After a week or so of slow and steady progress with the GVHD, I started to feel a plateau in the progress. What the staff was looking for and what I was looking for were a somewhat opposing forces. If fact, I thought that having more "output" signified that we were moving in the right direction, particularly because it had all been diarrhea and we were starting to get some of the formed poop (Nothing like starting the morning off with some detailed descriptions... ha). But alas, the volume is NOT what they want to see. They want to see that things progress to be and less volume. More equals a higher chance for some infection in the gut which could be interfering with the overall progress.
I had been headed down a nice path of adding one food selection every day to my diet which had us all encouraged. I had added chicken (more than just the broth), fruit, potato's, and was working on ordering a grilled cheese when the staff decided that enough was enough and we were going to scale back on all food and resume the NPO died (Nothing by Mouth). That decision hit me and Lynn pretty hard as we sat here that morning. I guess we aren't completely surprised by anything that that comes down the path anymore, after all it has been over 2 months here and another 3 prior to Karmanos. But boy, when you are cruising along, even the smallest change can affect the treatment more dramatically than you might think. Its as if 1 day = 3 days (and generally not on acceleration... its a regression) So, since the 7th (last posting) or so, we've seen my energy level go up to where we would get a little excited about getting some time line for heading home. But it was a little something...
I think we are learning to bundle the time together in weekly fractions and then assess how they should be judged, trying to do it day by day just doesn't cut the mustard (yet another food that would go well with a corned beef on rye). So for the week, each day has been it own little adventure, and if you hear small bits and pieces, its not really a true recap.
Health wise, we know the goal is to get the diarrhea down in volume, which will then be trigger for more people food (not the feed bag I am using now) and once that process starts, we can "look" at dates, but its a circular reference at times as that one setback scares the entire "look ahead"....
Ahhhhhhh.... the new Biopsy of the Upper and Lower abdomen . Looks like this one will take the place of the old Bone Marrow Biopsy. (I hope not). I only made the correlation as I have now have had 3 colon biopsies since January 7. I had planned on posting this update earlier in the week, but felt like it belonged in this update if I could get some answers. The positives are that there is no sign of the GVHD in the colon and or liver. There were some ulcers spotted on the duodenum and those are being biopsied, but the Doctors are continuing to believe that it could be unrelated to the GVHD and just a very tender spot that will require kid gloves in recovery (postponing any tacos', I'm sure).
The results were confirmed and there is no GVHD in the ulcers and those will be slow to heal on their own, and again, it just takes time. That brings it all full circle back to the gut and its nasty disposition at times, which apparently I have brought on some of myself by eating too much hard candy (despite being told not to by my doctor and caretaker.) they are worried about in the gut except for what is being treated at this time. The dietary restrictions, whether it be liquids only, or the BRATE (adding a few things to the liquid) are there for a reason, and my pig head will need to do a better job of letting them heal.
The big news was that I was able to get outside for about 20 minutes on THURS and wow what a feeling. If you haven't been outside for 8-10 weeks, it's a pretty powerful feeling, just to look around and appreciate the surroundings. Yes, I know its the "D", but it's home and gives you another reason for wanting to sit on my own porch instead of the hospital concrete slab.
Now its Saturday, and the 2nd straight weekend without football. Who knew we could manage, the blasphemy! Good for the Packers, I guess. Now the Kool-aid gets mixed and combined with the Lions hot streak at the end of the season... scalpers paradise!
Can we dare say Winter is almost over (and I can say I missed it?)
Last, I will try to keep updating, seems like longer and longer between posts I know. Again, some of the delay means things are status quot, and other parts of the delay may mean we haven't had such a hot couple days and are laying low until things get better, and they do, it just takes time. And m
Thanks for all the thoughts and prayers, they keep us on our toes,
Saturday, February 19, 2011
Monday, February 7, 2011
Roid Rage and Feeling Pretty Damn Good
Since we last visited a week or so ago, health systems on board the Shoop Endeavor have gradually gotten a lot better. Saying this from the patient perspective seems to mean just as much as it does from the doctor(s) at times. They mean it sincerely. During the daily rounds, which are broken into 2 parts, much of the discussion revolves around what the patient is feeling. This part of the meeting is taking place with the patient (me) and assessing the physical aspects of the past 24 hours. The obvious (stool volume, eating anything, cramps, pain, walking, swelling, etc.) are covered and discussed with the Physicians Assistant or Nurse Practitioner. We recognize that more and more of the assessment job falls under their jurisdiction and the Doctors make the final recommendations as far as ongoing treatment and medication adjustments.
I think we have a much better understanding (or comfort level) about how the process is working and are learning to ask the right questions to the right people to gain the knowledge we need to feel more comfortable. It doesn't eliminate dealing with some of the misfit personalities that come through on different rotations all the time, but it might allow me to have some more subtle fun with them all learning how the process works:
Every 2 weeks, the attending physicians make their two weeks of rounds with the patients (weekends too!) as part of the daily routine. Included it the rounding team are the Doctors, the PA (or nurse Practitioner), as well as an interns as needed, This weeks chapter of attending physician is Dr. Ayers, fitting the timidly motherly profile. It took a couple days for her to come out of her shell at the prodding of the nurse and start giving some info. Or, it could be the fact that the patient, his wife, his mother and father are all in the room watching the every move and ready to ask questions at the drop of a dime. Hell, I get intimidated by that many Shoops in one area.. But seriously, once we had a better idea of how the process needs to work and adapt to the doctor (god forbid, adjusting to the patient) we are more comfortable.
Wondering about the Roid Rage? Well, after I started feeling much a week or so ago (call in the last week of Jan), it could be directly correlated as to when they hit me with the high doses of steroids to shock the system. The trial an error with some of the other drugs be damned, once the GVHD started toward the liver, the roids were the solution and have been in the past as well. Needless to say, they have done their job, but not without the lovely side effects that include:
But the good news is that comparatively speaking, I do feel very good since any point when I checked back in the hospital on Jan 7. Getting up and walking has been relatively easy to accomplish my laps until the past day or so, and they have released me to the newest diet fad, called the B.R.A.T. (It beats the clear liquid only I was on for 5 weeks). As the GVHD is treated and actually reduced, a new world starts to open up. At one point, I was considered Stage 4 GVHD and we are now showing a slight Stage 1 (which has to do with the amount of stool volume measured every 24 hours). Unfortunately, that is the volume that needs to be addressed before moving forward with more advanced food. Ahhhh the B.R.A.T. diet, it adds to the clear liquid the following: bananas, rice, applesauce, and decaf tea. Wooooohoooooooo! But its progress.
"So Shoop, what is the story, when are you going home?" We know it won't be this week, but are hopeful in the next couple. The underlying problem is that reeling the body back in from such a serious episode of the GVHD is such a struggle. The Doctors (and now the patients / families) have a better understanding of the serious nature that we will take the extra time to get it right, as we should.
I do have tenure on the floor having checked in on December 8 and only missing 3 days. Unfortunately, one of the really cool people I met in December is back again as well. I think we remind one another of ourselves. We both wanted out of here the 1st time so bad that we pushed the envelope to make it happen. We now come to see that we both have all the same sh^t going on and it all needs to be corrected. So god bless Gladys and I as we fight through the massive diarrhea, nausea, general pain and the newest (for me) the massive skin rash.
In the past 4-6 days the biggest frustration has been watching my whole lower body puff up like and oompa loompa. Its all a result of roids and the lack of being able to get rid of the water weight, and moving around is a big challenge. They say to expect to lose the skin... I'll wait and not anticipate on that one. (update 2-9-11, skin is recovering nicely, still have swelling, but all in all, pretty good)
But, I wanted to get the info out there on this blog about what has been happening. All in all, this is the first one which has a lot of positive momentum, and that's how we are looking at it. If I get to move up a diet, you all will be the 1st to know. Keep the support coming, love to see the links to those favorites... I have to say the list about the food network hosts got a lot of people howling around here.
I think we have a much better understanding (or comfort level) about how the process is working and are learning to ask the right questions to the right people to gain the knowledge we need to feel more comfortable. It doesn't eliminate dealing with some of the misfit personalities that come through on different rotations all the time, but it might allow me to have some more subtle fun with them all learning how the process works:
Every 2 weeks, the attending physicians make their two weeks of rounds with the patients (weekends too!) as part of the daily routine. Included it the rounding team are the Doctors, the PA (or nurse Practitioner), as well as an interns as needed, This weeks chapter of attending physician is Dr. Ayers, fitting the timidly motherly profile. It took a couple days for her to come out of her shell at the prodding of the nurse and start giving some info. Or, it could be the fact that the patient, his wife, his mother and father are all in the room watching the every move and ready to ask questions at the drop of a dime. Hell, I get intimidated by that many Shoops in one area.. But seriously, once we had a better idea of how the process needs to work and adapt to the doctor (god forbid, adjusting to the patient) we are more comfortable.
Wondering about the Roid Rage? Well, after I started feeling much a week or so ago (call in the last week of Jan), it could be directly correlated as to when they hit me with the high doses of steroids to shock the system. The trial an error with some of the other drugs be damned, once the GVHD started toward the liver, the roids were the solution and have been in the past as well. Needless to say, they have done their job, but not without the lovely side effects that include:
- Irritable behavior (Lynn and Mom took the brunt of that)
- Water retention (almost immediately starts)
- Major swelling (which must be controlled with other drugs)
- Hypertension (lack of sleep possible)
- Muscle decay (they make sure you are walking and remaining active). The roids go after weak spots in muscles (as well as the GVHD).
But the good news is that comparatively speaking, I do feel very good since any point when I checked back in the hospital on Jan 7. Getting up and walking has been relatively easy to accomplish my laps until the past day or so, and they have released me to the newest diet fad, called the B.R.A.T. (It beats the clear liquid only I was on for 5 weeks). As the GVHD is treated and actually reduced, a new world starts to open up. At one point, I was considered Stage 4 GVHD and we are now showing a slight Stage 1 (which has to do with the amount of stool volume measured every 24 hours). Unfortunately, that is the volume that needs to be addressed before moving forward with more advanced food. Ahhhh the B.R.A.T. diet, it adds to the clear liquid the following: bananas, rice, applesauce, and decaf tea. Wooooohoooooooo! But its progress.
"So Shoop, what is the story, when are you going home?" We know it won't be this week, but are hopeful in the next couple. The underlying problem is that reeling the body back in from such a serious episode of the GVHD is such a struggle. The Doctors (and now the patients / families) have a better understanding of the serious nature that we will take the extra time to get it right, as we should.
I do have tenure on the floor having checked in on December 8 and only missing 3 days. Unfortunately, one of the really cool people I met in December is back again as well. I think we remind one another of ourselves. We both wanted out of here the 1st time so bad that we pushed the envelope to make it happen. We now come to see that we both have all the same sh^t going on and it all needs to be corrected. So god bless Gladys and I as we fight through the massive diarrhea, nausea, general pain and the newest (for me) the massive skin rash.
In the past 4-6 days the biggest frustration has been watching my whole lower body puff up like and oompa loompa. Its all a result of roids and the lack of being able to get rid of the water weight, and moving around is a big challenge. They say to expect to lose the skin... I'll wait and not anticipate on that one. (update 2-9-11, skin is recovering nicely, still have swelling, but all in all, pretty good)
But, I wanted to get the info out there on this blog about what has been happening. All in all, this is the first one which has a lot of positive momentum, and that's how we are looking at it. If I get to move up a diet, you all will be the 1st to know. Keep the support coming, love to see the links to those favorites... I have to say the list about the food network hosts got a lot of people howling around here.
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