Feeling Better 

At last I have some answers. I’ve been dealing with this for so long but the corner has finally been turned and now I can truly begin to heal, or so I surely hope I can!

My initial surgery was over a month ago and I’ve been so terribly ill since then. Many trips back and forth to the hospital as well as Pablo, the drain placed 26 days ago. Pablo was initially working well, but started malfunctioning. I began flushing him a bit more frequently. I continued having fevers and feeling terribly lightheaded and detached from the world. I tried my best to eat and not I felt the same.hing had flavor. I had 3 antibiotics.  My labs still looked the same and still showed the abscess was much smaller but remained. From a 7 cm to a 3 cm abscessed area which is an improvement for sure, but finding out that I can help this to go away faster?  What a golden opportunity to be proactive in my healthcare.

I have never in my life felt so sick.  I have never felt like I would never get my energy back or be able to once again go for a walk without passing out.  I have made one walk since my surgery.  It was a the only day I felt good.  I walked 4 houses up the street and back again.  It was to my dad’s house.  He didn’t answer the door either.  Hubs and I didn’t have our mobile phones either to give him a call, so we walked back down.  The next day, I felt just as terrible as I had previously and remained that way until yesterday.  I do listen and I do everything I’m told to do.  I’m a very good patient.  I know what I have to do and I do it.

After being in the nursing field for 29 years, I should know a thing or two about how to get better, but this has been the absolute lowest point of my existence.  Honestly, I was ready to seek healthcare elsewhere if it weren’t for Dr. Burke finally giving me the answers I was seeking on Thursday.  Hubs took me to my sinogram, where dye is placed into the drain and then x-rayed for drain placement and to see how much fluid is still present.  It’s really very cool.  What we were shown is that although my abscess is much smaller, the abscess is made up of pancreatic enzymes which is trying to eat my body instead of processing food because of where it has leaked to.  There is a small pathway which has formed which we need to help seal up.  We can do this by flushing and creating the proper pressure in there, a neutral pressure, allowing the nasty, thick drainage from the pancreas to drain.  If I gavage it with the saline 5 or 6 times a day, it will allow the thick drainage to flow more freely and therefore, it will be released more easily.

Guess what!  It’s been working great!  No more fevers, and I feel much improved.  I sure won’t be running any marathons.  In fact, I’ll have to work up to walking any great length again, but I’m getting there.  And I’m planning on more writing.  I’m able to focus a little more clearly already.  Just think, maybe, just maybe, I might get a little bit of my summer after all! Wouldn’t that just be awesome!  I know the Hubs, the kids and I would be so thrilled.  Thank you for all the prayers and good wishes.  Keep them coming.  You have no idea how much they mean to me.  Your kind thoughts are so wonderful.  They truly mean so much to me.  I can’t thank you enough for caring about little old me!

I Should Be Sleeping, But…

Sleep. I do a great deal of that these days. Yes, I feel guilty about it at times, but I really need sleep. If I’m going to gain strength again, I need several things with sleep being one of those things.  I also, ironically, need, exercise which isn’t happening as I had hoped it would, but I’m so tired  lately. I try so hard to do everything right. 

    They tell me work on getting your appetite back. Work on exercise. How does one do this when feeling worse than they did after surgery? My labs revealed that I still have an infection. In fact, my labs haven’t changed in 3 weeks and 3 types of antibiotics later, something should improve. Each time I believe I’m getting better, it seems like another little bump in the road happens. I’ll get there though, someday. 

    I have another doctor’s appointment today. I actually will be seeing my buddies in interventional radiology. This is the doctor that placed my drain over 3 weeks ago. Wow! That’s a long time for a drain! All I can do is take things one day at a time. I pray, a lot. I pray that today, these doctors listen to me, refer me to infectious disease doctor who might get rid of the infection once and for all. I pray for continued patience getting through all this. I pray for strength. I will conquer this. I will be me again. Someday, I will be me again. I will never again take my health for granted either. If this has been anything, it has taught me to be patient, to trust God’s timing and to speak up for myself, especially when no one wants to hear me. Today is a new day full of new promises. Perhaps today is the day life will turn around. I’m an optimist so today I choose to believe good things will happen. 

    Blessings and love to you, my friends! 

    Deirdre xx

    Just Done with the ER

    When you go to the ER and you have 20 years of experience as an RN, wouldn’t you think just perhaps, someone, anyone, might listen to the reason you’ve come in! Logical? Yes. Does it happen? Not precisely. 

    So, I have a drain in my belly, I’ve named it Pablo. Pablo has been doing a great job of draining the nasty infection out. You see, after my complex abdominal surgery, I got a fun and exciting 7 cm pocket of infection. Yep! Nothing like a little nastiness and 3 different antibiotics, placement of a drain and another hospitalization to lift your spirits! But that’s been my luck this last month.

    Yesterday, I flushed my buddy, Pablo, with 30 ml of saline. The reason? Well, always flush it with 10ml but I noticed it wasn’t flushing easily and guess what? Nothing was coming out! What a pain!

    After the usual time given before the next flush, it still hadn’t any output. Not good. So not good because it also was hurting a ton more! Something was wrong. We called the intervetional radiology department who told us to go into the Damn ER! Yuck!

    So, my labs are no different. My WBC is still 18.2 which is high after 3 antibiotics. I’m running another low grade temp too. My platelets are 511 which is high. They did another CT scan to check placement but didn’t touch the actual problem!! The actual drain going inside my body which isn’t working! Does anyone listen? Really hear me?

    The answer is no. All that happened in my long night at the ER IS this. More bills for me, everything is “okay” even though the infection is still there. Oh and the infected goo coming around my tube is also “normal”. And unless my temp which happens every day, gets above 101, no one actually cares. So here I am continuing to know that something is wrong but no one knows or actually gives a cheap until I guess I’m much closer to death’s door! Okay, maybe not quite that bad, but I’m beginning to feel that way! 

    I’m tough and I’ll get through this, but honestly, what happened to doctors listening to you? My dad is a retired doctor and he’s had it with these doctors taking care of me. He just may have to get involved in order to get me fixed up! I’m okay with that. We shall see what happens tomorrow. One day at a time and still the stupid Norco for the pain. If I didn’t have my husband I’m telling you, I’d be off my Damn rocker by now!

    Alone on My Island

    For the first time in my life, I find writing daunting to me. I feel as though I’ve been placed upon a desserted island and I’ll never be rescued. It isn’t that the thoughts aren’t in my head as much as it is the sheer effort of putting it into writing at the moment that is my problem.

    I honestly would not wish my last month on anyone.  I’m so tired and each time I think I’m making progress, I’m somehow shut down yet again. Complications arise. It will end. I know it will. But just for today, I’d like to be normal again. Just now, my island is filled with pain, loneliness and some boredom. I feel very isolated which is to be expected, but it has been so long.

    My Hubs has taken me out for a drive, but I am exhausted after returning, unable to do much of anything only to return to my island. The simplest things seem so difficult and take so much time to  recover from.  I took my first walk down the street. I made it 4 houses and back. I felt completely done. I was lightheaded yet so proud of my accomplishment. The next day, I was useless once again.

    This makes me champion for all those who live like this everyday. They make no big deal over living peacefully in this alternate universe of pain and ultimate boredom. They try to keep busy and interested in the world around them. I know I try, but it is so hard sometimes. I’ve shed so many years just wondering if there is an end to this hell. Of I can escape this, my own private island of hell. Ever? For each positive step forward, it seems to take me back 2 sometimes 3. I feel like one of the lost souls on Gilligan’s Island. My problem is that I was shipwrecked alone. I’m trying my best to remain positive. Perhaps this week will bring positive things. This weekend, well, it’s not over yet.

    As I Lay in my Hospital Bed

    wp-1463944971432.jpg
    My fabulous babies!

    Good evening! Salutations to you all! I am starting to feel a little better from surgery last Friday, but I know I have a very long way to go. There is so much work in the department of my health. Of course that can be a very daunting expectation to dwell on, especially if you are in my current state of altered consciousness! Pain medication is my friend!

    I worry about going home tomorrow because there are always things to do! There are meals to plan for as well as pleasing everyone. Well, I have help and my help says as do i, like it or lump it! That will be my new mantra I’ve decided. I’m not catering to the masses after this surgery.

    I love my family with all my heart. I’m so proud of the fact my oldest came home tonight to care for me me. She washed my face, hair and my back. She went into nurse mode. I’m so proud of her. My second daughter came up earlier and took care of me too with the baby girl of our house. I’m a happy mama knowing that I must be doing something right.

     

    Carpe Diem! Well, I’ll Be Sleeping

    image

    While you all are working away today, I’ll be sleeping and drugged. No worries, I promise it’s totally fine and within the law. I’ll be under anesthesia then drugged for pain relief! Woo-hoo! Go me, for my strange anatomical anomalies!

    Yes, for those who have been keeping up on my posts and my pancreas, the day is here. It’s surgery day at last! Yippee-kai-yay! I am, at last, going to have the great big surgery to relieve the pain from my nearly 4 cm pancreatic cyst.

    With the removal of said cyst, they must remove half of the pancreas and all of my spleen as well. This is my biggest abdominal surgery to date. It is also the most complex which will land me in the hospital for 3-7 days depending on how they perform the surgery. Can I get a hoorah!

    I’ve had all of the emotions this week that one would expect going into such a large and complex surgery. I’ve been mostly peaceful but have also experienced some grieving emotions as well. Why? Well, although I know I will, or should live a normal and healthy life afterwards, I will be more prone to infection due to lack of my spleen, and it’s such a big surgery. It’s scary going under the knife once again. And hey, I am losing body bits. They aren’t exactly the bits I’d care to lose, either, like fat!

    I’ve been waiting patiently and not so patiently to have this taken care of, yet now, it’s here. My Hubs, and greatest supporter, will have to continue to care for me but eventually I will be better. I look forward to having the energy and wherewithal to function like a normal human again! I’m sure the Fam would like that too!

    So here I am, waiting and awake while I should be sleeping in my bed, but sleep won’t come just yet. This will be my 8th abdominal surgery. They need to simply pop in some zippers instead of seeing me shut! Oh well, carry on surgeons. Carry on! And out with the ickiness!

    T Minus 2 days

    image

    And thus we find ourselves here. The hospital called twice, once to pre-register and once to go over allergies and medications. That is fine with me, however, I know I’ll have to go over it all again on Friday morning. Yippee! Oh what fun!

    I am no stranger to surgeries, especially abdominal surgeries. This time is different though. This time is a really big surgery. I admit I’m scared, but I just want it to be over. I was struck by something during the pre-registration call this morning. They asked me to pay my $350 co-pay today. Since when did this start occurring? Isn’t it bad enough that I have a family to support and I’ll have no income to support them with? Now the hospital, which used to take payments, wants that much up front? Seriously? I’m struggling here to understand the efficacy of all this. What happens to those who don’t have it? My cyst is pre-cancerous. This is necessary. I need to get this out of my body. Is this what health care has come to?

    I struggle to understand how hospitals expect me to rate them highly when they want my copay right now. Isn’t this supposed to be about patient care? How did this happen? I’ll tell you how. It happened when the government decided to get involved. I’ve been a registered nurse for 20 years and it’s a recent occurrence that hospitals have been run so far into the red that they have to make things this tough for patients. What if I tell them I won’t be able to pay my other bills if I pay them for a surgery I need? Do you think they really give a hoot? The answer is a resounding no. Hospitals, like every other business, have been forced to think about the almighty bottom line more and more and less about the happiness of their patients.

    You will get loads of surveys in the mail after doctor’s visits and hospital stays. That’s administration for you. They go by numbers. How did our employees do on the surveys? And that’s all we employees are, a number. Luckily, for those we work with, we are much more than that number. We are human. We matter more than that number, but to those above us all, just a number on a survey.

    The same is true all over healthcare which is changing the way healthcare is delivered. Its everywhere, not just in the hospital I’ll be at for my surgery. Everywhere. Too bad the people taking care of you and me aren’t allowed just to do a great job, that which they were called to do, without having government and administration breathing out orders as to how we do what we do. It even includes how long doctors are supposed to take for patients. Yep, you read that correctly. Don’t you like having a time restraint on how important you are! And now, we have to pay for our stay like a damn hotel stay! I guarantee, it’s no Ritz Carlton for my stay! Why should I have to pay first?

    Thoughtfully perturbed in Illinois!

    It’s Great to be Alive!

    dreamscape

    As I sit here eating gummy bears and reading some great blogs, I am reminded that it is truly wonderful to be alive.  Not only am I blessed to have a computer to read all these wonderful blogs, but I have the opportunity to like and comment on so many as well!  If I haven’t gotten to yours yet, don’t worry, I have a lot to get to yet.  I’m getting through them and it’s been a long, long day!  It’s been a day of gratefulness though.

    I went to see the lovely Dr. Choppra today about my pancreas.  What a great man he is.  He instantly put me at ease and said he is very doubtful that this cystic area is cancer.  I could have kissed him for that but opted not to.  I’m sure he would be glad for that if he was aware of it! He set me up for an endoscopy with endoscopic ultrasound and biopsy for next Tuesday.  He doesn’t waste time.  Thank God for that man. Finally getting somewhere and not standing still.  Wow, does that feel good.

    dreamcatcher

    Dr. Choppra also said that I will more than likely have to have that area of my pancreas removed regardless of what the biopsy shows because it’s causing me pain.  I like that man more and more.  Let’s get rid of this bad thing! No, I’m not a fan of abdominal surgery.  I’ve in fact, had more than my share and my belly shows the scars.  I’ve had 4 c/sections and 2 umbilical hernia repairs as well as a hysterectomy.  Yes, I have a very unattractive tummy, but bring it on!  I want this bad boy out so I can get on with living my life! I don’t do patient very well.

    I also got my grubby little paws on my notes from Florida.  Apparently, there is another mass area on my liver.  It looks like a hemangioma which is like a mass of blood vessels all rolled together.  Don’t know what that’s all about but that is going to have to wait until we get problem number one taken care of.  Dr. Choppra said so and I completely concur.

    night sky

    So, in light of all this crazy news, I’m elated!  Dr.  Choppra doesn’t think I have cancer and said he would be very, very surprised if it was based on the fact that it is cystic in nature.  I have a date with him to put nasty tubes down my throat and slice a bit of said cyst thingy out to test it.  I still have the best husband in the world who got me taco salad tonight for dinner, even though I couldn’t eat very much of it.  And to top it all off, I got to go to my son’s hockey game tonight where he made a goal on the goalie who just covered the net, like completely covered the net with his entire body.  My boy was the only one who made a goal on our side!  Yay Liam!!!! Overall, great freaking day!

    Now it’s time to go back to reading some more blogs and making likes and comments.  I hope to actually get some sleep tonight for a change though.  Mornings just come too soon! Pleasant dreams everyone!

    Good Morning

    20150422_083731
    Duncan and Ellie (aka Eleanor Rigby)

    Good morning and greetings on this crisp, sunny Spring morning.  I’ve just finished my very boring breakfast of a half slice of sourdough toast with the assistance of the fur babies, of course.  How does anyone say no to those liquid brown, or black eyes, looking up at you saying, “Mom, please, just a wee bit of the toast, please.  I promise I’ll be a good puppy”. Well, They got the crust since I’m not a big fan of that particular crust.  Now, if I’d been eating my favorite yogurt, they would have a difficult time convincing me for that bite.  I just wish I had room for my cup of coffee or tea this morning, but apparently that will have to wait for a little bit.

    I’m up and dressed and ready for my day, well, as ready as I can be at the moment.  I have to wait for my doctor’s appointment to get here.  That’s the hard part.  The waiting.  I hate waiting like everyone else.  I’m hoping to take a little siesta before I leave, since my appointment isn’t until afternoon. I am finally going to see the GI specialist about my pancreas.  Just to recap, I have had abdominal pain that caused me to go the ER twice.  What was found out at the first ER visit? I have good labs.  Nothing else was really done.  They decided I had some gastritis and a UTI.  I saw my labs and I’m a nurse.  If that’s a UTI, I’m Martha Washington.  That could have been a contaminated specimen, but I took the antibiotics like a good little patient and the pain was okay for a few days.

    pancreas

    I left town and headed to Florida on my vacation, 1250 miles from home.  Guess what!  The pain came back and I headed to the ER in Naples, Florida.  I have to say, the care I received was terrific.  I actually got something for my pain and tests to find out what was going on.  I’m sure I won’t like my bill when it comes, but to have someone actually tell me, “Yes, you do have something on the head of your pancreas and that’s what is causing your pain” was worth it.  The doctor told me it could be one of three things.  Obviously, I’m rooting for the least problematic, a cyst.  Many people get cysts and never even know it.  So that’s one probability.  The next is a pseudocyst, a little more sinister or the last, but least expected, the big C word, pancreatic cancer.  I highly doubt that it is cancer, but all I can say is that at least this thing is on the head of my pancreas and I had pain.  I could have been that I wouldn’t have had any symptoms at all.

    20141114_200014_HDR
    Best Hubs ever

    And now I wait. My labs at both ER’s were good.  No fevers, no pancreatitis, nothing else out of the ordinary.  Just me not being able to eat very much since all this started.  I’m full on very little food.  It’s very strange.  You would think I’d lose weight too, but I haven’t.  I think I look terrible because I’m very tired and that’s not good because I’m supposed to start a new job next week.  But like my husband says, “we have to take care of you first honey.  The job will wait but your health can not.” See, I told you the Hubby was golden.

    Stupid pancreas anyway.  So, now you know what’s been going on in my world.  Squirrel rehabbing, hamster raising, children raising, pancreas babysitting, sleeping, me! Now, if only the dogs had thumbs and could cook.  I’d have it made.  They never leave my side. Granted, they’re usually begging for my yogurt. If only they could get it for me though. Ah, just the thought of a well trained dog, but that’s a thought for another day. Have a wonderful day.  And until next time, I bid you joy and peace.