Fatigue

Kirsten, I remember when we had 3 small children. It was alot of work, but usually not exhausting.

I'm hoping your bleeding problem gets fixed real soon. Keep me posted. Did you get any infromation that might be helpfull from the forum?

Did you read Elizabeth's letter about her experience with exhaustion.

and resudual pneumonia and the part about crowds and exposure to illness. Of course with children that is harder.

I can offer support and will bring anything I come across to your attention. I'm seeing my Pulmonoligist onTuesday and will ask him about bleeding without mentioning your name, like he would know you anyway.

Russ

 

Elizabeth49611, thanks for these insights. I had not thought of them. I was a nurse for 30 years in ER's and hospitals and tend to think I am immune to every illness that comes along, so now I see I must change this attitude.

I see my Pulmonoligist this coming Tuesday and will bring your experinces to his attention. I like your last sentence about being carefull about crowds and the lot.

Thanks a billion for your observations

Russ

 

Russ,

I realized that my pulmonary specialist is not a specialist in this illness, bronchiectasis. I live in the states and he even referred me to he Mayo Clinic (a 9 hr strip away, but has the best of the best doctors). I learned about how to keep my lungs drained and to exercise them.

Last moth, I even wen to the Lung Institute for stem cell treatment.  They removed some of my blood and bone marrow, removed the stem cells and then reintroduce them into my system. The stem cells then migrate to the scared issues in my lungs and start to repare the damage and inprove lung function.  I won't be able to tell for about 3-4 months.  But it was worth a try.  

I had to really think about it as insurance won't cover it.  All out of pocket $11,000).

Look online on ways to keep your lungs cleared (use of a flutter valve, posturing, etc)

Keep healthy, Elizabeth

Elizabeth, thank you so much for your experience in going to Mayo. I had not thought that my Pulmonogist might not be able to manage my Bronchi.

Will bring it up with him on Tuesday. I'm glad you are doing better. Let me know if your are getting a positive results from the stem cell proceedure. Good breathing and much health.

Russ

Elizabeth, i was very interested to hear about your stem cell treatment. I am also wanting to go that route as it sounds very promising especially for lungs. I need as much information as possible about if and when you feel the effects and what effects. As you said it will take 3-4 months before results will manifest.....but i will keep watching your site. The stem cells I am looking at get harvested from your tummy in the form of fat. Two good jobs in one proceedure. 

In anticipation

Janine

Harvesting from the tummy area was another option.  Since I had a tubalication and the bellybutton area was scared, they couldn't take from the tummy area.

Where are you having it done? My was in the Nashville, TN.

Good luck, Beth

Hi Beth. I am in Cape Town, South Africa, but have been discussing my visit with a treatment centre in San Diego, California. The price is also around 11,000,00 USD which is 200,000,00 South African Rand. A monsterous amount, but if it is going to work it is worth it. I am scouring the local research centres for someone looking for a volunteer while I gather more information. For me and the state of my lungs I really have nothing to lose.

It is wondeful to chat with someone who has actually had the treatment done. Did they say you will need more treatments?

Big fan, Janine

They said thatsome people start sliding back in about a year or two and will come back for another treatment.

The volunteer route would be a good way to have the treatment.

I'm hoping that this treatment will help, Beth

 

Elizabeth, I'm wondering how you are doing. I have been having  more fatigue in the last three weeks. Steroids usually help but did not help this time.

Sputum production has doubled.

Where are you in all of this?

I may have to pusue the idea that I have an infection without fever as you mentioned.

Russ

Russell,

I can't really say that the stem cell treatment did a noticeable difference. It has been a year. I maybe worse off now if I didn't have the treatment. Who knows!

I have had chest tightness that causes sob most of the time over the last few years. When I saw my specialist in November, I asked about my asthma in relationship to my bronchiectasis. It seems that most people that have Bx also has asthma and/or COPD.  He put me on a new inhaler, Dulera, It has made a world of difference. Very little shortness of breath and a lot less sputum. I have been able to decrease my predinsone (which I have had to take for years) from 40mg a day to 10-20 mg per day. My lung function is the same as a year ago, no decline, that could be due to the cell treatment.

As far as you having an infection without fever, I rarely have a fever with an infection.

You may want to talk to your doctor about alternative meds, if the ones you are taking now are not working very well.

Keep in touch, Beth

Elizabeth, Glad you are doing better on the Dulera.

I was offered Dulera but refused it becasue I was maitaing with my asthma.. Now I will  pursue it.

What did the doctors say about inprovment with your stem cell aplication?

What to expect in the long run. Glad your lung function is holding in.

Im going to see my Pulmonogist and ID docs this week to  check to see if I have an infection. Sounds very much like what you saying is your experience.

Best

Russ

 

Russ,

I recieved a call from the lung institute about a month ago, asking if I wanted to have another treatment. I was told a year ago when I had the treatment that many patients come back in a year or two for another treatment. I declined. If I had noticed a big difference, I may have said yes, but $10,000 is a lot of money, so having spent that much money for the first treatment, I just didn't want to go thru it again.

You mentioned that you are feeling fatigue the past few weeks. Steriods worked great in the beginning, but I think the body gets immune to them. Years ago, 10 mg of predinsone helped a lot. The past few years, I was taking 40mg per day and still feeling tired and congested.

I've been on the inhaler, Dulera, for about 2 months and I can tell that starting a few days ago, I'm not feeling as good as I did. It could be that I'm coming down with something or that my body is starting to get immune to it.

My husband and I are leaving this coming weekend to spend a week in Hawaii, so hopefully, the warm salt air and sunshine will help.  

Stay healthy, Beth

 I will be waiting to hear what your trip to Hawaii does for you symptoms.

Very clean air out in the Pacific Ocean.

Sort of cheeky I think of the Lung Insitute to to see if you wanted another treatment after the first one ,since you didnt seem to have any improvemnt.They should have a special deal for people that have gone trhough it in my opinion.

Hope you have a great trip. 

Good Health

Russ