Air Ambulance/Jet to transplant center -- anyone done this?

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kittencaitlin

New member
Hi,

I am currently about to be listed for tx at UPMC but I live in Boston. I have almost finished my evaluation and expect to be active on the list within a week or so. We have set up air ambulance with Angel MedFlight but we have to have "backups" in the unlikely case that they can't get there. I have 4 hours to get from Boston-->Pittsburgh. Pittsburgh is 1:20 away, but no company can 110% guarantee something, so backups are necessary.

We are calling places (my mom is helping me) and are getting a handle on it, but I was just wondering if any of you out there had done this too. Who did you use? Was the process streamlined? Any tips? What was it like when you actually got the call and went on the plane? I actually did an air ambulance transfer from Brigham and Women's in Boston to UPMC in March -- but it was not time sensitive, i was just being transferred via airplane because i was inpatient and needed to go there for testing. So I do know what the planes are like, etc., I am just more curious about how it all happens when the clock is ticking..

thanks!

Caitlin
 
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Liza

New member
Hi Caitlin, We set up a private charter jet as a back up for our daughter when she was double listed. Although our insurance was going to cover an air ambulance from her town, we needed to have one set up in the even she was called while we waited for the insurance co. to approve the flight, she was visiting us here at home in TX or if they weren't able to get to her in the allotted time. The air ambulance was going to be coming from another state. She was in NE and we live in N.TX. I will say, we had to have an open credit card because the cost was going to be approx. $13,000. The two we had set up (the one in N. TX and the one in NE) will not be of any help to you but how I found them might. They were private jet/ Charter companies. I search for private jet charters for the airports I was looking at, for us it was Eppley in Omaha, Lincoln Airport in Lincoln and then airports close to us in Texas. Then I contacted each company telling them what I was in need of and if they provided such service. My daughter did not need air ambulance services at that time. Her oxygen concentrator was a portable one approved for airline use. We never had to use the charter service as we relocated just before winter set in because we were not comfortable with the possible delays that could occur due to winter weather. I hope this is of some help on where you can search for charter flights. I asked how quick a pilot could be contacted and the length of time from the initial call to take off. Much luck to you in your search and I pray you have a short wait.
 
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kittencaitlin

New member
Liza thank you so much for responding. I see your tag also and my heart goes out to you today and everyday. I hope your daughter Rachel is doing well.

The air ambulance is like the one you described - technically based out of state. They said they have other companies they call, and we have another air ambulance back up. I am paranoid though and want to be totally safe. I just found out I am being actively listed today - wow - so need to get this set. Thanks for your input, it was really helpful.
 
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musclemania70

New member
I was taken by ambulance going 90 miles/hr in the middle of a snow storm for what should have been a 3 hour drive to UPMC (i wasn't listed yet, just really sick and needing morphine for pain).
Do ambulances only do this if its an emergency? why couldn't an ambulance take you? I guess i don't know much about this.
 
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athletixbc

New member
I did this when I went for my transplant. I was in ICU in one hospital in Vancouver, and one morning they scooped me up and flew me to Toronto on an air ambulance. Arrived in Toronto, immediately was sent for x-rays and blood work, and then was sent to a special transplant ward to wait until the operating room was ready and the donor lungs had been properly washed and evaluated. The total process from the call for the air ambulance to transplant starting was about 7.25 hours.
 
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cftransplant

New member
How does UPMC feel about this?
Have you talked to UPMC about a "dry run"? I and others have had these. I know of a liver TX that flew for a while to a center, to head home without a TX.
Airports and Airspace close at times.
I had visits to the clinic prior to the TX. Even had a couple of days in the hospital at my TX center.
Many centers require PT prior and post TX, how about UPMC?
Will your care giver have an apartment for you prior to your TX, or will they have this task while you are in the hospital (very tough for the care giver). Perhaps you plan on recovering in a hotel?
You have had an air ambulance trip already, how does your insurance view this?
Hope you get your chance soon.

CF TX 63 cepacia 14 years out
 
K

kittencaitlin

New member
musclemania - i live in boston, so a car ambulance would not get me there in time.

cftransplant - i actually did get transferred via schedule air ambulance from boston to pitt in march, to complete my eval. i spent about 8 days inpatient at UPMC. that was as close to a 'dry run' as we're going to get. but like i said, that was schedule. the call from tx is not. and we cannot dry run a spur of the moment call, because of costs obviously.
insurance covers the air ambulances.

mostly my question is have there been people who've lived about as far away from their center as i am to pittsburgh (1:20 minutes flight time, 10 hours driving), who've managed to get there via plane (using air ambulances/charters), in the allotted time (4 hours). all plane companies say it is doable, definitely, but crunch time. my dr at upmc seems to think it is ok. in the end however, i am completely responsible for getting to pittsburgh, and my decision to continue to live in boston is my own. UPMC does not help me set up transport.

yes to answer your other questions - we will be having an apt in pitt post-tx. do you mean PT - physical therapy? i am doing pulm rehab on my own accord right now, UPMC does not require it for a patient my age (30). but i feel it will be useful.

thanks everyone for your responses. will welcome any more info from "fliers" !
 
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bookperson

Guest
If you don't mind, may I ask why you aren't being transplanted in Boston?
 
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kittencaitlin

New member
bookperson - of course i dont mind. i have cepacia (cenocepacia), and right now UPMC is the only center that will tx someone with that form of cepacia. it does seem odd to be leaving a great medical city of boston, but pitt is a great place! i am hopeful.
 
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Liza

New member
Caitlin, in case you didn't' know, "dry run" in transplant (tx) terms, means that the tx was not a go for what ever reason. I think what cftransplant was getting at was the cost of a charter or air ambulance and insurance in the event that you got your call, you get half way there, all the way there, checked in etc and then the lungs are not viable for what ever reason. Most patients don't get as far as being put under only to wake up and the tx didn't happen, but it has happened. Most "dry runs" happen and the patient finds out within a couple of hours of arrival at the hospital. My daughter did not have a dry run while waiting for her first tx and had one while waiting for her second. When she was in the evaluation process the first time, Stanford required patients to be in the area and had to be able to get to the hospital within 6 hrs of "the call". They said they required people to be in the area because many insurance comapanies will only pay for one air transport and if it's not a go, then how are they going to get there? That may be why cftransplant mentioned dry runs. When I read your response I thought maybe you thought he meant a practice run. I hope you find all the info you need, and a good charter company. My prayers for a short wait, an uneventful transplant and a smooth recovery.
 
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kittencaitlin

New member
Liza - thank you! I did think he meant a practice run haha. So cftransplant, I guess that is what you meant! Well most of the charters (almost all) have said that it is not a problem if that happens. That they will fly us back. I need to speak with the insurance companies though. I think at some point we will be evaluating whether or not a move to pittsburgh is what we will do. Perhaps if one dry run happened.... I do know they happen quite often. Meanwhile, I am glad to be listed ASAP.

thank you for your response and info!
 
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cftransplant

New member
PT and pulmonary rehab in my mind are the same thing. Duke has the center for living (gym). The gym is not an option, pre and post TX. Post TX is at least 23 sessions, most are 3-4 hours a day. Some spend months in the gym. They feel you need to build yourself up for the TX and certainly after. Today walked at over 4,200 feet elevation, yesterday up a steep ridge at around 3,000 feet. Exercise is not an option, studies show that using the lungs certainly helps post TX.

I knew someone in the gym with 5 dry runs. I had one, a friend had zero. When they call, if you decline to show up, at the center I went to, your off the list (very bad idea).

As I said, I know allot about flying. Father and brother both airline pilots. Years ago (when I could keep a medical, I was a private pilot). Airspace and airports do close. Remember the three days nothing flew but military? If someone flies into Boston for golf, you may not get out or into Pit.

I know you want to stay in Boston, move for a chance to live. I certainly did not want to move east with three German sheps in the summer in the south, but in retrospect 14 years was worth the move. Had it not worked, I would have been rather angry living in an area for my final days that was not, nor will ever be home._

CF TX cepacia 63
 
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musclemania70

New member
You may want to seriously consider living in Pitt until you get your lungs. It seems like an awful stressful situation to have to depend on someone else to get you there in time to save your life. I know it may be costly to live there but i think the assurance you would feel being close to the hospital would be worth it. There is A LOT of reduced priced housing in the area. There are apartments (i think Amber stayed in one) and there are also 'community homes' that have hugely discounted rates for patients who are waiting for transplants. That place is called FAMILY HOUSE. They have a community kitchen where you can make meals on your own so you don't have to eat at restaurants.

You may want to research it. it may end up costing less to stay close to the hospital than flying until you get the call. The social worker at the hospital should have info on more housing options for you too. Our insurance also gave us a stipend to use for housing, food, and related costs to our stay. you may want to check with your insurance if its private insurance.

If UPMC is one of the only centers that would treat you, i wouldn't take the chance of relying on someone else to get you to the hospital in time. Plus, with all the crazy UNPREDICTABLE WEATHER going on all the time, why have more uncertainty?
 
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bookperson

Guest
kittencaitlin said:
bookperson - of course i dont mind. i have cepacia (cenocepacia), and right now UPMC is the only center that will tx someone with that form of cepacia. it does seem odd to be leaving a great medical city of boston, but pitt is a great place! i am hopeful.
Click to expand...

That makes sense. I know they have good medical facilities in New England, but I was unaware of the b. cepacia restrictions. I'm glad Pitt is still willing to work with cepacia patients. It seems like a very good center from everything I have read here. I live in the Cleveland area, so when my transplant time comes I will be choosing between Cleveland Clinic and Pitt.
 
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kittencaitlin

New member
thanks for everyone's input. we did seriously consider staying in pittsburgh. in fact, when i was transferred there from the brigham in february to finish my evaluation, we didn't know at that point if we'd even be returning to boston. we were essentially told by the team and my pulm there to "go on home and wait." they were 110% fine with it, and it seemed they have lots of people who do it.

since beginning the process of securing flights i have of course had second thoughts. ive read about people who have done it now both easily and with difficulty. like you all have mentioned, you just never know when that call might come and what the circumstances might be within the city/time of day/weather etc. Right now we are staying here and keeping an open mind about the move. The pro of the move is that i can be called as a backup if i live there. we are aware of all the options and getting an apartment isnt a problem, we actually already have one lined up for the post tx stay, whenever that happens

thanks for all of your kind advice
 
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daniela.l

Guest
I'm a new CF'er to this site but I just wanted you guys to know that I have a blog about my transplant journey. I would appreciate it if you would check it out as I barely made it :)
catchingyourbreaths.wordpress.com

-Daniela, 18
delta F508
 
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