This one is lengthy.
Last week I went to see an Endocrinologist Surgeon. Got good news and bad news. Bad news first. I have to have my whole thyroid removed. I am a high risk for thyroid cancer and my biopsy tests are not good. The good news: He has cleared me for surgery. He won't do the thyroid surgery because the CDH makes the thyroid surgery too risky. And to make sure that there was no misunderstanding the seriousness of this, he called Dr. Luketich, my CDH doctor, directly rather than go through my GP. He also started me on Methimazole to level out my thyroid levels. Woo Hoo!
This week I went into Dr. Luketich and got a Berium Swallow test done and met the other doctor, Dr. Levey, who will also be doing my repair. He went over surgery with me along with all the possible situations that could happen and all the things that could possibly go wrong. Apparently my case is not so clear cut because of how long it has been as bad as it is.
Brief overview of my CDH: I was born with a Stage One hernia. More than likely, even if it was caught then nothing would have been done at that time because everything was pretty much working as it should and the surgery would have been an unnecessary risk. (This was 43 years ago and not much was known back then about CDH.) They are thinking that I became a Stage Four hernia during my pregnancy with my son. He's 10 years old now. That's when there was a notable change. My stomach, colon, most of my upper and lower intestines and part of my pancreas are in my chest cavity. My doctors in Tennessee failed me in a huge way. I was told that I was just getting old. I was 33 years old. How is that old? I moved here to Pennsylvania June 23, 2008 and by July of that year I was told that there was something very wrong with my diaphragm and that further testing was needed to know exactly what was going on. In October of 2008 I had a diagnosis of Severe Diaphragmatic Hernia. Then last year, after getting some medical records from my childhood they decided that it was CDH.
So, my repair is scheduled for November 28, 2011, if Dr. Luketich does not go out of town for Thanksgiving. So far we're still on for that date. I have some tests to do first, but see no problems with them as I have already had them done before and "passed" them when we were going to do the surgery a year ago. (Yes, a year ago, my GP held that one up for over a year now.) I need to get an Echo of my heart, a venous doppler, chest x rays and some blood work. They are keeping a close eye on my heart because it is so crowded. So far, knock on wood, my heart is in good condition.
This is where it gets a little complicated. There are a lot of "ifs" that go with my case. If everything goes the way it's planned we are looking at an 8 hour surgery. In this case, it will be a completely laparoscopic surgery, with a possible over night stay in ICU on a vent and a total 5 day stay in the hospital. With this case everything will go back into place without a hitch, the esophageal gastric bypass (a Y bypass) will cause no issues and there will be no need of extra procedures. This is what we want. But, they are pretty sure this is not what's going to happen. What they think is going to happen is that we start with the laparoscopic surgery, but end up having to open me up. They think that my stomach is going to be stuck because they are saying that I have one of the biggest Stage Fours that they have seen and that it has been like this for so long. If my stomach is stuck, besides opening me up they will have to deflate part or a majority of my lungs. This will mean a stay in the ICU on a vent for at least over night, possibly up to 24 hours. Staying with the stomach, it's been up in my chest for so long that it has developed a leather like sack. This sack will stay in my chest and eventually go away on it's own. Depending on how thick this sack is, the thicker it is the higher chance I have of it filling with fluid. If this happens, then they will have to go back in and put in a stent to drain it. Also, there is a possibility of a feeding tube, depending on how bad a shape my stomach and esophagus are in and how the Y bypass goes, if they can do it. And that brings me to the Y bypass. There are many factors that can make this not possible, the biggest being how well I am tolerating the surgery. The second concern about doing the Y bypass is the type and extent of the damage to my stomach and esophagus. If the Y bypass is not possible we are looking at doing a Horseshoe Nissen (a half nissen). If the nissen is the way we go, then I am looking at a higher chance of a feeding tube, with a higher chance of that feeding tube becoming permanent. Now with all of this said, I was informed that they are very concerned about post operation pneumonia. The CDH has caused Lung Disease. And they will not know the extent of the disease until they go in and look. Why so many "ifs"? Because of the the position of my organs and the length of time they have been there, the tests do not show how much damage is done. So, the doctors cannot tell just how bad it is until they get in and see first hand what exactly is going on. If things don't go as planned and we have to go with any one or more of the "ifs", I am looking at a 7 day or more stay in the hospital.
There it is. Lots of things to think about. Lots of scary "ifs". But, I am not trying to dwell on the scary stuff. Yes, I know they are there, but I am choosing to dwell on the positive. There is a light at the end of the tunnel. I am getting closer to getting my life back. Closer to going back to work. Closer to being active again. Closer to following my dream of starting two jewelry lines to support the two charities close to my heart. One I have already started, but would like to do more with, and that one is for Aniyah's Hope. The second one is for CHERUBS. With these lines, the profits would go to each charity. The only monies I would get from them is to cover the cost of the supplies, so that I can keep doing them. How awesome would that be?!