6 weeks post op

Tomorrow is 6 weeks post op…it seems like that should be a magical day of recovery where everything is all better….right?!?!?! That would be amazing, as well as miraculous. I am feeling very impatient at this point.

Impatient with the healing process, impatient with the eating process, impatient with my life in general. I feel like once I get even close to some type of “new normal” I am slapped in the face with yet another medical issue, another surgery, another bill, etc…I feel like I usually have a pretty good handle on all of this as well as a fairly good attitude but I have to admit that I have really been struggling these last six weeks.

Maybe it is the holidays??? This is my favorite time of the year with the kids and family all around. I think that with the feeding tube and not eating has just furthered the sad truth that everything is based around food sadly. Every get together is about who is going to bring what and then there is all the sweets and treats…even not around the holidays is the “want to go to dinner?”, “meet for lunch?”,”we’re having a bbq”, etc. I don’t know it is just more isolating than ever before.

I have been feeling sorry for myself and I know that is normal but it something that I can’t stand and such a complete waste of time and energy. I think it goes along with the isolation feeling as well. Once you have been chronically ill, especially for almost 14 years now, it seems somewhat normal to everyone else. It is not at all normal, for me or for anyone around me.

Enough whining…on a positive note I am healing fairly well at this point. My incision looks fabulous. I still have pain all over my abdomen and lower chest that comes and goes but that is normal at this point. My J tube is just gross…there is no way to glamorize it. The stoma (Gross word in itself) where the tube goes inside me constantly drains. It is disgusting and it is a constant battle changing the dressing to keep it from being on my skin to long and causing irritation and granulation tissue, as well as leaking on my clothes.

Feeding…I am doing great with the feeding itself as well as administering medications through the tube. Introducing liquids and soft foods has not been as successful. I talked with the nutrition specialist from Mayo and my surgical team today and this is not uncommon. Like everything it seems, a couple steps forward and another one back. I am ok with liquid all the time, there is just not a ton of calories in the amounts that I am able to consume so I still need complete tube feeding with liquids. Soft foods have caused a lot of nausea, pain and bowel issues. We decided to back off the soft food some and instead of trying to initiate soft foods as quickly we are basically going to go at the pace that my body wants to. This is great because it alleviates my discomfort from eating but I really want to get this tube out.

It is really a struggle between the easy way of tube feeding and the pain of dealing with the j tube and the pain and effort of trying to eat enough, often enough to get enough calories to maintain my weight.

I hope everyone that takes the time to read this has a very Merry Christmas and a blessed holiday season! Thank you for following my journey to this point….

19 days

Once I arrived at Mayo it was a flurry of activity. I had been given an additional diagnosis of adrenal insufficiency while hospitalized in Kansas. I was seen by my “normal” thoracic surgeon team, pulmonology, endocrinology, general and emergency surgery. I also had a lot more blood work and more imaging done.

They agreed that my colon was herniated into my chest but wanted to manage it conservatively if at all possible due to my extensive surgical history and complications. They were hoping with IV fluids, laxatives and enemas that we could possibly get things moving so to speak. They did tell us upfront that the threshold for taking me to surgery would be very low and if we had no results in two days we would make that decision.

There was no success and the decision was made to do surgery on November 10th. I had already been in the hospital since the 2nd of November at this point. Surgery was quite long and extensive, it took over an hour just for them to get through all of the adhesions to access my abdominal cavity. Once inside they found that my traverse colon was herniated through my diaphragm up into my chest cavity and folded over on itself. That was one point of obstruction. They also found another obstruction in my small bowell from adhesions. Surgery was done by thoracic, general and emergency surgery. After all the repairs were made and the colon placed back in abdomen they placed a jejunostomy tube (j tube) for feeding.

I got back to my room around midnight and started having flashbacks from my previous ICU stay in 2016. Around 3am they called my husband to come back and stay with me. I woke up with 25 staples, a wound vac over that and the j tube. I had already had TPN (IV feeding) started days before as I was somewhat malnourished when admitted.

Fortunately, this recovery was nothing like my stay in 2016. I had pretty steady but very slow progress. The entirety of my stay was marked by “pray for poop” as that was key to going home. I walked and walked and walked some more and continued to have no success. They took out my epidural several days after surgery and thought maybe then my bowels would “wake up”. That didn’t happen either. I kept on walking.

My mouth was so incredibly dry. I had been strict NPO since this started and could not even have an ice chip. Only a mouth swab or hospital mouth spray. All my medications were given IV and eventually transferred to my j tube. I was still on TPN at this time as they wanted to start the enteral (J tube) feeds very slowly and only after they knew I could tolerate water flushes and medication.

The next hope was that transitioning to j tube feeding would help my bowels wake up. They started with trickle feeding which is only 10ml per hour round the clock. I was still on TPN when this started as that amount cannot provide enough nutrition. After 24 hours they began increasing by 10ml every hour until I was up to 75 ml per hour for 24 hours. This is the rate that I was eventually dismissed on.

I finally was able to have that magical bowel moment with help of enema and that was enough to prove that my bowels could work and was able to come home a couple days later that included a special “bowel regimen”. I am pretty sure the pharmacy checker had to be impressed by the amount of laxative, softener, etc products purchased.

My husband had to go home shortly after my surgery because lets face it, one of us has to work and take care of our family. Luckily, I am blessed with a husband that has been able to manage it all for years and never once made me feel like less of a partner, mother or anything else.

My mom came up the day before he had to leave to stay the remainder of the time with me. My middle son also came up for three days after working a 24 hr emt shift. I was dismissed finally on November 21st. We didn’t get away from the hospital until mid afternoon and my amazing mom drove us straight through to home. We arrived shortly after midnight. I know we both wanted to stop but the thought of unloading me and just the things to take care of me overnight was hugely overwhelming and we just wanted to be home so badly.

The 22nd was spent mostly sleeping and seeing my family. The 23rd was Thanksgiving. I was so looking forward to be home for Thanksgiving but I didn’t think about how hard it would be to be surrounded by food that I cannot have. I was actually fine while everyone ate and just stayed in the other room, but after dinner I absolutely fell apart in front of everyone and my wonderful hubby got me back to bed.

The weird thing is, I am NOT hungry in any way. I don’t feel full, but I don’t feel like I need to eat either. TV commercials have bothered me occasionally, missing out on holiday baking is a struggle, but it is all mental. I really haven’t had an appetite since I lost my stomach but had gotten back into the habit of eating and eating frequently in an effort to try and keep my blood sugar from crashing. With the j tube there is no hypoglycemia. That has been an amazing benefit for me!

I have been able to increase my feeding to the maximum rate I am allowed at 125ml per hour. I have to have seven cans of formula daily. At that rate it takes 14 hours of my day. I can choose those 14 hours, I can even split them if I want to but that seems like more of a pain in the ass than it already is. I thought that I would try and do the feeding during the night and morning hours but I toss and turn so much that I am always kinking or pulling on my line and then my pump beeps and no one gets any sleep. And lets face it, I don’t have a lot to do during the day. So I mostly feed during the day and all evening.

I can be mobile, I have a special backpack that my pump and bag of formula fits in. People stare some or look at you with pity, but hey this is my life and I am still here. Don’t be sad for me. I have a blessed life and I don’t ever have to look far to see how great my blessings are. Could my life easier, heck yeah! I would love to have my old self back but that will never be a reality. I would love for all of my medical expenses to disappear and take away that stress. I would love for my family not to have to worry about my health.

I have had some especially hard days lately as I still fight my appeal for my long term disability benefits from my previous employment. My social security disability is being reviewed at the one year point. It is unreal to me to live my reality every day and continue to have to prove that I am disabled. I have been ill since 2004 and I worked full time until my employment was terminated in the spring of 2016 for exhausting my FMLA benefits. I didn’t choose to quit working, I didn’t choose to unhealthy. But since I have so many different conditions I am unique and don’t fall into specific conditions that I have to prove my illnesses more often than most. It is mind blowing. Trust me when I say that being sick is a full time job and then some…..

Gut Feelings….

Back at the end of May, we were back at Mayo for an additional incisional hernia repair that developed. It was an “easy” surgery and we were home pretty quickly. When we got home I ended up back in the local ER with abdominal pain and a diagnosis of a bowel obstruction. This was another week in the hospital being NPO, receiving only IV fluids and suppositories. Not a great time.

This leads into all summer I have felt that I still had some type of obstruction. I told my local drs, er drs, and my mayo team during my visits in July and August. I had X-rays and scans and was told that there was a lot of stool in my colon but no blockages. OK…who am I to disagree, I am just the patient.

I kept having very severe bouts of pain that would physically take my breath away but didn’t last terribly wrong and it was just explained as pain from adhesions. The first part of November I was admitted to the hospital locally again due to a flare up of my asthma/COPD and possible pneumonia. I had also passed out at home a couple days before from very low blood pressure.

My lungs were improving and then while in the hospital I was hit with the breathtaking pain again. Of course all my family had just left for the evening. I sat there clenching my abdomen waiting for the pain to go away but it just kept getting more intense. I called my nurse and she basically blew me off. I waited several minutes and called her again and told her I wanted her to call the dr. She rolled her eyes and told me it was probably gas. She came back in the room and gave me some milk of magnesia and again told me it was probably gas again. At this point I am crying. I ask if she has called the dr yet. No, she wants to see if the milk of magnesia helps me first. I am begging her to call the dr, she rolls her eyes again and walks out.

At this point I call my family and ask them all to come back. I KNOW that something is terribly wrong and I cannot get my nurse to even page my dr. Long story my family gets back and this nurse is just as terrible to them. We ask that she be replaced and and get the nicest nurse ever. Drs are called, scans are scheduled and now finally after hours of excruciating pain, they are finally ordering me pain medication. They start dilaudid and it does nothing. It seems like it takes a truckload of it just to get to where my pain is manageable.

I have CT scan and my bladder is about to burst from urinary retention, I have an ileus and what they believe to be an obstruction and part of my colon is herniated up into my chest through my diaphragm. I am immediately catheterized to empty my bladder. That in itself was a huge relief. Then we finally got my pain to a tolerable level.

The next morning mayo was called and they said they would just manage my care from there over phone and video. We were so relieved to not have to leave. Moments after we celebrated that news with our pastor who was visiting. An hour or so later, another call came from Mayo. My team there had furthered reviewed my scans and wanted me there for treatment. Arrangements were made for me to be flown by lifeteam from Kansas to Rochester, MN. This happened first thing in the morning. I was taken by ambulance from the hospital to airport and loaded into the lifeteam airplane. These are the most awesome caring people ever. I had a PA and a paramedic as well as pilot and copilot with me. The total flight was an hour and 45 minutes. This is usually about a 9 hour drive for us.

I arrived at Rochester airport and was picked up by an ambulance there and then take to Mayo Clinic St. Mary’s Hospital campus. This is where my “team” of drs are and where all my prior visits and surgeries have been at. I was alone when I arrived as my husband was driving up so we would have a vehicle to get back home. Little did we know that this was the beginning of another long stay and surgery. Thankfully only 19 days this time……

angry, anxious and being an asshole

My new continuos glucose monitor.

My shelves of medications and medical supplies and devices…….the pharmacy loves me….

Yep…I haven’t posted for a while as I have been struggling with many things. First, of all I know that by putting things out in a public format for the world to see can cause a lot of good and inspiration, but I also know that it can cause a lot of criticism. I thought I was prepared for the criticism as I have dealt with that for years….but I just found myself getting super angry.

I am very open about my journey and my struggles. I also try to share the good in my life as well, because nothing is ever 100% bad. I started hearing things, getting some messages and hearing things that other people said to others. I’m not gonna lie, I got my feelings hurt. It doesn’t matter who or what was said and it should not bother me but I am human.

So…not to give the critics too much power but to also clear some things up…here goes. Now that I am super thin and try to take care of my appearance, a constant that I hear is how I great I look. I try to look good….my scars are for the most part all hidden under my clothes, my illnesses are not visible on the surface. Just because you cannot see my pain, my scars, my anxiety, my illnesses…believe me when I say that they are ALWAYS there.

I have been very blessed to travel some this year. I was able to take Jacob to Hawaii in February to attend my cousins wedding and celebrate Jacob’s senior year. This “senior trip” is a tradition we have done for each of our children. This summer I had to return to Mayo Clinic for post op appt and other consults. I made both of my boys go with me. After my appts we were told that I had to be back the following week. After discussion with my husband we decided to take that week and see Mt Rushmore and Yelowstone Park. My parents took time to meet us and bring me additional medications that I needed and help share the cost of hotels. At the end of August my dad invited me to go to Colorado to celebrate his 71st birthday and jeep in the mountains. We spent some quality time together and were then joined by my mother and daughter and also a cousin. I was also blessed to see some lifelong friends while there. Earlier this month, my husband and my parents and myself took our “baby” to Florida for his “senior trip”. All of this travel was amazing and the memories made are priceless. The only damper is people that have the nerve to question how I can afford to travel, how I can travel if I am really this sick….it goes on and on. To put it bluntly, how we can afford it is no one else’s business. How I can travel is with an entire suitcase that is dedicated to all of my medications, medical devices and important records. I also take high doses of steroids every time I travel so that I can breathe and have some energy. There are also many things that I cannot do simply because my body has to rest or I am having a flare up of some type that prevents me from going out. I have been fortunate to not need any hospitalization while traveling. The scariest times were this last trip to Florida. On the flight there I developed a lot of breathing problems on our first flight that worsened on out second flight. Luckily these were brought under control in about 48 hours. On the way home on our last flight I was doubled over in pain and then my blood sugar crashed to 35. I have to say that the stewardess was awesome at getting us what we needed and doing it discreetly so that no one else even knew that I was struggling. Go Delta!

I came home to a letter from my long term disability company that they were stopping my benefits as they felt that I could return to work. I freaked out, went and saw my physician and got his opinion which he had already sent them a statement months ago stating that I was disabled from any and all occupations and there was no expected improvement in my condition. Now I am having to file an appeal and try to get those benefits reinstated. This has completely stressed me out as I cannot believe that anyone would think I would choose what I live with over working. Fortunately, I still have my social security disability but this has made me feel constantly worried about my future.

I also had a CT scan earlier this month for ongoing abdominal pain bowel issues. There is apparently parts of my colon that have herniated up into my chest. It also shows another hernia in my abdominal wall. I am also having trouble with obstipation…like constipation but worse. I don’t know what this all means for me if anything. My surgeon at Mayo had been notified and we are waiting to see what his recommendations are. However, both my local physician and myself highly doubt that I could survive another major surgery at this time. So….we will see what they think at Mayo.

I will lose my COBRA benefits at the end of this month. The majority of those premiums were paid by my long term disability insurance. I am fortunate that I still have insurance coverage through my husbands employment, but not being double covered will increase what we pay out of pocket a lot.

All of these things have been constantly on my mind lately making me angry, more anxious than normal and acting like an asshole to the people I love most. I have been chewing on the inside of my cheek and lip til its raw and has sores now. I have been praying and praying, trying to lay all of this at Gods feet. I know in my heart that everything will work out the way it is supposed to. My mind however, wants immediate answers and resolution.

I will get through this. I also want to say a special “thank you” to the people that have messaged me that have missed my blog, checked in on me and constantly support me. Yo u helped me to remember why I started this in the first place.