I've been staring at the page for what seems like days
I guess I put this one off for a while
Did I see a tear fall from your eyes ?
Or did you laugh so hard that you cried ? Every word was a piece of my heart.....(Bon Jovi)
Well this has been a very very emotional week and today it ended on a very good note. Dad is on his way home!!
Rewind:
Tuesday I had my follow up appointment and was cleared to drive and resume some normal life activities within reason. I do still get very tired and need to take every new day as a gift to keep pushing to get better, but there are still moments that I get annoyed at my limitations. I drove my car on Tuesday for the 1st time and I cant even begin to tell you how amazing it felt, best description is feeling 17 and having that very first moment of ass to driver seat, solo, just you, only you and "o my gawwwd I am driving" and I am gonna cruise the Ave and pick up my friends..ya it was like that. Of course the only place I went was to Dunkin Donuts to get hot chocolate,and since in today's technology world of having cell phones, I sent a text of my happy silly moment to the people that really understand my silly need to brag. What was interesting to me was there was this long line and for the very first time, as I looked around at the annoyed faces that were waiting in line I thought "if they only knew". Waiting for Dunkin Donuts is nothing in the grand scheme of things people!
In the mean time Dad has been sick, fevers and just plain 'ole looking gray and had Lynne and I very upset which lead to Lynne getting him an appointment with me.
I was driven to Lahey by a car service that my Cindy set up for me, Dad followed two hours behind me. My visit was full of laughter as always, I learned that my liver is about 80% back to it's original size but still growing and needing the TLC required to ensure proper growth. I was told to keep napping when my body says so..haha no need to tell me that twice. Naps are my favorite next to laughing.
Dad arrived with Lynne and my Aunt Sheila, I knew in my gut he would be admitted, and I made my concern and wish for him to be admitted to my People. One glance and it did not take a doctor to figure out that he needed quick and critical care. We were told in the very beginning of this journey that he would likely return to the hospital after his transplant, as it was almost common. Recipients are so fragile with all the meds and wound care that any little "bug" comes in contact with a recipient does not have the physical capability to fight. Dad was no exception, matter of fact I don't care how much machismo a man has this will surely take you down a few pegs on the sissy scale. Dad did argue he did not want to go back to Lahey, he was even mad at Lynne for bringing him. My last words to him at home were not very nice. I told him "you can piss and moan and bitch it out but you are going back and I DID NOT DO THIS FOR NOTHING". As much as I believe in what I said to him part of me was praying that these would not be my last words to him. The risk factors in this journey are high for both of us, but I have proven to be the resilient one thus far. I keep forgetting sometimes what I went through myself and I keep forgetting to take it slow too, especially because my Dad just seemed to not be at a place I thought he would be this far out and I was constantly feeling like I needed to take care of him too.
In fairness my father has been living like a sick person for almost two years and even I wanted this to be the quick fix he needed. Well considering who we are as a individuals and as a family, everything we do is always harder, unexplainable and most always the rarest form of anything.
My father presented early as having a urinary tract infection, and was given antibiotics however that was not what the final diagnosis was. Again, when we do things we do it big, better (or worse depends on how you see it) and rare. My Dad ended up with VRE and an abscess on his liver.
Short version of VRE:
VRE infection is caused by vancomycin resistant enterococcus, a type of antibiotic resistant bacteria that can be found in hospitals, and -- more rarely -- the community. Enterococcus bacteria, such as Enterococcus faecalis, normally inhabit the human bowel. However, they can cause infection if spread to other parts of the body, such as the bloodstream. Vancomycin is a drug that is often used to treat infections like these caused by enterococci. However, VRE poses a challenge because it is resistant to this strong antibiotic.
People who are susceptible for VRE infection are those with weakened immune systems, who are receiving antibiotic treatment (or who have previously received treatment for a long period of time), or who are already colonized with the bacteria. Most at risk are those hospitalized for surgery, in ICUs, or for long periods of time. Also, invasive lines or procedures -- e.g., surgery, Foley catheters, and IVs -- are a risk factor for VRE and other infections because they can introduce bacteria into areas of the body that are usually free of microbes.
Well that's the short of it, he was a prime candidate for this. Let alone that he was still on a level 7 of pain and still needing meds. Let's not forget the man has had his chest cracked open for a double bi-pass in 09. Thinking they should install a zipper now. He was admitted into the SICU at Lahey and because it is a teaching hospital he was given every single battery of test and they found a way to beat the VRE. They drained the abscess on his liver (wait isn't it my liver? still trying to figure this out.)
This medical world is so foreign to me but what a crash course I am getting. He was released today, but on heavy antibiotics, oxycodon, and now has two drains that I still need more education on, but I do know that they are called "grenades" (cause they look like little grenades hanging off a tube) The visiting nurse will be over tomorrow and I will get the full education as to what I may need to do for the next 3 weeks while he heals through this process. Visitors are on a limited basis right now basically so that he does not get any germs from anyone. We decided it best to keep this low key until we knew what we were dealing with and because sounding alarms would only make things worse for my Dad, he does not like being hovered over.
For me this was like holding my breath, I did ask the question out loud to the doctors if he was rejecting the transplant, they assured me again he was not. I am never afraid to ask the hard questions and can almost always handle the answers but the only answer I could handle was NO. I kept busy all week moving to Cindy's. Some how I thought this would be cathartic to move and keep brain busy, well all I did was cry because the thought of leaving "home" and he not be there and not knowing what to expect minute to minute was far to overwhelming. I will miss the 2 A.M. movie nights, pain med giggles, the commiserating and comparing of aches and pains but it is also time for my Dad to really own his recovery and find the mental ammunition to get in front of the pain, I know he will. He has come way to far to ever give up and we still have some father daughter things to accomplish.
I have been fortunate in the past two weeks because of my Blog to have met (via internet) people that are recipients, donors, family, friends and significant others of people struggling with Liver disease and it has been amazing. The comments, emails and new Facebook friends have been nothing short of enlightening and beautiful. Everyone's journey is different but in so many ways the same, the one thing we all agree on is that you are never alone in any struggle so long as you are open enough to reach for another hand. I have always been the last to reach but the first to offer, but this journey as changed so much about who I am or rather who I was. It has changed my Dad and Lynne forever too, so I would not call this a set back it is just a another bend in the road of this journey we are on.
One Month and Growing........(pg26)
“A father is always making his baby into a little woman. And when she is a woman he turns her back again.”
Enid Bagnold Jan 29 2011, It is the one month Anniversary of Deliva da Liva!!
I have hesitated to write or to post anything because my Dad has been sick, he was running a fever and really was not looking good. I was scared and trying to figure out what I was thinking and feeling. I was afraid that he was "rejecting" my piece of liver and to be honest I could not wrap my mind around the "what if". Needless to say this journey is one that has had many risks and what if's and sometimes my humor is just is not there. Rejection on any level sucks as we all know, but what I was trying to brace myself for was, well let's just say I was having feelings of guilt, like a child that did something wrong and had a million other emotions that had no explanation. I let Lynne handle this, while I just hid in my room with my personal journal writing words that I hoped would ease the fear.
2/1/2011 It took Lynne and my Uncle Kevin 3 hours to get my Dad to Lahey due to this wonderful weather we are having. I stayed home with a huge case of cabin fever and trying to find distractions until I got word on what was up with Dad.
It turns out that he just had a bug and some antibiotics did the trick. His piece of my liver is working, growing and grafting as it should. My Dad's healing is going to take much longer than me, he did have the worse case of HPS, and was living on the lowest amount of oxygen before the surgery. It will take time for his body to "learn" to be fully functional which for him is frustrating, because he has been living as a sick person for so long that it seems like it will never end. It will, he knows it, we know it but it does not lessen the frustration of not being able to just get up and go.
As for me, I am no longer living like an infant where I was sleeping 4 hours and awake for 2. I can take a shower with out wanting to pass out. I can sneeze, touch my big toe to my nose, my knee to my chin, semi run up the stairs, stay awake all day and eat normally. Now you laugh, well let me tell you a week ago I was still feeling like a just a warm useless body. What is amazing is how every little thing you do every day, from simply bending over to blow drying your hair you take for granted, well they were all difficult for me to do, but everyday I have been able to do something that seems so small but to me is a "YIPPY" moment. The one thing I so need to do is drive, I am wanderer and my greatest joy is the freedom to just get in the car, blast my tunes and roam, but the weather is really hindering this last piece I need to feel like I am back to me. My scar is still a little tender and seriously it is so itchy sometimes I feel like I need to stick my hand down my throat and scratch myself on the inside. I am told this just means I am healing.
So what have I learned one month out from surgery? Never take anything or anyone for granted, it truly is the little things that matter the most. People may offer you help and they have great intentions in their words, but you truly learn who you can count on in times like these. I have a handful of friends that have really stepped up, my gratitude is immense and I believe they know who they are. Family is everything and learning to be vulnerable and ask for help has been a whole new world for me too. I learned that as much as I believe that laughing is the best healer I also learned that crying also has it's place in the process too. I would do this all over again, with out a doubt except the one thing that I believe needs to be in this process of testing is the human perspective. Everything is so clinical, and you have consultations with everyone under the sun and it leaves you just feeling like a lab rat at times. I believe that with in the process every single person that is deciding to be a donor should speak to someone like me to get the "real deal" and be able to ask questions that are based on experience from a person that actually had the surgery and not the people who are performing it. Meeting the Sullivans two days before my surgery was divine intervention, but some things should just be part of the program and not an option. So again, yes I would do this, I have no regrets and this Friday is my one month follow up at Lahey and truly am looking forward to seeing my "people" and share some laughter. I will learn how much of my liver has grown in a month too!
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