April 8 2007 - 3 days post treatment
Still breathing deeper - but not any deeper than 2 days ago. Mucus has finally stopped. One thing I am noticing is my Saturation is higher than it used to be. Before SCT (stem cell treatment) when I was sitting and ran 2lpm pulse dose I was typically reading 95-96%, now I am reading 98-99% so I am turning it down to 1.5lpm and have left it off a few times for up to 20 minutes. My heart rate has also slowed down a bit. I guess it has less strain when the lungs can produced more oxygen??
I have also noticed some aching in my chest wall - not sure what this means. It's not painful just achy. I am thinking the new cells are asking the old worn out ones to leave and they are jockeying for position. :)
On the plane at 35,000 feet today I ran my Eclipse at 2lpm pulsed for most of the trip without any SOB. Before the treatment on the plane to San Diego from Boston I had a bit more trouble and ran my Eclipse at 3lpm for at least 20 minutes and had SOB.
I hope this information is helpful.
SCB Founders
Casey Nabavi & Dr Burton Feinerman
At the Clinic - April 5, 2007
Left to Right: Jim, Jeannine, Barb, Ed Johns and Rita
At the Clinic - April 5, 2007
Left to Right: Dr Rodriguez, Casey Nabavi, CEO of Stem Cell Biotherapy, and Dr Romero
13 comments:
April 10 - 5 days post cell treatment
Today isn't a good day for me. I have aches in my chest and back which I am hoping is caused by the stem cells homing in on the damaged areas of my lousy lungs. Breathing is about the same as it was yesterday.
Otherwise, no other changes at this time.
Sorry I should have added:
Yesterday was a better day than today for me. Just being able to get from my car to my desk without SOB was something I haven't done in almost two years. A miracle in itself if you ask me.
I need to keep in mind what Nassin noticed after his treatment. Subtle changes do add up.
April 11 - 6 days post cell treatment
Good morning folks! I know you look forward to our propgress updates so I didn't want to disappoint anyone.
Not many changes today. In fact I feel kind of lousy. The achy chest has disappeared but it now feels heavy. It's hard to describe the exact feeling. For lack of a better description I'd say it feels more substantial..as if there is more to my lungs than there was before?
I do notice that my chest seems to move better when inhaling and exhaling. And I do have less hyperinflation because my chest isn't protruding as much as before. No SOB, but my Sats still drop sharply when I go without O2 to walk around.
This is a question rather than a comment. If this isn't the right place to put a question, please guide me. Blogging is totally new to me!!!
Are you in contact on a regular basis with Dr. Feinerman concerning your condition?
Pat
Post questions under the question and answer section.
Day 24 - Post stem cell treatment
I am finally getting back on my feet.
Here is a day-to-day diary as best as I can remember:
Day 1 - 4: within 2 hours post stem cell started coughing up much more mucus than usual being released from my lungs
Day 5: One large piece of mucus was coughed up which tasted like hydrogen peroxide. Looked mostly whitish with a few tiny black specks. Went to work for 6 hours.
Day 6: Burning in upper chest and back in lung area. Felt out of srots but blamed it on jet lag. Went to work for 5 hours
Day 7: Still out of sorts - tired and still some chest discomfort. Still no coughing.
Day 8: Once again out of srots - tired. didn't go to work but noticed my breathing was better and actually mainainted an 97-98% Sat without O2 for over 30 minutes while driving. This sensation occurred for 2 30 minute periods today. Cough and runny nose started around 11PM. Went to bed.
Day 9: Woke up at 6 too sick to even get out of bed. Coughing, sneezing, runny nose. Generally miserable. Stayed in bed and hope to feel better.
Day 10: Coughing and sneezing. Couldn't keep Sats over 91 no matter how high O2 was set. Called my own doctor because I had now started with a fever of about 99.5 My own doctor couldn't see me and told me to go to the emergency room. Too sick to even go there. Spoke with Barb who felt pretty bad herself and had called Dr Feinerman.
Dr Feinerman called me and was quite concerned about my condition. He ordered some antibiotics for me and switched my inhaler from Albuterol to Xopenex. God bless Dr Feinerman - without him I don't know what might have happened. Suffered through the night which I was sure was my last night on earth. Didn't turn off the TV for fear I would never see light again.
FYI - not typically a very dramatic individual, so I felt pretty damned bad. Mostly because I couldn't stop coughing, my diapghram hurt pretty bad and my O2 wouldn't go above 91. Until mysteriously in the middle of the night it shot up to 98% for about an hour.
Day 11: Not much change from yesterday. However the situtation seemed less dire somehow.
Day 12: Fever is gone and the sneezing has just about stopped. Center of coughing creeps up about an inch per day. Coughing is still a major factor as is the O2 Sats. I am running 4LPM+ while lying down and can't get over 90=91% very scary.
Day 13: Not much change from yesterday. I was able to shower without too much trouble. I notice my O2 will jump to 96-98% randomly for 10 minutes. I hope these jumps in Sats increases.
Day 14: Feeling a bit better, but due to a very stressful personal situation, I crashed and burned, wound up in an ambulance and was rushed to the hospital. I couldn't breath or stop coughing. Could barely make it from the bed to the toilet in the hospital room even wearing O2.
NOTE: AS soon as I was provided with some anti-anxiety medication, my breathing improved drastically. It was a panic attack combined with a severe chest congestion then toss in severe COPD. This would be disastrous for anyone in a similar situtation.
Day 15 - 21: Recovery is taking some time, but my breathing has improved from what it was before the stem cell treatment.
The doctors and nurses appear fascinated with listening to my lung aeration for some reason.
Day 22: Discharge day. Was told by doctor that I have severe COPD which will only get worse (tell me something I don't know). I was told the cough won't ever go away. The usual doom and gloom they give us folks with COPD.
Day 23: Woke up feeling OK, but had a few hours of feeeling horrible. Cough has finally moved up as far as it can in my chest without departing. Even if my Sats drop below 90 if I decide to run to the bathroom without my O2, I don't have that long period of having to sit and wait with my O2 for my Sats to climb. It seems to occur much more quickly now.
Ed Johns called me today to see how I was doing. Ed is a special guy and if I could trade him some lung cells for leg cells I'd do it in a heartbeat.
Day 24: Woke up feeling better than I have in over 1 year. Coughing is gone, Sats were at 98% on 1LPM while sleeping!
My thoughts: I would do it all again. The only concern I have is that we should have been told a bit more about what could happen and we should have also continued to take our vitamins and supplements. As soon as I started on my NAC and CO-Q10 again I started feeling better. I am currently using Xopenex in a nebulizer every 6 hours, Advair 2 times a day, Spiriva once a day and Singulair once a day. I plan to resume my regular work schedule in aobut 5 days.
I think injecting 150 million lung stem cells into people with severe lung problems might just be too much at once. It appeared to me that while the stem cells seek out and repair damaged lung cells they might be taking too many off line at one time in people with less than 50% of their lung function. Perhaps two treatments 6 months apart with 75 million lung cells at each would be more manageable for us lung-disabled folks?
The people at Stem Cell Biotherapy are wonderful caring people. They are listening to their patients concerns and really trying to accommodate their needs.
Jeannine - You don't know how good you've made me feel today knowing that you got upstairs to the computer. I am so excited for you to start feeling better and start enjoying what the treatment will bring. I was SOB yesterday and this morning and then it was wierd like a fog had lifted and it just went away. It is just the craziest thing. I got on the treadmill, picked up dog crap and in general just started feeling great again after a 1 1/2 day hiatus. Now, knowing you are doing better, I will go skydiving later on today.
Barb
Today was a banner day for me! I cleaned out my email (all 500 new ones), took a shower, even shaved my legs and shampooed my hair twice and my Sats stayed at 92 at 3LPM (pretty good for me). I have to keep removing my O2 or turning it down because it's too much at times. This seems to be happening more often today. Another good sign!
Tony set up my treadmill and I even tried it out. Hadn't been on a treadmill for 6 months so I didn't do very well, but plan to hop on every day from now on and improve. I'm glad you're doing great and I just know I will be getting better and better from now on too!
May 2 2007
Day 27: Went to work today for the first time. A little shaky, but managed to get caught up on all of my work.
Oxygen Sats stay higher 95-97% at 1.5LPM but I still need to use O2 at this time. I don't suffer SOB as often nor as severely. My Sats jump back faster too. I am taking the medications, antioxidants and vitamins as instructed. I feel pretty good - not great but OK.
May 3 2007
Day 28: Just wanted to write and say, since yesterday I have been feeling better than I have in 2 years at least!
This morning was like a dream come true. I woke up, took my meds, took a shower got dressed, got in my car, went to dunkin donuts, parked my car at work and only got SOB when I tried to carry to too many things from my car to the office. I didn't use O2 while driving (I was at 97%) and only put it on to walk from the car to the office.
I am sleeping well, eating well, and generally feeling pretty good. A far cry from the me who left the hospital eactly one week ago.
I believe this treatment is working and that it simply takes time for your body to adjust and for the stem cells to do their work in repairing the damage.
For anyone who has doubts about this procedure. It is worth whatever you have to do to get it. The past few days alone are like a dream come true for me even with using the O2. I feel as if I could leap tall buildings. WOW!
I'm practicing being a bloger! Doesn't seem like it should be rocket science but for some reason I'm having trouble with passwords, etc.
In case this works--Jeannine your update made my day!
Jeannine - Instead of the T-shirt I sent you, I want you to wear the cape I am now sending. Superwoman! I can't believe the lack of SOB for the most part. My stomach always had a knot in it from struggling to breathe. I still need the O2 at this point also, but just breathing so much better is wonderful. I am glad to see Mary Jo practicing beginning blogging. Way to go. One day to go for Larry too. I am really excited for him.
Update - 6 weeks post-treatment
I haven't been doing many updates other than on the blog because not much is happening on a day-to day basis. There are days when I feel better than I have in 2 years and then there are days when I feel worse than ever.
Today is our 6th week anniversary and I am able to keep my O2 at 1LPM while sitting and maintain an O2 of 96-98% There are times when I can maintain those Sats while sitting without O2 for up to 2 hours (this has happened twice this week). I can also use 1.5LPM for sleeping and maintain my O2 at 96% I've woken up a few times during the night and checked it before moving an inch.
I have up and down the stairs in my home 5 times today already and have had barely no SOB and my Sats never dropped below 93% while at 2LPM. To me this is very good news.
However, there are times (like this morning when I got in the car to drive my son to school) when I turned up my O2 to 3LPM and couldn't get my Sat over 90% for a minute.
Also, I was up at 6am today, did a Xoponex nebulizer treatment and here it is 4:30pm and I haven't even needed my inhaler yet. I used to need my inhaler every 4-6 hours before stem cells treatment. This has been happening more and more often lately but not on a daily basis.
I still destaurate to the low 80s if I walk around without O2, but as soon as I stop moving, my numbers jump much faster (from 85% to 93% in less than a minute) than before.
It is sometimes one step up and two steps back.
I purchased a Microlife Peak Flow Meter and have been tracking my numbers. I see no significant changes yet. In fact, my numbers are worse than I thought they were. I sometimes think women are at a disadvantage with these breathing tests because the mouthpiece is so big.
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