Husband with CF, declining health,lungs functioning at less than 20%,what can be done

[Shelby Delacruz]

The docs came in and told me his alcaligene that knocked him off the transplant list is xyloxidans. It's resistant to every antibiotic known to man so far, and everything that's been tested with his sputum culture has came back resistant, so they won't give him any antibiotics other than the one he's on now.

And when he's done with this round, they're giving up and sending him home even in this really bad state of health.

 

[longtimer]

Well I guess everyone has a different approach. Even if I have someone who on paper is resistent to all antibiotics, I go to two others and at least give them a try. I have seen the Cayston nebs work wonders and also po Linezolid where the MRSA got better and the alcaligenes did not have as bad an effect. Is he on Colistin nebs during his off month?
I would still call the transplant centers, send them a paper copy of the sputum and sensitivity and let them decide. Frequently in our lab we test other antib or get different results.
If you can go to San Diego, they have a transplant center and dr doug conrad is excellent. I would also run it by stanford and ucsf.
Although rare and they do not prefer to do it, UCSF has transplanted CFers who were already on ventilators.
I forgot, I think U of Colorado also does transplants.

 

[Gentrygirl]

The docs came in and told me his alcaligene that knocked him off the transplant list is xyloxidans. It's resistant to every antibiotic known to man so far, and everything that's been tested with his sputum culture has came back resistant, so they won't give him any antibiotics other than the one he's on now.

And when he's done with this round, they're giving up and sending him home even in this really bad state of health.

I would say that now, having the specific information about transplant, is the BEST time to start calling other transplant centers. He needs your strength to advocate for him. You may not get the answers you want, but you don't want to look back and regret not having called. Best of luck to you both!

 

[azdesertrat]

Shelby, I wanted to thank you for standing with your husband in his time of trial.
Everybody afflicted with this disease should be so lucky to have a person like you in his/her life.
I've been blessed with my 'Personal Angel'.
My Wife has been with me through everything for almost 21 years.
She knew me before my health started to decline.
When I started going downhill, she just sucked it up & kept on truckin'.
She was my advocate when I was in a medically induced coma for 3 weeks. She's cared for me after I've been released from the hospital many, many times.
When I went in for transplant, she slept on a 'shelf' in my hospital room for 3 weeks!
That has happened more times than I care to remember. If not for her, I wouldn't be typing these words now.
So, thank you Shelby. I hope your husband knows what he has in you & I hope he appreciates you like I appreciate my Wife.
Best of luck to you both, you're in our prayers.(FART2)

 

[CyrilCrodius]

I have read that having any kind of multi-drug resistant bacteria will be a no go for a transplant, since it means that there is nothing they will be able to give to fight the infection if it comes up after the transplant. So my bet is that they are taking issue with the multi-drug resistant pseudomonas.

 

[epicurus]

Hi Shelby, It is important to keep his glutathione levels optimised. Stress really depletes our glutathione levels, allowing the inflammation/infection cycle to take hold. It is a vicious circle as the chronic infection lowers glutathione further. Check my page for more info.
Also, has he tried raw garlic? It doesn't taste very nice but it is a very strong anti-bacterial with specific action against Pseudomonas. If I get a bad chest infection I chew some thin slivers of garlic every few hours and it helps. Horseradish extract might help too as it also has anti-pseudomonal properties. Oregano oil is active against MRSA.
We have to do what we can in the battle of the bugs.
Good luck.

 

[Shelby Delacruz]

Shelby, I wanted to thank you for standing with your husband in his time of trial.
Everybody afflicted with this disease should be so lucky to have a person like you in his/her life.
I've been blessed with my 'Personal Angel'.
My Wife has been with me through everything for almost 21 years.
She knew me before my health started to decline.
When I started going downhill, she just sucked it up & kept on truckin'.
She was my advocate when I was in a medically induced coma for 3 weeks. She's cared for me after I've been released from the hospital many, many times.
When I went in for transplant, she slept on a 'shelf' in my hospital room for 3 weeks!
That has happened more times than I care to remember. If not for her, I wouldn't be typing these words now.
So, thank you Shelby. I hope your husband knows what he has in you & I hope he appreciates you like I appreciate my Wife.
Best of luck to you both, you're in our prayers.(FART2)

Wow, she sounds like an amazing woman! And you're a very strong man. Thanks very much for that post, it lifts me up a little and just adds to the fact that I love being here for him through this, I love taking care of him, being his advocate. I think if we both try, we can make it to 80.... I have to get him healthier, and give him a real, full life.

 

[GenH]

I have read that having any kind of multi-drug resistant bacteria will be a no go for a transplant, since it means that there is nothing they will be able to give to fight the infection if it comes up after the transplant. So my bet is that they are taking issue with the multi-drug resistant pseudomonas.

I have many friends with multi resistant pseudomonas who have had transplants. Majority of people having a transplant would have pseudomonas by that point (and likely to be multi resistant due to the amount of hospital admissions/cross infection etc). I've never heard of this being an issue. I have heard there are other rarer bacteria such as mycobacterium that can stop someone being listed (the person who started this thread said the reason for not being listed was xyloxidans). I also know people who have been rejected at one transplant center but have been successfully transplanted at another center.

 

[occupyjapan]

Hi Shelby, It is important to keep his glutathione levels optimised. Stress really depletes our glutathione levels, allowing the inflammation/infection cycle to take hold. It is a vicious circle as the chronic infection lowers glutathione further. Check my page for more info.
Also, has he tried raw garlic? It doesn't taste very nice but it is a very strong anti-bacterial with specific action against Pseudomonas. If I get a bad chest infection I chew some thin slivers of garlic every few hours and it helps. Horseradish extract might help too as it also has anti-pseudomonal properties. Oregano oil is active against MRSA.
We have to do what we can in the battle of the bugs.
Good luck.

This is all a bunch of quackery, and I'm sorry but nothing irks me more than people peddling false, goofy, faith healer "natural remedies 'THEY' don't want you to know about" hokum like this. No amount of garlic and horseradish is going to get rid of Achromobacter xylosoxidans. She needs strength and support and medically realistic options, not false hope and nonsense.

 

[Printer]

Occupyjapan:

I LIKE YOU ALOT.

Bill

 

[DragonReborn]

Try UCLA for a second opinion. They had my sister on ECMO for the co2 which bridged her to transplant. They basically brought her back from death.

She is 5 months out of transplant now and at near normal lung function.