Cepacia- Transplant- recovery

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EnergyGal

New member
I write this in the hopes to help allieviate some fears post transplant. Hopefully when you read my story you will not freak out by rather understand there is a bright side when complications arise.

I write this in the adult section because of the the topic of <b>Cepacia.</b>

When I had my Second Double lung transplant last year, I walked into the transplant feeling like things would go smoothly but remember second transplant as they call a redo is always a HUGE risk and especially after ten years being a transplant patient. So keep this in mind when you read this.

When I was aware that my lungs were in and I was still on the vent, my doctor who I love told me one day I have good news and bad news. I will give you the bad news first, You have Cepacia (in all the years with cf/first transplant I never had it) but the good news is you have the treatable kind.

I was so druged up I forgot but thanfully I was treated with Zozyn for a month I believe and it never returned. My transplant center does not transplant Cepacia patients and it is uncommon for a transplant patient to get Cepacia after a lung transplant. I asked her how it happend. She said when the donor was on the vent things happen. I was also given the Drug Campath as an induction therapy which is the most powerful one out there and that knocks down all the T cells.

Whatever the case maybe, I never got it again so Cepacia for some people is not a death sentence. I also got C-diff all being on a vent and I got rid of that and that too never returned.

Be careful when reading stories how others got infections because yes they can kill but there are those that do survive.

If I knew I would have gotton all of these infections in advance, I have no clue if I would have done the transplant but when you are faced in that situation it is amazing how we survive and adapt.
 
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EnergyGal

New member
thank you for asking. They do not know how i got Cepacia for sure but hospitals are a place to pick things up but It is highly possible that i got C-diff from the massive doses of antibiotics and Anti Rejection meds. Having a feeding tube does not help. I really do not know. I got over them all and was well again and kept on getting stronger. I definitely had some Angels watching over me. when I left the hospital I just kept on getting healthier and to look at me now I look better than my first transplant so I am happy that everything worked out.
 
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EnergyGal

New member
Hi here is a good site to look at
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cdiffsupport.com/aboutcdiff.html
">http://www.cdiffsupport.com/aboutcdiff.html
</a>
A friend of mine who has a transplant has difficulty in getting rid of it.

I believe once i was weaned off the drugs and ate normal food, my system became stronger.

It is a nasty type of poop lol
 
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EnergyGal

New member
Wanted to mention that there are many CF/transplant folks with Cepacia who had it before their transplant who are leading normal lives post transplant. I have two close friends who went through transplants with Cepacia.
 
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EnergyGal

New member
When I saw my doctor a few days ago I mentioned an idea that might help patients with c-diff. I had my husband bring in my tea tree suppositores when I was in the ICU and the medical director asked me if they can be used rectally as they are used for vaginal yeast infections in most cases. I said I had no idea and was afraid to try it. I was not too smart as I feel they would have really helped me.

Here is a post that I wrote Anonymous a few months ago on this site and I am currently using these suppositories at any sign of intestinal problem. My tx doctor said it was safe for me. I only use them once a month on average and do not want to try it for longer unless i got C-diff again.

Here is the post
---------------------------------------------------------------------------------
I would like to remain anonymous for now but perhaps later on I will let others know who I am. I am a female. This post is for Females and Males. Please do not try to guess my name as I am only trying to help you all anon for now. when I am brave enough I will come forward

I have heard of Tea tree oil and its use for ten years or more. I found myself trying mouth wash, shampoo and tooth paste, lotions and suppositories and saw the benefits from personal use. A few years back, I bought tea tree oil suppositories (for female use) and used this for a yeast infection and it worked amazing and could not compare them to regular monitstat.

A year ago, I read online that Tea tree oil susppositories can be used Rectally and I thought to myself couldn't this be toxic as Tea Tree oil ingested into the mouth and swallowed is dangerous. A doctor mentioned this to me and I just passed it off as I am not trying this. At the time I had diahrea. So I suffered until it went away. I took conventional treatments.

I did read recently that this brand that is used for womans hygiene can be used rectally. Last month, I decided to try one suppository up my rectum and the next day my stomach was Completely back to normal. I passed this off as a coincidence.

This past week, My stomach was not normal. I thought I ate something strange or I was fighting a bug. I had so much AIR Coughs or shall I say, Puffers or Stinkos. I drove my poor husband crazy. Poor thing

Well last night, I decided to try another suppository up into the rectum and I did not notice instant results of course but in the middle of the night when I would awake with a thunder, I did not hear any noise. It is now almost 14 hours and I am clear of all and any Air Puffers. My belly is no longer bloated. Nada (nothing) no I do not speak spanish

Well I am going to call that doctor I know and tell him my story and I am sure this needs to be studied but it is worth trying if you are having any discomfort at all. I would only try it one time and wait for days to see the results.

It worked so well, that hopefully this will take me another month before I need another dose. Perhaps not for many months. When inserted it stays put but I would suggest you lie down for fifteen minutes until it is absorbed whether you use it in the front or back. Men only can use it one way of course lol

Found an interesting link on tea tree oil and I urge you to do your own research and see what you find. It says it helps against MRSA but I would never inhale it directly as TEA TREE OIL by itself is EXTREMELY irritating and I think someone would be rushed to the ER if they would even attempt to inhale it directly.

I think I read once that you can inhale a little over a big pot of boiling water but never directly inhale with a nebulizer. Tea Tree oil by itself is like alcohol.

I have once put a little on my upper lip and it went into my mouth so that was not good but they do sell lip balms with tea tree in them.

Read and research as this might help some of you.

here is one good article
<a target=_blank class=ftalternatingbarlinklarge href="http://www.mdanderson.org/depa...2E&method=displayFull
">http://www.mdanderson.org/depa...2E&method=displayFull
</a>
there are two companies that sell tea tree oil suppositories and if you are interested there are different links out there with good discounts. It is wise to Refridgerate

Let me know if this helps you too
Sincerely,
anony for now
 
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amber682

New member
Now I'm embarassed for asking. <img src="i/expressions/face-icon-small-blush.gif" border="0"> I was way off, I was thinking some sort of lung infection.
 
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Ender

New member
Risa, thank you for that. I think everyone needs to know that capecia is not always a death sentence, and there is cause for hope.

You're a fighter Risa. I enjoy your posts, and respect the experience that you went through in order to post this to us. You're a cause for hope in itself.

<img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
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