NJH Patients

You got the 2 best, Dr. Griffith and Dr. Kasperbauer. If I ever go back to NJH I will insist on them (or Dr Dailey of course). Record transfer is quite a pain, especially the images on disk. Start early on them.

When I went to NJH in 2011, I rented an apartment for the two week period. I then made arrangements with a car service (which would probably be Uber today) to pick me up at a certain time each morning so I would arrive at 8 am and then return to NJH to pick me up a little after 5. I didn't have devices to sterilize at the time so I'm unsure how one handles that unless you're staying at a hotel that has a microwave. I have a different doctor than you but from what I understand (and I still make twice yearly trips from far away), the doctors you have are excellent. They will communicate with your pulmonologist or ID doctor. You will have a patient portal (if you don't already) and can contact the ID nurse through it when you return home and have questions.

When I arrived I was assigned a room. I was to be in that room at all times during the day so I would be readily available for whatever doc/resp therapist/etc wanted me. It was reverse-isolation room with an annoying fan but really no biggie. I shared the room with a wonderful woman I became long-distance friends with. At that time, I received a schedule of my daily tests/appts. Since it was determined that we would "watch and wait," no treatment was started so I had a lot of time on my hands. I often informed the nurses that I was going to sit outside on a bench if they wanted me. I didn't see my doctor every day but frequently...often enough to feel cared for.

I wore comfortable clothing (easy in and out for tests) and comfortable shoes (lots of walking here and there). I took books (no Kindle at that time) and some needlework. Since I didn't feel sick, it was hard to lie around all day (which is why I went outside).

I tried the Big 3 twice and couldn't tolerate the side effects. I do breathing treatments 3-4 times a week. The hypertonic saline solution contributes to chronic sinusitis and a chronic sore throat so I do the best I can.

I'm 71, still fast walking 3 miles a day, and don't need to use oxygen. I've had some scary episodes of hemoptysis and some cavitary nodules, that have come and gone, and the suggestion that the middle lobe of my right lung be removed (which might or might not be the source of hemoptysis), so I've not breezed through the past 12 years, but until Covid I managed to have a pretty decent quality of life. I've not had Covid but that's because I continue to avoid groups, don't go out much of anywhere except the grocery and gardening centers, and still wear a mask (even if I get nasty looks.)

I hope something I've shared has been helpful. I didn't know what to expect when I got there - and by this time things have probably changed a lot - but at least you might have a little idea of what to expect.

Blessings as you journey onward!

Best practice medicine would be a referal to a respitory therapist as soon as you get this diagnosis. Feel I'm trying to learn Chinese by braile in figuring out use of nebulizer, aerobika, airway clearance and proper sterilization techniques for all. Just diagnosed with Pseudomonas Oryzihabitans, I'm like what the hell did I do to get this on top of mycrobacterium lentiflavin...JNH in Dec.

I live in Jacksonville, Florida and there are noe respiratory therapists in Jax or the Orlando area.
I understand what you are saying as far as learning the whole process yourself. I have met other people with this disease and we each learn things and share with each other.
I go to the Mayo Clinic here in Jax and there is one respiratory therapist here that just tells you over a zoom meeting, what to buy and in what order to use it. As far as how to use it, there is no instruction.
One of our group here in Jax went to NJH in September and had a very positive experience. She shared some tips with the rest of the group. Good luck with at NJH. I am sure you will come away with some good information.

I know what you mean! I was told to nebulize albuterol and 7% saline when first diagnosed. I had never used a nebulizer in my life. I watched YouTube videos about using the nebulizer. I had to guess that I would probably use the albuterol first and then the saline. Months later, I joined a support group online (through NTMir), and then I learned that I needed to be sterilizing my nebulizer cup by boiling for 10 minutes, not just washing it in soapy water. They were also the ones who told me to get and use an Aerobika.

Hello Rick, I understood I need to bring hard copies of my Ct scans. Did your doctor transfer your Ct images? I received the packet from NJH yesterday and it says to bring all records with me. Let me know how you transferred your CT chest images. I am not very tech wise

I had to personally visit UCHealth and fill out forms for hipaa and request all images on cd/dvd.
I also too printed copies of every visit note and test result. Record transfers are one of NJH weaker points. This took over a week to get them and I hand carried them to NJH only to have Dr E complain to me he could not read them in the office and had to make the long trip (down the hall) to radiology where they could read them. One of the reasons NJH likes to duplicate every test you had prior so make sure your insurance is covering NJH 100% because their charges are about 4 times higher than a regular hospital.

Sallyb, How are the pulminologist's in Jax? I am relocating to the panhandle. I stopped NJH earlier this year.

There is one respiratory therapist is Jax at Mayo and she only does a zoom meeting to tell you the equipment to buy and brief instruction on how to use an Aerobika.
The rest you have to figure out yourself.

We are staying at the Hilton Hampton Inn , 4150 East Kentucky Avenue in Denver. Nice hotel and a discount for those seen at NJH. There is an altitude difference here which affected my breathing and it is cold! It was 15 and snowing on Sunday. I purchased bags for sterilizing our devices in a microwave. I have a frig and microwave in my room. I traveled here from FL so I know what you are experiencing. Just an FYI - The hotel is close to NJH and we told they are booked solid. I wouldn’t wait to book your room if you decide on the Hampton Inn.