Hip #2 Done, What's next?

Hello all, sorry for the delay on this update but I have some good news. Hip number 2 has been replaced. Last week, Friday Sept 12th, we were finally able to get the surgery scheduled and completed. Once again, the actual event went smoothly.   I was able to be in and out of the hospital in just over 48 hours. Once I was released and home we had some great help with my parents visiting from Chicago.  They were able to help me with my day to day activities, as well as be my personal limo service getting me to doctor appointments and blood labs. Unfortunately, they had to return home Saturday, so today (Monday Sept 22nd) is my first day limping alone at home. Overall I am doing OK not much different than last time.   More bone ache and more pain pills but things are moving in the right direction. With this being the second hip,I do feel more unstable and will need some physical therapy to help me move around better. I don't know when that will start but I am looking forward to it. It is finally time to take some big steps forward with the new me. For now, I will need to stay patient and wait for the PT to take effect as I continue to reset my childhood immunisations and balance my chronic mouth and gut GVHD. It might not look like it but I think we are turning a corner and more good things are to come.

Just and update.

Hello all, just trying to keep up a bit lately with my medical status and changes. To be honest it has been a bit of a downer the past few weeks. After the unexpected hospital stay in mid-June things have domino-ed. With the postponement of my hip replacement, the blood clot in my right forearm and now high liver enzyme levels. The liver thing is an ongoing issue but has gotten to a level where we need to try and “fix” things. There has also been an increase in issues with my mouth, gut, and over all fatigue.  So for now Dr. S. has brought back the steroids to try and help zap things back in line, we will see what a high dose 2 week regiment can do. If this zapping works we will see how fast (or if) things go south again. We may still be dealing with the effects of the hospital stay, or this could be another flare-up of graft verses host disease. Either way this is going to postpone both the cataract and hip surgery’s and delay my personal goal of getting to the new me.

Sorry this is not much of a positive update, but I wanted to let people know how things are going and help me keep track of my status when I look back on these posts later.

Take Care All,
Tony

Short Update

Short update today, I had the chest CT scan last week and the phenomena and infection are depleting as expected.  However it just wouldn’t be me without something new. I ended up getting a blood clot as a result of the IV’s from 2 weeks ago. The main area for the clot is in my right forearm/wrist, which ends up being one of the more annoying places for a clot. No real concern for this turning into anything bigger than a very painful experience, the clot with dissolve harmlessly over the next week or two. It is just another gotcha kind of thing, as pain meds don’t help and a need to use my arm/wrist for work and dally life stuff. Anyway we are still on track for cataract surgery July 22^nd but no new date for the 2^nd hip replacement. So expect more updates as things progress.

Tony

2nd Discharge (home again)

Well I don’t know what to say but I am once again back home. This second hospital stay ended up being just about as short as the first. After another close call,  we were able to turn things around quickly - just 3 days and 2 nights, and some very heavy antibiotics and medication to get me discharged. From what we can gather I have haemophilus influenza and a bit of a bug in my spinal fluid. The good news is that these things can and have been reacting very positively to the drugs. As Karen stated all this is not a big issue for a “normal person” but without a spleen and no vaccinations these bugs were able to get a good hold on me.  So what’s next? Not much. We have been sent home and given a new antibiotic with orders to rest and recover. With a few follow up appointments and a final review with Dr. S a week from Friday. Personally I am feeling alot better and things should improve over the next few days, in fact I hope to return to work Monday. It looks like we finally have a good handle on things and that’s where we stand. I will give an update next week as we get results from the follow up tests and appointments.

Finally I want to say THANK YOU all for your support. As I have said before it really does help to know that you have people rooting for you.

Tony

2nd stay, day 2 - "Unknown"

Hello everybody - This is Karen - Tony's fine, I'm just taking a turn. :)

Ok, so quick review of why the 2nd stay.  Got released Friday evening.  Felt fine.  Woke up Saturday AM with a neck ache.  We figured - Slept funny, got a sore neck.  Took Tylenol and put on some muscle cream through out the day.  Sunday AM - same neck ache, head hurts, had to get up to pee every hour.
Somethings not right here.
We called the Doctor - reviewed with him and he said, let's get you back into the hospital, somethings going on.
So yesterday around 10 AM we were readmitted.  General feeling is oral antibiotics were not strong enough to fight this infection.  BTW - Tony has Haemophilus Influenza.  For those of you that do not know, most of the time when we think we have the "flu" we actually have some other "bug" we do not have the flu. The actual FLU is deadly and that is why there is so much worry over H1N1 and other influenza.  The Spanish Influenza in 1918 killed 50 million worldwide.  (sorry, History teacher sidebar!)
As things stand now, Monday 3:00 PM - Tony has a small amount of "cells" in this spinal fluid (they did a lumbar puncture {spinal tap} yesterday evening)- not really enough to worry over at this point.  They are culturing that and running cultures on his blood work too.  Did an EKG and took him off of 2 of the 3 antibiotics he was on yesterday.  He is still on an antivirul medicine.
Honestly, he is doing well over all.  Not a lot of pain or discomfort, in good spirits with good energy levels, so don;t worry.  We just need to understand what is going on inside of him.
Again, from last week's stay, he has no spleen and has had no immunizations, so he is in a vulnerable place when it comes to infections and disease.  That's how the Haemophilus Influenza snuck in.  
Now,on a strange note, the docs are talking about stopping his meds and letting him go tomorrow AM.  We are a little thrown by that, but this is all just so weird for us.  Tony has an appointment to see his regular transplant doc tomorrow at 9:30, and we will see if that is where they direct us.
So, that's the info we have for now.

Short stay (THANKFULLY)

Well folks this may not come as a surprise to many of you but I am back home. Yes that’s right - home in Mesa, AZ with my own bed and bogs to pet. It was a whirlwind as you might expect, but it appears to be a short wind storm. After having a 104.1 degree fever on Tuesday night and then a blood pressure of just 68 of 44 Wednesday, Karen and I were shocked to hear that I would be going home. I don’t have my energy back and with be on HIGH levels of antibiotics for some time but I am home. Officially Karen got me back home around 6PM last night so I only had a 2 and a half day long stay. The doctors didn't say this was an indication for a fast recovery just a fast (and I am hoping successful) diagnosis and treatment.

From what we can gather up I have had a bit of pneumonia/valley fever for some time maybe 2 weeks or so, but after a busy day Sunday and working a good part of Sunday night I moved things to a more infectious stage. The doctor used the term hardshelled bug - a sepsis blood infection, and for most this wouldn't be that big a deal- apparently your spleen is capable of cleaning some of these guys out and if not, your normal childhood vaccinations should be able to finish things off. Well unfortunately for me I no longer have a spleen, that went on round two of my cancer treatments back in 2002 and as for vaccinations / immunizations they were are wiped out as part of the Stem Cell transplant. So I had no defense for this one and it was able to do its work hard and fast.

Once the doctors were able to get a handle on things and knew what we were fighting and how best to treat it, my health improved rapidly and I was moved out of ICU very early Friday morning. From there I was monitored for the day and released. Thankfully the antibiotics that I am on are not an IV infusion, just oral pills so they let me go. A simple case of “no more we can do here” you can recover better at home. So here we are at home. I cant say that I feel great but I would put things in the 60% range. This does officially postpone my 2nd hip surgery but I couldn’t say to when - maybe early August. All in all this was a bit of a scare but as usual we were able to push through it, we will just have to take it easy for a few weeks and see what is next.

As always thanks everyone for you support.

Tony & Karen

Unexpected Hospital Visit

Hello all- I just wanted to send out a blurb that I am back in the hospital. Not sure how or why but I have aquired a pretty good case of pneumonia. Things have stabilized but I am still in the ICU and hoping to get to a normal floor tomorrow and out of here just a few days after that. As I have said before, these things will happen from time to time- my immune system will always be a bit out of whack and it just must have been my time. Anyway the real set back in my eye’s is that I am only 6 days away from my scheduled 2nd hip replacement and will now need to postpone it for an unknown length of time. This getting the new me is talking a lot longer than I had expected, but I will keep trying and looking forward, you never know what is next with we.

+ 2 years 38 days (hip #1)

Not sure if I should still be titling these blogs with a post transplant date but they do all count. I have passed most of the hurdles but it can truly take 10 years for my body to be fully and completely settled with the new me. I think I will keep it for now as I don't have any other interesting blog titles. 

So things are going good. We just had the first hip replacement Friday and I was home from it Sunday. Yes- 48 hours is all it took. That’s OK with me.  I have spent more time in a hospital than I would have liked over the past 2+ years. I still go to the Mayo Hospital for appointments just about every week but its a whole different story when you spend the night.  

As for hip recovery process, we are still working out the finer details. As it stands right now, I will be home for about 2 weeks dealing with pain meds and mobility issues. Then as I move to using a cane and have better mobility, I will work from home and ease back into the office routine. If all goes as expected, this hip will be better than before and we can move on to the right hip and take another step to the newest version of me. 

As always thanks everyone for the continued well wishes.

Take Care All. 

Just thought I would throw a recent photo in with this post, it was taken 6 days per-surgery.

Day + 730 (2 years post transplant)

Well it has been two years… and what a two years it has been. So many things have changed and so much has happened - it has been a real interesting journey. I am well on the way to completing my secret plan of being the first fully rebuilt human.  With new or improved blood, skin, eyes, intestines, feet, hands, toenails and soon hips. All and all, things are going OK and I am trying to learn to live and work with the new me. My days of playing hard might be behind me but a part of me is just not able to let that go. I will be attending this year’s 24 hours in Old Pueblo mountain bike race as a spectator for the first time this weekend and it going to be hard. I so badly what to be the old me and to be excited and anxious for the adrenalin filled ride. There are few things like riding a bike at 18+ miles an hour through the dessert in the black dark of night  - it’s a whole different perspective. My condition still can improve as the doctors and I now work with the new me. As I mentioned, I will have my hips replaced soon (left one in March, and right sometime in June) we are looking to have plastic surgery on my left eye to help allow me to fully close it and I am going to try to start some physical therapy or strength training soon. So the final verdict is not in yet, I am definitely not where I want to be as far my abilities but, all and all, things are OK. Let’s hope next year I will be able to ride the bike course if not race and maybe build back to some greater resemblance for my old self. For now, I have to remember to try and be patient and maybe not so hopeful, as a fellow transplant patient put it I need to be looking “forward together forward”.

That's it, that’s my two year update. THANK you all for being there for me and Karen over the past 2 years. We really do appreciate everything everyone has done for us. As things happen from time to time, I will try to update this blog as a record for me and you all as well  - just to let you know how life is going.

Take care everyone!
Tony