check before dropping by for a visit.
As there are details worth updating, we will make sure we post them here! Continue to pray for Carissa and for her protection from post-surgical complications, especially infection. Thank you so much!
So far, everything I have heard regarding Carissa's post-surgical condition has been good. They were in the process of moving her to her room around dinner time this evening after having several post-surgical infusions (potassium and I'm not sure what else).
When I spoke with Mom around dinner time, she had only seen Carissa for a few minutes in a hallway. She said that her color looked good and overall she seemed about as well as could be expected at this point. While Kareem was able to place the j-tube, Carissa is not quite done being a "Scantephant". She still has an NJ (or NG, we're not sure which) tube. This is a new one that was placed while Carissa was sedated and Mom says it is a bit larger than what she's had for the last few months. We suspect that the purpose of this one is primarily drainage for the next few days, as has been typical following other surgeries she has ha in the past. Dr. Kareem said that he plans to begin feedings through the j-tube in a few days.
The great news is that Carissa is not having to go to the TICU! They are moving her to 11 North (we suspect 12 North is full) which is another floor dedicated to transplant patients. She will be so much happier there and it makes visiting much easier for Mom and Dad.
I suspect that Carissa will not be up for other visitors for a few days. So, if you are in the Pittsburgh area, please make sure you call and check before dropping by for a visit.
As there are details worth updating, we will make sure we post them here! Continue to pray for Carissa and for her protection from post-surgical complications, especially infection. Thank you so much!
Carissa is Out of Surgery
(Celeste, again...)
I just spoke with my Dad who informed me that Carissa is now out of surgery! She has been out for about an hour already. From what we understand so far, they found far less adhesions than they expected, which made the surgery go much more quickly that we expected. So, that's good news. Kareem was also able to successfully place the j-tube.
Dr. Kareem did a biopsy of the stomach and duodenum. We are not certain yet regarding a biopsy of the small bowel, but it sounds like he may have been able to avoid doing the resection of the bowel for that biopsy - but we are not certain of that information. Kareem indicated that he examined a few other things more carefully as well while he was performing the surgery, but we don't yet fully know the details of any of these things.
Mom and Dad have not yet heard yet whether Carissa will be going to the Transplant ICU or if she will be headed to 12 North - the normal floor of the hospital for transplant patients. Carissa was certainly hoping to go straight to 12 North, so we're hoping that will be the case. However, spending a few days in the TICU is still a possibility. We'll let you know once we've been informed where she is going after she gets out of recovery.
Thank you for your continued prayers. The Lord has protected Carissa during the course of the surgery, but it's likely that she will still have a lengthy recovery. Please pray that she will be protected from post-surgical complications including infections.
We will update further as more information becomes available.
I just spoke with my Dad who informed me that Carissa is now out of surgery! She has been out for about an hour already. From what we understand so far, they found far less adhesions than they expected, which made the surgery go much more quickly that we expected. So, that's good news. Kareem was also able to successfully place the j-tube.
Dr. Kareem did a biopsy of the stomach and duodenum. We are not certain yet regarding a biopsy of the small bowel, but it sounds like he may have been able to avoid doing the resection of the bowel for that biopsy - but we are not certain of that information. Kareem indicated that he examined a few other things more carefully as well while he was performing the surgery, but we don't yet fully know the details of any of these things.
Mom and Dad have not yet heard yet whether Carissa will be going to the Transplant ICU or if she will be headed to 12 North - the normal floor of the hospital for transplant patients. Carissa was certainly hoping to go straight to 12 North, so we're hoping that will be the case. However, spending a few days in the TICU is still a possibility. We'll let you know once we've been informed where she is going after she gets out of recovery.
Thank you for your continued prayers. The Lord has protected Carissa during the course of the surgery, but it's likely that she will still have a lengthy recovery. Please pray that she will be protected from post-surgical complications including infections.
We will update further as more information becomes available.
Update on Surgery
(Celeste posting, again...)
I just receive a call from Mom that she was just informed that the surgery didn't actually begin until 9:20 am. It is very common for us to receive mixed information during the course of the surgery, especially regarding when the surgery began and when it ends. With this much delayed start to the surgery, it will likely be sometime this afternoon until we have more information. I will update again as soon as we hear something else.
Please continue praying for Carissa during this surgery. As you know, she's been weak and any surgery is very risky for her. Pray for Dr. Kareem as he performs the surgery. As Carissa mentioned in yesterday's post, Kareem has back troubles that make it difficult for him to perform lengthy surgeries. However, he was insistent that he be the one to perform this surgery. We know that she is in the best possible human hands and pray that God's hands are guiding Kareem's.
Dad is on his way to Pittsburgh and should be arriving very soon to join Mom. Pray for his safe travel and for Mom and Dad while they wait for more updates.
We will provide more information as soon as it is available.
I just receive a call from Mom that she was just informed that the surgery didn't actually begin until 9:20 am. It is very common for us to receive mixed information during the course of the surgery, especially regarding when the surgery began and when it ends. With this much delayed start to the surgery, it will likely be sometime this afternoon until we have more information. I will update again as soon as we hear something else.
Please continue praying for Carissa during this surgery. As you know, she's been weak and any surgery is very risky for her. Pray for Dr. Kareem as he performs the surgery. As Carissa mentioned in yesterday's post, Kareem has back troubles that make it difficult for him to perform lengthy surgeries. However, he was insistent that he be the one to perform this surgery. We know that she is in the best possible human hands and pray that God's hands are guiding Kareem's.
Dad is on his way to Pittsburgh and should be arriving very soon to join Mom. Pray for his safe travel and for Mom and Dad while they wait for more updates.
We will provide more information as soon as it is available.
Carissa is in Surgery
This is Carissa's little sister, Celeste, just posting a very short update at this point.
Carissa is in surgery now. The surgery was originally planned to begin at 6:00 am. As is typical in these situations, the surgery was delayed and was rescheduled to begin at 7:15 am. Mom is in the surgical waiting area where she will only receive the most basic updates. However, this is an improvement over previous surgical experiences we have experienced. Carissa (and other patients) has been assigned a number. The number displays on a screen that lists her current status with the most basic information (in pre-op, in surgery, in recovery). Mom was told that the surgery is expected to last approximately 3 hours, but we know that can vary tremendously based on what Kareem finds. At the very earliest, we expect we may know more around lunch time.
Please continue to be praying for Carissa, Kareem and our family during this time.
We will update more as soon as more information is available.
Carissa is in surgery now. The surgery was originally planned to begin at 6:00 am. As is typical in these situations, the surgery was delayed and was rescheduled to begin at 7:15 am. Mom is in the surgical waiting area where she will only receive the most basic updates. However, this is an improvement over previous surgical experiences we have experienced. Carissa (and other patients) has been assigned a number. The number displays on a screen that lists her current status with the most basic information (in pre-op, in surgery, in recovery). Mom was told that the surgery is expected to last approximately 3 hours, but we know that can vary tremendously based on what Kareem finds. At the very earliest, we expect we may know more around lunch time.
Please continue to be praying for Carissa, Kareem and our family during this time.
We will update more as soon as more information is available.
Monday, August 30, 2010
Before the chop chop chop info
I'm scheduled to have surgery at 6 AM tomorrow. I am supposed to be at the hospital by 5 AM. UGH. Good thing I get to just go back to sleep! Of course, that's after a zillion questions that I can't remember the answers to that early in the morning and have already been asked 18 x...even just today!
My blood counts were really low today so they sent me to 7W for a unit and have put four more on reserve for tomorrow. I knew I was tired and weak, but figured it was all related to the craziness I brought on myself the past few weeks with DTP Awareness Week for G-PACT. They also did an EKG because of my history of torsades (cardiac arrest).
DTP Awareness Week was a great success, especially considering it's the first time we did it! We celebrated our nine year anniversary on August 23! Nine tough years of fighting, discouraging a lot of times, but encouraging a lot of times too...especially recently as we have been making a bit more progress and have had some pretty major accomplishments. We are only getting positive feedback from awareness week. We pulled off five successful webinars, a lot of awareness activities, a balloon release awareness event which was really cool as patients nationwide released balloons into the air with notes attached about DTP and where to go for more info. It's our hope that these will be found by people and they will get in touch with us saying they learned more. If nothing else, it shows that even though we are scattered throughout the nation, we can all stand in solidarity in fighting this through awareness.
We also held a raffle for a messenger bag and a tote bag, two different contests for people to win a "Gastroparesis Gourmet" cookbook published by G-PACT, people wrote their congresspeople, changed profile pics on Facebook, posted status updates and information to spread the word. Our Facebook fan page grew by well over 100 people in just a week! It was an incredible week and went much better than any of us could have ever imaged. People are so desperate and passionate and really want to do whatever they can to fight. A lot of people participated, and the impact was great as a number of people told me that they had friends who had never heard of DTP, and now they have joined our page to learn more about it. Donations and awareness band purchases have increased and people are continuing the efforts we started last week. One person wrote to tell me her congressperson even responded to her letter about the desire to help people with gastroparesis. We have hope!
Anyway, tomorrow I am going in for major surgery. It's pretty risky since I am immuno-suppressed and have SSSOOO many other health complications that factor in to the challenges and surgery recovery. I'm really stressed out and nervous about it, but I know it's time and the right thing to do. I have had an NJ tube for several months. This is a tube that was inserted into my nose in June and goes into my jejunum for tube feedings. I have been trying for over a year to balance my GP and dumping syndrome and have been unsuccessful. I was in really bad shape and barely surviving when finally my doctors at Hershey Med took notice and admitted me to the hospital and started me on NJ feedings. I feel better on the NJ feedings because they pass the pyloric sphincter in my stomach so I no longer experiencing severe dumping symptoms as long as I don't eat. Passing up the stomach completely also controls most GP symptoms. I do have some small bowel issues with some of my CIP coming back, but they are manageable at this point.
I hope to be able to consult with the metabolic doctors from Childrens Hospital who also deal with mitochondrial diseases while I am here to see if we can get to the root cause. There are a few things I can do to slow down the progression if we can figure it out. Kareem knows there is something very odd going on. The outward signs are being more and more apparent all the time. I'm struggling with mobility, short-term paralysis (sometimes full body paralysis for a few minutes, other times partial paralysis of hands and feet), more difficulty swallowing, which indicates some paralysis of my esophagus and difficulty urinating which I had before the transplant as well. My hands are different colors, they tingle and and I can't tell the difference between hot and cold sometimes, my feet turn blue, and other weird things. Because my mobility has gotten worse, I fall pretty frequently now and may end up back on my walker before long. Fortunately, no injuries yet...but it's getting risky as my osteoporosis has also worsened. He's supportive of my pursuit of mitochondrial disease because he is searching for why several of his CIP patients re-develop it after transplant. It would connect my factor V leiden (blood clotting problem), long QT (heart condition), weird response to low blood pressure (jerking like seizures), potassium dropping in spite of lots of IV potassium and supplements, and all kinds of things docs have never been able to explain or connect.
Before Kareem places the j-tube tomorrow, he has to make sure it can actually be done. He will be doing exploratory surgery first to check out my entire GI tract and look for anything that might be causing my problems. Suspecting some of them are related to adhesions (scar tissue from so many surgeries) he will do a lot of cleanup work and clear those out. If everything looks ok at that point, he will put in the tube. In addition to all of this, he may decide to do a full thickness muscle biopsy to see if I am in chronic rejection. If this is the case, he will have to remove a portion of my small bowel and it would require resection. Hopefully, he will be able to tell just by looking and not have to take that step. I am hopeful that by clearing up adhesions, it will improve some of my symptoms so perhaps I can eat a bit better without things getting stuck or getting obstructed at times. I don't want to be on this tube forever. I just hope I don't wake up to find out it couldn't even be placed! But, I am dealing with the best surgeon in the entire world...and I'm not biased, because multi-visceral transplants are considered to be the most difficult surgeries being performed today and he is the pioneer and does the majority in the world. He has saved so many lives in situations where any other doctor would have given up or not known what to do. I'm in excellent hands.
Please pray as I go through this, not only for me, but for my mom and for strength as she helps me get around for a while and helps me out. Pray for Kareem as he does it. He has back problems that make doing surgeries difficult for him. But, he doesn't want anyone else to touch me, even Dr. Costa who did the last very major surgery on me a couple of years ago. That's an indication of how big of a deal this could be, but I'm so glad he's doing it. Pray for strength for me. I'm pretty weak so recovery may be difficult. Plus, I'm frustrated because I feel like I'm going backwards healthwise. This isn't the kind of surgery you want because it doesn't improve much down the road. I'll feel better nutritionally and won't have my tube clogged up all the time, but it doesn't fix anything. I still won't be able to eat, unless the adhesion cleanup helps. But it won't take care of the dumping. Matbe he'll find something else while in there that he can actually fix.
I don't know what to expect. It's impossible to know how long recovery will be. It depends what he finds when he gets in there. I may or may not be in the TICU (transplant ICU) for a few days, depending how extensive it is and how I do. I hate the TICU! It's the most miserable experience, so I hope to go straight to 12 North. That's about all I know right now. I'll be in surgery before most of you wake up (or before you even read this) as long as a transplant doesn't come in for another patient overnight. My parents will keep this blog updated until I am back on and able to post myself.
Reminder to not send me live flowers or plants. I don't expect anything, but I don't want anybody to put out money for something I am not allowed to have as a transplant patient. They are dangerous for me and will get snagged at the nurses station.
Facebook friends- please remember that I don't want to receive notifications, gifts, hugs, or anything from games or applications while I am gone. It's just too stressful to try to catch up or go through and delete everything after being gone for a while. I appreciate messages to my wall and responses to status updates though. That's ok. I hope DTPers will continue to connect to each other through my wall.
People who follow G-PACT, please contact beenerc@g-pact.org with questions and she will direct you to the appropriate team member to assist you with your questions and concerns.
Thanks for your support, and I will post again as soon as I am able.
My blood counts were really low today so they sent me to 7W for a unit and have put four more on reserve for tomorrow. I knew I was tired and weak, but figured it was all related to the craziness I brought on myself the past few weeks with DTP Awareness Week for G-PACT. They also did an EKG because of my history of torsades (cardiac arrest).
DTP Awareness Week was a great success, especially considering it's the first time we did it! We celebrated our nine year anniversary on August 23! Nine tough years of fighting, discouraging a lot of times, but encouraging a lot of times too...especially recently as we have been making a bit more progress and have had some pretty major accomplishments. We are only getting positive feedback from awareness week. We pulled off five successful webinars, a lot of awareness activities, a balloon release awareness event which was really cool as patients nationwide released balloons into the air with notes attached about DTP and where to go for more info. It's our hope that these will be found by people and they will get in touch with us saying they learned more. If nothing else, it shows that even though we are scattered throughout the nation, we can all stand in solidarity in fighting this through awareness.
We also held a raffle for a messenger bag and a tote bag, two different contests for people to win a "Gastroparesis Gourmet" cookbook published by G-PACT, people wrote their congresspeople, changed profile pics on Facebook, posted status updates and information to spread the word. Our Facebook fan page grew by well over 100 people in just a week! It was an incredible week and went much better than any of us could have ever imaged. People are so desperate and passionate and really want to do whatever they can to fight. A lot of people participated, and the impact was great as a number of people told me that they had friends who had never heard of DTP, and now they have joined our page to learn more about it. Donations and awareness band purchases have increased and people are continuing the efforts we started last week. One person wrote to tell me her congressperson even responded to her letter about the desire to help people with gastroparesis. We have hope!
Anyway, tomorrow I am going in for major surgery. It's pretty risky since I am immuno-suppressed and have SSSOOO many other health complications that factor in to the challenges and surgery recovery. I'm really stressed out and nervous about it, but I know it's time and the right thing to do. I have had an NJ tube for several months. This is a tube that was inserted into my nose in June and goes into my jejunum for tube feedings. I have been trying for over a year to balance my GP and dumping syndrome and have been unsuccessful. I was in really bad shape and barely surviving when finally my doctors at Hershey Med took notice and admitted me to the hospital and started me on NJ feedings. I feel better on the NJ feedings because they pass the pyloric sphincter in my stomach so I no longer experiencing severe dumping symptoms as long as I don't eat. Passing up the stomach completely also controls most GP symptoms. I do have some small bowel issues with some of my CIP coming back, but they are manageable at this point.
I hope to be able to consult with the metabolic doctors from Childrens Hospital who also deal with mitochondrial diseases while I am here to see if we can get to the root cause. There are a few things I can do to slow down the progression if we can figure it out. Kareem knows there is something very odd going on. The outward signs are being more and more apparent all the time. I'm struggling with mobility, short-term paralysis (sometimes full body paralysis for a few minutes, other times partial paralysis of hands and feet), more difficulty swallowing, which indicates some paralysis of my esophagus and difficulty urinating which I had before the transplant as well. My hands are different colors, they tingle and and I can't tell the difference between hot and cold sometimes, my feet turn blue, and other weird things. Because my mobility has gotten worse, I fall pretty frequently now and may end up back on my walker before long. Fortunately, no injuries yet...but it's getting risky as my osteoporosis has also worsened. He's supportive of my pursuit of mitochondrial disease because he is searching for why several of his CIP patients re-develop it after transplant. It would connect my factor V leiden (blood clotting problem), long QT (heart condition), weird response to low blood pressure (jerking like seizures), potassium dropping in spite of lots of IV potassium and supplements, and all kinds of things docs have never been able to explain or connect.
Before Kareem places the j-tube tomorrow, he has to make sure it can actually be done. He will be doing exploratory surgery first to check out my entire GI tract and look for anything that might be causing my problems. Suspecting some of them are related to adhesions (scar tissue from so many surgeries) he will do a lot of cleanup work and clear those out. If everything looks ok at that point, he will put in the tube. In addition to all of this, he may decide to do a full thickness muscle biopsy to see if I am in chronic rejection. If this is the case, he will have to remove a portion of my small bowel and it would require resection. Hopefully, he will be able to tell just by looking and not have to take that step. I am hopeful that by clearing up adhesions, it will improve some of my symptoms so perhaps I can eat a bit better without things getting stuck or getting obstructed at times. I don't want to be on this tube forever. I just hope I don't wake up to find out it couldn't even be placed! But, I am dealing with the best surgeon in the entire world...and I'm not biased, because multi-visceral transplants are considered to be the most difficult surgeries being performed today and he is the pioneer and does the majority in the world. He has saved so many lives in situations where any other doctor would have given up or not known what to do. I'm in excellent hands.
Please pray as I go through this, not only for me, but for my mom and for strength as she helps me get around for a while and helps me out. Pray for Kareem as he does it. He has back problems that make doing surgeries difficult for him. But, he doesn't want anyone else to touch me, even Dr. Costa who did the last very major surgery on me a couple of years ago. That's an indication of how big of a deal this could be, but I'm so glad he's doing it. Pray for strength for me. I'm pretty weak so recovery may be difficult. Plus, I'm frustrated because I feel like I'm going backwards healthwise. This isn't the kind of surgery you want because it doesn't improve much down the road. I'll feel better nutritionally and won't have my tube clogged up all the time, but it doesn't fix anything. I still won't be able to eat, unless the adhesion cleanup helps. But it won't take care of the dumping. Matbe he'll find something else while in there that he can actually fix.
I don't know what to expect. It's impossible to know how long recovery will be. It depends what he finds when he gets in there. I may or may not be in the TICU (transplant ICU) for a few days, depending how extensive it is and how I do. I hate the TICU! It's the most miserable experience, so I hope to go straight to 12 North. That's about all I know right now. I'll be in surgery before most of you wake up (or before you even read this) as long as a transplant doesn't come in for another patient overnight. My parents will keep this blog updated until I am back on and able to post myself.
Reminder to not send me live flowers or plants. I don't expect anything, but I don't want anybody to put out money for something I am not allowed to have as a transplant patient. They are dangerous for me and will get snagged at the nurses station.
Facebook friends- please remember that I don't want to receive notifications, gifts, hugs, or anything from games or applications while I am gone. It's just too stressful to try to catch up or go through and delete everything after being gone for a while. I appreciate messages to my wall and responses to status updates though. That's ok. I hope DTPers will continue to connect to each other through my wall.
People who follow G-PACT, please contact beenerc@g-pact.org with questions and she will direct you to the appropriate team member to assist you with your questions and concerns.
Thanks for your support, and I will post again as soon as I am able.
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