Two days off- too much (Day +53)

So it looks like my body may have had a bit of Mayo withdraw as I am once again back at the clinic. It is turning out to not be that big of a deal but this morning I had three boughts of near fainting and had to fall to the ground. Karen was there to help and although my butt is a bit sore, I am fine. It appears that my blood pressure had gone too low: 89/68 and the culprit is fluids. We put so much effort in watching all my intake and still my body wants more. It is recommended that I drink a minimum of 68oz a day and yesterday I had 80+. Yet all indications from the clinic staff is my body wants more. They are doing some other blood work and stuff but it looks like just a big bag of fluids will turn things around. Maybe next week we can try again for 2 “days off”.

Tony  

Some Improvements Day + 52

Well things are still going good, a bit better than I personally had even thought. Yesterdays visit to the Clinic was full of encouraging news. For starters, my body and I earned the weekend off and we do not need to return until Monday.  I could make a habit of this. The second thing is that we are going to try and go the weekend without TPN assistance. That means I have to eat everything my body needs, 2,200 calories and 80 + grams of protein. Normally that would be very easy. In fact, I am sure I have had a single meal that had more in it than what is required. The hard part is that my gut and esophagus are still a mess and I am stuck to a very limited diet (no diary is the biggest issue). So we have our work cut out for us this weekend to make sure I meet the nutritionist’s requirements.  Wish us luck.  I could also mention that I did have an outing with Tracey on my first day off, we went to the grocery store and Target. It felt great to see and do things that once seemed so mundane.

So things continue to go the right direction, some parts are still slower than I would like but I see progress.

Tony

Day +50

OK I know 2 posts in two days when I said updates are going to be slow. This one is just to recognize that we have reached day +50, since transplant. That’s takes us halfway through the tuff part (the first 100 days). Its just another mile stone, but one I have been watching for. I actually think I can see the next 50 going faster than the first. Let’s hope so!

I also wanted to let people know, our freezer and fridge are full up (no more room). You all have been so kind and given us so much that we have run out of room to store anything more right now. With me on TPN and not eating “real food” there are only two people really eating all your glorious foods.  So if you could hold off for a week or two to give us a chance to catch up,  that would be great. We will let you know when we need the help again but for now we need to catch up a bit.

THANKS ALL!

Tony

Day off ! (+49)

This may not seem like much but Mayo just called in and said the doc had modified my clinic schedule. What does this mean? I have a “day off” no doctor, no drive in, I get to do as I please for a full day. I have been going to Mayo or in the hospital for 58 consecutive days now, so this is a big deal. Maybe a bigger deal for Karen and Tracey but still a big step for me.  All this really means is that things have stabilized enough that they doctor will not be making dally changes to my meds. It doesn’t mean anything has really changed just stabilized for a bit. I will go in the next day just as usual and we will see if a can add additional “days off”.

Just a side note people may have seen request for gas cards in the care calendar. Karen added this to give people (mostly out of towners) another idea to let “them help”. As they can’t cook (or visit) and what to help, this was just another idea. I am sure you all understand but I felt the need to explain.   Don’t get me wrong we are racking up the miles with 80+ miles round trip to Mayo. OK enough of that.

As Always THANKS EVERYONE!

Tony

Some Photos Day +46

Just wanted to share a few photos. The one of Karen shows an amazing gift from her students. It is a 1,000  hand made cranes. A Japanese proverb, if you make a 1,000 cranes your wish will come true. The other one shows our med table to give a visual for all that Karen and my caregivers are dealing with. Finally the one of me is just because I had a good couple hours.

Day + 45

Sorry its been awhile since my last update, but the big news is that I am home and have been for 2 days now. Like I have mentioned before, being home is a lot of work and it has really taken a big effort to get settled in again. With the addition of the Home Health provider visits and the TPN setup and take down every day, we have added to the stress and timing of getting everything in the confines of my limited day. As far as changes in my health- there is nothing really to report. The Doc's are going to ride things out for awhile and give my current meds time to do some work, so we shouldn’t be looking for anything spectacular to happen any time soon. As Karen has said “slow and steady” is progress. One thing to mention is, that they have upped my diet a bit more. I still can't have anything dairy or solid, but its a few more food options. You would be amazing how many “non-solid” foods contain dairy, think about it. OK that's it for now, don’t be surprised if my posts stay low for awhile as there shouldn't be much to report, but as soon I have news I will let you all know.

Tony

Day + 42

It is starting to look like the slow recovery process is working. At least enough so that they are talking about releasing me as early as tomorrow. We are still dealing with most of the issues and nothing is really going to change but my location. I will still be taking in food via TPN and all the same meds, they will just be from home. This comes with mixed feelings- on one hand it would be great to sleep/be in my home again (its been 20 days). In fact, of the last 50 days I have spent 45 in the hospital. On the other hand doing everything that is done in the hospital from home is a lot of work. A lot. In addition to doing the stuff at home, I will still need to make a daily visit to the clinic. Which in itself is a chore. We have an hour drive up to the clinic then get blood draws and wait about an hour to see if additional meds are needed, if so then administer meds (maybe 2 more hours), then another hour ride back home. Total average time 5 hours, and we get to do this every day Mon-Sun. Although I have gained a lot of energy, the clinic visit and home health tasks are going to take a lot out of me and my care-givers. We are willing to give this a try again but it is questionable as to how really-helpful this might be.

I just wanted to add a note here regarding care givers. You all know that I have Karen watching my back and helping in so many ways that I can not mention, but additionally, I have had my mom out for 3 weeks and now my sister in-law, Tracey for 7 weeks - both from Chicago. Their day to day help is so very hard to describe. Their help runs the gamut from helping with meds and getting dressed to just being in the room when I come to from a drug induced nap. I am so very grateful that they have been able to be at my side as we go through this process. THANKS guys...(thanks everyone...)