A Long Time Passing

I have missed blogging.  I have not been well and have been going through a lot and am still going through a lot. I have been on the internet mostly through my ipad.  I would have to start a whole new blog to use it for composing post.

I composed this on the ipad and sent it to another computer via email.  Still takes time, but it worked. I will try to do better at writing and also at reading.  I see some of my friends have left their blogs, but hopefully some of you are still around.

I will give brief synopsis (yes, it is long, but believe me it is the brief version) of bad health. I had a paraesophageal hernia (hiatal) since late 1990s. In 2001 I had nissen fundoplication surgery to repair it done laparoscopically. It almost immediately started failing. So more years of acid reflux from it. In 2007 the hernia pulled my stomach into my chest. I had another nissen fundoplication repair done laparoscopically. This time the surgeon used a mesh. I still had symptoms after surgery plus stomach pain. My complaints to the surgeon were ignored. Basically "I'm God... the surgery is not a failure" is what he said and said my symptoms were because I was fat. He did not believe my gastroenterologist that the hernia had returned. Test showed it had returned and an endoscopy my gastroenterologist did also showed the hernia. I broke down and let the surgeon do another endoscopy. He claimed no sign of the hernia. I did not go back to him.

I kept having check-ups and just about yearly endoscopies with my gastroenterologist. He told me in 2012 that I needed to have surgery. I had lost 30 lbs. Yes, I needed to lose it, but it was within about 2 months. I had nausea and vomiting. He said he thought the pain and nausea were from the mesh. I went to a different surgeon. Even though my gastroenterologist had done a lot of test the surgeon wanted another one. At my return visit to the surgeon he said he would not do the surgery. Of course our question: why not? He said because of the mesh. He said no surgeon in this area was capable of doing the surgery... he also said some will tell you that they can. He recommended the Mayo Clinic, Jacksonville Florida.

Surgery 1 at Mayo Clinic 03 Oct 2013 

I have Tricare Prime insurance and they require referrals and authorizations. Takes forever sometimes. Finally got it and saw a surgeon at the Mayo Clinic in Jacksonville Florida. By this time I had lost 40 pounds. I also had to see a gastroenterologist there too. He had me try a compounded drug for a few weeks thinking my problems might be caused by gastroparesis (slow empyting of stomach). The drug was of no help... knew it would not be. Finally surgery approved and still had to wait a couple of months. I was encouraged to keep my weight up. I somehow managed to.

We made plans to stay in the campground at Mayport Naval Station from day before surgery until I was released by doctor to travel home.

 The mesh made a mess of things. The surgeon and team unwrapped the nissen and they had to remove part of the fundus because of the damage the mesh did. So another wrap was out the question. The surgeon anchored the hernia to the diaphragm with a safe bio mesh. All done laparoscopically.

Shortly after surgery I started having symptoms again. In April I had a barium swallow test as the surgeon ordered. The radiology doctor called my husband in and told us both... showing us a picture... that I needed surgery and the sooner the better. My stomach had pulled up into my chest.

Surgery 2 at Mayo Clinic 23 Sept 2014 

Yes, another long wait for surgery. The surgeon that did the previous surgery had left the Mayo Clinic. So had to see a different surgeon there. Insurance denied surgery. We had to do an appeal. Tricare does not have doctors for surgeons to talk to so it was handed to another company. Finally approved.

Plan was explained. A Roux-en-Y (gastric bypass) was to be done laparoscopically. We made plans to stay in the campground at Mayport Naval Station from day before surgery until I was released by doctor to travel home.

The surgery was done. My diaphragm was just about shredded and they managed to anchor the hernia somewhere. On day three after surgery, I think it was, my esophagus decided to shorten. It caused a kink which in turn caused a small leak. They put in a drain. That really hurt! I had it in for about three months. In addition to the kink part of my small intestines pulled up into my chest. I got an infection from the leak and also ecoli in bladder (which probably came from whoever put catheter in before surgery).

I don't know much of what happened in that week. One resident came in told Frank and me that I was septic... be prepared. I think that guy got a talking to when the surgeon found out. The surgeon had already explained the infections... it took a couple of days to figure out the bacterias and I think they did 10 different antibiotics making sure they had it covered until they found out which antibiotic would work. I stayed in hospital 20 days and still looked like death warmed over when I left. The doctor wanted us to stay in area which we had planned on anyway. I think he let us leave the hospital so we could get some rest. In about a month I was strong enough to go home.

Surgery 3 at Mayo Clinic 18 May 2015 

We knew I would have to have surgery again. I have been on the feeding tube since day 3 of last surgery. I was able to eat again and was down to one can of formula in March. We had our granddaughter that day and I just could not get comfortable. My whole rib cage hurt. I finally told Frank I needed to go to ER. He called his sister to take Carly to her parents. We spent over 10 hours there and did not see a doctor until that last hour. They gave me pain medicine in IV and I had blood work and a CT scan. The CT scan showed more of my intestines pulled up into my chest and my left lung pressed against my ribs. I got a script for pain medication and went home very drugged and tired.

I saw a PA at my gastroenterologist's office a couple of days or so later. She talked to my gastroenterologist and he said I needed to go back to Mayo clinic as soon as possible. I got an appointment... thankfully with same surgeon. None of what happened was his fault. It was just how my body reacted and no way could he predict that.

There were no openings until May... so more waiting and praying that I did not have an emergency which would require being airlifted to the Mayo Clinic.

This surgery had to be "open" and there had to be a thoracic surgeon to help. He would take care of the lung part. The thoracic surgeon told me what all he had to do... crack two ribs and muscles cut.. and I said it sounded painful. He said it will be. You will be in a lot of pain for months. Yep, scared me, but I had no choice but to have surgery.

I woke up with two chest tubes. There was fluid in the lung and thoracic cavity. I still have a small amount in left lung. I did okay the week I was in hospital. Tubes were removed. I got out on Memorial Day.

The next Tuesday I started dry heaving. Very late... after midnight I think... I awakened Frank. I was dry heaving and the Zofran was not helping. We spent only about four hours at the ER. They got the nausea under control.

About six Wednesday evening I told Frank we need to go back to the ER... the dry heaving was back and I could not control it with Zofran. We waited forever in the ER waiting room. I felt sorry for the people that heard me. i was given Zofran and Phenagran by IV again. It was under control again except when I had to get up and go to bathroom. The nurse that was about to have me sign the release papers saw me dry heaving again. They did a CT scan and my surgeon had me admitted again.

The CT scan showed everything was in place, but there was edema. Swelling of esophagus and diaphragm area. It happens in only about one percent of patients. They tried steroids until the next Monday and inserted a tube in my right nostril to drain mucus. The steroids did not get the swelling down. An endoscopy and dilation of my esophagus on Tuesday was done and it helped a little, but not enough. They did another on Thursday and I was much better. I was released from hospital a couple of days later.

I had another endoscopy with dilation of my esophagus in June and another in July. My esophagus is now in the lower average size range.

I am doing well. I still am having to chop my food up fine and cannot eat much at a time. I am slowly reducing amount of nutrition I get from feeding tube. At present I have three cans of nutrition at night. That gives me from about 9:30 am until 7:30 pm with having to carry the feed bag around. Hopefully in a couple of months I will do well enough the feeding tube can be removed.

My rib cage is still giving me a lot of pain. I have reduced Oxycodone down to two doses most days. Having to sneeze is awful. I scream every time with pain. One of these days the rib cage pain will be gone.

Next post I will tell you of the blessings in my life.




UPDATE 18 MAY 2016

It has been a year since my last surgery and 7 months since feeding tube removed. I have lost between 6-8 lbs in that time period. Sometimes it is very difficult to eat and my weight drops. After this last drop I managed to get the we...ight back up.. brownies will do that. I have to eat too much junk food to keep my weight up. Brownies probably have more nutrition than a lot of other foods 😃 I still eat something every two to three hours during the day. Tender cooked meats, well-cooked veggies or fruit except an occasional raw banana. I need to chew my food well. I have tmj and all this chewing does not help that problem. Some foods are difficult to swallow like bread. I can usually get a sandwich down, but sometimes I cannot. The same with biscuits. If meat is dry it is difficult to swallow. I saw my gastroenterologist, Dr Knepp, last Friday and he said it may never get better. He did not want to do any test right now. Just see how I am in a few months. Which sounded very reasonable to us.

I still tire quickly. I can sometimes manage two short-mile walks in a day. Most days it is just one. I do get up and walk around the inside of the house and around the yard. I can do a load or two of laundry. If there are not many dishes I can do them. Not sure why it is more painful to do dishes than laundry. I straighten the bed covers and I can run the cordless sweeper for a minute or two.
Doing anything is painful still... even walking. The pain is mostly in my left ribcage. It is in what is called the intercostal muscles. These are the muscle that cause the chest to rise and fall when you breathe. If you have ever had a bad cough and your rib cage hurt when you coughed you know which area I am speaking of. I am seeing Dr Matthews now for the pain. He has helped a small bit with injections. The intercostal muscles/nerves have not responded to them. In a few weeks he will do nerve blocks with phenol. Hopefully it will quell the pain. At one time I was taking just one oxycodone, but had to increase the dosage. Trying to do more creates more pain... doing less creates more pain 😟 A conundrum.

Mentally.... there are days of depression or minutes of it to deal with. I try not to let it get a stranglehold on me. I crochet, play Words With Friends, and play a jigsaw app to keep my sanity.
Spiritually.... When I awaken in the mornings I praise God for giving me another day. I do falter and ask: why me? why us? Frank has been right by my side seeing that I get the best care and doing what is necessary to get me well. I thank Father for guiding me to a loving companion
 

UPDATE MAY 2017

I had to stop my mile walks. My feet are hurting.  The neuromas I had removed in 2012 are back and I hurt my left foot back in February.  I caught my little toe on one of the kitchen bar stools.  It still has not healed. They say no fracture and probably a neuroma has formed.  Injections have not helped.  Will have to have surgery before much longer.

I am have a very hard time swallowing and have lost a few pounds.  My local GI doctor does not feel comfortable doing an endoscopy because of all my problems.  I have had severe diverticulitis and he will do a colonoscopy in August.

UPDATE JULY 2017

I  went to Mayo Clinic and saw Dr Frances and her NP, Lois.  I liked them and them explained things well.  The motility of my esophagus is not good at all. I had an endoscopy and was diagnosed with Barrett's Esophagus... precancerous cells.  My med was increased to twice a day.  They dilated my esophagus to 17 mm.  I am to come back in two years for another visit, but we all expect I will be back in a few months.  It is still difficult to swallow some things... especially pills.