Back From The Dead

Hey all, It’s me, I’m alive and kicking. Sorry it took me so long to to let you all know I was alive and kicking but I really wanted to make sure that I WAS GOING TO STAY ALIVE AND KICKING for at least a little while before I opened my mouth. OK, so here it goes, (the edited version) let me just first start off by saying that being in an induced coma for 3 weeks really sux @$$ and I would strongly recommend avoiding it if at all possible ...LOL/CRY. Definitely an experience I could have lived without. (Hmmm, actually, literally, it was an experience that I wouldn’t have lived without) I spent a total of 28 days in John Muir hospital, 21 of which I was being kept alive by life support in that aforementioned induced coma. One day I’ve got a bit of a soar throat and less than 6 days later a simple head cold turned into a life threatening case of pneumonia. (Multilobar Pneumonia w/ Subsequent ARDS w/ Acute Respiratory Failure) Laying on the couch, feeling like crap and I took my temp. 103.6 degrees, Hmmmm, that’s not good, ... called a friend to drive me to the hospital. With the exception of a few other small details the only thing I remember is someone in the ER holding up an x-ray of my chest. Wow, where did my ribs go. Oh, they’re being covered up by those two big solid white blobs that used to be my lungs. Again I thought to myself, that’s not good. Didn’t take a brain surgeon to figure out that things were far from good. Next thing I remember is waking up in a bed uncomfortable as hell with tubes everywhere. Couldn’t really put any kind of thought processes' together, couldn’t move very well and couldn’t walk. I had literally forgotten how to walk. I had no Idea that 3 weeks had passed. Felt like it was a bad night’s sleep with some really horrible dreams and the most vivid hallucination I ever had. Probably took me the better part of 2 or 3 days to actually wrap my brain around the concept that I had just been unconscious (sort of) for 3 weeks.

It wasn’t my time. Ventilator was pulled at the 3 week mark, which is the maximum time that the vent can be left in the throat due to esophagus and vocal cord issues. As per my DNR (Do Not Resuscitate) no further life support was administered and I was not trached. I was left on my own to survive, .... Or not. Seems my body just wasn’t ready to go yet. Off life support, alive, feeling like crap, brain function significantly slower than my usual slow self, unable to walk, still eating through a tube in one nostril, (Mmmmmm, Similac, my favorite) O2 in the other nostril, 30 pounds lighter than I was 22 days prior and facing the probability of months of rehab and O2 in an assisted living facility. Then after a few absolutely horrible days, you don’t want the details, believe me, I managed to keep my first solid meal down. Mind you, I yanked the feeding tube out a few days prior, SORTA BY ACCIDENT, kinda, .... Nurse said that’s gotta go go back in, .... “Yea, over my dead body!” Anyhoo, next morning I got up at 5:45 (I will never forget looking up and seeing the clock, ...5:45) and everything seemed better. Hungry as hell, needing to take a leak (go potty) Kicked my legs around in bed and they seemed to work as well. Got out out bed, walked to the bathroom and took my first standing leak in 26 days :-) Ahhhhhhhhhhh. It just all, well most, came back. I could eat, I could breath, I could walk and I could almost think. Later that day the hospital doctor walked in with a huge smile on his face and said, “So I heard you’re walking,” I jumped to my feet, did a little dance and walked across the room. Still smiling, like a 6 year old in front of the ice cream truck, he said, “You’re outta here! Go home.” A little bit surprised I asked, “But don’t you want to observe me for a few days and make sure I’m not gonna just kick over and die?” and he replied, “You just survived something we didn’t think you would, you’re walking, you’re eating, you're breathing on your own, you’re feeling good. If I was you I’d get the hell outta here as quickly as I possibly could.” The next afternoon I was gone. Homeward bound :-)

Fast forward exactly 3weeks and 1 day from being released from the Hospital, yesterday, I saw my Pulmonologist, Dr. Cheung, the woman/Dr. responsible for me being alive. I had not seen her since the day before my release from the hospital. Before entering the room I was waiting in she examined my most current x-rays and the results from a pulmonary/respiratory function test I had taken last week. The door to my room opened and there she stood with an ear to ear smile and as she walked in she said in an excited, almost giddy voice, “You have no idea how happy I am to see you.” She sat down next to me and the very next thing she said was, “In all my years of being a Dr., you are the only patient I’ve ever seen that was in that bad of shape that actually left the hospital on his own 2 feet.” We chatted for quite some time. I swear she had a shit eating grin on her face the entire time like I had just made her day/week/month/year???. She informed me that there was still a little bit of minor scaring on the lungs but other than that everything was perfect. I was healthy and getting stronger and stronger and that was also her only prescription to me, .... Keep getting stronger. She gave me a big hug (when’s the last time your Dr. hugged you) and sent me on my merry way.

So what caused a healthy, fit 44 year old man to get that severe a case of Pneumonia? What’s causing that same 44 year old man’s tendons to be tearing like tissue paper? That search still goes on. 2 different tendon surgeries still await me. Nerve blocks next week. Contrast MRI’s, appointments with hematologists, blah blah blah. All I know for sure right now is that I (and my little dog) hiked 5 miles today with a vertical incline of about 1800 feet, in 2 hours at an average heart-rate of 141 BPM with a max heart-rate of 175 BPM which I hit about 5 times during the hike. I’m feeling good and glad to be alive :-)

I definitely have a renewed attitude towards life now. Definitely glad to still be here. Definitely grateful to my Dr. for being so skilled and so stubborn. Definitely grateful to everyone that had good thoughts for me and DEFINITELY grateful to a select number of people who really showed what they were made of and what length’s they would go to for me. Those people know who they are and I can’t thank them enough for what they have gone through and what they have done for me. Thank You. That said, I really do have to mention an extra special thanx to my sister Erika, who literally put her life on hold to take care of me. Thank You and I love you.

Live every day like it’s your last!
Live every day like if it is your last, you will have nothing to be forgiven for!

Signing out for now,
Back From The Dead,
Joe


PS. Have no doubt that by next summer I will be back to hiking up Half-Dome and clearing every gap-jump that Northstar has :-)

Joseph is Home

Greetings all. Just a quick note, I’m at work and can’t goof off too long… But… Joe is now home! He was released from the hospital yesterday (Monday Aug 17th) and is recovering far better than the doctors expected. In a few days, once he has regained his baring he’ll start posting on this blog and updating everyone on his condition. We are all relieved to see him home and happy.

-Tom

8 Walks Around The Nursing Unit

Hello all. Today has been a note worthy day. Joe is up and walking around! Now that he is off the sedative and out of the ICU he is doing a whole lot better. In fact he now has his computer with him and is able to start communicating with the outside world. I am inviting him to be a contributor to this blog so he may tell you all how he is doing himself.

-Tom

Hi everyone ;-) Joe has been improving over the last few days. They are lowering the settings on the ventilator and his O2 levels are staying up. He hasn't had any fever now for 4 days. (hip, hip, hoo ray.....) I brought an Ipod in for Joe to listen to the other day and when the music started playing he smiled and did a jig to the music with his head and feet. jejeje It was such a "Joe" thing. (the smile and the jig... jejejeje). The nurse was a bit upset that he was moving so much (not because of the music) but he was just done lying still. They thought he was frustrated but I kept telling them he was just done and he was being him self (constantly on the move) jejejeje His moving hasn't stopped since ;-) Today I came in and he was sitting up in a chair. They kept him upright for about an hour and it made him happy to be able to just be in a different position and it exhausted hhim enough to lay still and actually fall asleep when they put him back in the bed. It was really a good sight to see, but a bit difficult at the same time.

Back to what they are doing for Joe. They have been playing with his meds to see if they can get his pain under control, in hopes that they could possibly get him off the ventilator sooner rather then later. The have him completely off the versed (heavy sedation) and tomorrow they are going to give him an epadoral with heavy duty pain stuff. I don't know why the docs didn't listen to us a week ago when we brought that up, but now that pain mngt ordered it... atleast it is being done.

I will try to keep you guys a bit more updated. If you want more medical termanology etc you will have to ask Tristen or John to do the updates. This is my story and I'm sticking to it. ;-)

Go brotha Joe, Gooooo..... I love my bro. ;-)

The Latest News

Joe continues to be a stubborn SOB. With standard ventilation his blood oxygen levels and his chest x-ray continues to improve. The doctor has reduced his input O2 concentration a bit to roughly 50% and removed him from most the paralyitic but he still remains under full sedation and she has increased his pain killer flow to minimize any pain he might be experiencing. They continue the introvenous nutrients as before. He continues to run a fever at ~101 degrees.

The doctor wanted to stress that they continue to search for the underlying cause of his condition. There have been consultations with multiple infectious disease doctors on his case. To date, everything has been negative though they continue to search. I put a request to have them check for lyme (to investigate his underlying joint issue, not the pneumonia), Bubonic and pneumonic plague (as per the request of a family member). One error from a previous report is that they are still waiting for hanta virus results since it has to go to a national lab to get results.

Plans moving forward are that she will continue to wean him off the ventilator with a goal of getting him completely off in 3-5 days. This is driven by both his progress and medical necessity since we've refused to allow a trachometry and he can only be ventilated for two to three weeks via the tube through his mouth. Assuming all goes well, she is also planning to allow him to regain consciousness in 36 to 48 hours. When I prompted that we will want to increase his visitation at that point, she stressed that she will only allow that if the visitation doesn't increase his stress level.

I attempted to pin her down on two key points - Joe's recovery and long-term prognosis including any issues with brain damage from oxygen deprivation. Regarding recovery time, she would not offer any new insight, stating that it will be up to a pulmonary therapist to evaluate the recovery regiment once Joe is conscious and off the ventilator. Thus we can expect roughly a week before we have any visibility. For his long term prognosis, she still offered the vague responses of "should" and "we expect" full recovery. Regarding the specific issue of the possibility of brain damage, she stated that the only time his blood oxygen concentration dropped to levels that put his brain at risk was Tuesday afternoon/evening when they opted to ventilate him. She did not believe that he was in this dangerous state long enough for permanent damage.

She offered to get me another update Thursday, or as time permits.

-John

Big Update.... Thank you John for the very detailed and thorough information

On Friday, Tristen, Erika (Joe's sister), Riza (Joe's other sister) and myself (John Samuels) met with the Dr. Chung, the ICU doctor in charge of Joe's case as well as the attending nurse and a hospital social worker. This was the first opportunity for the whole group to get a full understanding of Joe's situation and prognosis.

Joe's status remains critical condition but stable. He is currently fully sedated with a paralyticic, both being administered via a constant drip so he is completely unconscious. He is currently on a ventilator operating in an oscillating mode (which is very rapid shallow breaths, at roughly 2 breaths per second). The doctors moved to this ventilation mode when one of Joe's lungs partially collapsed on Wednesday evening. The ventilation is at 70% O2 levels (where air is normally 20%) and his blood oxygen levels are dancing between 83% and 90%, where 90% and above are considered normal. Other blood chemistries are considered at acceptable levels.

Chest x-rays and blood chemistries have improved over the last 24 hours but the doctor was unwilling to quantify, stating he will have good days and bad days.

He is on intravenous nutrients, having been taken off of tube feeding to his stomach due to concerns about his ability to process the nutrients in his physical state. Given his condition, it appears that his kidney, bowel and brain are functioning as expected at this time.

One key item that has the doctor's confused and concerned is Joe's extremely low white blood cell count. When Joe was admitted, his white blood cell count was at 1.6-1.9K/ul blood. Normal counts are typically 8-10K and someone fighting off an infection such as Joe's should be closer to 100K. This is very concerning. Since admission, Joes count has risen to 8-10K level, normal for a healthy person but still far too low for someone fighting an infection. The doctors have tested for Lupus, HIV, Rheumatoid, and other auto-immunes, all negative.

Most other test results for the cause of Joe's condition so far also have come back negative. This includes typical bacteria that cause Pneumonia, as well as H1N1 (Swine flu) through results are still coming in. The only item confirmed to be present is a candida fungus, but the doctors believe this is an opportunistic infection given his compromised immune system. Most people harbor this fungus in their system but it is normally kept in check. He remains on broad-band antibiotics though the doctors have removed him from one medication given the test results. He is still running a moderate fever that periodically spikes and is treated to bring it back down. At this stage, the doctor suspects Joe has/had a viral source of the pneumonia, but has no conformation at this time.

So where do we go from here? First, the doctor offered a recovery regime based on an assumption that Joe was a health 44 year old. More on this later. As it stands, if one assume best case and he improves steadily from this point forward, they will move him from oscillating ventilation to normal ventilation in 24-48 hours. After that he will require assisted breathing for 1-2 weeks in the hospital. After that, he will have a recovery time from 2-6 months including physical therapy and some home services as needed. After this they expect little long term lung damage, again, assuming Joe is a healthy individual and he continues on a solid path to recovery from this point forward. The doctor did offer that if the recovery is more prolonged, they can only keep the breathing tubes in him for 2-3 weeks and then will have to resort to a tracheotomy. They also asked our stance on dialysis if the kidneys show signs of failure.

At this point we challenged the doctor's basic assumption, that Joe was a healthy individual. We informed her of his back damage (which she knew), his failed shoulder and thumb on top of his previous failed shoulder and elbow, all within the past 18 months (which she didn't know), and his chronic pelvic pain and the treatments (which she also didn't know). She was noticeably surprised and stated that while it would not change his treatment to date or in the immediate future, she wanted to review his full medical history to evaluate his long-term prognosis and to try to understand is low immune response. We have initiated in getting her all this information.

So that's where we’re at. We continue to discuss what we believe Joe would want, given where he was at when all this started and where it is going. We look to all of you for strength and hope that this will have the best possible outcome for our dearest friend.

John

Ups and Downs

Todays update:

It had seemed as though Joe was making small amounts of progress on Wednesday. According to the nurses his lungs where sounding clearer but the decision was made to continue with sedating him until this Friday.

This morning it was reported by the doctors that Joseph has experienced a partial collapsed lung. They where going to attempted a procedure to re-inflate his lung but due to potential complications they have decided against such measures. So for the time being his respiration has been shallow and the doctors are watching to see if his lung will inflate by their own. We are still unsure if they will revive Joe on Friday due to this latest development.