Visit to National Jewish Health in Denver, CO

@mtinderscott2626
I head there next week. On the NJH site I found a suite style hotel about one mile south where a “to and from” Lift voucher is provided for each day. The hotels listed on site provide a price break for NJH patients

I guess there is no perfect way. My friend will fly in with me and help me get settled. The first 4 days are the most scheduled but are also the period when I will acclimate to the altitude change. My friend will stay during those days.

@smtdoc Good luck with your appointment! If you have time, I would love to get an update on your trip and if you suggest staying at a different location, etc. I am also curious....I assume the first few days are for testing, and the latter part of the week is for reviewing. My husband can't come for 7 days. I am encouraging him to come to the last part to partake in the final results.

Can anyone comment on the best time for my husband to join me? I assume that from Wednesday to Tuesday will be testing, and then from Wednesday to Thursday, we will go over all the test results. So, I am thinking my husband would join me on Tuesday, Wednesday, & Thursday, and then we would go home on Friday.

My first appointment is Wednesday, 4/29, and I leave Denver on Friday, 5/9. Unfortunately, he can't stay with me the entire trip.

@mtinderscott2626 Hello from NJH! Well, actually we are in Colorado Springs over the weekend as the clinic is closed weekends. We flew in from Boston on Sunday, Feb 15 as they like you to arrive one day prior to your first visit, which was a blood draw at 4:30 on the 16. We could easily have made it if we had flown that day but I understand they want to account for travel delays. Tuesday was my first full day. It stated with a chest X Ray at 9:00 followed by a EKG and then my first meeting with my ID doc, Michelle Haas. If you have the chance do request her! After that I met with my patient ambassador. Next was an audio gram, then a vision test, then Oxygen titration and then meeting with my nurse. A very full first day. Wednesday started with a Chest CT, then Pulmonary Function Test, and then a sweat test. After that was a lesson on Airway Clearance and a sputum induction. The last appointment was with my nurse. (Always the same one). Thursday was a meeting with a GI doc. Even though I have no signs of reflux he suggested a GI minimally invasive procedure to place a device (BRAVO) on my essophogus for four days. I wear a little box on a lanyard around my neck which can detect any reflux or GERD. It was simple and quick and I can take the device off my neck and place it next to me. Easy. Back to Thursday next was another sputum induction, a PT Eval and OT Eval. I met with Dr Haas again who came into the room smiling saying “I have good news!”. My chest CT showed the nodule that was cavitating had closed up!!! The meds are working. There were some small areas of improvement for MAC but the rest was stable. For any of you who are hesitant about starting the Rx regime, I’ve had no difficulty on The Big Three and with those results I am very happy I started. Friday was the first day I met the pulmonologist. Dr Sarah Rhodes, loved her too. We discussed the results of my sweat test which showed slightly elevated levels for CF so she and Dr Hass suggested I do genetic testing for the CF gene. I did that. Dr Hass suggested I take all three antibiotics at once, I had spaced them out throughout the day, and that has been fine. Because of that, on Tuesday we will do two blood draws to check the levels at different times of the day and maybe some of the dosages will be changed. I met with my nurse and then at 3:00 had the BRAVO procedure with anesthesia. Monday morning at 8:00 I will have a Barium swallow test, followed by a meeting with Dr Haas, then my nurse and then meet with a NP in the department. I have declined a meeting with the nutritionist (I had a Zoom meeting with Michelle MacDonald who used to work at NJH when I started the antibiotic regimen). I also declined the visit with the Social worker. You start with a full schedule and they continue to add more so that is up to you. Dr Haas has scheduled a meeting with the respiratory therapist for me to be measured for a “wrap”. Similar to a percussion vest but smaller. Dr Rhodes has ordered an echocardiogram so if you go, check your schedule every morning as things change. I have to return the BRAVO equipment on Tuesday afternoon and my nurse is trying to have me finish up by then and we would be able to leave a day early to head home! In hindsight am I glad I came? 100%. I almost talked myself out of it but as I look back at all of my tests, I never could have gotten them done in such a short time. And knowing you are at The Best, there is no room for doubt or concern. We did learn that all docs at NJH are recruited. They are the best of the best. As far as staying here for at least a week, I know people have been very happy with Air B&B but we have discounts at Hilton products so we stayed at the Hampton Inn. It was nice that it was located between Whole Foods and Barnes and Noble. We had planned to Uber everyday. It was about $16 each way. And then we wanted to be able to have some nice dinners so double that. We ended up renting a car from Enterprise, walking distance to the hotel. The weekly rate (this week) is $172.16. Better choice! We found two restaurants we really like; Hillstone and Cherry Creek Grill. One more thing, NJH gave us a hospital room for three days. It had a desk and lounge chair a pull up chair and our out bathroom. There was a closet we could lock. It was a great place for my husband to do some work and a very nice amenity. I would do this all over again. Please let me know if I can answer any questions for you! Kris

@mtinderscott2626 Hello from NJH! Well, actually we are in Colorado Springs over the weekend as the clinic is closed weekends. We flew in from Boston on Sunday, Feb 15 as they like you to arrive one day prior to your first visit, which was a blood draw at 4:30 on the 16. We could easily have made it if we had flown that day but I understand they want to account for travel delays. Tuesday was my first full day. It stated with a chest X Ray at 9:00 followed by a EKG and then my first meeting with my ID doc, Michelle Haas. If you have the chance do request her! After that I met with my patient ambassador. Next was an audio gram, then a vision test, then Oxygen titration and then meeting with my nurse. A very full first day. Wednesday started with a Chest CT, then Pulmonary Function Test, and then a sweat test. After that was a lesson on Airway Clearance and a sputum induction. The last appointment was with my nurse. (Always the same one). Thursday was a meeting with a GI doc. Even though I have no signs of reflux he suggested a GI minimally invasive procedure to place a device (BRAVO) on my essophogus for four days. I wear a little box on a lanyard around my neck which can detect any reflux or GERD. It was simple and quick and I can take the device off my neck and place it next to me. Easy. Back to Thursday next was another sputum induction, a PT Eval and OT Eval. I met with Dr Haas again who came into the room smiling saying “I have good news!”. My chest CT showed the nodule that was cavitating had closed up!!! The meds are working. There were some small areas of improvement for MAC but the rest was stable. For any of you who are hesitant about starting the Rx regime, I’ve had no difficulty on The Big Three and with those results I am very happy I started. Friday was the first day I met the pulmonologist. Dr Sarah Rhodes, loved her too. We discussed the results of my sweat test which showed slightly elevated levels for CF so she and Dr Hass suggested I do genetic testing for the CF gene. I did that. Dr Hass suggested I take all three antibiotics at once, I had spaced them out throughout the day, and that has been fine. Because of that, on Tuesday we will do two blood draws to check the levels at different times of the day and maybe some of the dosages will be changed. I met with my nurse and then at 3:00 had the BRAVO procedure with anesthesia. Monday morning at 8:00 I will have a Barium swallow test, followed by a meeting with Dr Haas, then my nurse and then meet with a NP in the department. I have declined a meeting with the nutritionist (I had a Zoom meeting with Michelle MacDonald who used to work at NJH when I started the antibiotic regimen). I also declined the visit with the Social worker. You start with a full schedule and they continue to add more so that is up to you. Dr Haas has scheduled a meeting with the respiratory therapist for me to be measured for a “wrap”. Similar to a percussion vest but smaller. Dr Rhodes has ordered an echocardiogram so if you go, check your schedule every morning as things change. I have to return the BRAVO equipment on Tuesday afternoon and my nurse is trying to have me finish up by then and we would be able to leave a day early to head home! In hindsight am I glad I came? 100%. I almost talked myself out of it but as I look back at all of my tests, I never could have gotten them done in such a short time. And knowing you are at The Best, there is no room for doubt or concern. We did learn that all docs at NJH are recruited. They are the best of the best. As far as staying here for at least a week, I know people have been very happy with Air B&B but we have discounts at Hilton products so we stayed at the Hampton Inn. It was nice that it was located between Whole Foods and Barnes and Noble. We had planned to Uber everyday. It was about $16 each way. And then we wanted to be able to have some nice dinners so double that. We ended up renting a car from Enterprise, walking distance to the hotel. The weekly rate (this week) is $172.16. Better choice! We found two restaurants we really like; Hillstone and Cherry Creek Grill. One more thing, NJH gave us a hospital room for three days. It had a desk and lounge chair a pull up chair and our out bathroom. There was a closet we could lock. It was a great place for my husband to do some work and a very nice amenity. I would do this all over again. Please let me know if I can answer any questions for you! Kris

@mtinderscott2626 Hello from NJH! Well, actually we are in Colorado Springs over the weekend as the clinic is closed weekends. We flew in from Boston on Sunday, Feb 15 as they like you to arrive one day prior to your first visit, which was a blood draw at 4:30 on the 16. We could easily have made it if we had flown that day but I understand they want to account for travel delays. Tuesday was my first full day. It stated with a chest X Ray at 9:00 followed by a EKG and then my first meeting with my ID doc, Michelle Haas. If you have the chance do request her! After that I met with my patient ambassador. Next was an audio gram, then a vision test, then Oxygen titration and then meeting with my nurse. A very full first day. Wednesday started with a Chest CT, then Pulmonary Function Test, and then a sweat test. After that was a lesson on Airway Clearance and a sputum induction. The last appointment was with my nurse. (Always the same one). Thursday was a meeting with a GI doc. Even though I have no signs of reflux he suggested a GI minimally invasive procedure to place a device (BRAVO) on my essophogus for four days. I wear a little box on a lanyard around my neck which can detect any reflux or GERD. It was simple and quick and I can take the device off my neck and place it next to me. Easy. Back to Thursday next was another sputum induction, a PT Eval and OT Eval. I met with Dr Haas again who came into the room smiling saying “I have good news!”. My chest CT showed the nodule that was cavitating had closed up!!! The meds are working. There were some small areas of improvement for MAC but the rest was stable. For any of you who are hesitant about starting the Rx regime, I’ve had no difficulty on The Big Three and with those results I am very happy I started. Friday was the first day I met the pulmonologist. Dr Sarah Rhodes, loved her too. We discussed the results of my sweat test which showed slightly elevated levels for CF so she and Dr Hass suggested I do genetic testing for the CF gene. I did that. Dr Hass suggested I take all three antibiotics at once, I had spaced them out throughout the day, and that has been fine. Because of that, on Tuesday we will do two blood draws to check the levels at different times of the day and maybe some of the dosages will be changed. I met with my nurse and then at 3:00 had the BRAVO procedure with anesthesia. Monday morning at 8:00 I will have a Barium swallow test, followed by a meeting with Dr Haas, then my nurse and then meet with a NP in the department. I have declined a meeting with the nutritionist (I had a Zoom meeting with Michelle MacDonald who used to work at NJH when I started the antibiotic regimen). I also declined the visit with the Social worker. You start with a full schedule and they continue to add more so that is up to you. Dr Haas has scheduled a meeting with the respiratory therapist for me to be measured for a “wrap”. Similar to a percussion vest but smaller. Dr Rhodes has ordered an echocardiogram so if you go, check your schedule every morning as things change. I have to return the BRAVO equipment on Tuesday afternoon and my nurse is trying to have me finish up by then and we would be able to leave a day early to head home! In hindsight am I glad I came? 100%. I almost talked myself out of it but as I look back at all of my tests, I never could have gotten them done in such a short time. And knowing you are at The Best, there is no room for doubt or concern. We did learn that all docs at NJH are recruited. They are the best of the best. As far as staying here for at least a week, I know people have been very happy with Air B&B but we have discounts at Hilton products so we stayed at the Hampton Inn. It was nice that it was located between Whole Foods and Barnes and Noble. We had planned to Uber everyday. It was about $16 each way. And then we wanted to be able to have some nice dinners so double that. We ended up renting a car from Enterprise, walking distance to the hotel. The weekly rate (this week) is $172.16. Better choice! We found two restaurants we really like; Hillstone and Cherry Creek Grill. One more thing, NJH gave us a hospital room for three days. It had a desk and lounge chair a pull up chair and our out bathroom. There was a closet we could lock. It was a great place for my husband to do some work and a very nice amenity. I would do this all over again. Please let me know if I can answer any questions for you! Kris

@kris2468 Happy to hear that you received good news during your trip 🙂 Thank you for sharing your experience at NJH! The detailed insight into the process is so very helpful. It takes the guesswork out of planning. Did they set up a return visit, or is that not typically necessary for every patient? In the future, will you work solely with the NJH doctors, or will you have local specialists that NJH collaborates with for your care?