Saturday, March 6, 2010

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.


OceanDesert said...

You already ARE one of them! I know it!!!


Shea said...

Prayers and hugs!!!!

Jess said...

That sounds like some pretty serious reactions! Bet the Dilaudid helped, I'll message you back on FB soon

Genevieve said...

I hope you are feeling better. I'm so concerned about you. Praying for you!

I've been on Medrol for seven weeks now, if you know of anyone of your CF friends who have been on steroids for awhile during pregnancy, please let me know. So concerned about being on this!

julie said...

Cindy , thank you for your insight on treatment with ratg. My neice Jessica is undergoing treatment this week and your site was very helpful on what to expect and be prepared for. Good luck to you and god bless you and your family Julie Couch

Anonymous said...

Hi and i hope you are doing well today.My name is Mike and my dad has also had a double lung transplant at DUKE.He is about to start rATG.I was just looking for some insight on what he might face in the coming days ahead.Your article was very good and i wanted to tell you Thank You and i hope you are doing great.Thanks again Mike.

Anonymous said...

Hi, my name is matt. I just recevied a double lung transplant on dec.28th 2013. I actually walked into the er in oct. Thought it b a normal stay for ivs. I have cf an 34 yrs old. Two hrs after going to er that night. They inducded me in a coma. Where they couldnt figure out what was wrong. After a.week they finally life lighted me to upmc. Where i continued my coma til bout dec. Where they said that my lungs where done an needed a transplant. Thankfully the god lord granted me a pair of lungs 3 days after xmas. The best present anyone could have. A second chance of life. Epsially to me bc i had just got married in aug to the most amazimg wife an son anyone could ask for. This past week of 8-8-13. I had sum chronic rejection like u. I also just had the ratg given to me. I was lucky an really didnt have any reactions. I basicly was lil itchy, an the worst was, i had a bunch of fluid build up in my legs, neasusea too. Ur right about finding any info on the ratg. How r u feeling after it now? I recevied 6 doses of it. Sumday was my last dose an im back home. Im still having headaches, an little bit of neasuesa. I hope things pull for you an me both!