<b>1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?</b>
I have been receiving treatment at Wilford Hall Medical Center (Lackland AFB), San Antonio, Texas, for the past 12 years. Started out on the peds floor and am now seen by the adult teams. I'm 25, btw. The care is absolutely phenomenal and the doctors are world renowned. The amount of CF studies conducted by our very own doctors is staggering and the clinic halls are lined with their work. My previous adult pulmonologist was recruited by NIH and is now developing state of the art treatments to combat Mycobacteria, etc. In fact, I was one of his guinea pigs. <img src=""> Infection control is good and adult patients are kept far, far away from the kiddos (who are on a separate floor). I can honestly say that in the the last 5 years, I've seen maybe 1 pediatric CF patient. While inpatient, all the CF patients are placed under mandatory "contact precautions" but that is mainly a protocol that Doctors/Nurses/Techs must follow. They wear gowns and masks when entering rooms.
<b>2. Did they allow you to do home health for clean outs or were you required to stay inpatient?</b>
It's entirely up to you. Some patients feel better staying inpatient, while others, myself included, leave for home health care after a few days. The home health care company (Corithian, IIRC..) that works in tandem with WHMC is amazing and they are great, great people.
<b>3. How was the air quality in the city you lived in?</b>
Allergies are a big problem in San Antonio; mountain cedar especially. As far as pollution is concerned, during the summer you can expect innumerable "Ozone alert days" which means that air quality is at an unacceptable level. We managed to stay under the federal limits last year, but the two previous years San Antonio was regularly above the limit. The humidity + pollution can really do a number on some folks.
<b>4. How did the weather affect your CF in the city you lived in?</b>
The worst aspect about San Antonio is the dramatic and sudden weather shifts which can as you probably imagine wreak havoc on a CF patient. For example, on Tuesday we hit a record high of 85 in the late afternoon only for it to snow (yes, snow) 6 hours later. During the winters, you can except temperatures to remain relatively mild with summers being scorching 'melt eggs on the pavement' fests.
<b>
5. How close did you live to the city with the CF center?
</b>
I'm 25 minutes away from WHMC.
<b>6. Was it a large center, i.e. over 150+ patients, or relatively small?
</b>
Relatively small contingent of around 30-40 patients. Mostly comprising of pediatric.
<b>7. Did they listen to you and include you in decision-making and treat you with respect?</b>
Every and all decision is made after deliberate and candid consultation. I seriously love the group here. Just last week at my follow up I had made some recommendations concerning future admissions and what could be done to shorter the stays and avoid static PFT results and the Doctors were all ears and enthusiastic about working with me on this new approach.
I cannot stress this enough but WHMC, even though it's a large hospital and has a relatively small group of CF patients, is basically your Castle while you are inpatient. The nurses love us and work around our schedules and the doctors are incredibly open to any ideas you have. The camaraderie between the floor nurses/techs and the hospital staff in general with us demanding CF patients is indescribable. In fact, it's not uncommon for nurses/doctors to trade emails with patients just to keep up to date on life's events.
<b>8. Did your center offer clinical trials?</b>
Very rarely. I've been a part of one study the entire time I've been coming here (TOBI) and never offered clinical trials again. However, like I said, the CF team is open to anything and everything. I asked about the e-flow a few months ago and whether or not it would be a prudent decision and the team decided to try it and see how it would pan out. Since then, my PFT results have been amazing and the doctors are now working to get every patient their very own e-flow.
<b>9. Did your center have a lung transplant center?</b>
The lung transplant center is about 10 miles down the road at a hospital called University Health System, a product of the University of Texas. When the CF team, along with the patient, feels its necessary to start the transplant evaluation, they'll send you over to UHS to get a complete work up. Both of the teams work great together and I've heard amazing stories about their success. I personally know a few patients who had transplants and within 3 days, we're climbing the stairs and 10 days, back at home. The turnaround after being placed on the list is astonishingly fast and IIRC, this specific lung transplant center transplants the most lungs in the country during a year. I know they did 30+ last year. They are an amazing group of people and I have my 3rd evaluation appointment with them in March. Even though I'm not on the list, they like to have CF patients from WHMC on their "radar" a bit before transplantation so to avoid all the hangups that are commonplace as you become sicker.
<b>10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?</b>
Absolutely yes. I either call my social worker, the CF nurse, or the CF respiratory tech in case of emergency. I've called many times in an emergency and have been seen within an hour or two. Obviously, after hours can become a problem and it's something I'm going to bring up to the team the next time I see them because quite frankly, the ER is just too swamped. (WHMC is a Level 1 trauma center -- as is UHS and BAMC. 3 Level 1 Trauma centers in one city, we are spoiled! Also the fact that Lackland is the home for AF basic training means the ER is usually filled to the brim with "injured" airmen.)
<b>11. If applicable, have you talked to your center regarding pregnancy, and if so, how did they react to CFer's desires to be a mommy? (women only)</b>
Gonna have to plead ignorance on this one. <img src=""> Hope this helps!
I have been receiving treatment at Wilford Hall Medical Center (Lackland AFB), San Antonio, Texas, for the past 12 years. Started out on the peds floor and am now seen by the adult teams. I'm 25, btw. The care is absolutely phenomenal and the doctors are world renowned. The amount of CF studies conducted by our very own doctors is staggering and the clinic halls are lined with their work. My previous adult pulmonologist was recruited by NIH and is now developing state of the art treatments to combat Mycobacteria, etc. In fact, I was one of his guinea pigs. <img src=""> Infection control is good and adult patients are kept far, far away from the kiddos (who are on a separate floor). I can honestly say that in the the last 5 years, I've seen maybe 1 pediatric CF patient. While inpatient, all the CF patients are placed under mandatory "contact precautions" but that is mainly a protocol that Doctors/Nurses/Techs must follow. They wear gowns and masks when entering rooms.
<b>2. Did they allow you to do home health for clean outs or were you required to stay inpatient?</b>
It's entirely up to you. Some patients feel better staying inpatient, while others, myself included, leave for home health care after a few days. The home health care company (Corithian, IIRC..) that works in tandem with WHMC is amazing and they are great, great people.
<b>3. How was the air quality in the city you lived in?</b>
Allergies are a big problem in San Antonio; mountain cedar especially. As far as pollution is concerned, during the summer you can expect innumerable "Ozone alert days" which means that air quality is at an unacceptable level. We managed to stay under the federal limits last year, but the two previous years San Antonio was regularly above the limit. The humidity + pollution can really do a number on some folks.
<b>4. How did the weather affect your CF in the city you lived in?</b>
The worst aspect about San Antonio is the dramatic and sudden weather shifts which can as you probably imagine wreak havoc on a CF patient. For example, on Tuesday we hit a record high of 85 in the late afternoon only for it to snow (yes, snow) 6 hours later. During the winters, you can except temperatures to remain relatively mild with summers being scorching 'melt eggs on the pavement' fests.
<b>
5. How close did you live to the city with the CF center?
</b>
I'm 25 minutes away from WHMC.
<b>6. Was it a large center, i.e. over 150+ patients, or relatively small?
</b>
Relatively small contingent of around 30-40 patients. Mostly comprising of pediatric.
<b>7. Did they listen to you and include you in decision-making and treat you with respect?</b>
Every and all decision is made after deliberate and candid consultation. I seriously love the group here. Just last week at my follow up I had made some recommendations concerning future admissions and what could be done to shorter the stays and avoid static PFT results and the Doctors were all ears and enthusiastic about working with me on this new approach.
I cannot stress this enough but WHMC, even though it's a large hospital and has a relatively small group of CF patients, is basically your Castle while you are inpatient. The nurses love us and work around our schedules and the doctors are incredibly open to any ideas you have. The camaraderie between the floor nurses/techs and the hospital staff in general with us demanding CF patients is indescribable. In fact, it's not uncommon for nurses/doctors to trade emails with patients just to keep up to date on life's events.
<b>8. Did your center offer clinical trials?</b>
Very rarely. I've been a part of one study the entire time I've been coming here (TOBI) and never offered clinical trials again. However, like I said, the CF team is open to anything and everything. I asked about the e-flow a few months ago and whether or not it would be a prudent decision and the team decided to try it and see how it would pan out. Since then, my PFT results have been amazing and the doctors are now working to get every patient their very own e-flow.
<b>9. Did your center have a lung transplant center?</b>
The lung transplant center is about 10 miles down the road at a hospital called University Health System, a product of the University of Texas. When the CF team, along with the patient, feels its necessary to start the transplant evaluation, they'll send you over to UHS to get a complete work up. Both of the teams work great together and I've heard amazing stories about their success. I personally know a few patients who had transplants and within 3 days, we're climbing the stairs and 10 days, back at home. The turnaround after being placed on the list is astonishingly fast and IIRC, this specific lung transplant center transplants the most lungs in the country during a year. I know they did 30+ last year. They are an amazing group of people and I have my 3rd evaluation appointment with them in March. Even though I'm not on the list, they like to have CF patients from WHMC on their "radar" a bit before transplantation so to avoid all the hangups that are commonplace as you become sicker.
<b>10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?</b>
Absolutely yes. I either call my social worker, the CF nurse, or the CF respiratory tech in case of emergency. I've called many times in an emergency and have been seen within an hour or two. Obviously, after hours can become a problem and it's something I'm going to bring up to the team the next time I see them because quite frankly, the ER is just too swamped. (WHMC is a Level 1 trauma center -- as is UHS and BAMC. 3 Level 1 Trauma centers in one city, we are spoiled! Also the fact that Lackland is the home for AF basic training means the ER is usually filled to the brim with "injured" airmen.)
<b>11. If applicable, have you talked to your center regarding pregnancy, and if so, how did they react to CFer's desires to be a mommy? (women only)</b>
Gonna have to plead ignorance on this one. <img src=""> Hope this helps!