No, I did not fall off the face of the earth.

Most of my friends and family know what has been happening since about September of last year. However those of you who may not know me so well I apologize if I just fell off the face of the earth. I have been having some major health struggles. I have been in and out of the hospital and had multiple surgeries.

I went into the hospital n October 26th of last year with simple stones in my bile duct. I say simple because for most people this would be taken care of with a simple ERCP surgery and then a day later you would be sent home. Well this being me it did not go so well. I ended up having 2 failed ERCP surgeries at one hospital over the course of a week. Then they transferred me to another hospital for a specialized ERCP with ultrasound. This was the beginning of a slew of mistakes and fumbles on the hospitals side.

After I got to the third ERCP surgery they noticed some fluid that had leaked out from my intestine and I was in a lot of pain. Normally doctors would monitor this situation for 24-36 hours before going in and doing more surgery just to see what might happen. After all it was not a huge amount of fluid that we were talking about. About 1:00am on Oct 30th a surgeon walks into my room after my poor husband who at this point had had maybe 4 hours sleep in a week had gone home to sleep. Says to me he is taking me into emergency surgery. I freaked out as he tells me if he does not go in now I will die.

I called my husband (he had just fallen asleep) told him what the doctor said and told him he had to come back NOW. He then in turn called my mom whom I had not been speaking to for a while (mostly over stupid stuff, but that it another story). My husband gets to the hospital just as they are wheeling me into surgery so he has no chance to talk to the surgeon to tell him he does not approve. I was so drugged I was in no way able to make any decisions.

I guess my mom showed up a little bit later sure she had made it too late and I was already gone (passed away). On the way to the hospital she had an overwhelming feeling she had lost me. As it turns out I did code on the table, but I came out of it. This happens in every surgery my blood pressure drops to nothing & my heart will stop (because of the carcinoid syndrome). Of course it is a little more complicated than that but that is the gist of it. I did come out of it ok. They ended up having to open me up from sternum to just below my belly button. I use the term “had to” loosely because as it turns out it was not needed.

I was in ICU for 36 hours then put into my own room. I think I was sent home a week later with a fever mind you. Over the weekend at home I get very ill again & less than 3 days later was back in the hospital with a 10.8cm abscess. I spent the next week again in the hospital and then sent home a week later with 2 drains this time to drain the infection from the abscess. This was just in time for Thanksgiving. We spent Thanksgiving at my sister’s house and had a wonderful time.

I think it was a week after than when I started to have problems yet again. This time food was not staying down was loosing more weight (I had already lost 30 pounds the previous 2 months). Found out they had damaged my pancreas & duodenum during surgery to the point where my new surgeon was skeptical if I would be able to function with out yet another surgery. Problem being this time was I was not strong enough to survive another surgery at that time. So my only option was for them to put in what is called a PICC line (like an IV only directly into an artery next to the heart) and gives me what is called TPN (IV nutrition). In other words I could have nothing by mouth except sips of water & medicine.

That was 6 weeks ago…. I am still on TPN with nothing by mouth because my body has not healed. Right now I am in a holding pattern. I watch my family eat meals, which really sucks. I want to eat. Everything smells wonderful looks wonderful yet it is all hands off. My surgeon and doctors are still unsure how well I will do if they go in and do the surgery that is going to need to be done. Let alone survive it. The after effects of this surgery are kind of scary as well. It is a very involved major surgery. They are not even sure which surgery I will need. I do know I will be in the hospital for a minimum of 14 days.

I have to say my husband has been a saint in all of this. I have not been able to do anything in several months. He has had to not only take care of the house and PA, but he has had to play nurse for me. I have to say he is darn good at it all. He has the preparation of the TPN and the changing of the tubing and everything down to a science. He is so good he flushes the ports for me with the saline and is so gentle and loving about it all. I am very lucky to have someone who is willing to do so much and make sure I am taken care of.

I wish I could say this was all over now and everything would be fine. However right now we are smack dab in the middle of it all. With so much still up in the air and the fact the doctors can not make up their minds I am having a hard time keeping it all together. I can honestly say this is one of the hardest things I have ever been through.

I am still around & fighting.

This is during my last hospital stay. The gown I am wearing was a gift from my good friend @LaurieMit and the zebra stripe is the ribbon for Carcinoid Cancer

This is during my last hospital stay. The gown I am wearing was a gift from my good friend @LaurieMit and the zebra stripe is the ribbon for Carcinoid Cancer

  • http://30daysofautism.wordpress.com Leah Kelley

    Thinking of you… and sending positive thoughts… ((Hugs))

  • http://rowrowyourboat.wordpress.com rowrowyourboat

    I came to this page from someone else, and as a fellow TPNer I just wanted to say hi. Can they transfer you to HPN? Or is that too risky? Sorry I don’t know anything about your situation, but I do know the long stays in hospitals, and with that an overwhelming desire for a break and your own bed.

    • http://danidawn danidawn

      I don’t know what HPN is sorry. They did try to cycle my TPN so I would not be on it for 24 hours a day, but my blood sugar crashed to fast. I think the most difficult thing about all of this is the fact I have always been very independent and now I am dependent on everyone. I can not do most things for myself not even care for my kids with out help which is so frustrating.
      I went to your blog and read some. I will have to go back when it is not 2 in the morning LOL. Thank you for commenting

      • http://rowrowyourboat.wordpress.com rowrowyourboat

        Sorry, I think I misread what you had written. HPN, is Home Parenteral Nutrition. I wasn’t too sure if you were still in hospital or not. I’ve read something about ways to treat hypos in those on TPN, I just can’t bring the content to mind, but it might be worth investigating.

        • http://danidawn danidawn

          I am at home. I have a home health care nurse who comes out 3 times a week. My husband changes the TPN bag every night & takes care of me & our girls. I have been home for about 6 weeks now. We hope to hear soon from the surgeons on what they are going to be able to do for me. I read some on your blog but could not figure out what you are fighting (health wise). I scrolled through a few posts but maybe I overlooked it.

          • http://rowrowyourboat.wordpress.com rowrowyourboat

            I hope they come up with a plan for you soon. No you haven’t missed it, I just haven’t spoken about it much. Primarily I have something called Ehlers – Danlos syndrome, which is a connective tissue disorder, and has caused me quite a few complications, wheelchair user, digestive, autonomic, aand neurological primarily. I also have Aspergers, and a few other bits and pieces. So I’m a mix of things, most Incurable, but I refuse to let it stop me. I do need to do a post about my history, but I like to focus on the here and now.

          • http://danidawn danidawn

            I read some on your blog & think you are pretty amazing. As for coming up for a plan for me I hope they do as well. The type of cancer I have is incurable and rare. I am usually quite positive and don’t let it get me down. I do still have to keep it together for my girls. My youngest is autistic, epileptic and has hypotonia (low muscle tone in her trunk muscles, arms & legs). I can only understand maybe just a small bit of what you live with.