Re: Norma

[Guest guest]

,

This will be short as I need to take a nap. I have a friend coming over Saturday to clean my house which will help. I plan to get up early in the morning to go to the store before all the people come with their germs. I wear a 3M N95 surgical mask which should help too.

My theory about bronchiectasis and bacteria such as pseudomonas is that germs grow better in humid and perhaps warm environments. I am sure that my pulmonary doctor would not comment on this. I do think that perhaps mine was caused by the sinusitis drainage or possibly measles when I was a child. Since I am 69 years old, they did not have all the immunizations that they have now. Also, I remember having some lung infections as a child. My mother did not keep records like I did for my children. My children have copies of all their immunizations up through college (originals are still in bank safe deposit box), and I have written a detailed medical history on each child and have sent them to each one.

Time for a nap now. I am starting back to pulmonary rehab. next month. I will only be able to go the first two weeks of each month as I have to do my Tobramycin breathing treatments that take about 45 minutes twice daily the last two weeks. I have to drive about 15 miles to rehab.

Sorry that I am so late in answering your email.

Go rest now as I am going to take a nap,

Take care,

Norma

[Guest guest]

Hi Bunny,

My appointment with my gastroenterologist is next Tuesday. He was on vacation this week. I had to cancel a dental appointment this week as I have to take 4 amoxicillin tablets (a penicillin antibiotic) one hour prior to my appointment before cleaning my teeth since I have a heart valve that does not close properly and need to have an antibiotic to prevent a possible heart infection.

I drink Boost nutritional drink as I like it better than Ensure. If I drink the Plus drink, I can gain more weight. My average weight is 110 to 112 pounds, and I have dropped to 95 pounds. I had severe intestinal cramping early the morning before my dental appointment, and I think it was because I ate a hamburger from Sonic at lunch the previous day. I suppose my gastrointestinal system has still not completely recovered from the antibiotics.

When I go to the hospital, I usually always see the same pulmonary doctor who is on a three-doctor team with my doctor. I really do like him as he always has time to listen to me and answer questions. He performed my initial bronchoscopy. They have a physician's assistant who sometimes sees me in the office. She always confers with my doctor and if he thinks that he needs to see me, he will come in. When one is on Medicare as their primary insurance (persons over the age of 65), I do not feel that we are given as much attention. I am now also seeing an infectious disease doctor whom I have seen before. She often confers with the pulmonary doctors. She has given me more information than any other doctors have. Her husband is a gastroenterologist and is in the same group as mine.

The mask that I purchased to wear on the plane to Chicago to see my children last August is a 3M N95 Health Care Particulate Respirator and Surgical Mask with at least 95% filtration efficiency against solid and liquid aerosols that do not contain oil. As I understood the information specialist at 3M headquarters in Minneapolis, MN in the U.S.A., it protects both the person wearing it from others and others from what germs we may have. I asked my doctor about wearing it. He said, "Wear it if you want to." Since I had to take my nebulizer kits, air compressor, inhaler medications including the Tobramycin, I asked the doctor if he would write a note that I could carry with me concerning the need for these items. I was stopped at O'Hare Airport in Chicago. The screener wanted to know what the compressor was. I had information about it and showed him the doctor's note that his nurse wrote out and the doctor signed. The nurse also wrote the diagnosis: bronchiectasis on the prescription. I purchased my masks at a medical supply company where I purchase my nebulizer kits. I do not remember where you are located. The telephone number for the U.S.A. is 1-. In Canada, call Technical Service at 1-. Perhaps you could check to see if they have any information on their web site. I do not have that but assume that it would be www.3M.com

I feel that if I had continued to wear the mask when going into stores shopping at least through the end of March that I could have avoided the pneumonia. I paid $35.00 for 20 masks. From what I understood from technical service at 3M these can be worn more than once as long as they do not get wet. This is something that you may want to verify if you call them. Their mailing address is 3M Center, Building 235-2W-70, P.O. Box 33010, St. , MN 55133-3010.

If you have any further questions, please let me know.

Good Luck,

Love, Norma

[Guest guest]

Bunny,

Just another note about the reflux. If you want to check the web site for National Jewish, it is www.nationaljewish.org

For information about bronchiectasis and reflux, etc. click on the section--Diseases We Treat--at the top of the page.

Sorry for so many emails. Since I am tired, I could not get all the information together at one time.

Good Luck,

Norma

[Guest guest]

Hi Norma,

I hope you are feeling somewhat better and received a good report from the gastroenterologist. I understand what you are saying about co-ordinating postural drainage with eating meals. I have problems with reflux, which isn't helped by lying upside down 2-3 times a day. I used to be very thin, but I am now trying to lose some weight! The drink "Ensure" helped me to regain weight each time after a bout of pneumonia. Then once I started to feel hungry, I went for foods like burgers, chips, and all those "no no's". If you can't tolerate high fat food, perhaps a soy milk shake, or similar, with each meal will help you to regain your strength.

When I'm in hospital, I usually only see my pulmonary doctor once a week. The registrar and respiratory team look after my daily progress. However, I feel comforted that if something is not going right, my pulmonary doctor is only a phone call away. I feel that you need to be cared for by one specific pulmonary doctor as you need that continuity especially with our complex problems.

Just a quick question. I remember you mentioned using a breathing mask when you take a plane trip. I am hoping to go home to visit my Mum interstate soon, and want to take all precautions on the plane as we are heading into our "flu" season. Can you tell me what type of mask to get, or should I just ask the pharmacist?

Take care, Norma.

Love Bunny

-----Original Message-----From: nor236@... Sent: Sunday, 2 May 2004 2:52 AMTo: bronchiectasis Subject: Re: Hi Everyone!

Hi Bunny,

Thanks for thinking of me, and I know that we all appreciate your positive support. I am feeling better but still have some gastrointestinal problems from the antibiotics. I have an appointment with my gastroenterologist next week to see if I need another endoscopy and colonoscopy. Since I have had breast cancer and at my age, 69, I need to follow up on the colonscopy especially. The antibiotics really do upset my body in this way. I seem to have a hard time coordinating eating meals, using the vest and doing postural drainage and not eating within two hours before lying down. Since these treatments require that both postural drainage and the vest must be done one hour after eating a meal, it is difficult for me to eat enough. I am very thin so need to eat more, and my gastroenterologist does not want me to eat high fat food. Any suggestions from anyone who has a similar problem would be appreciated.

When I go to the hospital I see various pulmonary doctors as my doctor is in a large group of doctors. I like some better than others when I see them in the hospital. This last time since I was only in the hospital for five days until the culture results were available, I was discharged with the oral antibiotic, Penicillin, I did not see my pulmonary doctor at all. We have three large hospitals in Austin, and the doctors alternate going to see patients at all three hospitals. When I have my office visit, I have most recently been seeing a physician's assistant who confers with either my doctor or any other doctor in the office on that day. I am also seeing an infectious disease doctor at this time. She has given me more information and thinks that I need a follow-up CT scan since I have not had one since my original diagnosis in 2000. Any suggestions as to how to determine if one has a good pulmonary doctor would be appreciated. My doctor does not tell me very much. His brother was my breast cancer surgeon and was very different.

Thanks and Best Wishes,

Norma

[Guest guest]

Hi Norma,

Thank you so much for all the information on the breathing mask and reflux, plus the websites. I appreciate your time and effort in doing this research, and your wealth of knowledge. Yes, I am from Australia, and I will follow up on the info you have provided.

In relation to the reflux, I have been taking Losec medication for a few years. My gastroenterologist told me that the reflux could exacerbate the bronchiectasis. Until then, it was never mentioned by my other doctors. It's interesting that reflux may actually cause the bronchiectasis. We still have so much to learn about this condition! Now, if only we could find something magical to make it better :-)

I'll talk to you again soon, Norma. Good luck with your appointment on Tuesday, and please let us know how you get on.

I hope you feel better soon.

Love Bunny

[Guest guest]

Dear Bunny,

I am glad that you found the information that I sent helpful. If you cannot locate any of the 3M masks, I would be happy to send you some of mine. The box had 35 in it and I still have some left. Please let me know.

I ran a low grade temperature last night but it may have been due to the fact that I raked up some wet leaves in the yard and cut a few small limbs off of our trees after a light rain. I may have picked up some germs there even though I was wearing my mask. I think it is most likely due to the fact that I missed a breathing treatment yesterday, was stressed and got too tired running too many errands and cleaning my car. We have had a rainy spring and every time that I thought that I would wash the car, it rained. I have a hard time pacing myself. I am 69 and have other health problems and have recently developed arthritis. I am eager to return to see the infectious disease doctor as she is the best doctor I have for both my bronchiectasis and my gastrointestinal problems since her doctor is a gastroenterologist in the same group with mine.

I do not know what I would do without you and the other wonderful people in this group. My husband and children are not supportive. My husband has been working out of town and came home this weekend. He has a drinking problem which does not help me. He announced that he was going to go back to London again for a visit soon. He will go again even if I should happen to be in the hospital.

Thanks for your continued support.

Much Love,

Norma

[Guest guest]

Lynn,

I have been checking emails all day today since I only received one Mother's Day call from one of my three children, a son who lives in Chicago. My daughter who also lives in Chicago has not contacted me since I had an asthma and tachycardia attack at her apartment back in 1999. My other son is mad at me for not divorcing his alcoholic father. When I had breast cancer in 1989, he left home to go to another city where his father was working at that time as he does not know how to be supportive. None of my children are supportive of my illness. Since their father is not, I understand why they are also not supportive. I did not intend to share my personal problems, but I just wanted to let you know how much I appreciate the support and love that I have found in you and the others in this group. Today I was looking at the beautiful green lawn from the beneficial spring rains, I thought about the task of watering our very large lawn this summer as I have always done. Today, I decided that if their father does not help with this task this summer, I will just let it go and take care of myself like I should have been doing for the past several years since I was diagnosed with bronchiectasis. I do see a psychologist and go to Alanon, but this group is the best support of all.

Much love to you, my former Midwest neighbor,

Norma

[Guest guest]

Hi Norma,

That's very kind of you to offer the masks, thankyou, but I'm sure I will be able to track some down here.

Sorry to hear you haven't been well, and I hope you haven't picked up another bug. Please take care of yourself and let some of the chores go for a while. I'm sure you are still recouperating from the pneumonia and need lots of rest. I know it's hard to do when you have jobs staring you in the face. I'm the same, I worry about the house being untidy, chores to be done, when I should be worrying about my health.

Norma, I'm always here for you, too. This group is wonderful, and you have always been so supportive to everyone, we all need a little help at one time or another.

Love Bunny

[Guest guest]

Hi Bunny,

Thanks for your concern. I am going to do as you say as I know that not taking care of

myself causes problems. I think we all know this but I have been so accustomed to working hard that it is hard to be a little lazy and think about taking care of myself sometimes.

Thanks too for your support.

Love, Norma

[Guest guest]

Tina,

Would any kind of upper body exercise help 's cough reflex or is there any physio type therapy that would help that? I remember that you mentioned that when he coughs it is barely audible. I know what you mean about not knowing what to do. It seems like you have done an extraordinary job of protecting him and seeking the best medical care you can for him. It is so hard when one doctor says one thing and another says something else. They told me the first time that I was in the hospital when each doctor said that I would be there for a different amount of time that "It is the practice of medicine." I told the nurse case manager that I thought that they did that when they did their internship and residency.

You are a very "special" mother.

Love, Norma