advice/help

hello friends. looking to get some feedback on something i've been wondering about anything would be great. Im a 22 year old cystic fibrosis patient awaiting a double lung transplant at brigham and womens hospital in Boston Mass. Because of my rare blood type (ab). The Brigham has adviced me to become dualy listed. So the process of trying to become listed at Cleveland clinic are in the works. after doing some research on the hospital i became aware that they will provide transportation for those that will recieve there 2nd chance at life (gift). the only thing is that finianially it is going to be tough getting myself there. and unlike my local transplant center being convieneint i cant afford to bring alot of people with me to help me carry oxygen tanks and meds. any advice on a possible way to start something for donations. or some kind of service to help me with this particular issue im having. hope to hear something from someone soon. thankyou for you time.

0 members like this

Replies to This Discussion

Permalink Reply by Kathleen on July 6, 2012 at 3:55pm

Hi Steven: I have heard some people do fundraising on the Internetfor tx purposes....guess you could also do something locally in your community throught your church if you attend one or even at another church if you don't. I know at my hospital they have a house where family members can stay for lower cost than a hotel. I wish you good luck and hope you get your call soon.

Permalink Reply by Hostess Risé on July 6, 2012 at 4:23pm

Hi Steven

Remember when we were chatting last week I mentioned COTA http://www.cota.org

Let me know when you are signed up with them. OK

Permalink Reply by Mark on July 6, 2012 at 5:21pm

Steven, in addition to the other tips this organization appears ready to help with transportation needs:

American Organ Transplant Association
http://www.aotaonline.org/transportation.html
When a patient requests travel between two cities, AOTA requests a letter from the transplant coordinator or social worker verifying the need as well as completion of our transportation form. Once this letter is received, AOTA is able to book the patient's travel round trip on Greyhound. We recommend, however, to have the social worker contact us directly for the fastest service.

Permalink Reply by David on July 7, 2012 at 6:51am

Hi Steven, Am from Central NY and I also had Dual Status in NY and at the cleveland clinic, which is where I did tnplnt. The Cleveland Clinic has a deal set up with a hotel across the street from the hospital, all rooms have 2 queen sized beds small fridge,coffee maker, microwave, plus they offer shuttle service to all parts of the hospital and i belive a few other hotels, For me I had a heart tx, which required me to stay in cleveland for 4 weeks after txplnt because of the weekly biopys, yes they will fly you in with 1 other person I belive, not quite sure you probaly have to ask on that, but as far as people visiting or coming there to help, I found that if you look at the Suburbs on Cleveland 10 to 15 mins from the hospital, lots of resturants, and much more affordable hotels, as far as food, belive it or not the Cleveland clinics Cafeteria food is probaly the BEST hospital food I have ever had . Hugh selections , but I had after 6 months transferred my care back to NY to my origional Tx cntr. mainly because of the travel time. Cleveland Clinic is A GREAT cntr, as am sure the places near you are as well, hope this helps some..

Permalink Reply by Hostess Risé on July 8, 2012 at 8:41am

thanks for the support. I am lucky to say that we have a Cleveland Clinic ten minutes from my home.

CC is a great place!

Permalink Reply by cindy on July 7, 2012 at 7:47am

You could check into angel flight there is 1-800352-4256 I spoke to a Ken Gorden they will sometimes help in this way Iknow its a 800 number but they can set you up with your local I live in florida there a really great bunch of piolet good luck

Permalink Reply by Hostess Risé on July 8, 2012 at 8:39am

Thank you CINDY! xoxo

Permalink Reply by cindy on July 8, 2012 at 2:00pm

hi Hostess Rise your welcome I wish I could tell him how to raise money but thats not as easy but the best way I would say is do they have a restruant or his old highschool ask to put up flyers and a donitions lockbox with a hole for people to give and if he uses the computer social networks the post on those I dont know if it allowed when I do that it seems to disapear so you might have to get permission or set up your own web page well I guess I did have a few Ideals awe the mind she works in mystiers way SMILE LAUGH LIVE GOOD CINDY J

Permalink Reply by DebbieK on July 10, 2012 at 7:30am

As far as your O2 goes, I would recommend getting a portable oxygen concentrator for travel and you can also use it at home. Usually your oxygen provider will provide one for you if you are awaiting transplant. Make sure you have enough batteries plus 2 hours to get to your destination. I had to rent a second battery as I was originally going to have my transplant at CC and it is 1000 miles from New Orleans.

Permalink Reply by Leo on August 17, 2012 at 7:39pm

I had an O2 company that had offices through out the country. I had my O2 delivered in Fl, Ga, Tn, Me, Ma, Az, and other states. 6 Mos out my wife and I took an 11,000 Mi trip. Good luck and God bless.

Permalink Reply by Hostess Risé on July 13, 2012 at 5:39pm

Hi Stevie

Did you sign up with COTA?

Permalink Reply by DebbieK on August 10, 2012 at 6:57pm

They allow you to bring one person with you on your flight and there will be help to load and unload your belongings. CC also has a low cost guest house at their hotel for you and a caretaker. I would not recommend trying to bring a lot of people. Too costly and unnecessary and tiring. Discuss all this with the social worker when you go for your appointment. She can help you a lot. They have tanks and wheelcchairs available for your use at the hospital(inpatient and outpatient vivts) at no charge so you can save tour own tanks.