Restrictions Apply

It turns out my approximated transplant schedule in my previous post was fairly accurate. I was admitted on Friday, March 19th for an Allogeneic Hematopoietic Stem Cell Transplant. That evening I had two lines surgically inserted 1) a ‘temporary’ central line on the left of my neck that will remain for my stay here at the hospital 2) A tunneled line under my right clavicle which I will have for the next 6 months or so. When they say ‘tunneled’ they mean it – the line is actually forced into muscular tissue which then heals over a cuff on the line to give it a firm hold. The idea is to keep me from accidentally tearing the thing out of my chest when I leave the hospital by forcing my body to absorb the damn thing. Not my favorite procedure I’ve ever been awake for. That gives me a total of six (count ‘em baby!) lumens to hook up IVs – I’m currently only using four…

That Saturday and Sunday I spent receiving doses of a chemotherapy agent called Cytoxin designed to simply gore my bone marrow before the transplant. I’ve hated chemotherapy before but this stuff is in it’s own league, I was nauseous in ways I thought were reserved for at least the seventh circle of hell. Fun fact: Since you can’t hold down food, when you vomit you can tell from how far down the bile is coming up by how green it is!

On Monday I was still firmly under the grasp of Cytoxin and I began my Total Body Irradiation treatments. Twice a day for four days I received radiation treatments. The lab is in the basement of the hospital and the actual room I was in had one of those 3-foot thick metal doors that you only see in bomb shelters or bank vaults. I probably would have been safe from a nuclear blast in there – too bad I was being pre-irradiated. The radiation caused nausea of its own, destroyed the lining of my stomach and intestines, irritated and cracked my skin and thankfully caused such severe fatigue that I slept for most of those four days. Needless to say I was not a pretty sight after all this. Because the radiation needs to be able to properly penetrate your skin in order to cook your bones and organs I wasn’t allowed to wear any kind of skin lotion or deodorant, so for kicks I just smell.

On Thursday, March 25th I received my last radiation treatment and was ready to receive the stem cells my brother was so generously willing to donate. The poor kid spent something like 12 hours over the course of two days hooked up to a pheresis machine in order to provide me with almost 5 million stem cells. The transplant itself was uneventful and my body took the cells without any reaction.

And so I was re-born. a re-birthday if you will. Thanks D.

Today is day +4 on my transplant schedule and i’m just beginning to feel the effects of Dylan’s cells taking hold in my body. My bones feel like they have angry little creatures living inside them and they want out. I can only imagine this is how you feel when you regain consciousness after being hit by a bus. The pain and side effects (mostly more mucositis and mouth sores) should continue to get worse through ~ day +10 as the cells graft to my bones. This morning my doctors were nice enough to give me a PCA with Fentanyl – this stuff makes morphine seem like aspirin.

Now I hang out in my bubble until I have an immune system to speak of again, with any luck it should only be a matter of weeks before I can continue to recover as an outpatient and go home. At least my bubble has a view.

- Austin

    • Carly
    • March 31st, 2010 4:45pm

    Nice to hear from you again! Hoping that w/ the fentanyl helping you through the next few days you can say the worst is over. Sending pain-free thoughts your way!!

    • Pat Ludwig
    • March 31st, 2010 10:49pm

    Man that sounds like a lot of punishment. All I’ve got to say is…wow! Let the healing begin!

    • Sheryl
    • April 2nd, 2010 2:07am

    Hey! I came to your site via reddit a few weeks back and checked back to see how you are. I’m glad you’re still posting. You do have the nicest view I’ve ever seen from a hospital but I’m sure you’ll be glad when you can get back outside. Do you have more treatments coming up or are you just waiting now? Also, why leave the tunneled line in for six months? Just curious…

    BTW you’re still the bravest person I’ve commented to on a blog ;)

  1. Stay strong friend, I(we) have missed you. Get better.

    • Austin
    • April 4th, 2010 2:39am

    @Sheryl

    With any luck this will be my last hospitalization. I’m still getting a drug called Nupigen once a day until my white blood cell counts recover. Other than that i’m taking a wide variety of antibiotics and antifungals to try and prevent any infections until i have an immune system of my own. I’ll continue taking them even as an outpatient for the next 6 months or so. That’s it though, no more radiation or chemotherapy.

    The only thing that would get me readmitted to the hospital after this would be if I had an infection or develop severe graft-vs-host complications.

    The tunneled line gets to stay because even as an outpatient I’ll be coming to the clinic almost everyday to get my bloods checked and monitored. If I need a blood transfusion or any other blood products they can use the hickman line so they don’t have to give me a new iv every time.

    Thanks for reading!

    • Sheryl
    • April 5th, 2010 6:44am

    Thanks for answering my questions. Trying not to be intrusive but I’m amazed at the physical and mental stamina you have in this situation. The fact that you can endure so much and still share this experience with others makes you a heroic person. Soon after I first read your blog I saw MTV’s True Life: I Need a Transplant about a guy named Craig with leukemia and it struck me that you two are both in the same age bracket which you mentioned as being a rarer age to be diagnosed, so I thought that was interesting.
    He had to wait at least a month for his white blood counts to be high enough for the procedure to be considered successful and be released from the hospital. Will that be the same for you? I remember now that he had lines coming from his chest but they sure didn’t mention how they got there! He’s in remission now and it looks like there’s an update also. Don’t know if this interests you or not but here’s the link if so:
    http://www.mtv.com/shows/truelife/episode.jhtml?episodeID=166590

    You’re a good writer and I’m looking forward to reading more. Take care!

    • Jmufla
    • April 5th, 2010 1:26pm

    Hey! Another redditor here, just came back to check on you. I’m glad you’re still strong and posting… All my thoughts for a speedy recovery!

    • sheryl
    • April 21st, 2010 12:19am

    Hey. You haven’t posted in a while. So, how you are doing?

  2. Hey man, been a while, hope all is well. Give us an update!

    • Jmufla
    • July 9th, 2010 7:19pm

    @IamaRedditor

    *bump*

    It has been a while, hope you’re doing well… Look forward to your next update!

    • Mike
    • July 18th, 2010 10:36am

    I’m 28, and just celebrated my 7th year of remission after my unrelated transplant for ALL in 2003. Hang in there my friend. There will be a day when it all just seemed like a bad dream. Keep the faith when things get tough, and God bless.

    Mike

  1. August 5th, 2014
    Trackback from : Adrenalast
  2. August 16th, 2014
  3. August 29th, 2014
    Trackback from : acai berry
  4. September 1st, 2014
    Trackback from : musclebuilding secrets