Brigham and Womens transplant program

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anonymous

New member
Vicki-
They told him, with no guarantees obviously, that they don't expect him to have to wait longer than a year. They also told us almost everyone gets at least one false alarm call (either they get there and the lungs are not useable or you are the back-up). Mike is healthy and in good shape except for his lungs which are crap. He told the doctor he didn't want to wait until he was extremely sick to be at the top of the list and the doctor (who was the head of the transplant team) said they don't wait until youa re on your death bed, it's just a matter of watiting for good lungs. At his last visit to Brigham in March, Mike asked where he was on the list and the dr (again, the head of the team) pulled up the list on the computer and said it looked like there were 2 people ahead of him on the list that matched his blood type and size. They do about 1 or 2 transplants a month on average, depending on donors. The only thing is, if someone VERY sick gets on the list, they might jump ahead of him.
Hope this helps!
 
G

gsplover

New member
Vicki,

I did the gene therapy trial with Dr, Lapey. He also tried to get me to join the CF team that was running in the Boston Marithon but I never did. He is a pretty awesome guy.
 
A

Allie

New member
IT goes like this with most common types.....

O+ 37%

O- 6%

A+ 34%

A- 6%

B+ 10%

B- 2%

AB+ 4%

AB- 1%

I'm A+, Ry, of course, could not ever be normal, and was AB-.
 
A

anonymous

New member
For Amy:
After a clinic visit to hear about the program (probably back in Feb or March) the coordinator put together a schedule for me of tests/procedures/consultations which I received in the mail for the following month. The tests started in mid-to late April and finished on May 24th--they were spread out over this period of time. Was probably at the Brigham 4 days total over this time period w/tests lasting from 7am/8am til 2pm or 3pm. The days were long and sometimes I couldn't eat/drink for hours due to certain tests. I advise bringing a relative or friend for company and for driving since you may be exhausted by the day's end. Also keep in mind that the day can grow longer if doctors are running late etc.
Anyway, found out this week that I was accepted so the total time from start to finish was about 3 months. They tell you pretty quickly after you finish the testing--at least in my case they did.
In terms of body type--I've heard from post-transplant patients that the smaller you are the more likely you may need a child's or teenager's lungs and thus you'll be waiting longer, but the Brigham has never confirmed that to me.
And interestingly, when my husband mentioned my blood type being more rare to the surgeon (A-) he disagreed, though it seems others on this site also think it's less common. I don't know. Maybe we could get some help w/this stuff as it's still very confusing to me, too!!!!

-Vicki
 
G

gsplover

New member
A person with type A blood can donate blood to a person with type A or type AB. A person with type B blood can donate blood to a person with type B or type AB. A person with type AB blood can donate blood to a person with type AB only. A person with type O blood can donate to anyone.

A person with type A blood can receive blood from a person with type A or type O. A person with type B blood can receive blood from a person with type B or type O. A person with type AB blood can receive blood from anyone. A person with type O blood can receive blood from a person with type O.

Because of these patterns, a person with type O blood is said to be a universal donor. A person with type AB blood is said to be a universal receiver. In general, however, it is still best to mix blood of matching types and Rh factors.

This is the information I found about what blood types can be donated to each other. I am assuming the if you are negative then you must have negative blood and if you are positive then you must get postive blood. But I am not positive on that.

I am curious with organs if someone with O blood can give an organ to someone one with A blood. Or if with organs it must be a perfect match.
 
A

AmyKins

New member
thanks for all the info Vicki- Im getting nervous because Im so scared by the time I finish all the process it will be "too late", but I know thats all in my head. I have to just keep taking real good care of myself. My CF doc told me that I would prob. be put towards the top because I am on oxygen 24-7 & I sleep with a bi-pap on. I don't know how true that is. I really hope I start the process soon- thanks for all the info Vicki. Also, you don't think they would let you do any tests at my home hospital do you?
 
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anonymous

New member
Amy,

You could ask about the tests, but I doubt it. I think all tests have to be done at the Brigham. If your hospital is under "Partners Healthcare"--meaning Partners owns it (it owns the Brigham, Faulkner, MGH etc) then maybe they'd let you since the computer database is all the same and they could view all your test results, but I'm not sure. Highly doubt they'd let you have tests done elsewhere otherwise, but ask.

Also, I definitely think you'll move quickly up the list. My PFTs are in the high 20's, but my O2 stat stays btw 95-98 and I don't use oxygen (though I often feel like I could use it) so I'm sure I'll probably be on the list for awhile.

I don't know what a bi-pap is???

-Vicki
 
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AmyKins

New member
Hey Vicki- I finally got my app.- Im going July 5. A bi-pap is a machine that forces air into my lungs (I have to wear a mask) to keep my airways open and allows me to breath better when I sleep- its like being in a wind tunnel. People with sleep apneia use them too.
 
J

Jane

Digital opinion leader
Amy, this might be what you're looking for?


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