when rejected for transplant

[Jill]

@madonnarkaol-com

Can’t speak to overall criteria, but we just finished the transplant evaluation process at St Joseph and overall have been quite happy with them. At least so far, we don’t have a dedicated pulmonologist there. They work in a team so we direct questions to our transplant coordinator and she gets an answer for us or tells us who else wen need to contact, like the financial person or whom ever. So far it’s working. I don’t know after his transplant we’ll get assigned a pulmonologist or not, but I don’t think so. Maybe we do. Hope that helps.

[Madonna Kennedy]

thanks for you input. we shall see what we shall see

[David Ota]

I was evaluated by University of Colorado in Denver and Dignity St Joe’s in Phoenix in 2010-2015.  I do not know what the actual hard cutoffs are on either, but the Dignity program is known to take riskier patients.   A friend of ours was rejected at Duke University due to obesity, a prior heart attack and being too close to their age limit of 70.  He was accepted at the Dignity/St Joe’s Lung Transplant program and had a successful double lung transplant in 2016 at the age of 70.  He is struggling now after 5 years post transplant and a bout of Covid last year.  Another friend had COPD, was obese and diabetic, younger that 70.  He applied at Dignity/St Joe’s was rejected and applied at University of Colorado and was accepted.  He had a successful lung transplant in 2019 in Denver and is doing well.  If you are flexible in your location, one transplant centers rejection is another centers successful transplant.

[Madonna Kennedy]

such good information. thank you

[Allan Byron]

Hello folks,

I am currently 73 year s old and live in the SF nay area, I hope some pet can give me idea if I can still quality and where can I go for evaluation?

Allan Byron

[Christie Patient]

Hi @abyron888 definitely seek a referral to UCSF. They are top notch, and in your area.. lucky you! A number of factors contribute to whether you are eligible. It’s best to have a doctor evaluate you and get their opinion.

[Christie Patient]

Hi Madonna, I mentioned this in my message to you earlier, but just in case anyone else out there has similar questions… I can’t speak highly enough of UCSF. They do tend to take riskier patients there as well, and are the top hospital in the country as far as long-term success with lung transplants.

As far as age requirements, don’t be discouraged by the “age cutoff”. What is actually meant by that is that your physiological age is within healthy limits to be able to survive the transplant and thrive afterword. For example, someone age 70 who’s in fantastic shape, never smoked, no history of cancer, etc. might physiologically be more like age 60. On the flip side, someone age 60 who has a lot of coexisting conditions, history of smoking, diabetes, whatever… may be more physiologically like a 70 year old. There are many tests that doctors use to determine your physiological age and overall health, so don’t be scared off from trying because you think you are “too old”.

[john styles]

I was told I would need a double lung and liver transplant 3 years ago and the hospital did not do double transplants, on top of that I can not take the medication ( ofev, etc ). I immediately looked at alternatives as my dlco was real low 10.6.  I checked the home for all environmental issues, mold, radon, feathers. I started alternative treatments, my inflammation marker was real high but after doing laser it is normal. I also watch this website for news and noticed the the drug with marketing name nexium reduces scaring in lungs in mice, so I continue my nexium. Exercising the lungs and walking, today my dlco 3 years later is 10.5.  Hang in there and god bless and good luck.

[joe hick]

I’m in the exact same situation. I have to assume no one is going to do all two problems, and /i don’t mean at the same time. I guess I’m screwed.

[HerbC]

I’m 72.5 years old. Just today I met with the doctor who is the head of  lung transplant department at the University of Chicago Hospital IPF Institute. I was informed based on testing and my excellent  physical health that I would be a candidate for a transplant despite my age. U of C  Hospital has an absolute cut off age of 74 years based upon the current health of the transplant  recipient. I have under gone 37 different blood draws for risk factors (37 vials of blood) and over 25 different cat, heart scans, numerous x-rays, bone density, swallow, gastric, colonoscopy, endoscopy , dental exams, pft  etc. I can’t say enough regarding the staff at U of C Hospital. They are first class. Four months ago when I began testing the center  assigned (I have met individually with each) my transplant nurse coordinator, nutritionist, pharmacist, social worker, transplant surgeon, nurse practitioner and the Pulmonologist ( who has followed me since being diagnosed with IPF about  4 years ago).  Last week I met with the head of the surgical transplant team to go over transplant procedures and to answer any questions I had regarding the transplant. At each of the meetings with the doctors I had to have my at home post transplant team present. Still there are 2 more test they want to run. Tomorrow I have an appointment with the dermatologist.  I will receive the final determination after the transplant team has met to fully discuss my case and hopefully being placed on the transplant list in about a month. I’m encouraged hoping for the best. I’ll keep every one up to date.

Herb C

[Les Viegas]

Hi Madonna,
I replied to your email this afternoon with details for you to consider – not sure how frequently you access your emails so wanted to alert you via this post.

Les

[Dennis Rowe]

I second what Christi said about UCSF!
I was 72 in 2018 when I was accepted as a transplant candidate at UCSF.
When I went for my initial evaluation meeting with their staff, two of my grown children and my wife were with me.  UCSF is very cognizant of your support group, and I really feel having so many family members with me really helped with my candidacy at age 72.

In early March 2019 I received my double lung transplant!

Christie is 100% correct!!

[Christie Patient]

Hey @dennisr13 We must’ve been there at the same time! My mom’s tx date is March 15, 2019. Maybe we’ve been in support groups together. 🙂 Nice to see you ’round these parts.

[Dennis Rowe]

Christie,

We obviously were!  My transplant was March 9th 2019!

Dennis

[Jeff Taylor-Jackson]

Hi Herb C..

I am hoping you pass those last two tests.

Surely after all you have been through so far you will be accepted.

Please come back and let us all know.

I am in the UK, so I hope I might get a positive result on this. (Not applied yet, not ill enough apparently).

Kind regards

Jeff

[Allan Byron]

Hello Dennis,

Im 73 years old, and live in SF Bay area, who was the person you contacted for your transplant?  Any info you can provide will be appreciated. Thanks a lot

Allan Byron

[Marisa Beard]

So far I have been told by my transplant doctor that I won’t be considered for a transplant unless I lose 30+ pounds (these are the same 30 pounds I have gained since taking prednisone and CellCept). Next week I plan to go on a very restrictive diet to try and get some of the weight off (I haven’t been eating badly up until now so I guess I need to get pretty drastic). I see my transplant doctor in October so I hope to have some success of weight loss by then.