A lot has happened since my last blog. I have since become a long-term elephant! I was re-admitted to Hershey Med just six days after discharge the weekend before. I never really felt like much was accomplished during the first nine day stay. I went to my doctor the following Friday and I was really weak, pale, thin, and dry. She admitted me with failure to thrive and instructions to have a GI consult and place another NJ for me to go home with. This time I was even more frustrated because I had to go back knowing that I had pretty much wasted nine days the week before and was feeling no better. But, I was also hopeful that they would be more thorough and that by keeping the NJ in for a while longer would give me a better chance of feeling better in the long run.
I was in the hospital for eight days, many of which were really tough as I felt from almost the beginning that I was in quite a fight to get the doctors to grasp what I am dealing with and all the various complex issues I am aware of that needed to be considered. I was worried that my concerns weren't being addressed. I know that these doctors don't know me because I have dealt with Pittsburgh so much since 2004, and only my doctors pre-transplant know of the unusual complications I develop, but I was flustered that they didn't seem to grasp that I am not the typical patient and my body does not react normally to anything! Finally, I felt like they started to listen once my labs started showing some funky results, pretty much like I told them they would! I only wish I got paid what they do for the work that I do and my out-of-the box thinking on how to treat myself! HA!
After about three days on tube feeds through the NJ I started to show signs of significant "refeeding syndrome." Refeeding syndrome is what happens when the body has been starving for a long time and is starting to receive better nutrition. My phosphorous dropped pretty low. This happens to me almost every time I am restarted on nutritional support of any kind. It's actually a good sign because it means that my body is absorbing the increased nutrition, but it slows the process of feeding down because it can also be dangerous to refeed too quickly. Over the course of the week, my potassium and magnesium fluctuated, something else I told them would happen, even with high rates of IV replenishment! It's part of my conditions that my doctors have been baffled by...they've never seen a patient drop potassium like I do w/o kidney issues, w/o severe diarrhea, and while receiving high loads via IV. It's one reason I am pursuing Andersen's-Tawil syndrome (a Hypokalemic periodic paralysis) as part of a mitochondrial disease...dropping potassium like that is a norm!
My feedings were gradually increased and a GI consult was made. I went home on a tube feeding rate not quite satisfactory, but it was more than I had been getting in nutrition when admitted. I've been working on increasing the rate on my own at home. My success has been limited, but I am up 5 cc's an hour...I think, although occasionally I get sick and have to slow things down. They would like me to get up to a total of 30 cc's/hour, but I'm on 15-20 right now and not sure if I will be able to go much higher. I'm still getting close to 1,000 calories a day over the course of 24 hours because I am on Nutren 2.0 which is thicker than the typical formula used and has 500 calories per 8 oz. It's been a little bit of an adjustment to be back on 24 hour nutrition, but not as much as I thought it would be. I was used to my non-backpack carrying days, but now I pretty much cart it around with me again without even thinking much about it!
I have noticed that it seems to be helping me some. I am still very symptomatic when I eat, but that's not new and certainly tube feedings don't help the underlying problems, just help with one of the complications of having them- it's no worse than it was. It's giving me the nutrition I need without the pressures of having to eat and knowing I will just get sick and lose most of it anyway. So, the pressure is off to try to force foods when I am not feeling well. It's keeping me hydrated, and I do have a bit more energy. Plus, it gives me a chance to have better control over my nausea by giving me a way to get liquid phenergan directly into my small bowel where it is more quickly and easily absorbed. I am pretty anemic right now, almost to transfusion levels, and I DO feel symptomatic from that, but not as much as I could if not for the nutrition I am receiving. I'm having trouble getting up stairs...my legs get weak, I get short of breath, I have almost fallen a lot because of weakness, getting up in the morning is tough, and I am tired out by 7 PM, but I have more energy for more hours during the day overall. When we get my counts back up, be it through transfusion or other means, I am sure I will feel a whole lot better too!
On Monday, my tube got clogged! I joke about my tube as being my elephant trunk. My mom and I tried for a total of 3 hours to unclog it using all the options we knew of, but were unsuccessful. On Tuesday I had an appointment with internal med, but they said they couldn't do anything so I had to go to the ED. They put me in total isolation because of the immune-suppression and I was placed in a psych room with nothing in it but a fixed bed and mattress! No TV, no electrical outlets for my phone to charge, no people to watch, padded walls, high ceilings...it was REALLY freaky and I was in there for about 7 hours as they used "clog zapper" to try to unclog my nose! I tell people now to never complain of a clogged nose to me because I will not be sympathetic! I'll laugh, and hand them clog zapper and diet soda! The doctor came in before the second attempt and informed me that if they could not get my tube unclogged, I'd have to be admitted for the placement of another one. I wasn't happy about this feeling like it is one of the easier procedures I go through and should definitely be do-able in the ED! Finally, he told me that in a "normal" person he would be more comfortable doing it, but not in someone with my history. When I told him the nurses on the floor placed it, he did more research and decided he would try to put one in himself. After a few more hours and three attempts and x-rays later, finally it was over and they let me go home...but not without a little mishap on the way out! As I was leaving I started to bleed very quickly from one of my IV sites and had to go back to get it stopped. My blood has been extra thin lately, and i think it's because they have been giving me Fragmin shots in the hospital as a pre-caution because of my factor V (blood clotting problem) and the fragmin doesn't seem to leave my system very quickly. So, after an extra half hour detour, I finally headed home about 1 AM.
On Wednesday morning I had an appointment with my gastroenterologist. We discussed the tube feedings and I told them they have been helpful and I haven't been getting as sick. We discussed reasons why this might be the case, and what to do long term. As expected, he has recommended the surgical placement of a j-tube to replace the NJ. I had planned on using the NJ as long as possible before making a decision, but he feels like I should know within a week if it is helping for certain and has recommended that I have one placed much sooner. I'm not quite ready to approach my Pittsburgh doctors with this yet or even make a definitive decision myself on it, but I do feel better and I know that I wouldn't without the help of these feedings. I'd still be sick all the time and struggling to eat. My docs know that if I don't stay on tube feedings that I will just be in the hospital every week at this point and that's not acceptable and definitely not a way to live!
It's tough for me to think about going back to a j-tube, but at the same time if it helps me feel stronger I think I'm prepared for it. I can't imagine going through surgery within the next couple of weeks...while I am prepared for it, I'm not quite ready...if that makes sense?? I don't want any doctor but Costa or Kareem to mess with my organs and I'm not sure how on board they will be for this. Besides that, any surgery is very risky for me and could create complications due to inability to heal, high risk of infection, and bowel obstructions. I think it could take a little while to get things in motion on their end...so, well, I guess I SHOULD get started making plans...
After I went to my GI appointment, they drew 11 tubes of blood. Since those labs showed anemia on Wed, who knows what my counts will be on Monday when rechecked. In spite of that, I surprised myself by having enough spunk to make it to do a couple of hours of volunteer work at LCBC and hold an all volunteer board meeting on Wednesday evening for G-PACT.
The volunteer meeting was productive. We discussed a lot of ideas and it was the first ever all volunteer meeting we have had. It gave people a chance to connect and actually talk to people and discuss ideas over the phone. These meetings always tire me out, but I did well, especially considering the long day and late night I had on Tuesday! I took Thursday and devoted it to catching up on my G-PACT work and on Friday I helped out at LCBC again. Today (well, yesterday...Saturday...) I went to the LCBC kidMin picnic and that was a lot of fun! Today I plan to return to the Wheelhouse for the first time in a while and hopefully make it to Life group in the evening. So, in spite of it all, I'm still living and loving life...elephant nose and all!
My LONG time prayers were answered this week when a professional web designer offered to redesign our website and include an entire social network dedicated to GP and CIP, blogs, mobile content, and so many other very cool interactive features I don't have the experience to work on or the time to want to try to learn! He has GP and has offered his time for free because it will really help us out! Now anyone can add content, not just me, so the website will be a lot more current now and provide so many features which can really take us to the next level. It wasn't a hard decision for me to agree to let him do it! I have been looking for someone of his caliber to work on our site for a really long time! I can't keep up with ours in addition to all the administrative work I have and other life activities!
At the picnic on Saturday, one of my friends and motorhead, Michael Johnson, pulled the top off of Blue lightning for me! Talk about a blast coming home! I have been waiting for MONTHS for this day! I'm so excited! Summer can now begin...a month later than usual for me, but at least it is time for a couple months of fun in the sun! :)
I'm going to close here now, but did want to make one request...if you are on Facebook, please go to the Chase Community Giving Challenges page and "like" it. Then please vote for G-PACT! We are in the running for $20 K and every vote is crucial to make sure we don't lose out on these funds! We can do so much with that money! Please take a few minutes of your time to vote for us! If you are a "friend" of mine, please check out my notes for more info on it!
Off to bed I must go...it will be a long, tiring day today...Sunday if I don't get off here...like...uuummm...a few hours ago! Sigh...oh well...I'll make up for it sometime. I can't WAIT to return to the Wheelhouse and hang with my kids! What's funny is I dropped by the WH last week to say hey. The kids were excited, but then one of the twins (who is a mess!!!) stopped and blurted out "what happened to you?" I started to say that I was sick and I had this in my nose to help me eat (I'm going to go with the whole elephant thing with them...) and Melissa jumped in and said "this is what happens when you don't eat your vegetables!" This kid got a look on his face like he didn't know whether to believe her or not...It was really really funny. We were still laughing about it on Monday!
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