TRANSPLANT IS A DIFFERENT WORLD - BUT IT IS "LIVABLE" !!!!!
Before going into the hospital, make sure all your bills are in order. Already have talked to someone about what to do. Give them the stamps, signed checks, and return address labels. Make sure you have people assigned to feed pets, pay bills, get mail, and water plants. That kind of thing. Your spouse should not have to worry about this. They will be busy and worried enough, and if they get any free time, they should get to relax a bit, and not have to take care of this kind of stuff. If it is in the budget, have a bit set aside for before you come home and have the house cleaned. Have the fridge washed out, old food thrown out, pets bathed. Not only will you feel better coming home to a clean house, it is healthier. If you have CF, old food that stays "wet", like butter, jellies, most refrigerated stuff will need to be thrown out as a precaution. Bacteria and funguses can live it them. I was told to throw out my old lipsticks, but I took them to the make-up counters and had them disinfected.
What to expect…

Before Surgery…
When I had my surgery, I went in on a Monday, and the surgery was scheduled for Wednesday, so what I am saying is based on that. Having it planned vs. waiting for "the call" is probably pretty different. I had a PICC line in, but they started a peripheral IV in the other arm as well the night before the surgery. I was given the first dose of IV and oral antirejections the night before. I was told to shower good, and scrub with this soap stuff. They came in the morning of at about 4:00AM, and had me shower and scrub again. I was given a gown to put on, and told to only wear that. But my feet were cold so I wore socks. Of course, the night before, after seven months of not having one, I got my period, so I wore my undies too! Then we (my husband, Brian, and parents) waited in my room. About 6:00 (the surgery was scheduled for 7:30), they came and brought a gurney, and told me to get on. I then decide that I changed my mind. I didn't need the surgery after all. I mean, it was 2 weeks after my 26th birthday, how could I be that sick? Okay, so I was on 6 liters of 02 at rest, and I weighed 85 lbs, and I could not walk, but it had to all be some huge mistake! After my family threatened me a bit, I went for a ride down the hall to make my way to the 4th floor. The most wonderful thing was that when the elevator doors opened, my whole family and friends were waiting there for me. It was just what I needed. The 4 of us then went into the pre-op room, where my donors were on the other side getting prepped as well. For some reason, they did things to my donors that they did to me when I was under. Not sure why. I was in the pre-op room for a while, not sure how long, but maybe an hour. They brought me in papers to sign, made sure that I had a power of attorney, that kind of thing. Then they told me that I should say good-bye that they would be taking me in soon. So as I am saying bye (not an easy thing to do), they "gave me something to relax me". I hugged my dad, then my mom, then Brian. The last thing I remember was having my arms around Brian's neck. They have this little wonder drug called verced. It is great. It totally relaxes you to a point, then if you get just a little more, you do not remember a thing. It has a complete amnesiac effect on you. You will have this when you have to get bronchoscopies too. So that is it for before. Pretty painless physically, but mentally, a bit rough.
A hint, if you have long hair, have someone French braid it. It may be a week or longer before you can wash it.

ICU…
When saying this, I need to tell let it be known, I have been told by Dr. Liebler, and Felicia, that I "eat" drugs more than anybody else. Dr. Liebelr told me that if I ever have to have anything done, I have to tell them to give me, like twice the amount of drugs / anesthesia that a normal person would get.  Felicia told my mom that to keep me under after the surgery, the amount of drugs would have killed me. This does not usually happen. But, I woke up very soon, about 7:00 that night as far as we can figure. I can remember things that I should not. The thing that happened to me is (and I am saying this because it should be known that it can happen, but it probably wont), but my mind woke up before the paralyzing agent wore off. I could think, but could not move. It sounds worse than it is, because I was still VERY drugged. What I remember the most is that I was so very hot. I remember trying to move, and my left toe was the only thing that I felt like I could move, but I don't know if I actually could or not. I was trying to move it to get the covers off my feet. Then the nurses came it to clean me up, take the tape off my eyes, that kind of thing, this usually happens when you are still asleep.  When one nurse took off my blanket to clean me, she said, "oh, she's sweating", and I thought, "Oh, thank God, now she will keep the covers off". The cool rags to clean me felt sooooo good, and then she put the covers back on me!!! I was so mad! But then I was out again and the next time I woke up, I could move, and it was okay. My hands were tied down, but loosely, just so I could not pull out any tubes. It didn't bother me. I can't remember getting unhooked, but it didn't seem like that long after. I know that I was able to communicate the things that I needed to even though I was tied down. I wanted to know what time it is, and how my donors were, and when I had pain, they were able to know by however I told them. I think that I just pointed to my chest. I am also allergic to tape, so my eyes were messed up from having the tape on them. I was able to let them know I needed drops. I wanted Chap Stick (be sure that you have a new one due to bacteria that may be left on an old one), and my glasses. I waned to see where I was cut, so they held up a mirror. They have these pink spongy / swabby things that you can dip in water, and swab in your mouth to keep it moist, so I got a lot of those, and used them often. I was able to communicate it all without much problem even though I could not talk. The nurses are great at figuring out what you need. You should not worry about any of that at all. They are so sweet and kind. I did stay hot though, so make sure that you get a battery-powered (only) fan. I used mine every day I was in the hospital. I was hooked up to a million things (it seems like). I had: A tube up my nose, in my neck, down my throat.  I had hart monitors on (five I think).  My PICC line, another IV, and an ABG line. 4 chest tubes (if you only get one lung, you will only have 2). 59 staples, & a Foley catheter (for pee). These things on my legs that help for circulation. I think that is it. J
But I cannot tell you enough times though that you won't care about any of this the first day or two. You will be so drugged, that none of this will matter. By the time that you are starting to care, the things will start to come off. On Friday about noon, my breathing tube came out, along with the tube that was up my nose. When it comes out all depends on how you are doing. If you have a real hard time on it, you can get something to sedate you. But the more you are sedated, the longer it may take to get it out. I must admit I hated it and gagged almost the whole time it was in. I am the only one that I know of that had that hard of a time on it, so I would not worry, most people are fine. It is pretty fuzzy on what I had to do. But I think that they stick this thing down the tube, and you have to cough, or do something to measure the pressure that you have in your lungs. I remember that it is hard, and it seems like I was kind of gagging a bit to do this, but I don't really remember all that well. I had to do it five times until it was good enough, but I was determined! When the tube comes out, everything seems better. Then you can eat! After the tube is out, Jeff, the physical therapist, will most likely come into your room and make you stand up. If you have problems, and the tube takes longer to come out (and this happens to some), he will still come in your room to get you out of bed and at least stand up, walk in place, and sit in a chair. You can walk around on the vent if you have to also. If I remember correctly, the first time, he will come and make you stand and walk in place. It takes about 20 minuets to get out of bed, and you stand up for about 1 minute. He will have you sit in the chair for a while. I really liked sitting in the chair. It felt good to me, but a lot of people have a discomfort doing this. You should sit up as much as you can. It will help with the drainage of the chest tubes, and that will help get them out sooner. The sooner the chest tubes are out, the sooner you go home. The chest tubes are a big deal. They really hurt. I was told that they are "heavy" and "uncomfortable". I will not lie to you, they HURT! They are one of the most painful parts. The incision is a non-issue. It does not hurt AT ALL. I was touching it a few days after, and nothing. It is completely numb, as your boobs are. Mine still are, and most likely will be forever.  There are only three things that I can think of that gave me any relief form the chest tubes. One, when I was lying in bed, I taped them to the sheets to allow for some slack, so all the pressure was not on my skin. Two, sitting up in the chair helped sometimes. Three, and may not make sense until they are in you, so keep this, and take it with you when you are there so you can do it then. This is how to have the nurse dress them. I would tell them how to do it EXACTALLY, and they still did not do it like I wanted. So when they left the room, Brian or my mom and I would take it apart, and redo it. I would lie flat on the bed. Have them take a 4x4 (gauze) and put it under the tube, and over the top of the tube. Then, take a piece of tape, and put it in the direction that the tube is going. Rip the tape in half, and take each side, and wrap it in the opposite direction, so one strip is wrapping to the left, and one to the right. Then, put a 4x4 over the tape at the top, and then take the tape, and tape it all to the skin as tight as you can stand. The reason for doing it this way is for a couple of reasons. Lying down is the position that you were in when they put them in. Wrapping the tape is to help anchor it to that position, and taping it tight helps it to not move around inside you. Doing it this way may not work for you, but it is the only way I got any relief. In ICU, the day after surgery, the epidural goes in. Thank God for the epidural. This is the most wonderful invention. But some people have hallucinations from the morphine. I was told to bring headphones with music that relaxes me. I did not need it, so I do not know if it works or not. Couldn't hurt to bring it though just in case. The RT will be in quite a bit. You will hate them at first. It is so hard to move, and they want you to go in all these odd positions. But you have to do it. Just a hint, I told them that I could not go in a certain position, it hurt too much. They worked with me. I took the food tray, and bent over that. So if what they ask is intolerable for you, they will work with you. I was in ICU for 5 days, but could have gotten out on 4 if there were enough nurses on the floor (it was a holiday weekend). I know that there was someone constantly in my room it seemed. There were RT's, PT's, nurses, doctors, and coordinators. The pain management people, x-ray comes in at 6:00 or 7:00, very early I remember. For some odd reason, they change your bed sheets and bathe (all of) you at 4:00AM. The first time, I could care less. The second night, I was a little bit more aware, but was still "whatever". The 3rd night, I had the tube out and could talk. I told them that I could bathe myself with help from my husband or my mom, and couldn't they come back later to change the sheets??? They did. They have these things called comfort baths, and they are nice. Like thick baby wipes that they warm. They work well. They also have this stuff to spray in to "wash" your hair. Well, I have thick curly hair, and did not let them. I was afraid of what it would do, I had heard horror stories about the tangles it gives. I will tell you how I washed it later. One thing to remember too, for some reason, a lot of people itch after surgery, it is a reaction to the meds. I did, and most do. Let them know. They will give you Benadryl, and it is wonderful medicine. It makes you go right to sleep, and sleep good. Even when I wasn't itching, I told them I was when I couldn't sleep (which was all the time, it is loud and bright in ICU), so I could get it. Make sure that if you have to get amphoterrasin (sp?). That they premedicate you with that and Tylenol. It is nice, and not a "real" drug.
What you will need to have:
Nothing really. Like I said, I needed chap-stick and my glasses. When the tube comes out, if you want your own food, you can have someone bring that. Batteries for your fan. They have almost everything you will need in the ICU.

On The Floor…
The floor is great. You have a bigger room, and people can come see you. You can wash your hair. The way that I did this is we got a tall trash-can, and put a bag in it. Then I sat in a chair with the tall back, sat on pillows and put my feet on the bed. I put a pillow in a bag so it wouldn't get wet, and put it under my neck. Then, my mom and my aunt would get the "pink bucket", and fill it with water, and dump it over my head. Then shampoo, rinse, conditioner, rinse, and then I was done. They would dump the water in the shower, and I had clean hair. Wonderful feeling. If you like you legs to be shaved, get an electric razor. Much easier. I did shave them a couple of times with a real razor, but it is a lot of work. Visitors have to still wear the mask and gloves, but they can stay as long as you want them to. After a week, Brian and my parents didn't have to wear them. But you will not want company. They give you a schedule of things that you have to do during the day. It takes up almost every hour of the day. You can rearrange it if you want to, I did. But your day will start at about 6:00 AM when the resident Dr. comes in to check on you. They will listen to you lungs, and make you cough to check for bubbles in the chest tube. I don't remember why this is done. Lots of stuff is unclear to me because of the drugs. LOTS OF DRUGS! At 7:00, someone will come to take your blood - every day. Right around the time that you are getting breakfast, someone will come to take you to x-ray. When you come back, it is time for RT, and then PT. By then, it is lunchtime. This is considered a "rest period", but you have to eat then. Then RT again, and PT again. Then dinner, then RT again. By then, you are pooped. Tired out. The day is very hard. The thought that kept me going is this: This is just a few days out of my life. They know what they are doing, I do not. I will do what they say, and then go home and sleep for a week if I want to.  If you are doing well, you can request to be left alone at night. The nurse will usually check on you once, but that is all. You have to request to be weighed at night too, or they will come do it at about 6:00 AM.  The busy schedule is why you should tell people not to call or come visit outside of people you are comfortable having see you at your very worst, or hanging out when you are sleeping or busy. Have one person that emails or calls everyone as to how you are progressing. You will not want people in your room. You feel like crap, look like crap, you are hurting, you will be throwing up. You will be on the potty a lot. This is not social hour. Also, you will not want to have everyone's germs in your room. It is very risky. I told everyone that I could not have visitors, just immediate family. I also told most people not to call, and I don't think that I answered my phone more than 5 times. I even had a DND on it when I slept. There were a few days that I told my nurse to keep everyone out, I needed to sleep. They do not do this often, and not all nurses will do it, and if you are not doing well. But if you really need to sleep, tell them, and they will give you an hour or two break. You are no good if you are too tired to give it your all. All of this is so hard, but very necessary. The best thing to do is to go into this with the attitude that they know what they are doing. You don't. They have done this a hundred times, and know what works. It is only for a short time, maybe 3-4 weeks, and then you can go home. If you do what they say, then you get to go home earlier, because what they say to do works. That is the best advice I can give you. Everyone gets sick. You will start to throw up at some point. Either right away, or it may take a week or so. But it happens to everyone. It is all the medications. I threw up for about 10 days straight in the hospital. Then on and off for almost 2 months after. I would feel fine, and then just be sick. But it does stop. You will either have diarrhea, or be constipated. Or both. There is something that I was not warned about. It is the drugs. The narcotics make your system slow down. So does the anesthesia. You have to be careful. If you take to many pain medicines, it can totally clog you, and some people have to have surgery to remove the blockage. This is what I can tell you about the pain medicine. First of all, the epidural, this comes out on the 7th day. If it is left in longer, it can cause an infection. So on the 5th day, start to have them wean you off it, and add oral medication. There is also a patch that I can't remember the name. But it is a morphine like drug. It works well. Have them add that the day BEFORE you get the epidural out.  It takes a day to start working, and I believe it works for 72 hours. When you are taking oral painkillers, you have to ask for them, they are not automatic. You need to take them weather or not you feel like you need them. You may think that you are not having pain, but you are, it is just masked. If you let the pain get out of control, you will regret it. It will take you hours to get it back to a point that you are not in agony. This is from experience. The day that the epidural came out was the worst pain day that I had. It was very hard. If you do what I have suggested, it will help, but you will still have pain. There is a pain management team (Dr. Reever, she is great) that you can call if you feel that you are not getting enough. Some doctors (the resident on call), and nurses are a lot more reluctant to give you pain medicines. There were a couple of times I had to get the head nurse involved, and I had Felicia paged once as well. If you cannot tolerate the pain, there is more that can be done. Dr. Barr told me "don't be a hero", and I tried to keep that in mind. The main pain that I had was from the chest tubes, so one by one, as they come out, the pain gets easier. The other big source of pain is in your back. The muscles (I was told) get bent so out of shape that they hurt pretty badly. It is one of those types of pains that you just can't find a comfortable position. The day that the epidural comes out, they take out the Foley catheter. This is when I had my mom and Brian take turns staying the night. I was afraid that I would have to go to the bathroom, and the nurse would not get there in time. The first night, I did not have anyone stay the night, because I had a little port-a-potty sitting by my bed. I thought, "okay, this is no big deal, I can do this". So I was able to get myself over to it, went to the bathroom fine. "Okay, now to wipe… hummm, where is the toilet paper???". None, I did not get it out of the bathroom. There is NO WAY I could make it to the bathroom on my own. So I had to use those little hospital tissues that are about as thick as air and wide as a q-tip. Used the whole box. "Okay, now I HAVE to was my hands (due to thickness of tissue). Hummm, what to do?  Use the comfort baths! Okay, got it. Now to get back to bed. Done, call the nurse to clean up my potty. An hour later, with it sitting right next to me, and oh great, it is the tech, and he is a guy. Wonderful. Act like you are asleep so you don't have to look at him". This is why from that day on, someone stayed the night with me and helped me to the bathroom. You have to get your night nurses approval to have someone stay the night, and I was told that it was "frowned upon". At first, they were kind of hesitant. I kind of told them that they were staying. Then the nurses liked it, because they were able to help me a lot, and that meant less work for them. It worked out great for me. By this time, it has been a week, and you are feeling a feeling that you had forgotten, or in my case, had never known. You can breathe. You are not coughing. I couldn't shut up (probably due to the steroids). I loved having them there for late night chats. The tubes make you feel like you cannot take a deep breath, but remember, it is the tubes that make you feel that way. When they come out, you will feel like you can blow out any candle! Which brings me to getting the tubes out. I was very afraid of this. It really freaked me out. I had an anxiety attack. My donor had his done earlier that day, and talked me out of getting a shot of morphine. You can get one if you want it, but you really will not need it. This is how he described it to me, and it is a pretty good description. If you were to take a we water hose, and have you hand wet, and drag it through, you get kind of a bumpy, stiff, sticky feeling. That is kind of how it feels. You will take a deep breath and hold it (and yes, you will be able to do it. I kept telling him "I can't hold my breath that long", and he just smiled and said try, and it was no problem!). Then they will pull it out very quick, and tie the stitch. Tying the stitch is what really hurts. Then they put pressure on it, and that hurts too, but it is all tolerable. I asked for an extra pain pill about a half an hour before I had it done, and that was it. It is really okay. But the relief when it comes out is immediate. It is so nice! With each one that comes out, it is a sense of relief. You can breathe a bit better, and then you can do more. You will have the last one stay in forever it seems. But when the last one comes out, if everything else is okay, 24 hours later, you get to go home. You will reject before you leave. I have only met one person that did not reject before she left the hospital. Everyone does. You will get a 3-day dose of solumederal (sp?) and that usually takes care of it with no problem. You will most likely leave the hospital with diabetes. It is steroid induced. So that is something that you will have to deal with too. You will have mood swings. I would be crying for no reason at all, in the middle of a regular conversation, and boom, the waterworks would flow. It is really kind of funny. You may have very weird dreams. You may have delirium. I did. I heard people talking to me when no one was. I would nod off in the middle of a sentence. It is not scary or anything, just kind of weird.
What you will need to have:
Pajamas. Loose ones that are comfortable, socks and undies.
Any toiletries that you use (deodorant, razor, shampoo & conditioner, toothbrush and toothpaste, stuff to keep your hair back). Maybe a pillow. I needed a pad because of my period, but also your bladder gets a bit "loose" and when you have to pee, you have to go NOW, and cant always make it to the potty in time. This continues for a few months.
I highly recommend getting a day planner. Put all your phone numbers in it. Use the date book for all appts. (you will be overwhelmed). Also, have someone keep track of what happens when, you will not remember it and you will most likely want to look back at it at some point. Use the note pad for questions for your doctors. When rounds happen, it is like a whirlwind, and you will forget.
Get a prepaid phone card.
Food. We brought in a cooler and kept things like yogurt and pudding, things to make sandwiches. There are local food places and Pizza Hut will deliver to your room. You will probably get sick of the hospital food. We were allowed to use the freezer and refrigerator too.
 
 

Going home…
This is the greatest day!!! Hallelujah! Happy days are here again! When you go home, you will be so tired. I got so discouraged. I expected to be able to start my life. I wanted the independence that I had not had for so long. For the first time sense I could remember, I was not hooked up to anything. I couldn't wait to be independent. But I was in for a surprise. I was so weak and tired; I couldn't shower on my own. Make sure that you have someone there with you when you shower. Make sure that you have a chair for your shower. You will not be able to stand. Brian had to wash my hair for me. I could not poor milk. It was too heavy. I was doing more than before I had the surgery, and then I had just had one of the biggest surgeries that anyone could have. And I couldn't figure out why I was so weak and tired. I talked to the Dr, about how I was feeling, and she said, "Slow down, give it some time". So I did, and things got better. I told friends and family that I still could not have any visitors for at least a week. I lied and said that it was the Dr's orders. You will not be up for a lot of people being around you. You will also be afraid of catching something from people. You have to make all your friends and family know how important it is that you not be exposed to anything. You have to let them know that it is a cold to them, but it can kill you, literally. Get a ton of Purell and put some by your door. Make people use it before they come in, keep masks there too if it makes you more comfortable. Go to Bath and Body Works, and get their antibacterial line for you (it smells better J). Get some silky pajamas to sleep in. It is hard to move around in bed because you are sore, and the silk helps you slide. You will need a few shirts that you can wear without a bra. I did not wear one for almost 3 months. Try to stay away from kids for a while, they always have a ton of germs, epically the age that wipes their nose with their hands. Just try and be smart about what you are doing, and whom you are around. You are very susceptible to everything in those first few months. You always will be, but the first 3 months are critical. It will take you about 3 months before you are feeling like you are doing better. Up until that point, it is baby steps. Two steps forward, one step back. You have to take it one day at a time. There will come a point though that you will notice that each day is getting a little easier. At 3 months, I started to fell like I was really getting a new life. Things were falling into place. I did not feel like I needed someone around me all the time, and that I could just get in the car and go. But it was 6 months that I really felt like life was good. I was familiar with my body again. I felt comfortable in my skin. I was to the point that I felt like my body was my own again. It was a wonderful feeling. I am now at 10 months. I have had several problems, but nothing that has not been solved.
Everything that I have talked about, all the pain, all the nausea, all the sitting on the toilet forever. The weakness, the discouragement that you feel, the fear, the anxiety, the anger. ABSOLUTELY EVERYTHING that you go through is more worth it than I can come close to even explaining. There are no words. There is no way that I can even come close to expressing how worth it all of this is. This is more wonderful than I can express. It may sound like it is all too much to do, but it is not. It is very hard, but goes buy quickly. You will love the life that you are given when all is said and done.
This is all that I can think of for now (ha-ha).

Melissa 27 YOF w/ CF,
Diabetes, living donor TX #98
@ USC
University Southern California Hosp.  05/24/00
Whittier, CA.



 
U.S. Cadaver Organ Donation Increases 1.6 Percent in 2001

The total number of cadaver organ donors in the United States during the year 2001 was up approximately 1.6 percent over the  previous year, climbing to a total of 6,096, according to preliminary data gathered by the Association of Organ Procurement Organizations (AOPO).

That compares to a 2.5 percent increase in the number of cadaver donors in 2000.

Cadaver donors provided a total of 19,321 kidneys, livers, hearts, lungs, livers, pancreases and intestines that were transplanted into waiting patients -- an increase of 1.7 percent from 2000, according to AOPO.

The most encouraging development of the year was the 50 percent increase in the number of non-heart-beating donors in 2001.  While virtually all cadaver organs during the 1980s and most of the 1990s came after pronouncement of brain death, a growing number of organ procurement organizations now are undertaking the more challenging task of retrieving organs from patients following death by heart failure.

In the year 2001, organs were retrieved from at least 166 non-heart-beating donors, compared to 112 in 2000, according to preliminary data.

Another significant development was the increase in the number of pancreases recovered from donors during 2001.

While the number of pancreases transplanted into diabetic patients only rose by 3.5 percent to a total of 1,405, the number recovered for research jumped by 34 percent to a total of 476, according to the preliminary data.




EMAIL MELISSA


Subject:  [SECONDWIND] Airway Issues (again)
   Date:  Fri, 11 Jan 2002 00:40:48 -0800
   From:  Melissa Reta <mooselungs@HOTMAIL.COM>

For those of you that have had airway issues, or had to have stents placed, how long out has it happened after TX? I had a lot of problems with this early on, and have 2 stents, but it has been 19 months now, and I think it is happening again.  This feels different than the other times though, deeper I think. Being that I only have the lower lobes though, I am not sure if that plays any role in this. I did a PFT and it is great still. In the past when I would do a PFT and was having airway problems, on the peak of the spiro, instead of the peak, it had a little flat line.  Not this time. I also did an x-ray and it was fine too. Sats were normal.  It has been going on for a week now. I have this rattle in my chest, and am a bit shorter of breath. For those of you that have/had rattles in their upper chest (I did and many other CF people have a rattle, don't know about other diseases) well, that is what it is doing in the right lung; under my armpit, about boob-level.  I cant get an appt until next Thursday with the (other, not mine, mine is on jury duty) pulmo doc, but I am going to call tomorrow to see if I have any options., I really want to be listened to, so I don't loose the airway. I almost did before. My bronch doc not like to do them, he is the one that I have the appt with on Thursday.  What do you all think? Could this be airway again, or something else that someone recognizes these symptoms?
Thanks so much!
Melissa



Wednesday December 11, 2002
Hola everyone, today, I had my 2 1/2 year check up and a few things were not that great.

First of all, my white blood count was low, I think around 3-4. I did not realize how low this really is until a told a friend and he told me it should be around 10-11? I have never paid attn to it before, there has never been an issue. I didn't ask the doctors more about it because I had other things on my mind (next paragraph). I was taken off of cytovine to try and lower it some, but that does not make a lot of sense, I have been on it sense day one. *Side note, they are doing a standard blood test now that will check for CMV, as I am CMV-. My questions to you are what could cause this? How would it make you feel? I have been pretty tired lately, and have even been taking naps, which I NEVER do. Could this be the cause? Any personal experience would be helpful, also any technical info from the "real experts" is always appreciated!
Now to my bigger problem. I have been having sinus problems sense the TX games when I got a sinus infection. I have not been able to smell senses then either. I asked the transplant team a few times about it and they said "give it a little more time". I finally got tired of hearing that and made an ENT appt myself. He told me it was junky up there, and ordered a sinus CT. I asked him to do a culture and it came back positive for pseudomonas. The good news is it is resistant to everything (well, nothing oral). But seeing as how I cant really do inhaled antibiotics, it is IV's. Ugh, the first time sense my last sinus surgery (2 years ago),I have had to do that because it got rid of everything then. So, what I am doing is having a CT tomorrow AM, then seeing the ENT in the afternoon. I want him to go ahead and do sinus surgery if it is already getting bad again. Also, if there is stuff still up there, it will just get infected with something sooner. So, I am asking if you say prayers, please pray they will do sinus surgery on me soon and I will not have to do IV's
The good news is my PFT's are still great, so there is no suspicion it has gone down into my lungs :-)
Thanks for listening to me ramble once again, and for anything you can offer to help.
Meliss

Thursday December 12, 2002

I had my CT today, then saw the ENT. I told him I wanted the sinus surgery ASAP, so it is scheduled for the 19th. I have had one before, so know it is not that big of a deal. I may have to do a small round of IV antibiotics just to make sure it is gone as much as it can be. It should be out patient, but I asked her to schedule me a room in case I need one.

My WBC was at 2.3, and I usually run at about 4. I need to double check that it goes up before the surgery so I can fight off anything I may need to.

So the 19th, I go under the knife! Ok, maybe not so dramatic, but it sounds good, doesn't it?
Melissa
 



Last Edited 12-12-2002