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Wednesday, May 23, 2012

Never thought I would be happy to have the flu!

So, the nausea came back today with a vengeance. And I started freaking out. "I am finally getting my life back. Please don't do this. Not another set back!" This is a continuous loop going on in my head all day. And today really wasn't the day for this to happen, I was so busy with getting Gabriel's things settled.

By the time I get home for the day I am feeling horrible: nausea, sharp pains in my tummy area (where they are supposed to be by the way, not way up by my heart!) and body aches. So now I am really freaking out. 

Gabe comes home shortly after I got home and he gives me a kiss on my forehead and he looks at me with concern on his face. And he says "Mom, are you ok? You are burning up!" So I take my temperature and sure enough, I've got a fever of 101.6. 

What a relief, it's only the flu!

Is this how it's going to be for the next year? That I freak out over every little thing? They told me that  have to be extra careful for the year following my surgery. I am going to drive myself nuts!

Friday, April 6, 2012

I know...It's been a while. :(

I had my repair surgery November 28, 2011.

Getting checked in went so smooth. Everyone was so kind and reassuring. Sherri and Michelle were at the hospital with me. They let Sherri come back and spend some time with me before they took me back to start the surgery.

It did not go as planned. There were a few complications. The surgery ended up being 10 hours instead of 8 hours. My body had started to give signs that it was not tolerating the surgery so the surgeons took a "break" to give me a chance to rest. Then my stomach would not move down to where it was supposed to be, so they ended up having to open me up. They got my stomach, intestines, colon and pancreas back into place. They placed a mesh where my diaphragm muscle should have been. They also did the Roux-N-Y to repair my stomach and to bypass my esophagus. I was supposed to be in the ICU for 24 hours, but I ended up being in the ICU for over 48 hours.

After the ICU I was moved to a private room. The original plan was a stay of 5 to 7 days with a small chance of up to 14 days. It turned into a 21 day stay due to complications. those complications were fluid on the lungs twice, an infection they could not locate the source for, a reaction to the Heprin shots to keep me from forming blood clots, could not get my blood counts to level out, could not get the vomiting under control, my feeding tube was leaking stomach bile so bad that my left side was burnt from under my breast to my groin area, and the swelling in my legs and feet was extreme.

It was tough being away from my family and friends for so long. Being away from Gabe for the long was so hard for me. I missed him so much. He got to come visit me twice. But, I was too far away for him to come more often.

I finally got to go home to Sherri's. They wouldn't let me go to my house until the home nurses were sure that I could take care of Gabe and myself. I made it home in time for Christmas!  Michelle came and picked me and took me home.

Sherri and family were a great support and comfort. Sherri and Anza took really good care of me. And my Goddaughter Jordan was my protector. She had to make sure that nobody hurt me and she checked my surgery site several times a day. She's all of three years old! lol Then shortly after New Years I got to go home. It wasn't until March 26, 2012 that I was released from home nursing. And I can now go grocery shopping without using the electric wheelchair and I can take longer walks. I can now eat more things than I was able to just after surgery. Recovery is slow, but it is recovery! At the moment I am struggling with depression, anxiety and lingering pain in the surgical site, mainly the skin. But, this is normal and I will work through it. I have come too far to let these side affects beat me. There is still some swelling in the stomach area and the mesh area. But given all the set backs, these seem so very minor I do not worry about them. lol

And Gabe is very happy to have his Mom feeling better and getting back to "normal".

Sunday, November 27, 2011

Surgery day!!!!!

Today is the day. I leave for the hospital in just a few hours. I am nervous, but I also look forward to today. Today is the day I get my life back. Today marks the start of recovery. Today is the beginning of my son getting his mom back.

All of the poking and prodding and x rays and tests, the feeling of being a medical experiment gone horribly wrong, has lead up to this much awaited day. While I do not look forward to the surgery itself, I do look forward to my life following it.

Here's to a new beginning and brighter future!

Monday, November 7, 2011

So not the time to be sick.

This is not a good time to be sick. Honestly, there is no good time to be sick, but the timing now really sucks. With surgery coming up at the end of the month, this could really prove to be a big issue.

I went to the hospital on Friday because my chest was getting really tight and my lips kept turning blue, like I lined them with blue lip liner. They did an EKG, chest x ray, CAT Scan and a flu test. They decided that I have chronic bronchitis. (Big surprise there. Got that diagnosis 2 years ago.) They gave me a cough syrup with a pain medication, no antibiotic. So, I made it through the weekend and called my doctor today. I cannot get in to see the doctor until Thursday. Cutting it kinda close. I only have 21 days to get rid of the bronchitis. And when it gets this bad it usually take 3 rounds of antibiotics to chase it away enough that I am considered over it. I will be very upset if I have to reschedule again. The last time I had to reschedule, it took over a year to get it rescheduled again. So, you can see how this is making me nervous.

I am trying to stay positive about this. I will be over the bronchitis before my surgery. If by chance I am not over it, it will not take a year to get another date. :)

Thursday, October 27, 2011

I think I see the light at the end of the tunnel!

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?!

Monday, September 26, 2011

Pregnancy Loss is still a loss.

I am blogging about this today because for some reason I do not understand, this subject has been heavy on my mind and heart lately. Maybe it is because October 15 approaching and that is the Pregnancy and Infant Lost Awareness Day.

This is something that I do not speak of often. I have learned over the years that it is less painful to not tell people of my lost pregnancies then it is to just keep quiet and not share these painful times of my life. There are lots of things that people say that are meant as comfort, but are simply painful. the most painful one is: At least you didn't have time to bond. So this loss cannot be as painful as loosing a child that was born. And another thing that people say is: At least you lost the baby before it was real/alive.

Let me just say that even though I lost each baby in the first trimester, I did bond. I lost 7 babies, each one of them was dearly wanted and loved from the moment the pregnancy was confirmed. Each one was far enough along to have a heartbeat. After I lost the first baby I told myself with each pregnancy that I would not bond until I knew for sure that this pregnancy would be full term. Yeah, it didn't work out that way. I bonded and lost them anyways. 

There are seven hearts that I will never get to feel beating. Seven sets of eyes that I will never know what color they would have been. Seventy fingers and toes that I will never get to wiggle. Seven sets of lips that I will never get to hear say "Mama". Seven sets of ears that will never hear me say "I love you with everything I am". Seven times my heart was ripped from my chest. Seven times I had to say goodbye before I had the chance to say hello.

So, people please be kind and gentle with your words. Even though a lost pregnancy of a friend may not seem real or alive to you, it is very real and painful for your friend.

Wednesday, September 7, 2011

So disappointed... :'(

I went to the Endocrinologist today hoping to get my clearance for my repair surgery. Soooo not what I got. Instead I find out that I need surgery on my thyroid now. The plan now is to see the thyroid surgeon and set up a surgery date and all the lovely tests that go with that. They were not happy with the results of my thyroid biopsy and given the family history of thyroid cancer feel like this is something that I should not mess around with. And the risks are very high if I do the repair surgery before they get my thyroid straightened out. Then wait 6 months to see if I can then get cleared for the repair surgery. Yes, that's what I said...6 months AFTER the thyroid surgery before I can reschedule my repair surgery. I am beyond frustrated. I am so over it. So done. Now if I could just get my body to accept this, things would be great.