One Month Update

C

Connie Golden

New member
My improvements are more subtle than my other 10/4 companions. I am able to have more satisfactory exercise sessions which I try to do five days a week. My MWF routine is 6 minutes on arm pulleys and one mile on TM. I have made the mile all week and have been able to increase my speed to l.9mph (this is up from 1.2 to 1.4 which has been normal for me the past year or two). Applause please! On Tuesday & Thursdays I do stairs and all this week I did 3 sets of 30 steps (this is up from 20 steps) and a few minutes on the bike. In addition, I am having more energy in the evenings. I had been coming home crumbling into a chair until bedtime. I find myself tackling all kinds of little things.

I still have the rash and itch. Finally got some Benedril (sp?) last night. I'll take some more tonight to see if I can lick it. Reading the fine print it says not for use by people with lung problems or COPD. I took it anyway.

I received a "second" Bio Cell Therapy diary in the mail yesterday. Any of you still missing yours, let me know. I think they are great people who are in need of a little better organizational assistance in their office. At least I knew what I should be getting after reading Barbaras and Jeannines book so I just kept after them until I got my list of supplements, etc.

Hope you are all well. The best is yet to come.
Connie
 
R

rosech44

New member
Connie

Good To Hear You Are Seeing Some Improvements, Even Tho They Are Small--- I'm Seem To Be On A Roll Now, But Could Slow Down Next Week---

Shopped At Costco Today, While I Was Really Tired Afterward, I Did Seem To Recover Faster--no Sob---

I Got My Journal Too---but, No Instructions As To What They Want, So They Will Get What I Want Them Too---

Hugs To All---
 
J

Jeannine

Pioneer Founding member
Connie and Rose

YOu have no idea how pleased I am to hear of your improvements. Barb and I were accused of having a "placebo effect" by the naysayers.

Be prepared to feel as if you are going backwards because you probably will. When you get more SOB than usual or get more mucus that typically indicates some improvements will happen within a week or so.

It is all very strange but yet so exciting and gives me hope that every day will bring you closer and closer to no 02. My husband remarked just this morning that I have been using less than half of a Marathon filling per day. And yesterday I was out of my home from 9:30am - 7:30pm. Before stem cells I would have run out of 02 by 4:00pm. I believe that some of the liquid O2 evaporated overnight as well.

I barely need it anymore because my Sats are staying in the 90s all day.
 
B

barbara

Pioneer Founding member
Applause, Applause

I hope you heard the applause Connie. I have not exercised for over 10 days because of my schedule. You put me to shame. I will plan on it tomorrow for sure. Whenever I do skip several days or even a couple of weeks, I am usually able to get right back on the treadmill at 3.5-4.0 mph and exercise just like I had not skipped any days. I could never do this before. I would almost have to start all over again at a slow speed if I skipped days. I think I had my best day ever yesterday. I went the entire day with almost no O2 and kept my sats up. I did use the O2 when walking into buildings and when I had to chase my horses down that had gotten loose. Otherwise, it was an O2less day and I felt great. Today I had to get up early and get my flu shot and I feel tired so I don't know if it is a result of yesterday or the flu shot. I'm not going to take much time trying to figure it out because by tomorrow I will probably be bouncing right back. Crazy stuff, this stem cell treatment. I appreciate your comments and it makes Jeannine and me feel very good to know that we have helped in some small way. My journal arrived over 90 days after my treatment, so I continue to use my spiral notebook for my own personal knowledge and for updates to our book.
 
R

Regine

New member
One month update

This is Regine reporting for Ward on his first month anniversary.
The only improvement to report is that his oxygen stats seem to stay at 98 most of the time with oxygen which is a change from before. He did go down to 91 after sitting for 1/2 hour without oxygen. SOB is the same and some days he is weak and shaky. Ward had a pulmonary function test a couple of weeks ago to use as a base line and the results were pretty bad. Here's what they were: "FVC of 1.17 liters which is 28%predicted and FEV-1 of o.50 liters, which is 18% predicted. FEV-2 at 75% is 0.16 liters per second which is 6% predicted. After bronchodilator treatment, there is signifigant improvement in FEV-1 by 14% to a value of 0.57 liters which is 20% predicted. Oxymeter on 3 liters was 98%." Can anyone put this into language we can understand? I do know it's pretty severe. So he'll get another in 6 months to see what the improvement is. Some days I am really hopeful but I must admit there are other days when I wonder if he's going to make it through another year. We have decided to take a month long cruise in February to give us something to look forward to.
So glad to hear others at one month are having signifigant changes. Hang in there!
 
R

rosech44

New member
ward

Sending big hugs to Ward and Regina-- keep positive, it just might take Ward a bit longer----

I'm thinking, tht the sicker we are the longer it takes to recover---Me, being the big chicken I was, I didn't want to wait til I got worse---

Had a big dinner party here tonite---Yearling oysters, and bbq'd pork ribs-I ate oysters, not the ribs--also 2 salads, but none of the desserts----anyone want pumpkin pie---apple crisp--and a huge carrot cake with cream cheese filling and icing?????? What am I to do with all these leftovers??????

I was good, only ate what I was supposed to----Really tired tonite---
 
B

barbara

Pioneer Founding member
A message to Regine and Rose

Regine - Good to hear from you. I really don't have too much to say about the numbers you have for Ward. I am more the type of person that relies on how I feel and how others say they feel rather than test figures that are given at a doctor's office when a person can be stressed or even not feeling so hot on that particular day. However, it is good to have them as a reference point for the future. I was not able to sit and keep my sats at 91 without O2 until close to the 90 day post treatment mark, so I think that is good. Was he able to do this prior to stem cell therapy? I think everyone needs to remember that this can take quite some time before you actually see results. Ward is just at one month and that is just not enough time to show significant improvement for most especially those that were very ill. I do hope you are keeping Ward in line and having him do the PowerLung as best he can as well as take his supplements and adhere to the diet. When using the stem cell diet as a guideline, it is beneficial to eat as many of the items on there that you can work into your meals each day. Don't simply avoid dairy or beef, but make sure you are adding as many of the items on the stem cell diet that you can to each meal.

I think a cruise sounds wonderful for both of you. They have so many items on the menus that food shouldn't be a problem. By February, Ward should be showing more improvement for sure. I hope you go for it!

As for Rose, please send me all those leftovers. I love dessert. Pies and cakes are my downfall. I have a pumpkin pie recipe that I submitted to Jeannine for the stem cell recipe book that does follow the stem cell diet. Also, keep in mind that there are lots of non dairy desserts that are very yummy.
 
C

Connie Golden

New member
Fifth Week Blahs...

It's a bummer! And after all the bragging I did! I continue to have the rash/itch but not nearly as severe. I sort of rate my days in the morning based on how my day gets started, as an A, B, C, etc. My first four weeks were all A's and B+'s. Since 11/5 they've been B's and C's. No more miles on the TM - - - 1/2 mile had to serve and I have had lots of SOB sessions, particularly before bed. My sputum had a yick color so I called my Dr last week who did oblige me with antibiotic Levatrin (sp?) but he wanted me to take a Prednisone burst for 8 days and go back to the every other day. I'm doing okay. Going to work and functioning fine. I just miss the "skip" in my walk and the perpetual smile on my face. I find myself needing to schedule all my little tasks once again. For a few weeks there I lived a half way normal existence.

Thank you Rose for the photos! We didn't take a camera with us. It's good to hear from all of you. Take care and stay well. Connie
 
R

rosech44

New member
Connie--barb

Barb--sorry The Desserts Are Gone, Sent The Big Carrot Cake To College With G'son---

Connie--sorry To Hear You Are Haveing Troubles And That Darn Itch---didn't They Use Rubbing Alcohol On The Dreaded Rash, With Lct???? I Was Lucky, Never Had It--- Hopefully The Prednisone And Levitrone Will Do The Trick.

Connie-did I Forward You The Photo's From Ross??? He Had Some Good Ones----
 
B

barbara

Pioneer Founding member
Mr. Toad wants to scare you

Connie - Please read the book Jeannine and I wrote again if you need to. What you are experiencing sounds perfectly normal post stem cell to me. Just when you are about to give up, your current condition will reverse. It throws you off guard until you finally get to the period where things are more stable. Hang in there, do your PowerLung (an absolute must!), consider the GenF20 product at 60 days and keep on thinking positive thoughts. I have been almost an entire week now with no O2 during the day. This didn't happen until recently on a steady basis. You have lots of good things ahead of you. Your ride has just begun so hang on tight and be good to yourself. Ed will be the first to tell you how much up and down he experienced with his stem cell treatment for MS. It is not unique to COPD patients, nor to anyone that has had stem cell therapy. Mr. Toad is not kind to us in the beginning and the Wild Ride will last for awhile. You have my sympathy because I have been there and done that many times. I didn't give up and had no one to tell me or help me with what was going on except Ed who mentioned the roller coaster and Jeannine. She and I used to e-mail each other constantly with all sorts of problems we were having. Then it got better and we started e-mailing about our sats being better or how we ran up the stairs with no SOB. Then the next week it was back to how we felt we were going to never get better. On and on and on until now we are finally on a fairly even keel where we can count on good days everyday. You all will achieve this, but don't fall victim to the nasty Impatient Syndrome and fall off the wagon. Stick with your lung exercises, your supplements and your diet if you were given one and most of all stick with your hope of getting better.
 
B

barbara

Pioneer Founding member
I want my cake

Rose - I forgot to mention that your grandson doesn't need all that cake. I think I do though, so please send the next one to me. My biggest downfall is dessert. Barb
 
C

Connie Golden

New member
Photos

Rose, lthank you so much for photos. I do not have any from Ward and would appreciate seeing them. How about you, Bev? I saw your camera. Don't you want to share and how are you by the way?
All best, Connie
 
B

barbara

Pioneer Founding member
Bev's photos

I heard that Bev sold her photos to the National Enquirer. There were some hot ones of all of you at the pool skinny dipping and she felt it was a good way to pay for her treatment. This is just what I heard, mind you.
 
You must log in or register to reply here.
Top