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Monday, April 14, 2014

I can stomach anything these days!

     Hard to believe I last posted on January 16th!  So much has happened since then and I am so happy to report that it is ALL positive.  Not always the case with the disease we have to manage but I am going to thoroughly enjoy sharing this news.
     When I last posted I was having some serious issues with my stomach which had been going on for years.  I had mistakenly attributed it to the RA (a mistake we make far too often) and the various medications we take.  I met with a surgeon in late January and the decision was made to do a repair on a very large hiatal hernia which he explained after viewing my Xrays was so large that 3/4 of my stomach was in my chest cavity AND it was upside down.  Relief would not happen without the surgery.  Period.  
    So I decided to move forward and the surgery was scheduled for March 11th, 2014.  Leading up to the surgery I eased off of the RA medications although the surgeon indicated it was not necessary to stop all of them since the surgery was being done laproscopically and the only suturing would be the anchoring of my stomach to the diaphragm so he felt the risk of infection was very low.  He was more concerned that stopping all of my RA medications could lead to a flare which would not be good for the overall healing necessary for full recovery.  So I met with my Rheumatologist who compromised and I went off the Xeljanz and mtx but stayed on the corticosteroid at a slightly higher dose to deal with the inflammation.  This worked great!  In the meantime when I met with my PCP he indicated that I could stop my Beta Blocker since he thought it was entirely possible that the pressure on my heart by this exceptionally large hernia could be responsible for my elevated heart rate.  Well that too proved correct.  
     I tell you this because it points out so perfectly how critical collaboration is between various medical partners when making decisions about your health.  Keeping all of them in the loop about my health profile was as important as anything else in ensuring that we made the right choices from start to finish.  
     As the weeks passed waiting for the surgery, I grew increasingly more ill in terms of my stomach.  I could eat only the very softest of foods, often only liquids, and had to eat so slowly that I had to watch the clock and wait 10 - 15 minutes between bites!  Even then, often times I would get the horrific pressure and discomfort and just have to wait till the food digested, many times hours later.  To top it off, two weeks prior to surgery I got the flu (despite getting the flu shot) and was the sickest I have been in decades.  I was out of town and had to fly home and was flat on my back for 10 days with fever, headache, sore throat, body aches, cough, etc.  What had me the most concerned as I began to feel a bit better was what if they would not do the surgery??? I still had a little cough and I was terrified they wold not allow me to get the surgery.  Thankfully, that did not happen.  Lungs were clear and so they said it was a go.
     The surgery took about 3 hours and thankfully they were able to do it laproscopically with just 6 small incisions in the abdomen.  The surgery was done at Dartmouth Hitchcock Hospital in NH by Dr. Laycock.   The repair was done including a partial wrap or Toupet and it went great. I was determined to get up and promptly as I was told that was crucial to going home the next day following surgery and so the moment I got to my room I started to walk and did so almost hourly throughout the night....I was able to belch, pass gas, go to the bathroom, swallow and had no sore throat. They started me on soft food the next day and it was great. Pain wise I did not take any narcotic medication as I don't like how I feel on it so I only had liquid Tylenol and Advil which worked fine. I had pain from the gas used to expand the chest cavity during surgery but it was minimal. I had postoperative myalgia that made my neck and shoulder painful for about a week or so but heat, a neck collar and massage helped. I had pain in my chest going to my back but that was caused by the sutures that hold my stomach to the diaphragm.  Those sutures are permanent but the pain will subside.  The pain has eased slowly but surely and will continue to do so. The surgeon told me yesterday that they had to go up under my heart to get at the entire stomach to move it and once moved there was a large space where it had been. As a result over the next several weeks/months organs that had been pushed and cramped will move back into that space and my left lung will re-expand. I already feel a significant difference, feeling the best I have felt in 4 years! I am a swimmer as I report often here and he believes that helped me to cope with the fact that essentially only one lung was working properly....it was all done with 6 laproscopic incisions all of which have healed nicely. Bottom line: I had a very serious and large para esophageal hiatal hernia and I am happy to report 4 weeks post op a totally successful outcome. It was the best decision I could have made...not only do I have no regrets, I wish I had done this years ago!
     I have to take a moment and mention how amazing my husband was all through this challenging time.  I would never have made it through all of this without his unfailing support, unselfish acts of kindness and unending love and support.  He was my nurse, my advocate, my companion and my best friend and I cannot ever begin to thank him enough.  Repayment is virtually impossible but I pledge to love him with every cell in my body for the rest of time!
     I want to also get back to something I mentioned in my first paragraph.  So often those of us with RA will skip over symptoms that should be attended to because we mistakenly think they are part of the RA.  This comes from a very logical place since quite often there IS a relationship.  That said, my situation is a perfect example of not assuming that there is always a connection.  For years we determined that my stomach issues were all part and parcel of the reflux that often accompanies RA due to the many medications I take.  Not so in this case. If you are having discomfort that goes on despite treatment, pursue other possibilities.  I waited far longer than I should have. 
     You really need to become a dog with a bone, not giving up till you get what you want and need!  I had test after test, many due to incompetence, but nonetheless I am glad I did not stop pursuing what I sensed was something more substantial than simple reflux.  It took the better part of three years to figure this out but my life was spiraling out of control health wise so no matter what it was all worth it!  
     One of the nicest and most unexpected outcomes of this is that I am off of several medications as a result of this surgery!  No more Toprol for blood pressure, no more Prevacid for reflux, no more potassium supplements, and NO MORE ANTACIDS ALL DAY LONG!  To be going off of medications has been wonderful!  I am now back on all of my RA medications, gradually reducing my corticosteroids with the goal of getting off of them completely and starting my exercising in just a few weeks.  I have really missed my swimming, biking and treadmill work.  I am also adding Tai Chi to my menu so that will be fun.  
     I am feeling like a whole new world has been opened up to me and the sense of contentment I feel fills my soul!
Nan

1 comment:

Wren said...

Nan, I am SO pleased that you're feeling so much better! Amazing the misery you endured for so long ... I'm glad that you stuck with your hunch that more was going on than a reaction to RA drugs!

I hope your recovery continues smoothly so you can get back to doing all the things you love. It's good to hear from you! :oD