It has been a tough couple of days. For some reason my pain has been completely out of control. Judy, my palliative care nurse was able to get Dr. Giannini to write for the IV Benadryl. As I've said before, the IV Benadryl helps make the dilaudid more effective and last longer. I was getting IV Benadryl with the IV antibiotics, but since I won't be getting any more IV antibiotics, I needed it to help with my pain. It took many days to try to arrange it. First, for some reason it was difficult to get the order to professional home care. They faxed it multiple times, but for some reason, the pharmacy didn't get it. Then, it was a task to get it and have it delivered. I was in such severe pain that I was crying. I couldn't sleep as I was woken up by the pain shooting through my body. Each breath is pain staking. Even the pain medication doesn't touch the pain. I worry that I'm becoming dependent and that is why it is growing less and less effective, but the pain is getting so much worse. I know that soon we will have to change to either liquid or IV medication. It frustrates and scares me.
I had another episode of bleeding from the trach. I didn't do anything for it because I know there is nothing they can do. I know that I will not bleed to death and it looks worse than it is. You never get used to coughing up blood. My cough is worse as well which proves to me that once again the IV antibiotics didn't kill whatever it is in my lungs. My sats have been low as well. I am on 10L and can't really go any higher. I was in so much pain yesterday that I couldn't go to the movies with mom as we had planned. I know it hurts her to see me in pain.
I met with the hospice team on Thursday. They would like me to meet with Dr. Steingart before stopping the infusions. They talked with my pulmonology team, who of course said that they feel that my condition is not terminal. Even though my condition continues to decline, they refuse to see it. They then called Dr. Steingart whom I haven't seen since I got back from rehab, at which point I wasn't as sick. He hadn't known about my deterioration. Obviously, he was caught off guard since last I was doing better and the trach had helped my breathing. When they asked him about life expectancy if I came off Igg, he was unable to give a fixed amount of time. I know that it's okay because Dr. Giannini is the main person managing my care and she is able to sign the paperwork. The hospice team does want to make sure we have exhausted all options of treatment. I wish that we could find something that would help and make a difference. It is my one true wish. But I don't want to keep suffering. I worry this will keep me off hospice. I don't want to be on hospice if there is hope in something else, but I can't live like this either - with every breath being agonizing. I pray to breathe easy.
Another cyster (person with cystic fibrosis) died last night. Cystic fibrosis is a genetic disease that because of a gene mutation they have no chloride ion channels in their cells. This causes their mucous to be very sticky. They have a lot of lung problems. They get a lot of infections because their mucous is so thick and sticky that they can't cough it up. The many infections damage their lungs, somewhat the same as me. It is almost inevitable at some point they will require a double lung transplant as their lungs go into lung failure. For some, they get too sick to qualify for transplant. Others, for some reason, may not be candidates. In cases such as these, they die at a young age. Hannah was 20. It makes me so sad to think of all those that have died way before their time. I think of many others with different lung diseases that cause them to die young. It's just not fair. This is a world in which I wish we had more answers, more solutions. Medicine has come a long ways over the years. What used to be open heart surgery is now done laparoscopicly. Despite the advances, still many die too young. I grieve for all the mothers and fathers, sisters and brothers, family members and friends, boyfriends and husbands, who are taken from this world too young. They are such wonderful amazing people, whose lives are cut short. How I wish for me and those like me, there were ways to prevent this and give them the opportunity everyone deserves, the opportunity to live life.
Showing posts with label IV antibiotics. Show all posts
Showing posts with label IV antibiotics. Show all posts
Saturday, December 10, 2011
Friday, September 16, 2011
Infection
I have my first infection since getting the trach and it's really difficult. At first everyone wanted to know how I knew that I had an infection. Trust me... I know my own body. But more than that, my trach has changed. It is disgusting. Really thick, yellow mucous, and it stinks - smells like dirty washcloth meets dirty socks. Or maybe a better way to describe it is that it smells like Abby after she's been swimming. Very musty and gross. Now I can't really smell. So for me to smell, means that it is quite bad. Right now, I'm cleaning the trach every few hours. It just gets so thick and mucousy that I have to clean it. I'm also having to suction and I never did before. Also, I've been really short of breath. Sometimes too short of breath to wear the pmv to talk. It's definitely a difference from trach care when I was in rehab. When I would do trach care, it was slightly mucousy, but not overly so, and it certainly didn't smell. This normal and to be expected; nothing like it is now. Besides, I know... just as I knew before the trach, I know now. In fact, I think it is more obvious now because I see it when I clean it. I notice a change. Since the trach comes directly from my lungs, there is no question that that is where the infection lies. While it's good to be able to prove it, to be able to do a sputum culture, it's also harder because it's so "in your face." There's certainly no denying or ignoring it. The hard part about this is though I knew that I'd still get an infection at some point, I hadn't had one in a while, and maybe part of me hoped that maybe I wouldn't get an infection, that the trach had solved all of that. I guess, I also on some level, feel that getting an infection is my fault. I'm the one that cleans it. Yet, I guess I know this isn't true, that it's not my fault, an infection was inevitable, especially since having a trach makes you more susceptible to infection. I do clean it, and am responsible for it, but I take excellent care of it. Just like I take excellent care of my port. When I was in rehab, they'd train the other nurses or have other nurses come and watch me clean it because I did such a good job with it. Just as getting an infection before the trach wasn't my fault, and something I had no control over, neither is this my fault. Still, it is hard.
So Monday, I called the pulmonologist's office to get an appointment, but was told there were no appointments this week. Well first of all, there has to be appointments. There may not be any regular appointments, but there were emergency appointments. There has to be. They have to have sick patient appointments. But instead of arguing, I just asked them to have someone call me back. It wasn't an emergency and I didn't need to be seen. All I really needed was for them to order a sputum culture. I knew they couldn't put me on anything until they had a culture done anyways. Then I called Dr. Constantino's office to see if I could make better headway there. Turns out he's on vacation, and won't be back until next week. Great... Just great... Now I know he isn't really on vacation. He can't; he is the only trach doctor in the hospital. If a patient needs a trach, he has to do it. If a patient has an emergency, he has to be there. There isn't anybody else, and he doesn't have another doctor, nurse practitioner, or PA he works with. When I asked the receptionist what I should do, she told me I had to either see my pcp, or go to the ER. Well the ER would do me no good. The doctors there don't know anything about trachs. They are completely incompetent. The past times since I've gotten the trach that I was in the ER, both times for problems with the trach, they did absolutely nothing. When I had bleeding from the trach I was told that this was normal. When I had difficulty breathing, I was told that I just needed to get used to it. In fact, it turned out that the blood I was coughing up was from my lungs and vessels in my lungs had to be cauterized. The shortness of breath was caused by inflammation, which had caused an obstruction. So I don't have much hope that they'd be of help this time either. Besides, I just spent nearly 3 months in the hospital, I most certainly do not want to go back. Next, I tried Dr. Lafrenier's office because most other trach patients see an ENT to manage their trach. He is my ENT and it would be good to have him as back up in case this happens again, especially since this is the second time Dr. Constantino has been on vacation. However, I struck out here as well. Dr. Lefrenier was also on vacation and wouldn't see me in regards to the trach anyway because he hadn't put it in, which is a load of BS, but nothing I can do until he's in the office anyway. Thankfully, Diane, the PA in Dr. Wasserstein's office called me back and ordered the sputum culture. A sputum culture with a trach is much easier than when you have to just cough it up. My problem in the past had been that I'd be bringing up tons of mucous, but soon as they'd say "sputum culture" all sputum production would cease. At least this way, I had easy access. I had what was on my inner cannula, and if that wasn't enough, I could suction. Having never done a sputum culture before, however, made me nervous. In my opinion, it would have been ideal for me to either go into the office so that someone there could collect the sample or have VNA do it; then I know it'd be done right, and I wouldn't have to worry about somehow not doing it right. But to be honest, the doctor probably didn't know how, and VNA couldn't. So it was up to me. My biggest worry is that I wouldn't have enough for them to culture. Of course when I thought about it, if that happened, I'd just repeat it. It's not like I would be lacking in sputum or that I wouldn't be able to obtain any more. Basically what I did was get the sputum from around and inside inner cannula with a q-tip swab from the trach cleaning kit. I also swabbed inside trach and even coughed into cup. Looked like plenty to me. In the meantime, while waiting for sputum results, I was put on doxycycline and ceftin in case of infection. As I said, there was little doubt that I had an infection. Part of me wanted to put a warning saying "Caution! Do not inhale or sniff." Just unscrewing the lid would knock someone out with the stench alone. Oh, it was disgusting, nauseating. Another reason I knew it had to be an infection was that I had eliminated any other cause. I had completely changed all my equipment and tubing. Anything that couldn't be completely changed was boiled to disinfect. I thought of changing the inner cannula. I have two extra trachs and using the inner cannula from one would be okay, but if it was an infection causing the stench, changing the inner cannula wouldn't help. All that it would do is make the new inner cannula gross too. Some people on the trach board suggest doing a complete trach change, but I've never been taught how to do this. When I saw Dr. Constantino, I asked how often he changes trachs because the box said it should be changed once a month. He said he changes them every six months. Though at most it is an office procedure, many moms and other patients change their or their children's themselves. He said he prefers to do them in surgery at the hospital especially after all the bleeding issues I had, he wants to make sure at least the first time it is changed that he is at the hospital where if something does go wrong or I have a lot of bleeding, he can fix it. Though changing the trach doesn't seem too terribly difficult, it is not something that I just want to do myself without having been taught or shown how to do it.
Finally the results came back. As expected, it did grow bacteria. Honestly, had they said it was negative, I would've had them do another. All I had to do would was take out my trach to show them - the look and smell alone made it obvious that there was an infection. When I called the doctor to get the results, she said she was going to call in an order for ceftin. I get really frustrated by doctors. They write orders to treat you without having looked at your chart first. I'd been on ceftin for 5 days. At the time of the culture, I had been on it for 3. Obviously, this strain of bacteria was resistant because if it was going to work, it would have already begun to do so. In addition, she had been the one to call in the antibiotics previously; she should've known I was already on cefin. I then told her how oral antibiotics weren't effective because I didn't absorb them properly, and IV antibiotics are best. Since I have a port, there is no reason to not get them at home. No reason to have me get so sick that I need to be hospitalized. It is better to be proactive, start the IV antibiotics, and prevent a hospitalization, especially since I am more at risk of getting an inflection in the hospital. With the trach, my lungs are more stable. Thankfully she agreed.
Though I love Kathy, my nurse, she can be quite frustrating. She has strong opinions, some of which I don't agree with. She had screwed up the IV Benedryl and my chance of using it because of her belief that it could cause a potential side effect in the possible future. When I told her about the IV antibiotics, she was not supportive and in fact she suggested they do a second culture because mine may have been contaminated. Her argument was that it should've been done at the doctors office or by the VNA. Personally, I was insulted by this. Originally, I had wanted the doctor's office or VNA to collect the sample, but neither would do it. The only reason I wanted them to do it was that I had never done it before, and they had more experience. But because they wouldn't do it, I had to. I was a biology major and had worked with cell culture before. Plus, it's not exactly rocket science. I swabbed the inner cannula both outside and in. I swabbed inside the trach, using sterile technique, and coughed into the cup. Everything I had was clean and sterile, so there was no chance of contamination. Anything that was cultured was from my own body. If a doctor or nurse had done it, there would be the chance that they could contaminate it with their own germs, by breathing on it. So I was kind of insulted to have her suggest that I had not done it right. Had a second culture needed to be done, it would have postponed treatment. By the time it had been done, sent to the lab, and results obtained, it would've been Monday, and I would've been sick for over a week. In my opinion, prompt treatment was important and the sooner I got on the IV antibiotics, the better. I was really trying to avoid the hospital. Thankfully, she didn't call my doctor. My doctor was able to get it set up through my oxygen company. This was best because they were able to get it to me that night, whereas had they used BioRx, though I love them and am happy with the IVIg, I wouldn't have been able to start until it had been mailed to me. I am proud of myself for advocating for my care and getting what I needed. I am very glad I did because my lungs have gotten worse. I am short of breath and not really able to use the pmv. In addition, I began running a fever. So while Kathy can question whether I had an infection, it was obvious I did. I know my body, and a change in my trach indicates an infection. I know when I have an infection and when I do not. It's more obvious with a trach because the mucous coming up is directly from my lungs. So any indication of an infection is from your lungs. The frustrating part is that I've only been home two weeks and already have an infection. I didn't when I was in rehab. One of the tenets is coughing a lot, so I am concerned I got it from him, but who knows. Just hope this won't be a trend. I know I'm at greater risk since I now have the trach and because I'm in contact with many more people and all the potential germs they carry. In rehab I was fairly secluded and protected. But I can't exactly live in an institution.
So Monday, I called the pulmonologist's office to get an appointment, but was told there were no appointments this week. Well first of all, there has to be appointments. There may not be any regular appointments, but there were emergency appointments. There has to be. They have to have sick patient appointments. But instead of arguing, I just asked them to have someone call me back. It wasn't an emergency and I didn't need to be seen. All I really needed was for them to order a sputum culture. I knew they couldn't put me on anything until they had a culture done anyways. Then I called Dr. Constantino's office to see if I could make better headway there. Turns out he's on vacation, and won't be back until next week. Great... Just great... Now I know he isn't really on vacation. He can't; he is the only trach doctor in the hospital. If a patient needs a trach, he has to do it. If a patient has an emergency, he has to be there. There isn't anybody else, and he doesn't have another doctor, nurse practitioner, or PA he works with. When I asked the receptionist what I should do, she told me I had to either see my pcp, or go to the ER. Well the ER would do me no good. The doctors there don't know anything about trachs. They are completely incompetent. The past times since I've gotten the trach that I was in the ER, both times for problems with the trach, they did absolutely nothing. When I had bleeding from the trach I was told that this was normal. When I had difficulty breathing, I was told that I just needed to get used to it. In fact, it turned out that the blood I was coughing up was from my lungs and vessels in my lungs had to be cauterized. The shortness of breath was caused by inflammation, which had caused an obstruction. So I don't have much hope that they'd be of help this time either. Besides, I just spent nearly 3 months in the hospital, I most certainly do not want to go back. Next, I tried Dr. Lafrenier's office because most other trach patients see an ENT to manage their trach. He is my ENT and it would be good to have him as back up in case this happens again, especially since this is the second time Dr. Constantino has been on vacation. However, I struck out here as well. Dr. Lefrenier was also on vacation and wouldn't see me in regards to the trach anyway because he hadn't put it in, which is a load of BS, but nothing I can do until he's in the office anyway. Thankfully, Diane, the PA in Dr. Wasserstein's office called me back and ordered the sputum culture. A sputum culture with a trach is much easier than when you have to just cough it up. My problem in the past had been that I'd be bringing up tons of mucous, but soon as they'd say "sputum culture" all sputum production would cease. At least this way, I had easy access. I had what was on my inner cannula, and if that wasn't enough, I could suction. Having never done a sputum culture before, however, made me nervous. In my opinion, it would have been ideal for me to either go into the office so that someone there could collect the sample or have VNA do it; then I know it'd be done right, and I wouldn't have to worry about somehow not doing it right. But to be honest, the doctor probably didn't know how, and VNA couldn't. So it was up to me. My biggest worry is that I wouldn't have enough for them to culture. Of course when I thought about it, if that happened, I'd just repeat it. It's not like I would be lacking in sputum or that I wouldn't be able to obtain any more. Basically what I did was get the sputum from around and inside inner cannula with a q-tip swab from the trach cleaning kit. I also swabbed inside trach and even coughed into cup. Looked like plenty to me. In the meantime, while waiting for sputum results, I was put on doxycycline and ceftin in case of infection. As I said, there was little doubt that I had an infection. Part of me wanted to put a warning saying "Caution! Do not inhale or sniff." Just unscrewing the lid would knock someone out with the stench alone. Oh, it was disgusting, nauseating. Another reason I knew it had to be an infection was that I had eliminated any other cause. I had completely changed all my equipment and tubing. Anything that couldn't be completely changed was boiled to disinfect. I thought of changing the inner cannula. I have two extra trachs and using the inner cannula from one would be okay, but if it was an infection causing the stench, changing the inner cannula wouldn't help. All that it would do is make the new inner cannula gross too. Some people on the trach board suggest doing a complete trach change, but I've never been taught how to do this. When I saw Dr. Constantino, I asked how often he changes trachs because the box said it should be changed once a month. He said he changes them every six months. Though at most it is an office procedure, many moms and other patients change their or their children's themselves. He said he prefers to do them in surgery at the hospital especially after all the bleeding issues I had, he wants to make sure at least the first time it is changed that he is at the hospital where if something does go wrong or I have a lot of bleeding, he can fix it. Though changing the trach doesn't seem too terribly difficult, it is not something that I just want to do myself without having been taught or shown how to do it.
Finally the results came back. As expected, it did grow bacteria. Honestly, had they said it was negative, I would've had them do another. All I had to do would was take out my trach to show them - the look and smell alone made it obvious that there was an infection. When I called the doctor to get the results, she said she was going to call in an order for ceftin. I get really frustrated by doctors. They write orders to treat you without having looked at your chart first. I'd been on ceftin for 5 days. At the time of the culture, I had been on it for 3. Obviously, this strain of bacteria was resistant because if it was going to work, it would have already begun to do so. In addition, she had been the one to call in the antibiotics previously; she should've known I was already on cefin. I then told her how oral antibiotics weren't effective because I didn't absorb them properly, and IV antibiotics are best. Since I have a port, there is no reason to not get them at home. No reason to have me get so sick that I need to be hospitalized. It is better to be proactive, start the IV antibiotics, and prevent a hospitalization, especially since I am more at risk of getting an inflection in the hospital. With the trach, my lungs are more stable. Thankfully she agreed.
Though I love Kathy, my nurse, she can be quite frustrating. She has strong opinions, some of which I don't agree with. She had screwed up the IV Benedryl and my chance of using it because of her belief that it could cause a potential side effect in the possible future. When I told her about the IV antibiotics, she was not supportive and in fact she suggested they do a second culture because mine may have been contaminated. Her argument was that it should've been done at the doctors office or by the VNA. Personally, I was insulted by this. Originally, I had wanted the doctor's office or VNA to collect the sample, but neither would do it. The only reason I wanted them to do it was that I had never done it before, and they had more experience. But because they wouldn't do it, I had to. I was a biology major and had worked with cell culture before. Plus, it's not exactly rocket science. I swabbed the inner cannula both outside and in. I swabbed inside the trach, using sterile technique, and coughed into the cup. Everything I had was clean and sterile, so there was no chance of contamination. Anything that was cultured was from my own body. If a doctor or nurse had done it, there would be the chance that they could contaminate it with their own germs, by breathing on it. So I was kind of insulted to have her suggest that I had not done it right. Had a second culture needed to be done, it would have postponed treatment. By the time it had been done, sent to the lab, and results obtained, it would've been Monday, and I would've been sick for over a week. In my opinion, prompt treatment was important and the sooner I got on the IV antibiotics, the better. I was really trying to avoid the hospital. Thankfully, she didn't call my doctor. My doctor was able to get it set up through my oxygen company. This was best because they were able to get it to me that night, whereas had they used BioRx, though I love them and am happy with the IVIg, I wouldn't have been able to start until it had been mailed to me. I am proud of myself for advocating for my care and getting what I needed. I am very glad I did because my lungs have gotten worse. I am short of breath and not really able to use the pmv. In addition, I began running a fever. So while Kathy can question whether I had an infection, it was obvious I did. I know my body, and a change in my trach indicates an infection. I know when I have an infection and when I do not. It's more obvious with a trach because the mucous coming up is directly from my lungs. So any indication of an infection is from your lungs. The frustrating part is that I've only been home two weeks and already have an infection. I didn't when I was in rehab. One of the tenets is coughing a lot, so I am concerned I got it from him, but who knows. Just hope this won't be a trend. I know I'm at greater risk since I now have the trach and because I'm in contact with many more people and all the potential germs they carry. In rehab I was fairly secluded and protected. But I can't exactly live in an institution.
Friday, September 10, 2010
Hospital Update
Well, I am home from the hospital. I was discharged on Wednesday. Unfortunately, I wasn't discharged in time to make it to go to Boston. I was able to reschedule my appointment for September 22nd (2 weeks from my original appointment). I have been extremely impressed with the people in his office. Not only are they accommodating, but they actually call you back. They put me on a cancellation list, and should anything come up sooner, they will call me. At this point in time, I just want answers. I am so tired of being sick and in the hospital constantly. I DESERVE to have a life, and I can't do that when I'm in the hospital constantly.
Anyway, sorry, back to my hospital update. I was discharged on Wednesday. I can't say I was truly ready to be discharged, but the doctor wanted to discharged me, so discharged I was. See, the way it works is that my doctor rounds in the hospital on the weekend or holidays. During the week another doctor rounds. This doctor doesn't actually see patients. Strange, I know.
Tuesday they tried to allow me to eat. That didn't go so well. Caused a lot of pain and extreme nausea, but I stuck through it. I guess my CT scan showed what looked like a small ovarian cyst. I was sent down for an ultrasound. The GYN that did the ultrasound was amazing. She said that she did not think that it was a cyst, but rather a natural occurrence. It is less than 1 cm, so she said there is no way that something that small is causing my upper quadrant abdominal pain. She did not see evidence of any fluid indicating something had burst or was infected. So good news there.
Dr. S (the doctor that doesn't see patients) came in on Wednesday and was adamant that my pain was being caused by my non-existent (only a few millimeter) cyst. Apparently he knows more than the GYN, in which this is her specialty. She at least sees patients. Then he went on to tell me that women get cysts nearly every month. Okay, that is true in some cases. That these cysts can cause fever and increase WBC. Well, if they get infected, yes. And they are mildly uncomfortable and treated with Tylenol and Advil. Whoa there! I know people who have had ovarian cysts and they can be EXTREMELY painful. He then went on to tell me all about what it was like to be a woman and have a menstrual cycle - because his last menstrual cycle was when?
He then wanted to discharge me without finishing the course of antibiotics. All through the hospital stay, I'd been on IV Cipro. My lungs had mildly improved from when I was admitted, but I was still fairly wheezy and junky. I was able to talk him into prescribing enough oral antibiotics to get me through Saturday, which would be 7 days of antibiotics. I tried to impress upon him that whether or not the exact infection causing my problems was identified didn't matter, but that stopping any course of antibiotics mid-cycle is dangerous and how antibiotic-resistance develops.
This doctor obviously does not understand PIDD. I often think doctors should actually read a patient's chart before going in to see them. I also think that if that patient has a diagnosis that a doctor does not understand or is not knowledgeable about, that he/she should educate him/herself on this disease. Everyone has access to the internet, so there really are no excuses. I often wonder if all doctors acted as med students with the need to impress their attending, if perhaps patients would get better care. I wonder if some doctors just become lazy over the years. I have ceased expecting doctors to do this, but I get so tired of playing both doctor and patient. I do not mind educating people, but it's hard when you feel like you're talking to a brick wall. Well maybe talking to the brick wall would have more of an effect and it would be more responsive.
So, I am home. My lungs are not doing so well. The small improvement I felt in the hospital is slowly being lost. I don't know if the oral antibiotics are just ineffective or what? Maybe my body is not absorbing them properly? It seems that every time I take oral antibiotics, they do nothing. I do not know why this is. I also have horrible thrush. I've tried OTC products, with no luck. My doctor hasn't prescribed anything. It's down my throat and possibly in my stomach. Is this possible? Would that be why I feel so sick?
Again, more questions asked than answered. Feeling a bit discouraged. One and a half weeks until Boston.
"I think I can. I think I can. I think I can." - The Little Engine that Could
Tuesday, September 7, 2010
Hospital
While there is never exactly a "convenient" time to get sick, as no one ever wants to be sick, but I often seem to get sick at the most inopportune moments. When the last thing I want to do, or can afford to do is get sick, when it's actually extremely important that I stay healthy, that is most often when I do exactly that. During these times, I try to will my body to stay healthy. It's as if I try to bargain with it - just stay healthy until... Unfortunately, my body rarely listens.
Tomorrow, I was supposed to go up to Boston for a consult at Boston Children's hospital. So of course, last week, my lungs decide to get crappy. I could feel the mucous building up and getting congested. I got to be so tired and worn out doing simple things, gasping with every breath I took. Instead of decreasing the prednisone, I stayed at 40mg. I needed my body to make it. On Thursday night, I began running a fever. Now I never run a fever, so when I do, something is seriously wrong. Friday, I called the doctor and was told to go to the ER. I didn't want to go to the ER. I wanted him to give me antibiotics and let me do it at home. I was not at crisis point where I would normally go to the ER. My lungs were bad, but not horrible. I was holding my own. Of course, I knew without antibiotics, this wouldn't last long. I was very frustrated.
Well, I made it through Saturday. Watched a move with my sister and had a good diner. It actually wasn't the lungs that did it this time. They played a part, but the ultimate issue was the fact that I started with severe upper quadrant abdominal pain. It caused me to double over in agony. I took a pain pill, but it didn't even touch it. 2 hours later, I took another. The pain had worsened to the point that the Zophran ODT wasn't even working to counteract the nausea. My breathing, which had been difficult before any of this started, was worse. I couldn't take a deep breath at all. So finally, and very reluctantly, I went to the ER. The ER was insane on a Saturday night of a holiday weekend, but I got right in since my o2 sats were only 81%. I had a temperature, and my blood work showed a WBC (white blood cell count) that was through the roof and an elevated lipase level. Lipase is an enzyme in the pancreas that digest fat. Elevated lipase usually indicates pancreatitis. With the PIDD, my WBC rarely goes up.
The ER doctor was actually very good. He stayed on top of things and consulted my opinion on what worked best for me. This is very rare as usually ER doctors do not understand PIDD at all, have never even heard of PI, and thus, often treatment is horrible. In addition, usually if you are in pain, ER doctors do not listen. If you have been there even once before for a condition requiring pain medication, you can be called "drug-seeking" or an "addict". This is very frustrating. While I understand the need for doctors to be cautious, I have a serious medical condition which can leave me in debilitating pain. If I end up in the ER in pain, it's usually quite severe and caused by another issue such as kidney stones. So it was quite refreshing to be asked what works for me and be taken seriously. Apparently the ER doctor had taken care of me here previously and had also taken care of me at Baystate, which is the hospital I used all throughout college. I have always received excellent care there and because it is where I was diagnosed and being treated for my immune disorder, most doctors there are familiar with my case. Needless to say, though I was hoping to avoid being admitted, I was. I do agree that it was needed, especially with my WBC being so high.
Overall, it's been a fairly good admission. I have had some minor issues with pain management, but overall my pain has been controlled. I am on IV antibiotics. Thus far, I am NPO, meaning I am not allowed to eat anything, to hopefully help the pancreatitis. My biggest concern is that I will have to reschedule my appointment in Boston.
Tomorrow, I was supposed to go up to Boston for a consult at Boston Children's hospital. So of course, last week, my lungs decide to get crappy. I could feel the mucous building up and getting congested. I got to be so tired and worn out doing simple things, gasping with every breath I took. Instead of decreasing the prednisone, I stayed at 40mg. I needed my body to make it. On Thursday night, I began running a fever. Now I never run a fever, so when I do, something is seriously wrong. Friday, I called the doctor and was told to go to the ER. I didn't want to go to the ER. I wanted him to give me antibiotics and let me do it at home. I was not at crisis point where I would normally go to the ER. My lungs were bad, but not horrible. I was holding my own. Of course, I knew without antibiotics, this wouldn't last long. I was very frustrated.
Well, I made it through Saturday. Watched a move with my sister and had a good diner. It actually wasn't the lungs that did it this time. They played a part, but the ultimate issue was the fact that I started with severe upper quadrant abdominal pain. It caused me to double over in agony. I took a pain pill, but it didn't even touch it. 2 hours later, I took another. The pain had worsened to the point that the Zophran ODT wasn't even working to counteract the nausea. My breathing, which had been difficult before any of this started, was worse. I couldn't take a deep breath at all. So finally, and very reluctantly, I went to the ER. The ER was insane on a Saturday night of a holiday weekend, but I got right in since my o2 sats were only 81%. I had a temperature, and my blood work showed a WBC (white blood cell count) that was through the roof and an elevated lipase level. Lipase is an enzyme in the pancreas that digest fat. Elevated lipase usually indicates pancreatitis. With the PIDD, my WBC rarely goes up.
The ER doctor was actually very good. He stayed on top of things and consulted my opinion on what worked best for me. This is very rare as usually ER doctors do not understand PIDD at all, have never even heard of PI, and thus, often treatment is horrible. In addition, usually if you are in pain, ER doctors do not listen. If you have been there even once before for a condition requiring pain medication, you can be called "drug-seeking" or an "addict". This is very frustrating. While I understand the need for doctors to be cautious, I have a serious medical condition which can leave me in debilitating pain. If I end up in the ER in pain, it's usually quite severe and caused by another issue such as kidney stones. So it was quite refreshing to be asked what works for me and be taken seriously. Apparently the ER doctor had taken care of me here previously and had also taken care of me at Baystate, which is the hospital I used all throughout college. I have always received excellent care there and because it is where I was diagnosed and being treated for my immune disorder, most doctors there are familiar with my case. Needless to say, though I was hoping to avoid being admitted, I was. I do agree that it was needed, especially with my WBC being so high.
Overall, it's been a fairly good admission. I have had some minor issues with pain management, but overall my pain has been controlled. I am on IV antibiotics. Thus far, I am NPO, meaning I am not allowed to eat anything, to hopefully help the pancreatitis. My biggest concern is that I will have to reschedule my appointment in Boston.
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