Tuesday, April 21, 2009

ID and no ID of cause of GP

I went in this afternoon for my weekly Aranesp injection. No quirks there. That all went smoothly. Then I headed over to the physicians center to see Infectious Diseases. The doctor saw me in the ER a couple weeks ago when I was there getting two units of blood. On my way over, my transplant coordinator called and left a message because I couldn't answer the phone at the time.

I listened to the message while sitting in the room with the ID doctor. My transplants doctor's recommendation is to start me on IV caspofungen for five days to treat the thrush. I gave the phone to the ID doctor and she and my transplant coordinator had a very good conversation about the thrush, other infectious issues, the low grade fevers, and what has been done thus far. They swapped phone numbers so I am comfortable they will keep in touch very well.

I have no veins for a central line (long term IV line) which I really need in order to get this IV drug at home. The ID doc wants to move things along, as do my transplant docs of course before it spreads, so she is working on trying to get it set up for home health care to come out to put in a peripheral line every day for me to get the caspofungen. Otherwise, I may have to go to the infusion room at HMC every day to have it done. She wasn't sure if either was possible to set up, but she's going to try. Life would be so much simpler if I could just get a central line and do it from home by myself like I have in the past, but I'll deal with it however it goes.

The problem is, I am allergic to caspofungen so I have to be pre-medicated with IV benadryl. That throws me for a loop and knocks me out. It didn't used to because I had developed a tolerance to it, but since I am not on it so much anymore, it affects me more again. For that reason, I would not be able to drive myself to and from the med center every day. So, hopefully something will work out for me to be able to do it at home, even if it means getting a new IV every day since I can't keep in a peripheral line at home overnight. She also did a chest x-ray because of the cough and that was fine. She said keep an eye on it to make sure it's not getting worse or changing at all. The GP makes me at risk for aspiration pneumonia which I was already at high risk for because of a swallowing disorder I have. So, since the endo showed so much food retention in my belly accompanied by an unexplained cough, that's a pretty big concern. Hopefully it's just a cold that will pass and won't be aggravated by aspirating.

As far as the delayed emptying in my stomach (aka gastroparesis) that wasn't addressed today and won't be with ID. It's something that will require long-term management and considering treatment options, if possible and necessary. The question is not whether I have delayed emptying or not, the question is what is the cause again at this point. In some ways we hope it is meds that can be adjusted, but even that's not a good option. It would be preferred though.

People have wondered at times why I am so adamant about finding the underlying cause for all of my various issues and this is exactly why. I've always been aware that since the underlying cause has never been found that it could just come back and affect my new organs. I've been told that even if they did find the cause, there's nothing they could do or I'm already being treated as I would be for the potential conditions I have pursued. But I just need to know. If there is anything that CAN be done, why not give it a shot? I am in need of an explanation that ties everything together under one name. I just don't believe that one person can have so many different issues without a common connection.

I thank so many of you who have also been misunderstood and misdiagnosed while suffering from so many seemingly unrelated ailments. You've helped me make sense of so much of what has been going on in my body and brought me closer to some things that I think are pointing me in the right direction. I hope that at some point I too will be able to connect the dots.

I'll keep you posted once I know more. I should receive a call from home health care sometime on Wednesday and see if something can be set up to do that infusion at home.

Love to all,

Monday, April 20, 2009

Dumping and not dumping...and thrushing

In short, I have thrush again. No real surprise there...I mean, I wasn't really expecting it, but that is one of the main reasons I had the test done now. I have an appointment with infectious diseases tomorrow (Tuesday) about why I keep getting infections and since I have been prone to thrush in the past they wanted me to check into that before my appointment. That probably explains my recent cough, chest discomfort and sore throat.

Anyway, while down in my stomach looking around, they also found a moderate amount of undigested food left in my stomach even though I hadn't eaten since 2:00 yesterday (Sunday) afternoon. Even that was not very much because I didn't have an appetite yesterday since I was coughing and slept all day! The test was performed around 3:30 this afternoon. With that much food left in my gut after 26 hours it's pretty much conclusive of a re-occurrence of gastroparesis, one of the two conditions I had in the first place leading to the transplant. He doesn't think it's obstruction/blockage related, more on the motility side again. It's complicated by the fact that I also have dumping syndrome, so I'm not sure how we are going to treat one without aggravating the other...but it could potentially explain some recent things.

The GI doc today didn't want to start me on anything for the thrush or go into much detail on the GP aspect because he's never seen me before and obviously that's something transplant will need to deal with anyway. So, I will call my transplant coordinator Tuesday morning to see how to treat the thrush. They are very aggressive in transplant patients because once we get it, it's very hard to get rid of so oral meds have never been prescribed to treat it before, plus I'm already on one that is supposed to prevent it (although all transplant patients know it doesn't work anyway!!!).

As far as the GP goes, it's a matter of learning to manage things again through diet and meds...which is complicated since the two conditions completely work against each other. But, I'll deal with it. I've always known there was a possibility it could return because we don't know what caused it in the first place, but just never REALLY have let myself think that way and never expected it so soon or to be considered "moderate." My hope is that my transplant doc will know how to modify my meds and other treatments so we can keep both conditions under control better than previously. So, while discouraging, I am hopeful that my amazing transplant team will know what to do. Hopefully, I will have a better idea tomorrow. I know they will tell me what needs to be done about the thrush tomorrow because they will jump right on it, but hopefully over time they'll have ideas on managing the returning gastroparesis along with the dumping syndrome. I still feel blessed to be doing as well as I am. The doctors apparently commented while doing the endo on how good my organs look for someone who has been through as much as I have. Thank God and the Pittsburgh transplant team for that!

Having said that, I'm going to eat my orange popsicle to soothe my sore throat before it melts! (the popsicle, not the throat!)

Love to all,

Thursday, April 16, 2009

Inner beauty and strength

A friend send me the link to this video of Susan Boyle, Britain's 2009 You've Got Talent Singer. http://www.youtube.com/watch?v=9z0h1NNk1Ik. She is an example of how outside appearance doesn't say anything about what is on the inside. Although initially viewed as being incapable of singing due simply because she is not outwardly beautiful by many people's standards, it is clear she not only did she captivate Simon and the other judges, but stunned the audience members who were so disgusted by her outward appearance in the first place. Our society places too much emphasis on looks when considering ability, potential, intelligence, and work ethic.

Living in a world where I am surrounded by chronically ill and disabled people, and being one myself, I personally understand the perceptions that come with not appearing as one should, according to society, in order to be successful. At times, because of my size, limitations, and physical weaknesses, I am looked upon as incapable of being able to accomplish very much or make much of an impact so not much is entrusted to me without my own personal pursuit of something. This is true of my friends and colleagues who have health issues, many much more outwardly blatant than mine. But if you truly look beyond outward appearance, you often find more someone more beautiful than anyone you have ever seen before. Those who face certain limitations and obstacles in life are often the one's who have the most to contribute and are the most beautiful. Some of the greatest success stories come from those who have been socially outcast or looked upon as being weaker than others and incapable of contributing much, if anything, to the world.

Today I was at the grocery store and ran into a guy working there who completely made my day more than anyone else there. He's clearly somewhat mentally challenged, but he was so happy to do what he was doing and so proud of his work. Even though his only job is to collect the baskets from the carts outside and bring them in, he boldly stated to me as I was walking out the door "look at these baskets, don't they look so much better!" after having spent a good deal of time straightening them out and making sure there were none out of place. As we walked out of the store, my Jeep alarm, which is finicky, started to sound from a distance as another car drove by. He laughed, shook his head, and said "it's still going off. Annoying sound!" When I informed him that it was mine making all that noise, he laughed again and said "it's an annoying noise, isn't it?"

He then ran off to grab another cluster of baskets to take into the store. I imagine that no "able-bodied" person according to our society's standards would do half as good of a job or be nearly as proud of the finished product as he was and be so happy just to have the opportunity to be there doing it! In many instances, he has probably been blown off by others as not having the ability to help based on his outward appearance, but I know if I had requested his help in getting my groceries into the Jeep he would have happily taken me up on it and done better than anyone else who has ever done it. He has probably been seen in the past as being unable to contribute much to the world because of his limitations, yet he certainly made a big impact on my day! If not just the inspiration that came from the pride he took in his work which some would see as insufficient or unimportant, his whole attitude and friendliness was captivating.