Newly Diagnosed

[crafti trish]

Hello everyone, I am new to this site because I was just diagnosed with stage 3 emphysema. I am very upset and kind of unsure of where to turn or what to do. I am only 43 years old and honestly don't feel "that sick", but apparently I am. Since I don't feel that sick, I am hoping for advise on what I can do NOW to really make a difference and delay rapid decline in my condition. Or even reverse it some, as seems possible with stem cells. I've also read that Vitamin A therapy has had dramatic effects. I am looking for any and all advise on any and all treatments that may have been tried. Since I am so young, my doctor said that my emphysema was so severe that smoking alone would not have caused it to this degree, so I want to get tested for AAT. Help please any and all advise would be greatly appreciated. I'm too young to be here already, good lord, I guess you've all said that though regardless of your age!

 

[Jeannine]

crafty trish

Welcome to the our forum. Many of us here (myself included) suffer from COPD. While it is a severe illness this fear placed in us by the doctors that we are going to die at any given moment is greatly exagerrated.

When I was first diagnosed in Feb 2005 and was given all the doom and gloom scenarios I thought for sure I would be dead in 2 years. Instead, I feel better now than I did then.

There are a couple of things you can do right now that I've found to be quite helpful. Make sure you get the medications you need and keep walking as often and as far as you can. This board isn't really intended to be a COPD help site but I would be happy to give you some assistance if you send me a private email.

I would also advise you to get tested for Alpha1 as soon as possible as there are medications that can slow down the progression if you have Alpha1.

There are several people who post here who have been diagnosed with Alpha1. It would be great if some of you could contact trish privately and help her out.

Good luck Trush and welcome

 

[barbara]

Hi Trish

Welcome Trish - Get yourself into pulmonary rehab too. This is a godsend for people with lung disease. Also, I think that a good supplement program is helpful. There are certain supplements (NAC, vitamin C, vitamin E, green tea, etc.) that can help. If you are considering stem cell therapy, it is also likely that the sooner you have it done, the better. You don't mention if you are on O2, but if you aren't then doing something to stop the progression of your disease as soon as possible would probably be useful in avoiding that. If you can get in a clinical for retinoic acid, I have also heard that this is working well. Unfortunately, retinoic acid is only available through clinicals at this point. Another good thing is to keep yourself from getting stressed as much as possible. If you live a stressful life, change it. I think it is one of the most serious problems with our illness. You may want to talk to some stem cell doctors too once you determine whether you have an Alpha 1 problem or not. Have you been around any other environmental situations that could have also contributed to your condition? Like Jeannine cautions, do not believe all the doom and gloom. Keep a positive attitude. Hope is our friend.

 

[rosech44]

Welcome Trish

Hi Trish--welcome To The Group, And I'm Sorry About Your Diagnosis---I Agree With Barb, The Most Important, Is First Know What Exactly You Have, Then Get Into Pulmonary Rehab---it Will Answer A Lot Of Your Questions, Teach You How To Live With Your Emphasyma, And Strengthen Your Body And Lungs--
If You Have Questions I Will Help All I Can, Private Message Me Anytime----don't Panic---good Luck

 

[crafti trish]

No Doom & Gloom

Thank you Rose and Barbara,
Wow, I just typed a reply and it was lost. Ugh, I will try again.

To answer your questions Barbara, no I am not yet on O2. And I have requested to be tested for AAT.

Yes I have an extremely stressful lifestyle. Been working 10-12 hour days pretty much for the past 5 years without a vacation. My mother is almost 70 and not in good health and she is taking care of my brother who is 47 and was paralized about 7 years ago. I have a lot of stress from family situations and work. I am so busy I have let caring for myself and my home go. I have 3 dogs and 4 cats (I manage a very busy Veterinary Clinic) and believe I either have accumulated too many dust mites or have become allergic to my pets in addition to the other issues! Puffy eyes in the mornings, sneezing and stuffy nose.

Environmental exposure? Yes I think so. Last April I decided to gut the back two rooms of my house to make it one big office/craft room. When we opened it up I discovered MAJOR MOLD, rot and asbestos tile. I had to live with that opened up for about a week before people could tear it down. Around June I became sick with what I thought was a cold but remained sick to great varying degrees until the end of December. I was so sick that I went to the ER twice for panic attacks because I couldn't breath. Even called a rescue squad for myself once. Finally my regular doctor gave me Levaquin and that knocked it out. I am hoping that my bad pulmonary test results are partially due to still recovering from that illness. I don't feel like I have recovered to where I was before all of that yet - if I will.

But, if Stem Cell Therapy could help regenerate the damaged parts of my lungs then I want to know more about it. I'd really like to hear about any actual test results anyone has and approximate costs for having treatment.

Thanks!

 

[barbara]

Too much going on

You might try something simple like Loratadine (I think it is the generic of Claritan). When I got ill over ten years ago, I had the same type of allergy symptoms and yet I am not allergic to anything now and probably wasn't then. I have pets too and even developed hypersensitivity pneumonitis as a result of my work with birds. I have since cleared all of that up, but I think it contributed to my COPD greatly. I also was exposed to lots of grains and hay. You are way overdoing it and it will catch up with you I am sorry to say. You need to get someone to help out with your mom at least for part of the time. I have an 87 year old mother that I care for and it is tough at times. As for your dogs and cats, I have 4 dogs and 4 cats among other things. I love them dearly and in no way could I part with any of them. They are my destressers. You need to take time for yourself. PLEASE! How could I tell you were stressed when I posted to you? One reason is that I think people that get this dreaded lung disease are the types that way overdo everything. We are always in a rush. We pack in 40 hours of stuff to do every 24 hours. It never ends. We keep at it day after day. Stem cells at this stage of the game for you could be very beneficial. I really don't know. I am not a doctor and each person's improvement is somewhat different. Age and the stage you are in though will make it easier for you to improve. Some on the forum have had lung function tests, others have not. Nothing like statistics shooting us back to normal, but at the same time encouraging plus the fact that many of us simply are just feeling better and more energetic. Jeannine and Rose are both right on with what they posted and their offers of help for COPD questions through private messaging are very generous. We have a great group on here, so I am hoping you will join us often. Prices at clinics vary from $9000.00 to $59000.00. An expensive price does not mean better treatment! I think if you will take some time to read through some of the threads, you will learn a lot about stem cell treatment.

 

[Bev12452]

my 2 cents

Girlfriend bless the day you found this group they have helped me so many times I am one of those girls that stress over everything and it has done nothing but bring me down and my health has gone down with it I was diagnosed at an early age and told I needed to be listed for a lung transplant that was back in 96 now 11 yrs later I think I was told that I needed to list for the transplant I went to treatment in Oct and I have really started to finally feel results You need to find out for yourself how you feel I was told with my lung numbers I shouldn't even be able to dress myself but I prove them all wrong your spirit can carry you a long way and the Dr's, even though they don't believe it, aren't God they don't know how long any of us have on this great place keep a great mental attitude and if you need help get an herbal supplement to de-stress and ask all the questions you have you will be OK

 

[Mysty119]

my thoughts

In my opinion, pulmonary rehab is a must for us COPD people. No matter how "busy" any of us are, being busy is not the same as excercising. We get tired with COPD and most tend to not do much because we tire so easily. Rehab helps us with that also. And we learn a lot about breathing right in rehab. Going in to rehab, I wore oxygen on the treadmill and the bikes and the upper body strength exercises at 3 lpm. After rehab, I only needed oxygen on the treadmill and only at 1.5 to 2 lpm. At this point, I sleep with oxygen and use it with any exertion; cleaning house or my exercise. And I've learned "how" to go up and down my cellar steps to my treadmill without oxygen thanks to the rehab.
I have been on vitamins and supplements since about 1992--at my choice. And I believe they really do give me more energy and keep my emotions level.
I have not had stem cell therapy yet---but I hope to have it done very soon. I look forward to having it done.

 

[barbara]

NOVAC disease

Unfortunately, many doctors don't even suggest rehab. I agree with you that rehab is a must. I suffer from NOVAC. You may have seen my posts regarding this horrible affliction. Not even rehab can help with that or stem cells!!!!!

 

[Mysty119]

funny lady.....

If I remember correctly, your NOVAC disease is just that..... NO VACuuming!!!!! Am I right???

 

[barbara]

NOVAC disease

It's very sad, but yes, that is what I suffer from that is totally 100 percent incurable.

 

[crafti trish]

Thank You

You guys have been a big help and I really appreciate the private e-mails. I've had a lot to think about and am learning a lot. I will definately ask about respiratory rehab. I want to learn everything that I can so I can have all of the tools that are available (and affordable) in my little arsenal