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Crohn's Disease Forum » Treatment » My Stem Cell Journey


 
06-04-2010, 11:15 PM   #1
Guest9283
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My Stem Cell Journey

...
I've edited a lot of personal posts.

Last edited by Guest9283; 12-30-2012 at 04:58 PM.
06-04-2010, 11:18 PM   #2
Guest9283
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To introduce myself, I am a 25yr old male who has had crohn's disease since the age of 12. I am doing an autogulous stem cell transplant, and will be blogging about it.

Last edited by Guest9283; 10-10-2011 at 06:15 PM.
06-04-2010, 11:57 PM   #3
Guest9283
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Tomorrow will be the first day I will actually have time to put blogs down of the days i have been here, but I'll put down 6 days or so worth to catch up! Just TONS & TONS of tests and a few roller coaster rides due to those nodules on my lungs. First Chemo Should start monday. It was supposed to be today but I'll get you all caught up tomorrow. Head is shaved and ready to rock and roll!

Last edited by Guest9283; 12-30-2012 at 04:49 PM.
06-05-2010, 01:24 AM   #4
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You truly are a brave man and very inspirational with your great attitude and high spirits. I hope and pray all goes well and the treatment is every bit as successful as possible.

Do you have any rough idea of how long it will be until you are hopefully well-i know that it is very dependant on many factors, but generally is it 6 months of treatment etc?

Hope the test results are favourable too, really look forward to hearing more!
06-06-2010, 09:55 PM   #5
Guest9283
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You truly are a brave man and very inspirational with your great attitude and high spirits. I hope and pray all goes well and the treatment is every bit as successful as possible.

Do you have any rough idea of how long it will be until you are hopefully well-i know that it is very dependant on many factors, but generally is it 6 months of treatment etc?

Hope the test results are favourable too, really look forward to hearing more!
Thanks! Knowing I can be an inspiration in any slightest way is the biggest motivation I could receive. I truley believe the hardest part about the transplant for anyone considering doing it is the emotional part, and keeping that positive attitude.

To answer your question the transplant process is around 2 months. You come up to chicago for one week of pre-transplant testing. You go home for 10 days, come back for two weeks to harvest your stem cells. Go home for another two weeks, and come back for a final three to four week final transplant phase. After that they say the rule of thumb is to stay as sterile as possible for 3 months while your immune system builds itself up. That is standard protocal right now. However it is constantly changing as they fine tune the transplant procedure. Also as you mentioned though everyone is a bit different, responds differently, so just keep that in mind when I try to answer this question. I can tell you my stay in Chicago has so far been a great experience.

Thanks for the encouragement!

Last edited by Guest9283; 12-30-2012 at 04:49 PM.
06-06-2010, 09:59 PM   #6
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Early this morning, I was discharged from the hospital in Texas, in order to catch a direct flight to Chicago, and a cab directly to Northwestern Hospital where I was admitted upon my arrival.. I had a picc line in so we just capped off the lines for my flight. I must say I was VERY impressed with the facility, and they probably have the largest bathrooms I have ever seen in any hospital! The staff went above and beyond to make sure l felt as comfortable as possible. I feel tired due to not having any nutrition today. The TPN will arrive tomorrow – so in the meantime, I just drank a few watered down Peptamen 1.5 cans. I just hope they can figure out what is going on in my lungs, and I can get all the pre-transplant tests done, and be given a green light to get this done.

Last edited by Guest9283; 12-30-2012 at 04:49 PM.
06-06-2010, 10:00 PM   #7
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Today I met the 3 doctors running the trial and they basically went over everything with me. I was given a transplant calendar of what to expect and they really made me feel like I was in good hands! They went over all the medications I needed, and explained to me all the tests they will be running this next week. They were not kidding when they mentioned how thorough they take all the testing to make sure I am in absolutely ideal shape - making sure I don’t have any sign of infections at all. As soon as they left, a dentist and his tech came into my room with an x-ray machine and instruments. He spent almost an hour taking x rays and poking and proding (not painful at all)around in my mouth until he was satisfied with his assessment. Next on the schedule was x-rays of the chest, lungs and everything else you can imagine. I already had a picc line in, so they had my tpn and lipids ready and waiting when I got back to my room. First, I filled more blood vials for tests, than I had even done in a single sitting – and that’s saying A LOT lol. At the end of the day, I felt very tired, but all for good reason! They told me there would be more tests to be completed over the course of the next couple of days.
So good night, I’ll report back to you all tomorrow gang! I asked for an ambian and it has started kicking in ZZZZzzzzzz… =)

Last edited by Guest9283; 12-30-2012 at 04:49 PM.
06-06-2010, 10:22 PM   #8
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Last edited by Guest9283; 09-24-2012 at 01:54 PM.
06-06-2010, 10:26 PM   #9
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This morning, my vitals at 7am showed that my blood sugar was low and needed some insulin. So, I made a hot cocoa and that rectified my blood sugar levels. Then, it was time for more blood work – suprise surprise lol. However, today my picc line was being stubborn and wasn’t about to give up any more blood too easily. So, they put heparin in the line, and came back and received their mountain of blood vials again. Pulmanory came in and told me that I will have a broncoscopy tomorrow to see if those cultures have grown around my lung nodules. They want to make sure I don’t have an infection in my lungs and are hoping the infiltration seen on my scans from Texas is just crohn’s like they think. As I said, they are being extra extra pre-cautious. Based on what they see, they might have to go in with tubes between my ribs to perform an open lung biopsy the day after. They also ordered a CT of the chest today. Crossing my fingers everything is fine and we can proceed!! I love the staff and all the nurses here, just had to give them all a second mention for their attitude/patience and overall general caring/understanding. Going to bed, can’t wait to get all these tests done…. Ready to get the show on the road!

Last edited by Guest9283; 12-30-2012 at 04:50 PM.
06-06-2010, 10:49 PM   #10
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Well, today the pulmonary docs came in and said that the ct scans showed that the nodules are getting better ,and it looks like after talking to 5 teams of different doctors (Infectious Disease, Internal Medicine, Pulmanory, Hematology, Gastroentorology,) they came to the conclusion that it looks to be crohn’s related. They then told me they were going to start Mobilization/chemo today!!! After a long day of more last minute testing, while waiting on insurances approval, we didn’t get word back from them. Looks like they went home early for the weekend (cough cough). I was then told I was to be discharched tomorrow (Saturday) and re-admitted Monday for the chemo/Mobilization – due to not hearing back from my medical insurance company. Apparently, they are closed over the weekend, and will only be back on Monday. What a drag – I was pumped and ready - shaved head and all…

Last edited by Guest9283; 12-30-2012 at 04:50 PM.
06-06-2010, 11:16 PM   #11
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Last edited by Guest9283; 09-24-2012 at 01:54 PM.
06-06-2010, 11:17 PM   #12
Guest9283
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Sunday the day of rest! That’s exactly what it was today for me. I slept the entire day and it felt good. Had the Picc line team come and make sure I could work the Pump ok, and they delivered some more supplies. As weird as it sounds, Im excited for tomorrow to come around. I know I’ve got a lot of prayers behind me, good support system, and I can’t wait to get it over with! Wish me luck!!!

Last edited by Guest9283; 12-30-2012 at 04:50 PM.
06-07-2010, 02:53 AM   #13
DustyKat
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I wish you all the luck in the world and my thoughts and prayers are with you. Thank you so much for giving us such a personal insight into your journey. I'm staying tuned for the next instalment! All the best.
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06-07-2010, 03:49 PM   #14
belle1999
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Good luck!
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06-08-2010, 07:56 PM   #15
Guest9283
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Good luck!
Well thank you Bella!
Actually they could not find a room for me yesterday(monday) on such short notice from of the time the insurance approval. So I am actually doing the chemo through my picc line right now as I type this.

Last edited by Guest9283; 12-30-2012 at 04:51 PM.
06-10-2010, 02:33 PM   #16
CrohnsHobo
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My last post got diverted in the forum switch over.

But thanks for posting all of this. My Dr. at UCLA mentioned going to Chicago for this if Humira fails (already failed a ton of other drugs).

Nice to hear a first hand account. I hope it does great for you. You have already showed so much patience and grit, so I am sure it will!
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06-10-2010, 08:09 PM   #17
phillycrohns
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Wow! I admire your fighting spirit. This sounds very exciting and promising. I hope you will indeed be cured! That will give the rest of us hope. Good luck and keep the posts coming. My thoughts and prayers are with you.

Chris
06-10-2010, 08:41 PM   #18
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I haven't been on in a loooonnng time. I felt good for a while. Oh well. I am so sorry to see you are young and sick!!! I'm a little--okay 20 plus more than you. But, any way, what hospital are you having this all done at? They will do the transplant to? Sue
06-11-2010, 11:04 AM   #19
Guest9283
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..

Last edited by Guest9283; 09-24-2012 at 01:55 PM.
06-11-2010, 09:46 PM   #20
Manzyb
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Hey!

Best of luck to you! I am looking forward to hearing how the rest of the transplant goes for you. I think its safe to say that we are all pulling for you!! Thanks for posting your experiences with this for us to see.

Amanda
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06-13-2010, 09:26 AM   #21
Guest9283
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I wish you all the luck in the world and my thoughts and prayers are with you. Thank you so much for giving us such a personal insight into your journey. I'm staying tuned for the next instalment! All the best.

Sorry I missed your post Dusty.

Thanks, I'll accept those prayers anyday!
Also thank you for your kind words. Knowing that some of you ARE actually interested in my blog gives me the encouragement to keep blogging. So on that note and with a few more responces i see - I'll spend some time updating what has gone on so far, how it has effected me and what my thoughts are. Have a good day and god bless Dusty!
06-13-2010, 09:35 AM   #22
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Yeah how do you feel? Any side effects? Best of luck!
06-13-2010, 09:41 AM   #23
Guest9283
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Hi Ziggy:

Wow! I admire your fighting spirit. This sounds very exciting and promising. I hope you will indeed be cured! That will give the rest of us hope. Good luck and keep the posts coming. My thoughts and prayers are with you.

Chris
Chris, my fighting spirit has to be in all us crohnnies, but I'll accept the gracious comment =) . Chris I believe this is THE MOST exciting and promising treatment to ever come across Crohn's disease, and all it can do is get better and more refined as time passes. I got discouraged a bit with the few responces in the beggininng, but I'll keep the post flowing now. Again, I'll accept all those kind prayers - Thank you sir!

Last edited by Guest9283; 12-30-2012 at 04:51 PM.
06-13-2010, 09:43 AM   #24
Guest9283
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Best of luck to you! I am looking forward to hearing how the rest of the transplant goes for you. I think its safe to say that we are all pulling for you!! Thanks for posting your experiences with this for us to see.

Amanda
You are very welcome Amanda, and thank you!
06-13-2010, 09:44 AM   #25
Guest9283
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Yeah how do you feel? Any side effects? Best of luck!

I feel fine. Just a bit tired - some fatigue but that it really
More coming up Ms. Jetta! Stay tuned =)

Last edited by Guest9283; 06-13-2010 at 01:52 PM.
06-13-2010, 10:46 AM   #26
Guest9283
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CHEMO day!!
So around 7pm after consulting with my docs and just going over what was to happen, the nurse came in with a few liquid IV bags. She casually started hooking it all up. They run a couple meds here with the chemo, however this is the basic run down :

1) The chemo to lower my immune system – which is only run over a 2 hour infusion

2) A med that is infused to protect my kidneys – which is run over the next 24 hours

3) A med that is infused to protect my bladder – run over the next 24 hours

4) Saline – depending on blood work and kidney function

5) A diuretic – run a bit later to expel liquid from your body since they are having to pump so much into you. This will make you urinate ALL night long lol.

6) A drug to calm you – I didn’t ask for it nor felt I needed it, but it is protocol.
You may ask for other things like valium for anxiety, or a bunch of other meds for nausea. I wanted to "experience" the chemo with a clear mind and didn’t ask for anything except some nausea med just in case.

What did I feel from the chemo?? --- NOTHING! Honestly if it were not for the fact that I had to pee every hour, you could have told me I was receiving saline only, and I would have believed you. Not all cases are like this, but all 3 people with crohn’s doing this during my stay felt the same. As I have said before I really think your mind set will be biggest hurdle during the whole transplant. However there is more to this chemo process but as for chemo blog day that’s it! TIPS – take valium if you are nervous, ask for ambian to sleep as some patients did during most of their stay. Although I can’t imagine being on ambian and having to wake up to pee every hour. lol They do ask that you flush the toilet twice after every use and wash your hands good, as any bodily fluids will have chemo in it for the next 48 hours. If you sweat during the night, any clothes that you are wearing will have to be washed separately. That’s it folks.

Last edited by Guest9283; 12-30-2012 at 04:52 PM.
06-13-2010, 11:26 AM   #27
Guest9283
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Yes there is, and I wanted to make a second post to explain this. After chemo your immune system will continue to go down and down until you reach your bottom – The most “dangerous” stage. This day that you hit bottom is called your neutropinic day. This generally happens between day 7-9 after chemo infusion. During these days you have to stay well sanitized and just be smart. You are given masks and such but generally that is all needed the closer you get to your neutropenic stage. You will have blood work taken everyday which will indicate exactly when you are neutropinic and the doctor will let you know. On this day you can pretty much EXPECT to run a fever, have the runs and generally feel fatigued as can be. Breaking that fever can take up to a day or so from what I have seen, but this does vary from person to person obviously. You stay sanitized and clean with masks and all so that during this day of neutropinic levels you have no infections and nothing else to fight off. My day of being neutropinic will be anytime from this Tuesday to Thursday(June 15th – June 17th). Wish me luck. However I am not too worried – Im prepared and ready for it

Last edited by Guest9283; 12-30-2012 at 04:52 PM.
06-13-2010, 02:42 PM   #28
Guest9283
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All that was scheduled for today was my vein check and a consult at the blood center. This is where they will place my IR-Vascath to draw my stem cells on Friday the 18th of June. They will go over everything today with me just so I understand the procedure and am comfortable with it, before that day comes. Basically on the actual day, they will place a line in my neck, and draw blood for 4-6 hours to collect my stem cells, then prepare them for harvest. Sound kinda scary to some of you? Don’t worry from my understanding, you will be sedated pretty good and can always ask for more sedation or heavier drugs. I myself will ask for the minimal, as again I just want to go through the “experience” so I am able to share it better with you all, and whoever might ask me about it in the future. I want to be able to say at the end of all this to those people who are scared and feel there is no hope, that “If I can do it you can”

Last edited by Guest9283; 12-30-2012 at 04:52 PM.
06-13-2010, 02:44 PM   #29
Guest9283
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Friday – Just had some labs to check all current levels and everything came back A-ok!

Saturday – Nothing happening, just keeping extra clean and cautious as I get closer and closer to turning neutropenic (should happen sometime tues thru wed). I am monitoring my tempreture throughout the day, and have been instructed to call in if it goes over 100.

Last edited by Guest9283; 12-30-2012 at 04:53 PM.
06-13-2010, 02:45 PM   #30
Guest9283
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Today is the day I have to start to take a couple meds. Just some antibiotics and anti-fungal meds together with a daily shot that will increase production of my stem cells. Hopefully there will be enough of them to collect on Friday when they harvest my cells. So -

7am This morning I started:
Neupogen shots – Increases white blood count/stem cell count
Cipro – We all know what this one is hopefully lol
Diflican – This helps fight off any fungal infections.
Flagyl – Again if we are considering an ASCT we know what this is lol
I run these all for 7 days through and past my neupogenic stage. As you can see they are SO careful and pre-cautious which is how they have been throughout this whole treatment.

Last edited by Guest9283; 12-30-2012 at 04:53 PM.
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