Adaptation to Post Trans

When I last posted, I was sitting in the same seat I am now which is unfortunate as it is the hospital bed at Karmanos.  I remember not wanting to post much with too much incomplete info as we're not trying to run a mystery novel here.  So, its been a few days, and we've had a chance to get caught up ourselves.

By last Tuesday, we had felt we were on the way to recovery from the C-Diff and all the GI (gastric intestinal) fun associated with its demise, and might be able to get a plan together for trying home again.  Before that would happen, I would have to be switched back to pills for all of the drugs needed at home as well as be eating, which still had not taken place, mostly by Doc's orders.  But once you go a while, food starts to not be as interesting as it looks on the Food Network (given that FN is a top 5 channel choice, I see plenty of it).  Now they want me to ease into the food so I don't further upset the stomach region.  "Easing into" is with clear liquids and no milk products and gradually adding some flavor and texture. 

Through Wednesday morning Doctors are essentially just watching and waiting at this point for my GI tract to clear which should make my overall improvement accelerate, but the part that continues to get slightly worse are stomach pains and cramping.  Same questions and check up every day from Helga (changed name) the PA continue to get me annoyed because they tend to go something like:

Helga - So you look better today, are you?
Me - Compared to when?
Helga - Yesterday
Me - I guess it depends on whether I have had cramps or pain recently, I slept better so...  OK, a little better
Helga - So how much better
Me -  I'm not sure its better, maybe less episodes and I have used the bathroom more often
Helga - Yes, we see that (they measure EVERYTHING), so that would make sense.
Me - annoyed and half nodding
Helga - We'll be back down to see you with Dr. Uberti shortly

I'm can pinpoint why, but Helga has annoyed me from the 1st time on rotation a week or so earlier.  I feel like she can be a real (rhymes with "itch") and has some agenda.  Heard she was moving on in a couple days, so I had a new goal, get through the week.  I also found out that one of my regular visitors, rhymes with Trudy or Rom depending on relationship, didn't think much of her either (keeping with the changed names for this story as to protect the innocent) which was all the confirmation I needed...  Dennis got to meet her on Thurs afternoon and without provocation, said the exact same thing as well.  But I digress...

Back to Wed.  When Dr. Uberti went over the latest information with me he indicated they wanted to do a CT scan to look for some possible bleeding internally as my hemoglobin counts had gone from 9.2 to 7.4 in less than 24 hours and didn't fit the latest weeks worth of counts and patterns.  During the same visit, as he was listening to the chest, lungs and stomach area, I got a pretty severe cramp while he was present for the first time.  With that in staring at him, he ordered the upper GI biopsy and based on where the pain showed itself, might as well do the lower again as well.

So to summarize, inside of 12 hours, we had gone from observation only to having ordered a full upper and lower GI's scoped (for Thurs), a CT scan ordered (for Thurs) and now a need for hemoglobin (Wed) because of the unknown drop.    Got fresh blood on Wed no problem and spent the evening literally forcing down 64 oz. of the "clean out" shake they give you as a prep for the scopes.  The CT scan required no prep.  I wasn't convinced this was totally necessary using the male chromosome logic that "if you've had diarrhea for a week, is it necessary to force it on me for the last 12 hours" and to top it off, my opinion on that matter is pretty irrelevant as my degree has BA and not MD.

Thurs AM.  Now for the real fun. The same test revealing the need for more blood showed that my clotting wasn't sufficient enough at the time to do the biopsies required in the GI scopes, but they could get me ready by treating me with vitamin K and some fresh frozen plasma to get the clotting back in line.  Going back a while, I reminded them I have to be pre-treated for platelets and they needed to do the same for the plasma.  So now we have to "prep the prep" medicine with 50 mg of Benedryl.  So what had planned to be a 1:00pm  procedure was definitely getting pushed back to much later (which screwed up the visit schedules of my friends Dennis and Mike), but still take place.  I got the shot of vitamin K and 2 bags of the plasma.  About 15 minutes after I received the treatments, I felt the reaction of a tingly, warm chest area and started to have trouble breathing.  I let Lauren (real name, great nurse) know what was going on and they noticed some hives on my stomach and facial/neck areas.  Same thing that happened back in Sept after platelets.  To their credit, Helga (and about 6 people more became very interested) quickly organized the medssweated, swore plenty, felt like puking, shook and threw some F-bombs around all while hearing "it will all be OK really soon" one too many times.  Needless to say, adrenaline is powerful....  but it did do the job, relaxing all the air passages inside and out, getting rid of the hives and returning me to a semi normal state.  I was worn out!  (Lauren, my nurse, told me later that Helga was taken back by my language...  we got a good laugh out of that).

Over the previous week(s) etc., the family had discussed trying to get to some type of schedule for up and back visits, etc...  I think we all want to get to some type of base schedule (recognizing in an unreal situation that its impossible) as I make my way home more often and we feel confident in the progress.  The irony, Mom and Dad left on the day, after visiting in the morning for a couple hours that all was supposed to be "calm." Lynn had visited at the same time and while she said she wants to be by me for this stuff, not today's, guaranteed and she admitted it.  The idea is still a good one for the schedule, but we'll get through this part of the mess for now and keep playing it by ear.

This little episode almost guaranteed that I wouldn't be getting the GI scope, but they still held out a possible hope.  DH had popped over from the 2011 International Car Show (rebuilding Detroit, one car at a time) and was privy to all the attention I was being paid.  By now, my Doctor was on the floor, Helga was giving us her input and of course the nurse was actually running the show.  Her superiors were all there and she was taking orders from every hand in the room and floor.  Lauren did a hell of a job.  I was going to have to be monitored all afternoon now based on the possible side effects of the already great side effects.  All I wanted to insure is that I was not going to be getting any more adrenaline!

My blood pressure provided the most attention as it hovered pretty low reading 80 over 40 a few times.   Eventually, some blood pressure medicine was provided and my readings started to clear up.  What they could do now is take me for the CT scan, and DH and walked down with me to get that done.  When we returned, my buddy Mike had made his way down and we caught him up on all the afternoon festivities.  DH, Mike and I had a nice visit together to wrap up the day.  Mike was able to stay a bit longer, so we got to catch some one on one time as we really never get that chance.  It was like a big Nor'easter swept through the middle of a well planned day, but at least it ended well.  And through all of it, the whole "getting the clotting issue resolved" never did.  Trying again on Friday....

Good news from the CT Scan came back, no internal bleeding, which had me worried the most of all the tests.  And now a drum roll...  we got to do the upper and lower GI Scopes on Friday as well, and frankly, it is time to get to the bottom of all this shit (again, no pun intended).  Of course the results showed nothing from the scans themselves, but the biopsy's would be where the real results come from and we had the weekend to wait it out. 

Great thing the football is still going, because there was nothing else happening when all you are charged with is "waiting" as your job.  The entire weekend was basically empty, and that would make sense since I've been empty of food now for 10 days.  It started as the project to clear my guy, but now, I'm not sure what, if anything I could eat.  Hell, even with the delay on the GI tests, I didn't have to re-drink the clean out solution.  On Sunday, I got a great surprise from my buddy BS who made the trek up from Miami (OH) just to hang and watch a little bit of the early game. After all the not eating, drinking, sleep, rashes, etc...  I wish I felt better to have visitors, but for the most part, my energy is gone by mid-late afternoon everyday and trying to figure out how the sleep will take place that night.  So...  when in doubt, watch the Food Network.

It's taken me most of this Wed. to type this blog for a lot of reasons, got a surprise visit from my brother for a couple days, lack of sleep, eat and the continued cramping and trying to manage that pain and the possible nausea.  I know it looks like a big procrastination, but among all the wise cracks, staying strong, and descriptions of people we know, like, don't like, we have had a pretty damn tough couple weeks.  Things look good one day and not so much the next.  When you are a type "A" and the treatment is to watch and wait, patience will be tested, and so far I'm passing.  But it's not just the patience, its partially in the "Art" form that requires observation and then action, because if you act too early, treatment chosen could be 180 degrees from what is required (as explained to us as we waited toward the end of last week).  The answer to every scope, blood test, CT scan, etc...  was Negative.  But, not the way I feel, I'm positive something has to be positive.

On Monday, that was the case.  Within a week of the two colon biopsy's, we got a negative result reading and then the positive test for GVHD the 2nd time.  I have the rash on my extremities and the GVHD is very prevalent in and around my gut.  The good news is that the liver is not part of the positive test.  The Doctors say this is very treatable, but I think we all know that it has to be watched closely, so I won't be going anywhere anytime soon.  I'd venture to say that since I thought about going home the 1st time, we never let this thing take its course...  was positive for C-diff when I went home, negative when return, but no change in symptoms, and everything was pointing to more problems with the lack of eating, drinking, sleep, etc...''

Outside the waiting, the fun stuff is that I get heavy doses of steroids twice a day which isn't helping the sleep issue and am expecting to put back on some of the lost weight from not eating.  But, I need to keep the walking and physical activity up so the 'roids don't start eating the muscle memory.  Back to food.  Even if I tried right now, I couldn't do it, so I have been put on IV food for the next week or so, but again, that is all contingent on how easily I can introduce food back into my system.  I think I've lost 25 lbs on this stay (Dec 8) to go with the 25 from the fall stays at Providence hospitals and original chemo.  Now is when the observations and monitoring really take place.  The simple goals are:  get rid of and lessen the amount of diarrhea, no fevers, get rid of stomach cramps and begin eating.  Those will all show that the GVHD is being minimized and allow me to head home again.  But, they won't send me home without being able to eat, we know that much.

So we are all playing catch up again and I look forward, as always, to comments, and heck, even some questions.  If we can answer or make a smart ass comment, I'll try and accommodate.   And Helga has moved to a different hospital....

Back in the Hospital

I guess that title can be considered a few days old now as I returned to Karmanos on Friday morning and ended up being re-admitted that afternoon for a variety of reasons, well, maybe no a variety, but, I'll try and explain.

Obviously, my last posting had me "moving on up" and out of the hospital last on Tuesday the 4th.  Unfortunately that was the wrong decision and I'm sure I helped bait hook as I was anxious to be anywhere but the hospital.  Lots of reasons to want to go home though:  see the family on a regular basis, taste food other than the hospital, better TV, more comfortable bed, celebrate a small X-mas with our kids at home, etc...

I think Lynn and my Mom knew something was amiss when we arrived at the house and I pretty much made a beeline to the bed and wanted to sleep for a few hours before the Ohio State game.  But, eventually I made my way downstairs hoping to feel better, getting a bowl of cereal and something to drink (I know, huge meal).  Dad and I settled into the game through the 1st half and then I think both he and I knew something was amiss when I had to go to bed and forgo the rest of the game due to lack of interest and being unable to get comfortable.  I think we all held out that the trip home would gradually get better and better, and after a few days, we could settle into the recovery.

Prior to leaving, and the Doctors did express some concern that I had tested positive for C-Diff (defined) and that it might affect me for a bit.  It was being treated, and is generally not a huge concern.  But, while I had tested positive, the previous 4-5 days in the hospital hadn't yielded many of the symptoms, so they did let me leave.  Now at home, the symptoms showed themselves and really made life more miserable than it should have been for the next 3 days.

The bottom line is that the 3 day stint at home was not comfortable in any way.  I couldn't enjoy my family.  I couldn't sleep more than 1 hour at a time without Ambien, and that only got me 3 hours max when I took it at night.  I tossed and turned and kept Lynn up all night which made her days miserable, unable to get comfortable in bed, a chair, the couch, anywhere...  and the family finally had to celebrate X-mas with me in bed not well enough to attend.  Looking back, I couldn't eat, sleep, drink a lot of fluids (everything tastes like chalk right now), get comfortable, and had the above noted C-Diff working on me...  a hospital stay was in every ones best interests.  I think we all thought so by Thursday night, and I even mentioned to Lynn that it would be the best move on Friday, when we had a clinic follow up appointment at the hospital at 9:00am.

By the time we reached the clinic, cramps had set into my belly pretty regularly and they started treating with the pain medications for relief.  The Doctors at the clinic are the same doctors who treat the BMT patients on the hospital floor, so there is continuity in the personnel and process.  The "clinic" is the area that the patients who are sent home have to attend multiple times a week (tailoring off as time goes by) to have blood levels checked, and assess the progress of the patient.  I think it was agreed right away that I would be re-admitted that day and we would begin tests for any signs of the GVHD that may have been causing discomfort.  Even prior to coming back to the clinic, it had been explained that the gut is the window into follow up treatment, it is the area where problems will show themselves most noticeably.

I think everyone was relieved to have me back in the hospital, all for the right reasons, including me.  The 3 days at home weren't worth it and I think it put everyone on a little edge.  So now it was time to treat the symptoms and that started with every one's favorite, a colonoscopy and biopsy of that area for testing.  We would continue to treat for the C-Diff and now I would go back on IV medications (which were all pills at home) to accelerate feeling better.  The tough part is that they wanted to "clear" out my system, so I would be on a diet called NPO, which means no food or drink outside of water, but only with meds...  (yes, I've lost weight).  The best part is that since I came back feeling so weak and worn out, I get to wear a wristband that says "FALL RISK."  I understand why, but talk about getting labeled...

Here we are on Monday morning, the weekend went by relatively uneventful.  I have been able to get some better sleep, but still very weak from no eating, etc...  doing my daily walk routine is harder and harder.  Results from the colonoscopy came back negative for GVHD and we should have the biopsy results today.  Part of my taste issues were a result of developing Thrush throughout my mouth and they have been clearing that up as well.  The C-Diff is "negative" at this point, but could be finishing its cycle on my body, and while I feel better, its barely good yet for any length of time, and I think we'll be here for ???  (this time, I'm not pushing it, when they say go, I'll go).

I think everyone agrees that I am progressing, and the Doctors aren't letting me outta here feeling the same way as before.  Before even entertaining leaving, I will have to be switched back to all pills for medication and that takes a few days on its own to accomplish (and there are a LOT).

So for now...  you are up to date.  Sorry if I was blank for the last week, but typing was not an option in the middle of it all and even this AM, I'm pretty tired now.

Keep fighting the good fight.

SS