Stem cell treatment update

[Everett]

Good news and God's blessings
We are back from Sarasota and things are comtinuing to improve it seems. Dr. F is pleased with the results of the transplants and doesn't want me to return until May of 2011
The results that I was upset over was explained by my pulmonologist. I have a reading of FEV 1 as the same as it was several years ago. That is not only a positive reading but translates into an improvement. Dr. S said that I normally should decrease in volume by 2% over the time span but mine has stayed the same which translates into a 2% gain which is what we are shooting for. This was after two months. Dr. F said that I probably wouldn't get any real results until three or four months and mine was after two and improving. He also said that the power of thinking positive about all of this is important and I agree. I was disappointed that I had not shown improvement out of the test from Dr. S' office but I had not been told that under normal condition there should be a decrease and mine stayed the same which translates into a positive. I am sorry that I let it get me down. That is not my normal nature. I normally ask for the whys something happens and I didn't in this case.
The expansion in the thorax of my lungs is down from 6% to 43% of normal exhalation. I have been trying to force more air out of my lungs and don't know if that is what is doing it or something else but I am going to keep on doing it to see if a) I can make the lungs decrease in their size on exhalation and b) improve the elasticity of the lungs if that is possible.
Also-- My cardiologist checked out the results of a bunch of test that they ran on me and he said that my system is good and that he doesn't want to see me for a year unless I detect some problem.
Now if I can do something about these wrinkles and greying hair------
One thing I want to say is if you don't understand what the Dr. is telling you ask him/her to repeat it in a way that you do and if it is still not clear then ask again. That is what you pay for and your cretaker should be kind enough to take the time with you to explain it.If you have trouble remembering details of the conversation then write it down or record it on your phone or other devise but explain it to the doctor that that is why you are doing it so they wont think otherwise.
You are the patient and the important one involved. Don't forget that or be intemedated by all of this mess we are in.
Dang it's good to be home!!!!!!!!!!!!!!!!!!
Everett

 

[Connie]

I am so glad to hear you made it back home safely. I'm also greatly encouraged by your improvement. I always get excited when they tell me there has been no change. In our world keeping up is a big deal. I am hoping to follow in your footsteps soon. Hopefully the first of the year I will be making plans for stem cell treatments myself. I have an appointment this week with the Transplant center and hope to hear that I have not declined since my last visit.

 

[Everett]

Winter setback

Well this one nearly got me. I had to go to the hospital Christmas day and they sent me home the next day. Big mistake.. I was back in the next day and was air lifed to San Antonion the next. It was very touch and go. I'm home now but confined to the house for two weeks. They have told me to sell mu practice and quit seeing patients. I don't know that I can do that. This year makes 50 years of practice and old habits are hard to break as we all know.I had been doing so good until then. I really hate to tell Dr F. My pulmonologist has rethought my longivity and now says it is months instead of years. My thoughts are if the Lord is through with me here then yes. If not then we will wait on the Lord as we should and He will tell us when.
Jeannine and Tony, I hope that you guys are high and dry and warm. It's cold here but not like up there. I know the High Country is cold. I talked to a buddy in LaVeta and it was in the teens.. Stay warm everyone and safe.
God's blessings on you all,
Everett

 

[barbara]

Everett - Have you considered trying Daxas? It is supposed to reduce exacerbations. Since I started taking it, I have experienced side effects, but I have had zero problems with the usual crud that goes around every winter.

I felt horrible reading your post and hope that you will continue to do what you feel you can do. Unless your patients are causing you to catch colds and other bugs from them, etc., then why give up something you love? I guess I don't understand that reasoning as long as you feel you can do it physically.

It is below zero here in Denver tonight. BRRRRRRRRR

 

[Jeannine]

Everett

I guess Christmas was hard on the lungs this year. My sister suffered a collapsed lung and spent Christmas in the hospital

I am sorry to hear of your rough going and I am very happy that you pulled through it OK. If I were you, I would keep working as long as you are physically able. Nothing worse than idle hands or lack of exercise.

I hope you're taking at least 2,000 IU of Vitamin D each day. That seems to help in fighting off the bugs floating around. As far as the doctors giving you a certain amount of time. HA! Don't let them talk you into anything. They had me checking out over 3 years ago.

We are ready for the storm heading our way tonight. We're used to it here although one woman was seen out at 6am today stocking up on groceries wearing her fuzzy slippers and sleepwear. She made two trips to the grocery store because she couldn't fit it all into her car in one trip. LOL

Take care and keep us posted.

 

[Bev12452]

Everett so sorry to hear about your side trip to San Antonio I love to visit there still have friends there but would not want to go there the way you did I went to see Dr F last week and he wants me back in April I am feeling better but still losing weight now down to 99 but otherwise I feel great I have alot more energy and my breathing is good I don't check my numbers like I use to I do know before I get out of bed my o2 has been up to 97,98 once it was 99 but I think it was wishful thinking I don't like this cold weather and try to stay inside it is 30 here and for Florida that is cold with a wind chill it is 26 the only ting we don't have is the snow DR F told me to stay inside use the treadmill until the weather changes so I will just go out when I have to I hope you feel better soon maybe one day DR F will let us both come in at the same time so we can finally meet he said he is moving into a new office we could really give Toni a hard time lol hope all are warm and safe

 

[Pat]

Good news

Glad to hear that you are better; I agree that you should keep working as long as it brings you happiness and satisfaction. My theory is that once work quits being fun, then it is time to hang it up. You are so right that keep your progression in check, is indeed improvement. One of these days we are going to lick this disease. God Bless. Pat

 

[Everett]

Back to the pulmonologist

Just want you all to know that I am still with you. I go to see my lung Dr. at 2:15 pm and I don't think he is going to be too happy with me. I have patients in the morning Pat and the MD wont be smiling. Tough. I am going to work till the last. I think that is what I am supposed to do and that is that!
I run out of O2 easily and am on it 24/7 again but that is where I was last spring and summer. I had gotten off of it while working at the office and while I was at home sitting around etc so I may just get back there again. The Lord hasn't told me yet.
Jeannine posted a great aritcle on 1-27 in announcements on the enzyme aldose reductase that is out of research down in Galveston-- Texas Med School. I would love to volunteer for that one on clinical trials.
For you up in the cooler climes it got over 70 here today and may hit 80 tomorrow. Of course it will turn cold on Tuesday and Wednesday with a really cold 29 degrees in the PM. We have grass greening up at the ranch already. I have already quit feeding the deer. Feel sorry for me yet????????????
Stay warm all,
Everett

 

[Jeannine]

Everett

I have been thinking about you and wondered how you were doing. Glad to hear you're still kicking around. I think sitting around the house makes you weaker so I plan to keep going as well.

 

[barbara]

Everett - Hang in there. Do you know when the clinicals will start? I would love to see you get accepted into the trial. As for your weather news, we had 71 degree weather a couple of days ago. Unfortunately, with the wind chill factor, tomorrow is supposed to be minus 15. That's Colorado for you.

 

[Everett]

Answered prayers

Well He has done it again!!!!!
We ( Linda and my daughter Michele ) and i went to see my pulmonary MD this afternoon- I recieved a glowing report that my lungs are back up to their baseline before I had the attack over the holidays. He has upped my longevity back into years again and is glowing over how all this has come about again. WE may make a convert out of him yet! I thank all of you for your support and prayers and encouraging words especially when I would get down in the mouth (pardon the pun). I will be back in the office in the morning doing what I love. He still has something for me to do I am happy to say. Stay warm. The artic front is to get here around 8 AM and whatever the low is at that time is to be the high for the day. Turn up the heat somebody--
Everett

 

[Everett]

Clinical trials in Galveston

Barbara,
I am going to call the man heading up the research to see what will be taking place and when. I dont know if they want someone this advanced with COPD and at my age (young) or not. I'll let you know. Dr. Syed didn't say no to me getting involved but he has suggested a procedure of lung reduction to me. There is a surgeon in Houston doing it now and Dr. S would like to see me talk to the Houston Dr. Dr S has a patient that was worse off than I am and he has had the procedure done and is really doing great. Linda and I are to talk this one over in depth...

 

[Connie]

Everett, I'm so glad to hear your great news. Seems like these Doctors would quit thinking out loud when they have these negative thoughts. Taking hope from patients is like signing death certificates to some. Me, I just get more determined. I think the only reason I do so well with my very diminished capacity is I just have to prove them wrong. How dare them tell me I can't do something. Glad to see you are proving them wrong too. Good show! Keep it up!

 

[Jeannine]

Connie

You make me laugh because I feel the same way.

Everett, I believe much of my breathing problem stems from hyperinflation. I am very short waisted and when I stand or walk around I have an easier time than when I sit. If I sit hunched over the keyboard I actually cut off my breath. I know several people who have had the VATS procedure and are doing my better. The improvements can last up to 8 years (typically 5 years though) at which time your lungs revert to your current situation, but who knows? By that time something else might have come along.

I have been doing some research on the procedure and am still unsure.