2 posts tagged “doctors”
First of all, I really just want to take a second to shout out to some of the wonderful people in my "hood. One of the most special young women that I've been blessed to know, Adah, has gone out of her way to ask people to pray for me. She must really have some pull around Vox and people have been coming out of the woodwork to say hello and to send prayers my way. Adah, I want to thank you, from the bottom of my heart. If you were here, I'd give you the biggest bear hug of your life! To everyone of you who have been giving your time to pray for me, OMG! Your prayers are working and I want to thank you all so much. SO... BIG virtual group hug to all of you. I wish there was something more I could do to express my thankfulness. I just hope you know that I really mean what I'm saying. Your prayers aren't falling on deaf ears and they're NOT going unappreciated by me! I love you guys. I really feel like the most blessed and lucky person in the world. I am certainly rich in the area of good friends:-)
Here's where we're at: I was released from the hospital on Easter day because they could find no more veins to give me the two units of blood that I needed at that time. They also needed to give me 3 consecutive units of iron because I was losing iron just as fast as they could put it in. There was nobody in the hospital to put in a central line or a pic line like I needed. I'd been asking for these more permanent lines since I was admitted but the nurses would not even ask the doctors because there was always a possibility that I would be released the next day. Several days later, I was still being tortured with these idiots blowing up every good vein that I had. I was finally told by a supervisor that I could yell and scream and threaten these bastards with the hospital administrator. This is what I'll do from now on. So, I got to go home because, either they discharged me or I was walking. I'm getting mean now. They let me go if I promissed to come back and get my blood the next day.
I came back on Monday. My mom took off work to bring me back to the hospital. I had to go to the "infusion center", where I was told that they couldn't even draw blood from me because my veins were so bad. They work with a lot of cancer patience and people who are notorious for not having veins, and they are generally AT LEAST able to draw blood. They couldn't on me so they tried to get me into the radiologist to do a pic line. Because I was ONLY bleeding to death and nothing more, they wouldn't consider it an emergency and I had to go home and come back on Tuesday, which is today. 8:30 is when they told me to go to admitting to get this party started. I showed up at admitting, Ben taking off work this time (because I'm too weak to drive), and they told me I was supposed to be here at 8:00. It wasn't the hospital's problem that Mom and I were told wrong. NOW I would have to be worked into their schedule and that meant that I might not be seen until 3:00 this afternoon. I was more than a little pissed. It takes more than the loss of blood to make me forget that I have a "temper". At this point, I don't really know what to do because if I show them that I'm as mad as I really am, they could treat me worse and make me wait longer. You just don't know how it will work out with these people. I kept most of my cool. I got my pic line within the hour. It could have been SO MUCH WORSE!!!!! Prayer answered.
It was explained to me that because blood takes 4 hours for each unit to process (that would be 8 hours for me), and iron takes 1 hour for 3 consecutive days, that I would be admitted so that they could moniter me and it would just be that much more simple. I'm packed to stay. Once I got down to the infusion center, they took my blood to see where I'm at today. I DON'T NEED BLOOD! My blood went up a whole point since Easter! Prayer answered again! I can just go home now and come back and get my iron for an hour every day. Not bad eh? God will only give us as much as we can take and I think he probably knew that I was getting redy to kill the nurses up on the "floors". My doctors are such good doctors now and I feel so blessed to have them but they only work out of this hospital. If it gets to the point where I'm feeling postal, I may have to switch doctors again just because I absolutely despise some of the floors they put me on in the hospital. This last stay made me feel like I was in the nursing home. One lesson I've learned is that if you ever have to go into the hospital for any reason, TRY to bring someone with you. I watched some of these people who didn't have family their to back them up not ever get waited on by some nurses. I wouldn't have gotten 1 single glass of water if it weren't for Ben or Amber or my mom. The lady next to me wouldn't have gotten 1 single glass of water. A volunteer changed my bed only 1 day. I changed my bed the rest of the days. The lady next to me laid in her own mess for about an hour before anyone would help her. When they did help, the nurse gave the patient all the stuff to clean herself. She was a 73 year old lady who was weak from loss of blood too. They would NOT help her. I called the nursing supervisor to complain for this lady. We were given semi better nurses after that.
Where I'm at with the doctors: I'm being told that because of almost 100% paralysis in my stomach, maybe the best way to permanently fix me is to completely remove my stomach. I know I've said this before so I'm sorry if I'm boring anybody:-) My ulcers are being caused from the food laying in my stomach, causing acid and eating holes. If I had no stomach, this wouldn't happen. They want to attatch my intestines to my esophagas. Very little of your digestion happens in your stomach (even for normal people) anyway. Your stomach just squishes up your food and technically, you can live without a stomach. The quality of life wouldn't be as good but mine isn't great anyway. I'm in the hospital every other week and my last major surgery that I wasn't supposed to live through just happened in August. They think this might just fix me as best as I can be fixed. The surgeon is going to a conference and will be presenting my case to other surgeons in order to get their input.
There is another option that I think I'm going to choose. They can make another tube (for a total of 2 tubes) coming off the other side of my stomach. They can cut away the damaged ulcerated tissure that won't heal with medication. There is a POSSIBILITY that this might work. They don't think so. This is the general consensus of all of the doctors combined. I think I'm going with this option because it leaves the possibility that I might be able to live a somewhat normal life. They can always take out more stomach if this doesn't work but if they take out everything now, I'll never know if this could have worked. To take out everything just seems so drastic. Besides I want to give this new nutrition stuff that is supposed to rebuild cells, a chance to work. Just maybe, with prayer, faith and a positive attitude it might work on me. I'll never know if I let them take everything out right now.
The other positive thing that happened yesterday was that I signed up for disability. There's almost no way that I won't get it (or so they say) with the amount of hospital records that they have on me. I'll be getting back pay to 2006! AND my kids will also get a little amount of money. Hey! Anything that we weren't expecting is better than nothing, right? I never wanted to file because I couldn't get it through my head that I was REALLY disabled. I think I'm accepting that, for at least a little while, I will be. The good news is that I don't always have to claim disability. I mean that if I ever feel good again, I can go back to work. I guess I thought that once disabled, always disabled. I just hate that label. I'm just too proud for my own good. So proud I'm actually stupid sometimes! lol I'll get my first check anywhere from June to August. Great, huh?
AND another thing is that I took Savannah to get her permit yesterday and she passed! She only missed one question. She has a photographic memory so I was pretty sure that she would. I also took her to open her first checking and savings account that she has control of. I set up overdraft fee protection that won't come out of MY account too! Yay me! I guess I just feel like I need to get things in order in case something really does happen to me. I know it's negative to actually think that way but to me, it's being realistic. Even if nothing happens to me, I don't really have too many good days where I'm out of the hospital for very long, so I need to get as much done as I can while I can do it.
So there it is peeps! Thank you all again and I love you all!!!!!!!!
Has anyone ever made the mistake of putting all their faith in one doctor? You might think because I've been so versed lately in the medical field (mostly because I can't seem to stay out of the hospital), maybe I'd be beyond making this mistake. Nope. I'm a little niave when it comes to some things, like people in authority. To me, doctors were always the ones who you could depend on to give you the "end all" answer. You rarely ever question your doctor. I'm beginning to learn that we should question EVERYTHING. We don't live in a day and age anymore where we can just trust what the doctor tells us. If you receive some information that you just don't understand or it just doesn't sound right, question it. If one doctor doesn't have the answer that puts your mind at rest, ask for a second opinion. I never believed in this because I felt like Doctor A. would be insulted or wouldn't give adequate care if he found out I didn't trust him. It seemed WAY beyond my capabilities to call for another doctor. I finally had to though, and surprisingly it wasn't hard. In fact, it was very easy and I didn't get in trouble from Doctor A. It's almost like Doctor A. respected me more as a patient once I called Docter B. into the equation. He started taking me a little more seriously (or at least the hospital did). The usual saying, "Take this and call me in the morning" wasn't the first thing out of their mouth anymore. I'm so sick to death of pills, pills and more pills, that I could choke!
So here's my story... I was admitted BACK into the hospital last Sunday after not being able to keep even water down. The pain was so intense that it was becoming unbearable. I called my surgeon on Saturday afternoon to tell him this and he told me how to drain one of the tubes that was still attached to me. If that didn't work, he would see me in his office on Monday morning. I really, really tried to wait til Monday morning but I couldn't. It got to where I was not comfortable laying down or sitting up. Amazingly enough, when I went through the emergency room, there wasn't a big wait. They sent me through a cat scan and couldn't find anything that looked like an infection but they admitted me anyway. I wasn't arguing about being admitted because their drugs were SOOOOOO good that it didn't matter to me, I just wanted relief! Apparently, this hospital is known for being the dillaudid capitol of hospitals. Some of the nurses don't like this because they worry about addiction with the patients and as irritating as these nurses are, they're probably the good ones. I'm going to tell you here that if you've ever experienced the kind of pain that I've had to endure recently, you'll not be shy about asking for the dillaudid either! lol Anyway, I stayed in the hospital for one week and a day only to find out that they couldn't help me. My surgeon kept saying things like "You're fine" and "I don't know what to do with you". It ended up that he had to go on vacation and needed me to be out of the hospital before he went. I had physical signs, signs that the other doctors and nurses could see (like a lump underneath my skin covering half of my stomach). I knew I wasn't fine. I didn't have a fever though so he was basing his diagnosis on THAT! I found out from the consulting Doctor B. that what I had was called an illyus. This is a problem where whenever I eat, It just stays and makes a lump in my intestines. Since I have hardly any stomach, my food goes nondigested right into my intestines. Now THIS I can understand but the surgeon, Doctor A. couldn't bother to explain it to me. I guess he thought I was too stupid to understand? The only cure for what I have is time. Apparently the beloved narcotics are only making it worse so I was able to take myself off of them. This is something I've always prided myself on. I can stop all prescription drugs whenever I want (and sometimes it's hard) because I don't want to be under the control of any outside force. I HATE to admit defeat. I'm the first one to ask for them (narcs) though during the period of time that nobody questions why I'm taking so much! lol I seriously love the feeling of no pain:) So, the more time I spent in the hospital, the more the nurses insisted that I didn't need the dillaudid. They wanted to put me on oral pain medication. Now, I'm no genious but the way I see it is if I can't even keep water or ice down, how can I keep the oral pain medication down? Slowly I did and even though I'm still having problems keeping it down, I'm home and am REALLY trying to NEVER end up in the hospital again. Despite what some of the doctors (Doctor A.) may think, a hospital is not my idea of a vacation destination! lol
Which brings me to this subject. I smoke. I'm not proud of it. I'm pretty ashamed actually but now is not the time to quit. Smoking, at least in my mind, eases some of the pain. The hospital that I've been in stands to receive a fedral grant if they can prove that they've been smoke free as of September 1, 2007. The problem with this is that there will always be smokers. Most smokers don't care about security guard warnings because they know that there isn't a law in St. Louis County banning smoking. The security guards took their jobs so seriously when it came to disciplining me, though. The reason, I'm convinced, is that I did my best to respect the hospitals rules. I took my IV pole or my husband would attach my IV pole to the wheel chair and wheel me to a spot where the hospital didn't own. We were yelled at and threatened by the security guards. Nobody else, just us! There came a night where I walked my little IV pole to a spot where it was ok for me to smoke and the security guard told me that I was stealing the IV pole. I showed him where I had the IV pole on the hospital side of the property and I was on the city side of the property. He was so pissed that I figured a way around his rules that he went up to my floor and told my nurses that he'd write them up because several concerned citizens called to say that I was standing in the middle of HWY 21 smoking my ciggarette. This was an obvious lie. NOBODY but the guard could see me. Besides, I'm WAY too proud to look like a psycho and stand in the middle of the highway! He was so pissed that he told the nurses that he needed a "face sheet" out of my chart. THIS is a NO NO NO where a hospital is concerned! You've heard of the HIPPA laws, right? This is a law where we have to authorize anyone to look at any information that is part of our chart. A security guard is obviously NOT part of my health care team and we NEVER authorized him to look at any part of my chart. He broke a federal law and by the time my husband got done making a few phone calls, I got to smoke anywhere I wanted and so did everyone else. The security guards got into some severe trouble and they weren't able to confront us anymore about anything. This kind of backfired. I still went to the areas that weren't on hospital property whereas other people felt like they could smoke anywhere they wanted. I truly do respect nonsmokers rights to be smoke free so the only benefit for me was that I could walk or be wheeled around without being harrassed. The harrassment was bad too. Before they got into trouble, the security guards would follow me only to put their spotlights on me no matter where I was at. Whether I was smoking or not, I'd have a security guard right there to ask me if I was planning to smoke on their property. They even claimed to "own" the sidewalks and roads that ran alongside the hospital. They truly deserved to be in trouble and I'm happy that I could be the one to do the honors but I would have rathered everyone smoke in the designated areas. Oh well, you can't always get what you want, eh?
The good news is that Surgeon Doctor A. did really fix the problem! He may not have good bedside manner but I'm not losing blood and my hemogloban count is higher than it has EVER been, still. I guess digestion will come in time. Afterall, it's only been week 3! I guess I'm doing pretty good, all things considered:) Thank you EVERYONE who've sent me good wishes and most of all prayers. They really did work and I couldn't be more blessed by all of you!