After Surgery - Day 2

Well, surgery went well on Monday. I was amused because the anesthesiologist had to come in and place my IV because the nurses were too scared to poke me. The nurses said they didn't see anything so they didn't want to poke me 8 times. I agreed with them and thanked them for not doing so because I've had some horrible nurses who have stuck me up to 18 times, no exaggeration.

The IV went into my right wrist, so it was in an odd place. The anesthesiologist gave me the medicine to put me to sleep while the doctor was injecting numbing medicine into my back. I yelled ow a few times and he injected more. The anesthesiologist asked me if I felt the medicine yet and I shook my head no. She gave me two small syringes of something plus versed. Then, pushed the Propofol, twice. The doctor realized that my IV wasn't working and went over to my wrist and pressed down on it at a funny angle...and then ALL of the medicine hit. I don't remember anything after that, not even being woken up to see if the spinal cord stimulator (SCS) was working properly in the right area. I woke up and the anesthesiologist moved quickly to unhook my IV because the Propofol was still in there heading to my vein, trying to make me sleepy again. I was amused. The staff at this place are great. I would recommend them to anyone who needs pain management. Their bedside manner is fantastic and it's hard to find a doctor who will actually listen to you first.

After they taped me up, I went into recovery where they fine tuned the SCS with a computer. They gave me a remote where I could control the amount of stimulation myself or turn it off while driving.

I laid down when I got home from surgery and laughed so hard because the stimulation was turned all of the way up. I had to wait for my husband to bring the remote inside.

Last night, I slept without tossing or turning, which is something I haven't done in a long time because I couldn't feel pain in my left knee. I was able to walk around more. It was nice not to have that constant sharp pain along with aches. It was all gone.

Then, I went to sleep the wrong way with my back brace on and moved the leads. Now, they will only work if I'm sitting a certain way or if I lay down. So, I called the doctor and asked them to pull the leads out and that I would like to have the permanent implant done. The Rep for Boston Scientific (who represents this machine I'm using for the SCS) will call the doctor and put me on the schedule to have the leads pulled out tomorrow, which is good because I'm allergic to this tape. It itches like crazy!

So, I will be put on the schedule to have this one permanently and I'm excited about it. If I can get this under control, maybe I won't vomit as much because vomiting is my pain response too.

Then, I can just focus on my stomach. I need to get that taken care of. I have an appointment with the GI doctor on Monday and an appointment with the Nutritionist to go over a diet plan later next week. I'm still severely nauseated, but not as bad as I have been. That could be wishful thinking on part of the temporary implant but we'll see.

I'm just excited to finally have my knee taken care of and to have finally found someone who will help me. Then, I can focus on my stomach.

Pictures of my back are below:

Pre - Surgery Today For my Knee

The doctor is going to do the surgery for the Boston Scientific Electrical Stimulator trial. They are going to put me under, put the leads in, wake me up and adjust the electrical pulses, and then put me back under to complete everything. I will know in a day or three if it works or not. If it works, the doctor is going to go ahead and schedule the permanent implant surgery.

My husband thinks that this will cut my vomiting in half. His reasoning is that vomiting is also my pain response, so it's hard to tell what's gastroparesis and what's my knee. After this, I should know.

I have an appointment with my doctor on Tuesday to talk and follow up. I still need anti-nausea medicine. It helps me function. Without it, I vomit about 8 times a day. It does help keep the vomiting down. I'm just frustrated and tired of vomiting. The doctor wants to figure out why I'm vomiting so much. He says that with gastroparesis that I shouldn't have stomach pain or vomiting. Since the ERCP surgery, I have had less pain. It's no longer sharp and stabbing. Now, it's more like intense stomach cramps.

I had a funeral to go to last Monday and they made me take communion. I was scared because I haven't been able to keep much down. The priest dipped the wafer in the red wine (my stomach can't handle alcohol) and gave me communion. I tried not to vomit up the Body of Christ because it would, in all honesty and jokes aside, make me feel awful. I kept it down for the funeral, so I did not vomit up the Body of Christ on anyone. My stomach behaved until I got home but I had horrid cramps and pain. I also started vomiting again. It's been a rough week with the death of my aunt and then the surgery today. I'm just grateful that I didn't get sick in the church.

I also have an appointment with the Nutritionist next week to go over a diet plan and the insurance doesn't cover it. So, it's going to be $100 a pop to receive advice about my diet and eating habits.

I'm really nervous about the surgery today. The last time I had surgery, I stopped breathing. Now, I'm scared that I won't wake up. I just want to feel better. I'm also worried about the IV placement. The nurses can never find veins. They had to put in a pick line in the hospital. I just don't want to get poked about 12 times.

Well, I will keep everyone updated. My surgery is scheduled for 2pm.

Feeling a Bit Down but I Have Hope

I am feeling a lot better since the surgery. I'm still in a little bit of pain because I haven't healed all of the way. I feel it every time I eat, which is conditioning me not to eat. I'm trying. The vomiting is still occurring but I'm used to it at this point. I'm able to leave my house more even though I still have to carry a bucket. But, that's OK. At least I'm more mobile now that I used to be.

I'm mostly upset because people have been saying that I'm too sick to think for myself - which isn't true. I may have a chronic illness, but I've got full control of my mental faculties. It hurt my feelings but I'm going to move on from it. People are entitled to their opinions, and I can't change it.

I am still waiting to hear back from the knee doctor about my implant and back surgery. I'm waiting for my insurance to get back to the doctor about the trial. I hope to hear something from them soon because I really miss hiking. I'm hoping that the trial cuts the vomiting in half, since that's my pain response also, so that I can get on with my life. As a Geologist, I'm going to be required to hike. Plus, it's something I love.

I thought about trying to attempt to do Yoga on the Wii Fit because I miss Yoga, too. But, I may need a chair for balance. I can't decide if it's a bad idea or not. I can't squish my stomach or I'll regret it later. I may not have any structural damage to my knee but the nerves are still misfiring. I really need to see a neurologist. I need to figure out the cause of all of these nerve issues. Gastroparesis is caused by damage to the vagas nerve and my knee has nerve problems as well. It's just too much of a coincidence to ignore.

Other than that, I'm feeling much better than I have in months. I'm getting used to this illness. I've lost a bunch of weight, so some of my clothes no longer fit. I need to go shopping for new clothes. It's not the way I wanted to lose weight but I've lost about 25 pounds so far.

All in all, I am feeling optimistic. I have hope now. I didn't before. I think I will be able to live with this and be fine. I need moral support, certainly, and not people tearing me down. I know it gets frustrating to listen to someone complain about being sick all of the time, but please be patient with me. I'm trying my best.

GPACT

I found two pictures, courtesy of GPACT that made me feel a bit better. I'm still vomiting, even after the ERCP. I'm still in pain from healing as well.

I met with the knee doctor yesterday and he's just waiting on the insurance to improve the trial.

More information can be found HERE.

So, I guess I'll wait. Hopefully, if I can control the knee pain, the vomiting will be cut in half since it's my pain response. I'm trying to figure out if the vomiting is actually coming from my gastroparesis or if it's caused by pain. It's a hard thing to determine.

I just feel very tired and weak. I have a cold, too. I've been sleeping a lot the past two days hoping I'll feel better.

GPACT could really use your help if you are interested in donating to help find a cure. The information can be found HERE.

They write on their Facebook page:

G-PACT Fact, Day 31- As we close out DTP Awareness Month 2012, we want to thank all of you for your support!

G-PACT is a non-profit which was founded on Aug. 23, 2001 by a group of patients. Most of us are on disability from this (and/or
a combo of other conditions) and saw the needs that so many patients had. We fight this every day along with you. We are all volunteers which can make this very difficult as our health is very unpredictable. You understand! A small handful of volunteers have run G-PACT, which has become international and reaches out to over 30 countries and all 50 states, from hospital beds, nursing homes, and home computers all over the world.

An added challenge is that we do not work from a centralized location and are scattered across the world. While this allows anyone to get involved, sometimes it can also take us a little longer to get everything done.

These are two unique challenges we face as we fight for you. We volunteer up to 80 hours a week during busy times, so we appreciate your patience and support as we work hard to bring you the best that we can given the circumstances! We are inspired to continue our work because we see progress and feel that our work has made an im-PACT.

There is still time to do things from this month. We extended the media letter writing campaign in order to accommodate some events taking place this weekend. Please send us your letters so we can begin putting final details into the project. Awareness and a cure is important as the death of another member harshly indicates.

If you would like to help us in any way to continue our work, we could use additional funding to continue our work, volunteers to lighten the load on a few of us, or other contributions to help us get things done. Increasing awareness is vital and awareness events are appreciated to help spread the word. If you would like to do anything, please contact us at contact@g-pact.org. Donations can be made through Paypal at accounting@g-pact.org or on our website at www.g-pact.org/giving.html. There are many ways you can help, even if not financially. We appreciate hearing from you and knowing you support the work that we do.

We do this for you and we fully understand what you are going through! That's why we are so passionate!

Even though today is the last day for DTP Awareness Month 2012, we do not stop. We do this year round. Look for activities coming up in 2013 and many ways to increase awareness and get involved in some of our political advocacy work. We are encouraged by the approval of Linzett yesterday, and hope to see many more in the near future until everyone has something that works well for them. We all want to eat normally again! :D

Can't Sleep & Surgery Update

I have been awake for two days straight vomiting. My stomach is cramped and my knee burns. I called the Specialist today since it's almost been a month with no word about the stupid Smart Pill Test. I think I may have my records transferred to another specialist. She also hasn't called in my anti-nausea medication and I've gone for two days without it or sleep. Every time I lay down to sleep, my stomach makes strange noises and then I end up vomiting violently. The cramps are almost unbearable. My throat is still burnt and swollen. I'm just so tired and worn out.

I did managed to escape the house for a little bit today to vote. It was nice to leave for about twenty minutes.

I called the knee doctor today too but they haven't received my psych evaluation yet. I had it done last Monday and I thought it would be in by now. The office said they would call the other doctor and call me back tomorrow to let me know what was going on. They also are measuring me for a back brace on Thursday. I hope that will this trial, some of the vomiting will stop. Part of my pain response is to vomit, so I hope if I can control the pain in my knee, that I can tell exactly what's wrong with my stomach.

Read about the surgery and trial HERE.

The more I read about it, the more terrified I become. But, if it will help my stomach and my knee to stop feeling like I set it on fire, then I'm all for it.

I need to call my OB/GYN and talk to him about the Lupron injection as well. So many phone calls!

I hope that I can sleep tonight. I also hope the doctor calls in my medicine soon. I'm tired of doctors and surgeries. I've tried to keep myself distracted with TV, reading, and games but it's not working. I've thought about teaching myself Spanish.

Anyway, this is going to be a short entry because I need to go take a shower and try to sleep before I become less coherent.

The Knee Doctor & GP

I managed to wake up early for an appointment with my knee doctor. I explained to him that I have been having issues with my left knee, which the gastroparesis has made worse because I keep knocking it into the toilet. He is going to send me to a pain management specialist. He says I might need an epidural or something that he is not qualified to preform.

I've only vomited three times today, which I consider a great achievement. I also found out that Dinty More is gluten free, which makes me happy! I love beef stew. I ate a small amount of it because my stomach won't tolerate much more than that.

So, the doctor put me on Hydrocodone 7.5/500 and Zanaflex 4mg. I know that the Hydrocodone can cause slow gastric emptying as well but I'm in so much pain that I need something to control it so that I can sleep. The Zanaflex actually does wonders for my stomach and has gotten all of the cramps to relax a bit. I hope that I'll be able to sleep normally tonight.

In the morning, my GI doctor will go over my biopsy results from my colonoscopy. He said everything looked normal, so I'm not going to worry myself about it just yet. He is also making me an appointment with a motility specialist, we'll see how that goes. My husband thinks that I should give acupuncture a try. I've never done that before but I'm open to almost anything if it will make my stomach stop hurting.

I'm still on the search for a new General Practitioner. I need a doctor close to my house. The hard part is going to be trying to track down all of my medical records for her office. I don't even want to think about that right now.