I can hardly believe that my six month anniversary is here. I think it is appropriate that it landed on the day that 5 of our forum members are getting stem cell therapy. I dedicate my update to all of you who have followed since Jeannine and I went. My progress continues. I have certainly had lots of ups and downs along the way, but most recently I seem to be on a very slight upward progression. Since, I no longer have SOB, my main concern has been getting off of O2. Yesterday, I spent a good portion of the day without O2 and maintained a 90. For me, this is good. I live in a high altitude. I cannot do this on a consistent basis yet and that will be something that I hope will happen within the next 6 months. I suffer greatly from Impatient Syndrome which is a term that Jeannine and I made up to describe how impatient we always are with our progress. I never think of how many years it took me to get as ill as I was and yet I want instant recovery after stem cell therapy. That is just not reality. If anyone thinks they are going to see overnight results, they are wrong. The key is lasting results that relieve a person of the tortures of their disease, whatever they may suffer from. I am continuing with the supplement program and the diet because I feel that if the cells are still engrafting up to a year than perhaps it would be best for me to stick with what has worked for me so far. I am going to allow myself a few strays from the diet, but on the whole, I am a vegetarian and eat pretty healthily anyway. Some stem cell doctors do not even advocate a diet or mention supplements, so this is a personal choice I have made to continue for another six months. I have noticed a constant improvement of my sats with O2 in the last couple of weeks. Instead of 90-93, I am seeing 95-97. Without O2, on a good day, I will see 90-91, but like I said not on a consistent basis or with much exertion. I do continue my PowerLung exercises faithfully. 2 times a day, 3 sets of 10 exercises. My Peak Flow meter numbers are averaging 500. With the meter I have, I used to be lucky to get 250. My meter is a manual meter I was given for asthma and the top number on it is 800. I measure 3 times a day. The greatest thing I can say for my stem cell treatment is not having any SOB. I used to have it almost all day long if I exerted myself whatsoever. It is so nice now to be able to run to answer the phone or let the dogs out without O2 and not have any SOB. Showering and dressing are two other areas that are so difficult for people with SOB. These things are no longer a chore for me. I lost the SOB on 5/20 after a really horrible week prior. Just recently I seemed a little sluggish and this lasted a couple of weeks. I didn't have the same energy level and was feeling that maybe I had reached the point where I would see no more results. Then, just like the SOB disappearing overnight, I suddenly started seeing higher sats and am feeling absolutely fabulous again. I have nothing to attribute this to and have no medical explanation for it. I also have been negligent in doing the treadmill and my other exercises lately. I do like to stay fit, but exercise is obviously not affecting my sudden burst of better sats because I haven't been exercising. The fall weather usually gets to me and maybe that was what happened, however, it is still fall weather where I live and now I feel better than ever. I have reduced my medication by 50 percent. I used to need 4-5 lpm of O2 while doing anything and I would still drop to the 80's at times. Now, I can use 2lpm and not drop. The only time I crank my O2 up is to exercise on the treadmill like a mad woman. I am currently able to do 4.0 easily and the last time I was on, I was fooling around with 5.0mph. I also can do a .4 incline at 3-3.5mph. I usually do the treadmill for 10-20 minutes followed by theraband exercises for my upper body and the recumbent bike for a couple of minutes. I was needing 2 lpm for sitting and now I usually do not use O2 while sitting.
My energy level should put some healthy people to shame. I am constantly on the go and do not feel tired or draggy whatsoever. I stay up late, get up early, work and also help with the forum. One thing that of course I am very disappointed about is that I am still not able to vacuum. I feel that NOVAC is an irreversible disease that I will have forever. Of course, I am sad about this, but if that is my lot in life, to not be able to vacuum, I will have to accept it.
I have rambled enough. Happy anniversary Jeannine and healthy wishes to all of you.
My energy level should put some healthy people to shame. I am constantly on the go and do not feel tired or draggy whatsoever. I stay up late, get up early, work and also help with the forum. One thing that of course I am very disappointed about is that I am still not able to vacuum. I feel that NOVAC is an irreversible disease that I will have forever. Of course, I am sad about this, but if that is my lot in life, to not be able to vacuum, I will have to accept it.
I have rambled enough. Happy anniversary Jeannine and healthy wishes to all of you.
---actually It Wasn't Warm Enough For Me To Get In Any Pool Suit Or Not---- I Don't Know Why They Took Ross And Ward Before Any Of Us Ladies, But, It's Ok By Me, I Know Ross Was Having A Pretty Rough Time Of It, If I Had Known Bev Was Going To Be So Upset About Being Last, I Would Have Let Her Go Before Me--lol--I Received My Protocol In The Mail Today, Did Anyone Else Get Theirs????