Day 1105 RSV Hospital Visit

Well its been awhile but it appears it was time for another hospital visit. Once again, i was able to contract an unusual virus RSV (Respiratory syncytial virus). Some of you with kids might know about this virus as it is common among children under the age of 2. So once again, I went out and found something unusual to deal with. The doc’s have two main treatments that they are going to work with: first is called Intravenous immunoglobulin (IVIG)- a blood product administered intravenously. It contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand blood donors.The goal with this one is to super boost my immune system and help my body be in the best shape to take on the second treatment. This IVIG treatment requires 5 sessions each 48 hours apart. The other treatment is an inhalant called Ribavirin.This one has some potent stuff in it. To the point that my hospital bed (with me in it) is shrouded with a plastic tent and a “demistifier” is attached to catch and filter all the excess medication floating around. It really is quite the show to see the nurses setting up everything in full hazmat suits. They don’t want to be exposed to the med or me at this point so there has been a lot of dressing and undressing gowns just outside my door. I feel bad for them to have to go through all that work just to do something as simple as checking my vitals. Basically, I just need to sit in my tent with a nebulizer device for 2 straight hours, not too bad. What makes it challenging is that I have to have 15 treatments and they are every 6 hours. So with these treatments and other nurse duties I can can expect to get no more than 2 hours of sleep at any one time, and if you’ve done the math I should be in the hospital until next week Monday (Mar 2nd). Oh well that’s the way the new me goes sometimes, it’s a bit like a car- I need to come and get maintenanced every now and then.

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