My experience with rATG

I'm writing this blog post for two reasons. One, of course, is to update my friends and family, who are not on facebook, about my health. Two, to put my experience with rATG (Thymoglobulin, rabbit Anti-thymocyte Globulin) "out there in the cyber world" for those looking for other patient experiences with the drug. I found, when researching this myself, that there wasn't a whole lot out there.

As most of you know, my lung transplant pulmonologist believes from my recent drop in lung function and my recent xrays that I'm experiencing chronic rejection of my lungs. This is where scar tissue develops in the small airways of the transplanted lungs as a result of white blood cells (lymphocytes) attacking the area. My lungs are not a part of me, and therefore are being attacked by my own lymphocytes.

rATG is a medication that is used to treat chronic rejection. It kills the body's white blood cells in hopes of stopping the attack on the transplanted organs. So, what are the side effects of rATG? Normal reactions or short-term side effects to rATG are flu-like symptoms, like fever/chills, nausea, headache, drop in blood pressure, and increased risk of bleeding (infection and lymphoma can be long-term side effects, so I have to be sure to report any night sweats that might come weeks or months after taking this).

Well I took the short-term side effects a little too far. Even after being given IV Benadryl, IV Zofran, IV solumedrol and oral Tylenol, I had a full inflammatory response to the medication. Thirty minutes into my first infusion, I had complete and total full-body pain!!! I can honestly say that it was the worst pain I have ever experienced. The medication was stopped, and I was given IV Dilaudid and more IV Benadryl. Because this wasn't considered an allergy to rATG, I was once again started on rATG the next day after being pre-medicated with the usual meds plus IV Dilaudid. Other than some pain and itching, I did fine with the next 3 doses.

As a precaution, I am on IV Ceftazadime (antibiotic), oral Cipro (antibiotic), IV Gangcyclovir (anti-viral), and inhaled (via sinus nebulizer) Colistin (antibiotic), to try and prevent any infection since my immune system is so depressed right now. I will be on these medications for 3 weeks. Thankfully, I was able to go home after my last dose of rATG. The hospital is the worst place to be when you are immunocompromised and at risk of infection.

I will go back to Duke in 4 weeks to see my transplant pulmonologist. We are hoping that my lung function will have improved at that point. If not, my doctor will most likely give me Campath, which is similar to rATG, but much stronger and can wipe your immune system out for up to 12 months. We are hoping it doesn't get to that point. I do know of several other recipients who's lung function responded to the rATG, and I'm hoping I am one of them. :)

So, that's a rundown of my week at Duke. I am so thankful for my wonderful doctors and nurses!!! I have been home now for almost a week. I have slept most of the week away, but am feeling much better! I am definitely staying away from crowds for at least another couple of weeks.

Things to do before tomorrow

Everyone else going into the hospital tries to get too much done the day before also?? Right? Yeah, that's what I thought.

I'm making my list while I enjoy my coffee. :)

1.) Shower and shave! ha!

2.) Finish laundry

3.) Pack clothes/toiletries

4.) Make sure house is clean

5.) Pack up meds, diabetic supplies, nasal irrigation, OTC's

6.) Fill bird feeder

7.) Bathe doggies

8.) Call necessary people

9.) Pack up laptop and accessories

10.) Pack up camera and accessories

11.) Go to Target for snacks and other items

12.) Go to library

14.) Access port-a-cath

13.) Give TONS of love to Casey and the pups!!!


I am hoping they get started tomorrow on the rATG, but have a feeling it will be Tuesday. I am assuming I will have to have a nurse with me the entire first dose to monitor for reactions, so that requires an extra staff person (just like when I get desensitized to an antibiotic). That means scheduling changes, and that usually takes a day.

I forgot to mention in my last post that not only are they seeing changes with my lung function tests, but they are also seeing changes on my xray. They have noticed that my smaller airways are stretched out a bit, which means that air is getting in there and getting trapped and cannot get out. The reason for that is the scar tissue that develops there when you get chronic rejection. They are hoping this med will help that issue also.

Ok, coffee is done and I have to get busy. I'll be facebooking and blogging this week, and I'm sure for those of you on my FB, you will continue to see goofy pics that Jason feels the need to take. You know.. the sign pictures. LOL!!!!

Have a great week everyone, and please keep me and all of my CF friends in your thoughts and prayers. Many are struggling! Thanks!! Love to all!

Biopsy next week

My kidney transplant appointment and possible biopsy have been moved from the 25th to the 18th. I'll most likely see the nephrologist in clinic, and then he will determine whether or not I need to stay in the hospital for the biopsy. My nurse called again today to tell me of the new date and to also tell me to come prepared to stay. I'm assuming that I will wait around in clinic for my labs to come back, and if they haven't improved, they will send me over to the hospital for at least an overnight stay. How long I stay will of course be determined by what the biopsy shows.

During the biopsy, they numb the area over the kidney, and insert a needle, like the one above, through the skin until they reach the kidney. They then take a small piece of the kidney to be sent to pathology for testing. They will test it for infections, rejection, medication toxicity, and probably other things I don't know about. I should know pretty quickly what it shows, but say if it's an infection, we might not know exactly what "bug" we are dealing with for a couple of days. My nurse does expect it to be prograf toxicity or rejection. I'm a tough case because of my lung transplant, and any increase or decrease in anti-rejection meds can affect my lungs, so they will have to work very closely with my lung team before making any changes to my medication.

My nausea is better today, so maybe my body is preparing itself for The Cheesecake Factory tomorrow. ☺

Going home!

Discharge papers being filled out as we speak.. YAY!!!

Cali Roll

Jason just went to the cafeteria and got me a Cali Roll... yummmmmmmm!! I'm going to devour it.




My ultrasound results are in... my kidney is normal. There is some fluid in the abdomen, but they aren't sure where it's coming from. Last I heard, I might still be going home tonight. Who knows at this point.

No news yet

Well, apparently Duke is on divert status now and are actually turning people away from the ER and everywhere else. They are way over capacity. And apparently, this is one reason for the delay in reading my ultrasound. Normally, they would have the ultrasound read by now, but who knows when that's going to happen now. My assumption is that I'm going home tomorrow instead of today... that is if everything is normal on the ultrasound.

My pain is being managed pretty well. It's the stitches that are feeling "raw" and the majority of my pain is coming from that. Drinking and eating really irritates it. The bone pain is better today. I was told that your face would feel numb by the next day, and I'm assuming that's what's happened.

Jason and I just made a trip down to the cafeteria. At least gelatin doesn't seem to hurt my gums too much. I was craving a Cali roll, but didn't know how that would sit on my stomach. Maybe later. :)

I'll leave you with a pic of my sweet hubby. I'll update more as I know more.



Jason says peace through superior fire power!!

Nap time

Well, I just got back from ultrasound. My kidney function numbers are a little off today and I'm having some swelling around my new kidney, so they wanted to ultrasound me and make sure everything looks good. They want to rule out a lymphocele around the kidney. If the ultrasound looks abnormal then I'll have to have a consult with the kidney docs before being discharged. If it's normal, I may get to go home today.

The pain is much better today! I'm only needing oral pain meds every 6 or so hours. I keep thinking I have food stuck up under my lip, but it's just my stitches. They feel very weird to me. The ENT docs and lung docs have seen me today and both agree that things look good in those areas.

I'm thinking it's nap time since I didn't get but about 2 1/2 hours of sleep last night. Hopefully when I wake up, the ultrasound results will be back.

Thanks so much again for your thoughts and prayers. You guys are absolute best!!!

Randomness at 4:55 am

I have nothing better to do with my insomniac self in the middle of the night at Duke. I'm trying to be quiet, so that I don't wake Jason. I did manage to sneak some M&M's. Nothing more randomly fun than eating chocolate, eh?

They gave me a big 'ole boost of IV steroids yesterday during surgery. The anesthesiologist said that normal people produce extra steroids in their body as a response to stress during surgery, and that because I'm a chronic steroid user, my body would most likely not respond like it's supposed to... SO they gave me some help. I am going to assume that's why I'm wide awake now. And the fact that pain meds give me energy instead of making me sleepy like they do some people.

Here is my sweet husband snoozing. You can see the lights across the street at the VA hospital and my computer in the reflection. We forgot our camera, so all we are getting are photo booth photos with the Mac.



My pain is better managed now. I got a really good resident in here to see me last night. He stayed and chatted with J and me for a good while. Such a nice guy!!!

I'll let you know later if they are discharging me today. Keep your fingers crossed!! :)

It's meeeeee

Can you seriously believe I'm posting this pic? LOL. I probably won't remember any of this tomorrow and wonder what the heck I was thinking. 

I'm in my room and trying to not go off on the intern here on the floor. They have taken all of my good pain meds away... of course. I was getting some good stuff before I came up here. Jason is going to have to be my advocate when he gets back from the cafeteria. 

I'm having a lot of bleeding from my nose, but I'm guessing that's normal. The surgeon said that the infection is actually starting to "eat away" at the bone a little bit, but he thinks that this surgery, plus irrigation 3 or 4 times daily will slow that down. It's not actually "in" the bone yet, so that's good, but I've got to keep it that way. They made additional holes from my maxillary sinuses to my other sinuses to assist in drainage. And they actually had to pull the skin of my cheeks away from the bone, so my nerves will be affected for a couple of weeks. It should get better though.

I talked with Casey tonight. I miss her so much. If things go well, I might get to go home tomorrow! I hope so. Other than the pain not being managed that well at the moment and the blood draining down my throat, things are really not so bad... not as bad as I thought. I didn't expect to be blogging tonight.. that's for sure. :)

Thanks everyone for your thoughts and prayers and comments and emails, etc. 

Well it's about TIME!!!

I'm so glad that we got here on time, all red-eyed and bushy-tailed; for our surgery that was scheduled at 11:15 am. Surgery began at 4:09 pm. Meanwhile, I had me some grub. Welll, if I were an aborigine I'd be eating grubs. But then if I were an aborigine, I'd be in Australia and the sight of the hospital would bewilder and frighten me.  If I were in Australia,  I would be in a warm and sunny place in the middle of summer now.  Which is different from here.......where it's sunny.....and 71.....and the middle of ...winter?  Anyhoo, I was eating fish. Sushi. At Duke. Pretty good, too. See?

Mmmmm, it looks so delicious.  Don't you want some? You know you want some.  Mmmmmm, sushi.

Anyways, now we wait about 2 hours.

What do I do for 2 hours?  Alone?

Jason

To Occupy Your Time

The whereabouts of Charlie the Unicorn is still under investigation. But since you're all on pins and needles, I provide you with The Impossible Quiz.

Casey found this. You have her to thank, or curse, depending on how hard this quiz sucks you in. And YES, there is an answer, or method, or procedure, for EVERY question. Every question has an answer. They all have a rhyme or a reason. Enjoy!!!

After MANY attempts, I've made it to question 45. I'll be trying again later.

...and we're still waiting to get called back to the O.R.

Jason

...need cheeseburger IV, STAT!!!

It's noon, and we've got the oh-so-necessary-if-you-don't-have-one-you'll-die-on-the-operating-table-pre-op screening out of the way. And guess what? Christy is STILL having her surgery. She fooled 'em good.

So we're waiting to be called back to the dressing room so Christy can get her new threads. She's starving and there's no food in sight.....which is probably a good thing since that would mess her surgery thing up.

We'll post more later...

Jason

Pre-surgery checklist

1.) Port de-accessed and re-accessed. Check

2.) Packed. Check

3.) Shaved. Check

4.) Instructions given to Jason on keeping my blog updated.   Check

5.) Sleep medicine taken. Check

6.) Daughter and dog in good hands. Check :)

7.) Eaten everything in site since I'm NPO until surgery tomorrow. Check

8.) Getting a good night's sleep. Soon to be check I hope!!

Night all. I'll probably update at Duke before my surgery, and Jason will update afterwards. Pre-op is at 8:45, and I have to be at surgery check-in at 11:15. I would say surgery will be around 1:00 or so. Thanks so much for all your thoughts and prayers!!

Countdown to surgery... 2 days

Duke called me on Friday to let me know my surgery will be this Wednesday. Thankfully, I won't have to go earlier than Wednesday to do my pre-op. They are letting me do it that morning.

I'll be getting the Caldwell Luc procedure done (don't click on that link if you have a weak stomach). My 3 previous sinus surgeries were done endoscopically, which was much less invasive. They will actually be drilling through bone this time to help assist in the draining of my sinuses. Of course, this will not be a permanent fix for my sinus problems.. no surgery ever is for those with Cystic Fibrosis. The chronic infections we have are just that.. chronic, so the infection can be managed, but not eradicated. This surgery though, is supposed to assist in better irrigation of the sinuses as opposed the previous surgeries I've had.

I think side effects from the surgery include pain (of course, LOL), numbness of the gums for several weeks, facial swelling, and bruising. There are other more serious side effects that I choose to ignore. :) My surgeon is excellent, and I trust him very much. I couldn't be in better hands!!

I am hoping to be discharged on Friday, with a follow-up to the ENT doc next week. Please keep me in your thoughts and prayers.

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.

Crime Scene at Duke!

Jason here........at Duke..........with Christy..........waiting. So far, Christy and I have had less than minimal sleep, two half-lousy meals, watched two episodes of Torchwood, and have had countless consults and interruptions by doctors, nurses, and countless other medical professionals.

Christy and I had some downtime between our boredom and enui, and we decided to take a couple of laps around the floor. We noticed this scene, which I photographed below. After a minute of logical deducing, I realized that this patient MUST have died; and most likely from waiting for their own desensitizing!

Alas, I kid; the patient in that room is fine. They put the faux crime scene tape up themselves.

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... :(

The Short Leash Just Got Shorter

Renee showed up to help out a bit.  She managed to get Christy dressed and cleaned up a bit before leaving.

It was after 6:30 pm when Transport Services finally showed up.  So much for getting out of there before 4 pm.

I know, this isn't the best photo in the world and I snapped it so quickly I didn't take any time to really see what I was shooting.  After transferring the photos to the computer and browsing the shots, this photo just caught my eye in a way that I can't put my finger on;  I had to 

share it.

We've been "discharged", but we're not free to go home.  Here's my leading lady kicking back a bit before we go to sleep in our hotel room.  We will be staying in Durham until Wednesday due to other appointments and follow-ups at Duke.

We're missing Casey.  We really wanted her to be here today.  Christy says she'll start catching up on emails tomorrow and may get back to posting on here.

Jason