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...)

Day +39

It has been a few days now so we thought I should post an update. We had a few days of fevers since I last posted and they had been the big issue. My temps would spike around 102+ and always in the early AM hours. I know 102 is not that bad but when you are already in a hospital bed for 10 other things adding heat to things doesn't help. It made it nearly impossible to rest (let alone sleep) with all the creams and lotions all over my body treating some of the graft verses host disease (GVHD). So getting your skin hot and trying to sweat under the stuff puts things on a whole other level. The docs have adjusted my meds and we are happy to say that I have not had a fever in over 24 hours. In fact the docs have made quite a few tweaks to my meds, first off they removed the order for all the lotions (and potions) and second they have changed most of the medicines from IV to oral. I don't want to presume too much here but last time that was the indicator of a ticket home. I am still on TPN and only allowed to drink fluids but we hope to work on that in the coming days. I may have to go home with the TPN. Man, I am starting have some real cravings for solid food, its been 16 days of the TPN stuff. Oh, one more med was removed - the “pain” med I had been on - continous drip of fentanyl- since I got here so it has been interesting to just be cut off, but things have been fine without it. OK time for a nap, thanks everybody for EVERYTHING - talk again soon.

Tony

Day +34 - Tony here again!

No big mile stone or anything today, just an up day. Things are still progressing in the right direction, although seems very slow from my point of view. The biggest thing is that I have some decent usage of my hands and eyes, enough so that I am able to type this post myself. I added two photo's to try and show what my hands have been looking like (my eye's looked about the same but we don’t have photos).  

OK just a rant here. I always knew that there would be a chance I could spend some serious time in the hospital as I went through this process but I just didn’t think how it would happen. I told myself that if I need to stay in then I had tons of things I wanted to do. I would put in a few hours a day of remotely working, read a few books I have been saving up, learn and play a few computer games, research and plan out activities for when I was healthy again. Unfortunately, I don’t think I really could have prepared myself for any of this. Like I said above, things are going in the right direction and I am truly happy for that. Just having some use of my hands and eyes is having a big impact. I know my hospital time of only 35 days total, is nothing in the grand scheme of things but for today, for me, it feels like a lot.

That's enough ranting for now, I am switching back to the positive mode and ready again to capture all the positive vibes (and well wishes) you are all sending, please do keep it up. I know you are all rooting for me and just the knowledge of that helps in ways that words can not describe.

Thanks Everyone!