My Anaphylaxis

The very first night that I was administered IV Vancomycin, I got "Redman's Syndrome" about 30 minutes into the infusion. The infusion was stopped for awhile, and I was administered 25 mg IV Benadryl. I did fine with the rest of the dose at a very slow pace, running over 5 hours. The next night, I was pre-medicated with 25 mg of IV Benadryl, and the Vancomycin was set to run over 3 hours. After half of the infusion was given, I developed the symptoms again and was given another 25 mg of IV Benadryl. The rate was slowed, and I was able to finish the dose.

The third night that I received Vancomycin I was also pre-medicated with 25 mg of IV Benadryl. It was set to run over 4 hours per my request. Two hours into the infusion I was extremely nauseated and received IV Compazine. I had just had sinus surgery the day before and had been dealing with nausea ever since. Previously Zofran had been helping but, at this point, I needed something different. About 40 minutes after the IV Compazine was given, I started my anaphylactic reaction.

I had been having a dry mouth for 2 days and a fruity, sweet taste in my mouth. My husband said that my breath had the faint smell of fruit on it. I was tested for ketosis, which was negative. About 20 minutes after the Compazine was given, I complained to my husband about having a metallic taste in my mouth. It also became extremely dry (no amount of water could moisturize my mouth).

About 20 minutes later, I told my husband that I felt dehydrated to the point of passing out. I then told him I was having a reaction. It was a strange feeling that I cannot completely explain. It just scared me so much! I started laying back on the hospital bed, and my husband pulled the code switch in my room. In about 10 to 20 seconds I developed a rash around my neck and thoracic region, front and back, and I had a handful of nurses around my bed.

I had burning and tightening in my chest and stiffness in my legs. My blood pressure spiked to 212/178, and I was in tachycardia. My pulse was about 113 at that point. I then started feeling burning in my throat, sides, and my muscles all over my body were micro-spasming. It was then that I felt my tongue begin to swell. I couldn't communicate very well to the nurses and resident, because my mouth was still extremely dry making it difficult to enunciate words. My neck was so swollen at this point, that it looked like I had two golf balls on both sides of my trachea.

I had a complete feeling of impending doom!

During this time, my nurses had begun administering IV Benadryl and IV epinephrine. I began to feel some relief, and then I would be flooded with symptoms again, which gave them reason to continue this treatment for awhile. After pharmacy brought up Solu-medrol, I was given a bolus and then a drip of it. I was better at this point, but I couldn't relax because of my panic. They decided to give me Ativan to help me relax, which helped tremendously with my symptoms. My daughter was by my side, and did so well, even checking my b.p. regularly and helping out the nurses. She's such a tough girl, and stayed with me the entire night in the hospital so she could watch over me. :)

The Ativan was given about an hour and a half into my reaction. I remained symptom-free for about 2 1/2 more hours, when all of the treatment meds starting getting out of my system. I again started feeling burning and tightness in my chest and swelling of the tongue. I was given more IV Benadryl and another Ativan at this time. That was my very last reaction.

At this point, my allergist is leaning more towards the IV Compazine as being the culprit, but they have listed both Vancomycin and Compazine as an allergy on my allergy list. They will definitely desensitize me to IV Vancomycin if I ever need it again, and I will never be given IV Compazine again.

I wanted to share this with mainly my CF friends in hopes that if you ever feel any symptom "to the extreme", you will call for help immediately and recognize that it isn't normal. I am so thankful that I had my nursing staff on my case in a matter of seconds, and I'm so thankful I wasn't home when this reaction started. I also will carry an Epi-pen with me everywhere I go now. No more taking chances for me. :)

Finally a plan!

Well, most of you know I've been an inpatient at Duke since Monday. I came here to get rATG, a medication that basically wipes out your immune system. They are hopeful that my lung function will come back up with that, and the chronic rejection will be stabilized with it.

After talking with one of the lung transplant pulmonologists, she thought that it would be a good idea to desensitize me to an IV antibiotic and keep me on it for several weeks (the duration of time that rATG normally keeps your immune system suppressed). The reason for this is my chronic sinusitis, and the tendency for it to flare up and cause an acute infection in my sinuses, which could potentially go to my lungs. I was desensitized to Ceftazidime on Tuesday.

I was supposed to start the rATG yesterday, but my labs showed that once again my bone marrow was suppressed and not producing the red and white blood cells like it should. My numbers had fallen quite a bit from last week's clinic visit to yesterday morning. Because of the drop, it would mean that my body would have a harder time fighting off infection if I would have gotten the rATG yesterday. They decided to hold off on it, and give me two medications that increase the bone marrow production of both white and red cells. They wanted to wait and check my labs today to make sure my bone marrow responded to these two meds.

My labs this morning DID show a big improvement in just one day from the medications. That means that my bone marrow should keep responding, and that rATG should be safe to give. Therefore, and a BIG YAY FOR THIS, I'll be getting my first dose sometime in the next few hours. Side effects from this medication are basically flu-like symptoms, so I may not be feeling the greatest for awhile. If I do well with it, I should be able to go home Sunday or Monday. I'll be on the IV antibiotic and an oral antibiotic at home for 3 weeks, and another IV anti-viral medication that they give after giving rATG. They will also keep me on the two medications they started yesterday that are helping out my bone marrow.

I know it sounds confusing that they would want to raise my white blood cells with the medication they started yesterday, only to suppress them today with the rATG, but there are several different kinds of white blood cells, and all of mine have been suppressed with my bone marrow. With the rATG, they basically want to lower the lymphocytes that target b and t cells and therefore can cause rejection. Neutrophils are the white blood cells that kill off viruses and bacteria, and I need those, so that's the reason for bringing all of them all up first. I hope that made sense. :)

I'll keep everyone posted on how this all turns out. They won't know for awhile if the rATG has helped or not. I'm not sure when I will come back to clinic to repeat my chest xray and have pulmonary function tests again. I hope all of you are doing well!!! Love to all!

Going on a date with Caldwell

Caldwell Luc that is. I'll be getting this surgery in a few weeks. I saw my ENT doc on Tuesday, and he wants to do the surgery before I finish this round of IV's. I should be getting the surgery date in the coming days. I am SO not looking forward to this. My previous sinus surgeries were much easier, and the recovery time was a lot less than it is with the Caldwell Luc procedure. I would be eager to hear from any of you CFers who have had this done.

Desensitization was successful! It lasted for about 5 hours yesterday, and I was discharged about 6:45 last night. We made it home safely, and Jason went into work last night for a few hours.

I am going to be catching up on my photography class today. I am enjoying it, although we are just learning the basics right now. I still haven't finished last Friday's class, and I have to do yesterday's class too. I also need to catch up in the blogging world. I have so many blogs to catch up on!

Thanks everyone for your thoughts and prayers.

A day of..... nothing!

Sooo... I guess I'll be on the computer all day, or watching tv, or walking the halls, because they can't do my desensitization today. :( It requires an extra staff member, because an RN has to sit with me through the entire procedure in case I have an allergic reaction, and they are short staffed today. They assure me that I will be desensitized tomorrow though, which means I'll be going home Thursday instead of tomorrow.



So I guess Jason and I will hang here for the day and maybe go out to dinner somewhere tonight. They are pretty cool about letting me off the floor for awhile if I have nothing going on.. and I don't. They have already done blood cultures, but ENT hasn't been in yet to get cultures of my sinuses. That will happen sometime today. I have a student nurse working with me today. Having been a student nurse myself, I think I'm a little more sympathetic to them than most patients. She's really good, and on top of things.. which I like. I also met one of the new transplant pulmonologists today. He seems to be on the same page as Dr. P., my regular pulmonologist, so thats' good.

I'll update more from this exciting place later. Right now, I have a cheese danish (and lots of insulin) to devour. :)

Party Room!!

We arrived at Duke about 6:00 and I was in my room by 7:00. We actually got one of the "party rooms" that has a sofa, frig, table and chairs, and tons more room than the other rooms. I have been coming to Duke for 8 years now and have only gotten a party room 3 or 4 times. Anyway, it's really for those who have a lot of guests, and well... I won't be having any (other than my hubby), but it's still nice to have extra room.

As I've blogged before, I have been having night sweats for several weeks now. They have gotten so bad now, that I have to change my clothes sometimes twice in a night and have to move from bed to bed because my sheets are so wet. Because of that, and because the Cipro doesn't seem to be taking care of my sinusitis, they have brought me in for some IV antibiotics. I was supposed to come in last Thursday, but they had no beds on the floor I need to be on, so they said to wait until today. Nurses on this floor are trained to do desensitizations, because this floor (the pulmonary floor) is also a step-down unit.

The last time I had night sweats this bad was when I had a mycobacterium in my lungs. They do not think that I have any mycobacteriums in my lungs, but they are going to do a blood culture and a sinus culture to make sure there isn't one in either of those places. These sweats could be coming from the pseudomonas that they know is in my sinuses already. It's just strange that it has never given me night sweats this bad. My body has changed a lot.. in a lot of different ways.. since kidney transplant, so it's possible this is just something else that has changed.

So... Jason and I are settled in. Casey is at her dad's. It was his birthday today, so it worked out well that she got to go be with him. I talked to her earlier and she was baking her dad a carrot cake. She was whispering on the phone and she said..."Mom, what do you do if you don't have any vegetable oil and the recipe calls for that?" I told her to use olive oil, and she had no idea that one could be substituted for the other. She later called and said it turned out great. :)

Jason is on his playstation.. no, he doesn't go anywhere without it.. haha. I have been going through admission paperwork with the nurse and intern. We have good interns this time around (the nurses have confirmed). When you are in a teaching hospital, you just never know what your gonna get.

They are supposed to come in later tonight and get blood cultures and sinus cultures. Who knows how late I'll be up for that, but that's ok, as long as they can start the desensitization tomorrow. If all goes well, I should be out by Wednesday, and will be on the IV's for a month. I see the ENT next week to discuss surgery options.

Thanks everyone for your thoughts, prayers, comments, phone calls, emails, etc... They mean so much to me!

On my way to Duke

I have to go to Duke for a couple of days to get started on some IV antibiotics. I'll be blogging tonight about it, but in the meantime, this post will give you an idea about why I have to go in.

Gotta go... check back later for updates. It might be 7 or 8 tonight before I get a bed. They've been really low on beds.. it's why I waited until today to be admitted. I guess everyone is sick... :(

Sinusitis Sunday

A lot of us with CF deal with sinusitis on a daily basis. Some of us pretty much always have a headache. Actually, I'm fortunate to have had only 3 sinus surgeries in the past. I know people in their 20's who have had close to 20!!! I can't complain!

I just went on IV antibiotics in October for my sinusitis. It really helped, like it always does, but they are rearing their ugly head again. My nephrologist says that because I've been on high doses of immunosuppressants and because at the time of transplant, they gave me a medicine that completely wiped out my immune system, my sinuses are flaring up again. I couldn't get an appointment to see my ENT doc until February 3rd, so I am calling my transplant pulmonologist tomorrow to see if he can start me on Cipro, an oral antibiotic that may or may not help. The bacteria in my sinuses is very resistant to medications, so most of the time I have to go on several different antibiotics (usually at least one of these being IV) to work together to fight the infection. We'll see if the Cipro helps.. I really hope it does.

I haven't heard back from my EBV test yet. I think the results are supposed to be back by tomorrow. I'm still very tired, and that of course could be due to my sinuses too. 

We took Jason to a German restaurant last night for his birthday (which is Tuesday). It is about an hour from here, but the closest one that we know of. It was awesome! We all love German food. Tonight we are taking my mom (who's birthday is Wednesday) to dinner. Jason will be 35 and my dear mom will be 60! I can't believe it.. she was just 40... uhhh...yesterday? Where does the time go?

The Dead Has Awakened

Christy just finished her second "outing" for the day.  A little after 6 pm she walked one lap on the floor with the nurse.  She completed another two laps about 30 minutes ago.  We had to crack the whip both times to get her out of the bed, but she proved herself a real trooper.  We are at one end of the hall in this shot.  The floor is laid out in a triangle pattern.  One lap is, of course, 3x this distance.  When your side is in stitches and you've been under for almost four days, this is doing great!

This morning I asked God for two things.  The first thing was for visitors.  The second thing I asked was for someone to come relieve me for one night.  

Request #1: One of our pastors from church, Larry, paid us a visit this evening.  He brought us couple of short books and some muscadine sauce that his father makes and sells out of his own vineyards.  I've heard of jelly, but sauce?  I forgot to ask but maybe it would be good served with a grilled steak or chicken breast.  Also, the parents of one of Christy's best friends from Virginia came a callin', too.  

Request #2: Renee, Christy's sister, called me and said she will be driving up tomorrow.  I think her husband and children are coming as well.  Renee asked me if I wanted her to step in for me for a while.  Long story short: Renee will spend Saturday night here in the room with Christy.  I will be going to a hotel room to pass out.

I'm not trying to put down or shun any of our friends or family by mentioning this; Christy and I do not think any less of someone because they don't come to visit.  It's a long drive from our home to Durham, NC.  I know they have lives and responsibilities.  I think if I had asked God for a truckload of telephone poles, He'd have had one roll by the hospital as I was looking outside.  He might have gone so far to park one on the street out front.  God is providing Christy and I with a lot of little things.  His involvement in our lives at this time is huge for us and I really want to acknowledge His presence and His work.

Christy is down to one I.V. tube, however, she has three or four sites still accessed.  They're now using her port which has really helped with the comfort.  We've also gotten rid of the air casts that were on her legs since she is up and moving about, now.  The air casts were wrapped around her calves and a machine would periodically inflate and deflate them to increase circulation in her legs, thus reducing the risk of blood clots.  We also have exorcised the demon, that was the vitals monitor, and have sent it back to the infernal depths from which it came; the storage closet down the hall.  Now we'll get some peace and quiet.  Some, anyway.  With Christy being freed from so many wires and tubes and pipes and conduits and machines and bags and hoses, it's a lot easier to get her in and out of the bed.

Christy is awake but still slow.  Some little things pass right through her short term retention.  But she is remembering most of her experiences, now.  She still wants to sleep a lot and that could be her body healing, too.  I would venture to say that going into this surgery, Christy's mother was in much better physical condition than Christy was.

Based on Christy's progress so far, Monday is looking like the earliest discharge date that we might get.  I'm holding out for Sunday.  How much more active and stronger Christy becomes in the next 36 hours will determine that.  Please keep saying your prayers.

Jason

Absolutely Famished.. and not sure why!

Yeah, I'm starving. Ever since I got home from the hospital, when I haven't been sleeping, I have been EATING! I have gained 5 lbs in a week. I have no idea where this is coming from, but I'll take it!!!

Since my body is allergic to the IV antibiotic I am on, and I have to be desensitized to it in order for my body to even accept it, I always feel horrible the few weeks that I take it. I sleep a lot, am tired when I'm not sleeping, my fibromyalgia acts up, my diabetes acts up, and I walk around with some dizziness pretty much the entire time. Usually, I am nauseous too.

Unfortunately, I have all of the other icky feelings this time, but only small bouts of nausea. The rest of the time, I have been starving and eating everything in the kitchen that I can get my hands on. That's really a good thing since my docs wanted me to gain about 10 lbs before transplant. I only have 3 more days left, but I'm well on my way!

Update

They are getting ready to start my desensitization. It will take about 5 hours. They start infusing a bag of saline with a tiny amount of antibiotic in it. They change bags every 15 minutes and increase the amount of antibiotic in each bag, until you are getting a full dose after about 5 hours. Sometimes I have minor reactions during that time, but I have never had any major reaction. I should be discharged tomorrow if everything goes well with the desensitization.

I just had a wonderful surprise visit from Nate, Tricia and baby Gwyneth. It was so good seeing them. Tricia is getting her biopsy done tomorrow to determine the next course of treatment for her lymphoma. She looked absolutely gorgeous!!!!!! Gwyneth is so active, and I could really see a lot of Tricia in her. Please keep Tricia in your prayers.

My new blog design should be coming by the end of the week. *Yay* I'm so glad to get rid of this boring one.

Headed to Duke

I've got a little more packing to do before going to bed. I don't know how long I will be at Duke, but will pack for a week just in case. I am hoping to be out by Wednesday.

They will admit me tomorrow (oops, I guess I mean today, since it's after midnight) after I have my pre-op appointment. They will probably do the desensitization on Tuesday to the IV antibiotics. I'll then be home on them until time for transplant. Wow.. that's 2 weeks away.

Anyway, I'll update this evening in the hospital.

The next few weeks

Things look like they are rolling now....

My mom and I will go in on October 27 for our pre-op appointment. They will be doing the final crossmatch that day to make sure that I am still compatible to my mom. Prior to my lung transplant, I was crossmatched with my uncle and found that it was a negative crossmatch (which means we were compatible), I then received several blood transfusions. They redid the crossmatch, and it was a positive crossmatch. I had to wait several months for it to once again become a negative crossmatch in order to receive part of his lung. My mom's crossmatch wasn't done until after all of that and it was negative, so I was able to then receive lobes from each of them.

Two months ago when they did the crossmatch with my mom, it was negative (again that's good). I haven't received any blood transfusions, so they are expecting it to still be negative, BUT because of my high antibody level (likelihood that you will reject donor organs and the reason I couldn't receive cadaver lungs or kidney.. only relative's organs), they want to make doubly sure that nothing has changed over the past 2 months. They did say if the result were for some reason positive, the transplant would be cancelled. Again, we aren't expecting that!

After our pre-op appointments on the 27th, I will be admitted to start IV antibiotics. I will probably be in the hospital several days. I will then come home and do home IV's until time for transplant. My lung transplant pulmonologist and my infectious disease doc both think that I need to be on IV's 2 weeks prior to the kidney transplant and 1 week afterward to ensure that the Pseudomonas Aeruginosa, an opportunistic infection in almost all CFers, is under control. Because of CF, it will never completely go away, but they are hoping to keep it isolated to my sinuses and keep it from entering the blood stream or other organ.

On a different note, it's almost Halloween time, and it's almost Casey's birthday (Nov. 6). Last year, we had her birthday party/halloween party combined. It was really a 70's costume party. It was a lot of fun. Casey was a go go dancer. Very cute.. I can't find the pics. I think I packed them away. That's when our digital camera was on the blink. Anyway, this year she is having her Halloween party/birthday party at her dad's house. She is going to dress up as Alice from the book Twilight. We have bought her a short, spiky, dark wig and a beautiful black dress. Now, all we have to do is find the cullen family crest choker. All of you twilight fans should know what I'm talking about. I found one on ebay, but it was $40.00. I'm thinking we can just make it ourselves.

Jason has to work this weekend, so I will be packing up Casey's room. We are moving her furniture out (bunk beds and dresser), and putting in a queen size bed and dresser to match. I also have to clean out her desk and clean off her shelves, which believe me... is a job in itself. Jason is off tonight, so I might get him to take me out to dinner and a movie. We'll see how I'm feeling by 6 or 7.

Here is a pic of Casey and my niece Caroline at Halloween 2 years ago. Casey got that mask when we were in Venice and found the perfect dress to match. They are so cute....




This is who Casey will be this Halloween!! She's a "nice" vampire from the book/movie Twilight. Her two best friends will be dressed up as Rosalie and Bella. I will be sure to get pictures for all you Twilight fans. :)



Thank you for all of your prayers!!!!!

When it rains, It pours

There is so much going on right now in my life. Please keep my family and me in your prayers. I'm not sure if I'm going to be admitted tomorrow or not for IV antibiotics. My lung transplant doc who usually handles my admissions for desensitization has completely given this over to my infectious disease doc who has yet to review my case. I'm hoping to know something by tomorrow morning. I love Duke, but sometimes their policy is to "hurry up and wait" if you know what I mean.

Anyway.. I'll keep you posted! Thanks everyone!!

I have a date!!!!!!!

For my kidney transplant that is....

We finally got it all figured out, and scheduled, so it is definitely going to be on November 10th now. I will be going into the hospital next week to start some IV antibiotics, but hopefully will only be in there a couple of days. Then I'll stay on home IV's until time for transplant. After the transplant, they are anticipating me being in the hospital 5 to 7 days. That is SO much different than when I had my lung transplant. I was there 16 days then, and had to be readmitted several more times for another surgery, and complications. For my kidney transplant, I'll only be in ICU for one night (as long as everything goes according to plan), and then I'll be moved to a step-down room.

My husband Jason, or daughter Casey will be updating my blog regularly during that day/week to bring you updates. Please keep my mom and me in your prayers! My mom is so awesome for giving me yet ANOTHER organ (she and my uncle each gave me a lobe of their lung when I got my lung transplant). She told me I couldn't have anymore after this...hahaha! Also, please keep the rest of my family in your prayers. I think dealing with the wait while your loved one is having surgery is worse than being the patient!! Thanks guys!

Blogless lately!

I have been exhausted these past few days and haven't been blogging much. I'll be back to my old self soon though. I seem to be sleeping my life away at the moment. My surgery won't be on November 7th. The transplant coordinator called today and said they can't get a donor surgeon lined up for my mom that day. We are now looking at the 21st of November. She is going to let me know for sure (hopefully) tomorrow. She said they can do it on Monday, October 27th, but I'm just not going to be ready that early. I need to be on IV antibiotics at least 3 weeks before surgery to ensure that my sinuses are "tuned up" for transplant. Having the surgery on the 27th just won't give me enough time.

Please keep Tricia in your prayers. She is in the hospital battling pneumonia at the moment, and will find out in the next few days if the chemotherapy she's been taking is treating her lymphoma or not. She needs all the prayers you can give her now!!

Decisions

I spoke with my nephrologist in Charlotte this morning. He agreed that I go ahead with transplant and skip the dialysis. That's 3 docs now that agree (well really 4 because my pulmonary transplant doc suggested this a month ago). I'm really feeling like this is where God is leading me. I have peace about it, as do my husband Jason, daughter Casey, my mom, and the rest of my family.

I know that this transplant will not be nearly as traumatizing to my body as my double lung transplant. It's still a major surgery of course, but I keep telling myself that I've been through worse and survived, and I'll come through this just great too. I couldn't be in better hands than the docs at Duke.. that's for sure!!

I will talk with the transplant coordinator on Monday. She is out of town the rest of this week. We will then set a date. I am thinking the first or second week in November (I really don't want to do it on Halloween). I think that should work for them according to my conversation with her the other day. I'll post the date as soon as I have it.

I will have to go into the hospital in about 2 weeks for desensitization to some IV antibiotics that I will be on for several weeks prior to the transplant and about a week following the transplant. I still have bacteria (related to Cystic Fibrosis) in my sinuses that could potentially cause a problem during and immediately following surgery, so they want to make sure I'm covered with some pretty strong antibiotics to keep these at bay. I'll only be in the hospital for this for about 3 or 4 days, and then I can finish the IV's at home.


I want to thank everyone for your prayers, comments, and good thoughts! They mean so much.

Long day... good and bad news!

I saw my lung transplant pulmonologist today at Duke. I was due to see him soon anyway, but my nephrologist thought I should see him this week, since I had some dehydration and fever. He is essentially my primary doctor.

We discussed a lot today. First of all, he thinks that my sinuses are rearing their ugly head again. He seems to think that's the likely source of my fevers. There are 2 things that I can do for that now. I can have surgery of course, which is going to be due again sometime in the future.. I'm just not sure if I want it before kidney transplant. Then there is IV antibiotics. For me, that means being hospitalized to be desensitized, because I am allergic to all antibiotics that treat the bacteria I have in my sinuses. This will most likely be the first route we take. He wants to see how my fevers are in the coming weeks.

We also talked about my anemia. He is going to let my nephrologist take care of that since he is closer to my home, and it will require me to get IV iron once a week. He said with my antibody level already so high, that if the IV iron doesn't work, he won't hesitate to give me a blood transfusion before transplant. He said the transfusion might give you more anti-human antibodies (those antibodies that make me so incompatible with the general population), but it's not going to make that much difference with me since most transplant patients have an antibody level around 5 or 10% and mine is around 90% already.

Speaking of antibody levels... I was told when I got my lung transplant in 2001 that I would never be able to receive a second lung transplant if I ever needed it. This was because of my antibody level which required me to get lobes from my relatives instead of cadaver (stranger) lungs (and the fact that they had used the only 2 relatives I was compatible with out of approx 40). I hadn't really thought about that over the years. I still accepted that to be true. They had tried many rounds of plasmapheresis to try and reduce the antibody level prior to my lung transplant, but that didn't work. Since I seem to be having some chronic rejection (explained below), I thought to ask him about that today. He told me that now they give the drug Rituximab, and it does a great job of lowering antibody level. For those of you who keep up with Tricia's story, you may remember she was on that for her lymphoma, but it didn't treat it like they hoped it would. My doc didn't seem to think that I would get to the point of needing another transplant, but I do at least have that hope now.. that if I needed it, I could get it. It's the first time I've ever had that hope. :)

Ok, about the chronic rejection. I started some last year. I was put on some additional anti-rejection medications to treat it, and my lung function seemed to respond to it and got better. Today, my numbers looked pretty bad. My doc seems to think that its due to my fibromyalgia, fevers, kidney disease and general fatigue more than anything. He says that just about all transplant patients who are almost 7 years post-transplant, like me, will have some chronic rejection. They may never know it, but it's there. You can read here for a simplified description of acute vs. chronic rejection. Because my lung function has dropped, my doctor wants to do a bronchoscopy on me when I return from the beach. It's something that post-transplant patients get plenty of, so it's no big deal. It checks for all kinds of infection and acute rejection and can sometimes detect chronic rejection.

My nausea was a big topic of the day. My doc wants me to discuss with my nephrologist which would be best.. transplant now, or transplant after a few months of dialysis. Studies do show that those kidney transplant recipients who haven't had dialysis, tend to do better than those who have, but those results could solely be based on the fact that MOST people who get dialysis first, are doing so because they have a long wait for transplant, and their kidneys are almost not functioning anymore. My reason for dialysis would simply be to help build my appetite and give me some strength.

There you have it. I know I'm quite long winded lately. Sorry for that, but I hope that explains everything!!

Sleep, sleep and more sleep

I'm not sure if it's the infection or the IV antibiotics that are making me so tired.. but something is definitely doing it. I haven't been online much in the last week and a half, because I have been SLEEPING!!! I am averaging about 18 hours/day of sleep. I haven't been like this since pre-transplant. Since I am allergic to these antibiotics, even though I was desensitized to them, I am thinking that could be one reason I'm so tired, or maybe this infection is just the worst I've had since transplant. My kidneys don't work so well, so maybe that has something to do with it.

 Anyway, I am feeling better yesterday and today, and tomorrow Jason and I are taking a trip to the mountains for the day. Casey is at her dad's this weekend. :(

I'm working on a photo/video montage of Casey. I can't wait to post it. Some of these pictures I have of her as a baby seem like they were taken yesterday!! Time really does fly, as all you parents know! I do enjoy her so much now, but looking at these pics from 10 - 12 years ago make me wish time didn't go so fast. 

Keep Tricia and Bjorn in your prayers please! Tricia got her new lungs yesterday, and Bjorn got his 2nd pair of new lungs last week.

Home feels so good!

It feels so good to be home! As soon as I got here, I crashed for about 4 hours. I always do that when I get out of the hospital. It takes me a couple of days to recover. I'll be on IV's a month, and I'll meet with my ENT in the next week or so to schedule sinus surgery. It was supposed to be in May or June, but they are going to move it up.

I didn't think that the nurses on 7800 could get any better, but I was blown away this time by all of them. They were such patient advocates, and I believe some of the best nurses that Duke has are on that floor. Some of my old nurses had left.. some are still there, but all of the nurses that I had this stay were fairly new. They truly deserve a pay raise. They work their butts off!!! 

I remember working on a step-down unit immediately after graduating from nursing school and it was just like that. We barely had time to grab something to eat for lunch, and we usually stayed at least 45 minutes to an hour past our shift to finish all the charting. I am so thankful for all of my nurses who put 100% into taking care of patients. It's not an easy job, but I know from experience, it can be very rewarding!

Day 3 in Club Med

I was finally moved to 7800 last night. I was so excited... it's almost like coming home. I've known a lot of these nurses for years on this floor, and some of the patients too. I've spent Christmas here, and now I'll be spending Easter. Some of them are like family, and it's good to see them after being gone for a year now... Yes.. it's been a year since my last hospitalization!

I am still waiting to hear back from cultures as to whether or not I'll be starting IV antibiotics. It's a long story.. I won't go into it here. I'll explain in more details on my caringbridge site. 

Last night as I was being wheeled down to 7800, I ran into a very familiar face!!! A lot of you have been keeping up with Tricia and Nate's blog. Well, Nate was coming down the hall, and I was like "Wow, Nate!" I explained who I was and he and I chatted a bit. Today, he and my husband Jason went out to lunch and now they are at church. I was able to go visit with Tricia some today. She is so beautiful.. inside and out.. what a sweet, sweet spirit that woman has. I can't say enough good things about these two wonderful people. If you haven't checked their blog out yet click here. 

Tonight Tricia and Nate are hosting a talent show for the nurses. It should be interesting!! I hear there are quite a few ODD talents. I am sure Nate will be posting pics!!! I wish we had brought our video camera!!