My Stem Cell Journey

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Introduction

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.
 
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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!
 
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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!
 
Liverpool FC said:
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!
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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!
 
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Monday May 31st

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.
 
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Tuesday June 1st

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… =)
 
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Thursday June 3rd

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!
 
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Friday June 4th

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… :(
 
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Sunday June 6th

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!!! :)
 
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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.
 
belle1999 said:
Good luck!
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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. :)
 
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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!
 
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
 
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
 
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
 
DustyKat said:
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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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!
 
phillycrohns said:
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
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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!
 
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Manzyb said:
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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You are very welcome Amanda, and thank you!
 
Wednesday, June 9th (Chemo)

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.
 
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Must be more to Chemo right?

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 ;)
 
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Thursday June 10th

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” :)
 
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Friday – Sunday, June 11th – June 13th

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.
 
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Sunday June 13th

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. :)
 
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Hi Ziggy,

If you don't mind me asking, how are you going emotionally? Do you have any family or friends with you?

Keeping my fingers and toes crossed that everything goes according to plan.
 
Hey Zig, I'm surprised you aren't kept in isolation or something while your immune system is being destroyed.
 
Glad to hear it is going well. When they take your blood they take it for 4-6 hours? That must be a ton of blood.

Amazed how calm you are. I get nervous just reading this, but hospitals kind of freak me out in general.
 
WOW you are truly inspirational. Please keep posting when you are able too and know that everyone is behind you. I had no idea this was possible. It's brave people like you that shape the future of medicine. You give us all hope and reminded me of this quote..... "Nothing is impossible - it just hasn't been done yet." You can do it Ziggy x x
 
DustyKat said:
Hi Ziggy,

If you don't mind me asking, how are you going emotionally? Do you have any family or friends with you?

Keeping my fingers and toes crossed that everything goes according to plan.
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Great question Dusty! Emotionally I have prepared myself before hand as much as i possibly could before taking this route I chose(and believe in). I truly believe the emotional state is the hardest part about going through something this "extreme". However I have never been one to panic when in a crisis, nor get sad or depressed when times are rough...rather I seem to get a bit upset/angry, and then make a plan. After all is said and done, if things don't go my way, I eventually become content in knowing I tried my best. You can't control what life throws your way, but you can control your perception of any situation. Staying positive is key to this thearpy - I can't stress that enough to anyone considering taking on this ASCT.

Thanks again Dusty - It is very comforting knowing I have so many people behind me! =)
 
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CrohnsHobo said:
Glad to hear it is going well. When they take your blood they take it for 4-6 hours? That must be a ton of blood.

Amazed how calm you are. I get nervous just reading this, but hospitals kind of freak me out in general.
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Yeah and to boot, I hate needles lol. I was actually diagnosed with a "needle phobia"(yes there is such a diagnosis lol) when I was younger.I have gotten a bit better since then. I wouldn't say I am as calm as can be about it, but I am as ready as ever to get it done - Friday it will be!

- I'll find out just how much blood they take out for ya lol.
 
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I'm so glad you seem to be doing soo well, keep it up if you ever want to chat you know where we all are! I'm so glad I have found this site xx People are amazing x You are doing the RIGHT thing because you followed your instincts. Dont you dare let anyone tell you otherwise. Trust your voice x x You can do it!!!! xx (I know its easy for me to say cos Im not the one going through what you are but I think your a complete inspiration you deserve an award. Maybe they can award you a pride of crohn's award or something on here??? Stay strong cant wait to read more x x
 
Hey Zig, from your earlier post on 6/13, you should be in your neutropinic phase. It seems we are asking too many questions to let you update your progress. How long will you be kept in isolation? I hope you'll still be able to post during that time as it really has become fascinating to follow. Good luck and keep us posted.
 
Wow, gone for a minute and I missed all this! This is totally remarkable and I really hope this could lead to a cure some day. I commend you for being one of the firsts to try this. Keep it up, we are sending positive energy and hope! I am so glad you were persistant to stay with us! Good luck tomorrow!
 
Hey man I just want to say big thanks for posting all this and keeping us updated. I remember reading about the stem cell treatment a few months ago and I've been interested in developments since then.

I'l be following this thread and I hope it all goes as smoothly as possilbe for you :)

Cheers,
Matt
 
Hey Ziggy!

It sounds like you are doing fairly well! Keeping you in my prayers that all goes great for you! I love reading your posts about how you are doing. I love your take on things. I, too, try to keep a positive attitude for the most part, but the crohn's gets into my head at times and likes to eff with me :0)

Keep on keepin' on!

Amanda
 
Monday June 14th

Monday I did the Neupogen shots and antibiotic meds at 7am, and then went for blood work shortly thereafter. Doctor called me back several hours later to inform me that all my levels looked good and that I am not neutropinc yet! I spent the day away from public and kept as sanitized as possible. I mainly just tried to keep myself occupied. I kept up with the other crohn’s patients and, also did a bit of studying on a business venture I will be pursuing after the transplant (with my fellow transplant buddy).
 
Wow! It's amazing that your doing this! I'm so glad you are posting this all here....you have alot of valuable information to share!

Good Luck! I hope this works out for you ....and for everyone one else that may benefit from this trial!
 
Hi there Ziggy I am new to this site but alas not to crohns, I just wanted to say thankyou so much for your blog I have been very interested in stem cell therapy as a treatment for CD as my story is so much like your own especially the part where you could not absorb anything and became dehydrated kidneys failing extreme wieght loss etc and the subsequent lung problems so your blog is very much of great interest and if not for people like yourself others such as myself can find it very difficult to make a true informed choice when offerd different treatments, but with blogs like your own it gives us that bit more in the way of choice because while indeed everybody responds in different ways the procedure is the same, also they may find that they respond in a way similar to yourself which because of your blog and others like it they understand whats happening and it becomes less worrying so again thankyou so much for taking the time even though there are times when you must be exausted or feeling very unwell you are an inspiration. Thank You x also I hope eveything goes well for you!
 
i am keeping you in my prayers! i have been newly diagnosed with crohns and recently found research on the stem cell research but since i don't know if the treatment is going to work on me yet i'm not a candidate for a stem cell transplant.
 
Ziggy! I want to thank you from the bottom of my heart and toes! It is people like you who have given us the meds today that have been able to help others with our disease. I look as frequent as I can on line at everyones posts...Trying not to get to deep and overwhelmed. But, bless you! Keep posting because we are all cheering, watching and listening. I am thankful to be in your audience. Peace, Sue
 
Sorry for the delay folks

Basically that next day (friday) I had my harvest done and then caught a flight back home. Well After not being home for 4 weeks there has been a ton of things keeping me away from responding. However, let me get to it! :)
 
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stylinmama said:
Wow! It's amazing that your doing this! I'm so glad you are posting this all here....you have alot of valuable information to share!

Good Luck! I hope this works out for you ....and for everyone one else that may benefit from this trial!
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Yeah, I when I was first looking into it I couldn't find much information, and the blogs done in the past were great, but just not as detailed as I would of liked before I put my foot forward. So I figured I try my best to put that "detailed" blog I "was" looking for out there. We need more canidates for stem cell transplants, and to get these people, we need to educate them so they understand everything 100%. In my eyes, if(WHEN) this works out for me like I am hoping(expecting based on previous results ect) it would of all been 110% worth it, no doubt. The doc I have IS the leading doc in the world when in comes to stem cell thearpy. He has cured MS, Crohn's, Lupus, and the list and number just seem to be accumulating
 
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louise32 said:
Hi there Ziggy I am new to this site but alas not to crohns, I just wanted to say thankyou so much for your blog I have been very interested in stem cell therapy as a treatment for CD as my story is so much like your own especially the part where you could not absorb anything and became dehydrated kidneys failing extreme wieght loss etc and the subsequent lung problems so your blog is very much of great interest and if not for people like yourself others such as myself can find it very difficult to make a true informed choice when offerd different treatments, but with blogs like your own it gives us that bit more in the way of choice because while indeed everybody responds in different ways the procedure is the same, also they may find that they respond in a way similar to yourself which because of your blog and others like it they understand whats happening and it becomes less worrying so again thankyou so much for taking the time even though there are times when you must be exausted or feeling very unwell you are an inspiration. Thank You x also I hope eveything goes well for you!
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Exactly my friend. Hopefully you get well. If not you will now have another story to base your decision on yet another great treatment for our disease.
I will keep you in my prayers buddy.

Thanks again.
 
This is it. Here is the man! (Along with his website)

http://www.stemcell-immunotherapy.com/

Everyone please take some time out to check this doctors web site out. His name is doctor Burt. He is the one saving mine and many other lives right now through the use of stem cell therapy. If we want this to become a cure thats as refined and easy for people with crohns/MS/Lupus ect we need to get the word out there and get more funding for this.
 
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It continues to be fascinating Zig. Hope you enjoy your stay at home and I look forward to the next leg of your journey. Stay well!!
 
Dexky said:
It continues to be fascinating Zig. Hope you enjoy your stay at home and I look forward to the next leg of your journey. Stay well!!
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Thanks so much for your stay here on my blog Dex. Yes it continues to fascinate me more and more each day as well. It was only a day or two ago that I caught the end of a story on the news where through some stem cell treatment they made a middle age guy that was completely blind, see again!!
Wow.

Right now I wish I could pass time and begin my next phase, but I have always been a bit impatient. lol
 
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This could clearly be a breakthrough. How does one sit for 3.5 hours without going to the bathroom? I know you probably mentioned it, sorry if it has but are they using adult human stem cells or embryo stem cells?

BtW I heard that bald was in lol, a little humour. I still think this is amazing, I hope everyday for a cure, and maybe it is coming. I still think you are brave. I think we should be grateful for you doing this for mankind. Thank you from the bottom of my heart. Fingers crossed!!
 
How does one sit for 3.5 hours without going to the bathroom?
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Haha Jett, I was going to ask the same thing. Urinals and bedpans?

I am so happy for you that things are working out thus far and hope and pray they stay that way. Thank you so much again for allowing us this opportunity to read about your journey. There's nothing better than a first hand personal experience, warts and all!

Just one question. When it is all finished and if you respond (thinking positive thoughts here) favourably, how long before they will actually say you are cured and what tests do they use to determine that?

Take care and thinking about you Ziggy.
Dusty
 
Correct me if i'm wrong but to answer Jetta's question didn't you mention you have an ileostomy?
I really am so pleased to read that everything is going well, I know if it was me i would regularly be having teary moments however if I ever do this I will certainly re-read your story to give me strength! :)
 
Ziggy, I just found this thread. Read the entire thing and it's fascinating. I'm praying for the best outcome for you.

Your efforts to enlighten and inform this community and to stay as sober as possible to improve the information are nothing less than heroic.
 
OMG! Mr. Z, I held my breath reading the entry about the catheter in your neck. I would need to be medicated! You are unbelievable! Praise to you and your physician. This is unreal. I mean--for me--sorry to be selfish. But, as I sit here in my mid 40's...Been diagnosed with Crohns last year who would a throught I'd be thinking this Zig man could be me in the futre. Sorry to be selfish. Back to you...I hope, sorry I am kinda ADD. Didn't read every entry. I hope that you have family and friends close to you as you go through these next steps. This is hard for me to read...and I don't even know you! I mean, heres a hug from Michigan...we are all here for you. Stay strong....Wish I could do more. Peace, Sue
 
Hi Ziggy:

I just read your further updates and am looking forward to hearing how things are going. I hope you are well. You are still in my thoughts and prayers. I have one question for you--not sure if you know the answer being that you are male. But here goes: if you are a woman of child-bearing age, and want to have children, how do this stem cell therapy affect ones ability to have children in the future, if at all? Just wondering if you know, though by the time this type of therapy becomes open to the rest of us crohnnies, I may be past my child-bearing years anyway.

All the best!
Chris
 
cutting edge treatment...

Greetings Mr. Ziggy,
I have been following this thread since the start, and have read every post.
It has been interesting, informative and encouraging!
I admire and applaud your brave and positive outlook.

Most often when we hear about 'attitudes', it is in a negative context.
Well, I gotta say, you have the most amazing and inspiring attitude I've seen in a Crohn's patient!

You give me hope that medical advances may someday wipe out my crohns,
which has been trying to wipe out me.

I hope that you are doing well.
Thanks for taking us along for the ride.
I am sure your "plate" is full, but give us an update when you find time.

Good show!
be well
Walt
 
Hi Walt, welcome to the forum! I am glad you joined us and Ziggy posts from time to time, we all await his findings.

Please let us know how you are with your journey of Crohns on a Your Story thread so we can all welcome you. Lots of info here, and nice people.

welcome aboard!
 
First time I have read your story/blog. WOW is all I can. Big journey but sure it will be a great result at end. Good luck with everything and will keep reading

Jo x
 
Thanks for the updates Ziggy.

What is the next step once you go back in a month?

It has been about a month since you started this treatment right? Just trying to get an idea of the full time frame of treatment.
 
Claire617 said:
I really am so pleased to read that everything is going well, I know if it was me i would regularly be having teary moments however if I ever do this I will certainly re-read your story to give me strength! :)
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Thanks Claire. Knowing that there might be a possibility of you reading this in the future if you have to, really solidifies my blog being here. So thank you, and I hope you stay well!
 
reidyjo81 said:
First time I have read your story/blog. WOW is all I can. Big journey but sure it will be a great result at end. Good luck with everything and will keep reading

Jo x
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Thanks! My reaction when finding the results and numbers on stem cell treatments were also WOW. Just wish I would of had someone to post a detailed blog so i could of made this decision sooner.
Thank you for staying tuned! :)
 
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CrohnsHobo said:
Thanks for the updates Ziggy.

What is the next step once you go back in a month?

It has been about a month since you started this treatment right? Just trying to get an idea of the full time frame of treatment.
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Yes, it has been just over a month since I started the treatment. I just arrived back in Chicago yesterday. The schedule for all of us is the same no matter when you or I had to start. I was supposed to get a picc line placed today just like the two other crohn’s patients here. Followed by 7 days of 2 different chemo medications, starting tomorrow. The day after the last chemo is when they infuse the stem cell back into your body. After that day, they monitor you and your levels (white blood count etc) over a 10 day period. You are then discharged, with a follow up consultation with the doc 3 days later to go over everything, on how you have handled things and how you should proceed to take little precautions after you go home for the next couple months - Staying away from crowds, staying sanitized etc just like before. 2 days after that consultation you are free to go home. I myself had a minor set back that should put me around 10 days behind schedule, I will tell all in next post. Hope all is well.
 
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Thanks for the update Ziggy.

I'm sorry to hear about your setback but it sounds like you have it under control.

You know Zig, you never cease to amaze and inspire me. :awe:

Always in my thoughts and prayers.
Dusty.
 
Hope you are feeling well now, I guess there will be minor glitches along the way. Keep us posted as much as possible!
 

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