quote:

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Originally posted by seekhelp:

We assume Lyme due to a small lab in California pointing out a 31 or 39 KdA on a WB.

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Please speak for yourself.

I can not be included in your "we".
I have NO DOUBT that I was infected with borellia and I know that I am not alone.


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I'm on the black list for blood donation for Babesia anyway. I should hope that list is extended to organs as well, but who knows.

As I think of it...chances are someone in need of an organ transplant would most likely be in a somewhat unhealthy state to begin with, wouldn't they?

When someone has an organ transplant, don't they take down their immune system so they don't reject the organ for a period of time following the transplant?

They would be most likely assume that they're getting a healthy organ and have no idea what hit them. Who knows if they'd EVER figure out why they feel so much worse when they should be feeling better.

How many doctors would be likely to think test them for Lyme if they started failing after the surgery? Would they then rule it out with our inaccurate tests?

I personally wouldn't even suspect that a person who was unhealthy might donate their organs. Would the doctors many of us seem to encounter consider that possibility?

The organ you donate could prevent them from getting an uninfected one.

I would think it would be different if you could ensure that someone would tell them & give them the option to take their chances, knowing that the person donating the organ had a resistant bacterial infection & possibly other unknown co-infections, without making them go back to the bottom of the list if they chose to wait.

Who knows what kind of shape any of our Lyme-infected organs are in anyway. Do we know our organs won't be failing us any time soon?

Lastly, if I were going to die without an organ transplant, knowing what I've been going through with these diseases, I'd rather not further burden my family. I'd rather just move on & let them not have to deal with all the misery and expense my illness has put us through.

If they did come up with accurate testing and a sure-fire cure, by all means I'd donate. If it was a matter of just a painful knee joint....maybe I'd consider it.

I wouldn't wish unsuspected Neurological Lyme disease on my worst enemy.

Perhaps a person's view on this topic may be influenced by their personal experience with tick-borne disease, the symptoms they've endured and the effect it's had on their life & the lives of those around them.

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Sorry for the tangent....

It's very sad indeed.

Every time I receive something asking for a blood donation, I feel absolutely awful.

These darned diseases frustrate many of us in SO MANY ways.


Ali
 

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Posted by AliG (Member # 9734) on :
 

quote:

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Originally posted by seekhelp :

I guess my perspective is think of a person on kidney failure with a young child who knows they have 10 days left on earth to spend with their kid and no hope of recovery w/o that kidney.

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I think the question is do they actually have hope of recovery with an infected kidney or does that just prevent them from getting a healthy kidney when one becomes available?

I would also think that if they had been given a transplant of a Lyme-infected kidney & it failed, someone else would be given priority for the next available one - as they would have no idea why it failed & would likely assume that the person they transplanted it into wasn't a good transplant recipient.
 

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Posted by lymielauren28 (Member # 13742) on :
 
I was an organ donor too. Now that I have Lyme and friends I would NEVER donate my organs.

My father-in-law (who I'm very close to) had a kidney transplant about a year and a half ago. He was weeks away from death when he finally got his kidney and had been on dialysis for years.

He was already severely immuno-compromised from being so sick for so long, and as Ali G pointed out, they put you on drugs to weaken the immune system even further so that your body doesn't regect the new organ.

So you know, the pills aren't for a certain period of time - they stay on them for the remainder of their lives to keep the immune system low.

Not a doubt in my mind that if he'd recieved an infected organ he wouldn't have made it.

Besides that, I wouldn't wish this disease on anyone. I know that I've been on deaths door in the past and I know just how sick this disease makes you - to pawn that off on someone who is already extremely sick is just irresponsible.

It also would prevent them from recieving a healthy organ, as others have pointed out. So, no way would I even consider it! No one else on this board should either.
 

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Posted by Melanie Reber (Member # 3707) on :
 
[Removed a quote from a post that has been deleted.]

I had a beautiful 2 year old nephew whom I adored. He lost a kidney to cancer, then went through 3 liver transplants. Jerimiah did not make it and was buried on his Mother's birthday.

I don't remember anyone thinking at that time... anything close to what you wrote above.

[ 09-28-2009, 05:59 PM: Message edited by: Jenifer ]
 

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Posted by sutherngrl (Member # 16270) on :
 
There are people that live a long time after transplants and every day of life is precious.

I don't think any of us should ever be blood or organ donors. It is simply irresponsible.
 

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Posted by sammy (Member # 13952) on :
 
I also wanted to donate my organs and tissues. It is sad that this disease takes so much from us that even in our deaths it robs us of that final gift.

If I pass before they find a cure for Lyme and Co's then I will donate my body to science. This is an option that many people do not consider but it too is invaluable. I was lucky enough to have had cadavers in my A&P classes so I have personally been blessed by others generosity.

It is also important to discuss your wishes with your loved ones. That way they will not have to make any decisions while they are mourning. They can have peace in following through with your request.
 

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Posted by seekhelp (Member # 15067) on :
 
I erased my comments. THis is a sensitive issue and like I said morals come into play. We all make the decisions we feel best. I respect that.
 

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Posted by Melanie Reber (Member # 3707) on :
 
MY point is that you are being incredibly insensitive, Coltman. To many, obviously, this is not a humorous subject. I really don't think the language barrier can account for it either... rather, from what I have observed thus far, I have a feeling you are lacking in tact or the ability to self-censor. Either one of those things (or both) or you derive some sort of sick pleasure in trying to be terribly offensive?

Perhaps you should do a bit of research before spouting off about certain things when it is obvious that you are using opinion only to base your statements on?

It would surely aggravate me a whole lot less, and I assume a few others here as well. I do not wish to argue or debate with you but if you don't realize this already, perhaps it is time you did?

......

The prognosis for heart transplant patients following the orthotopic procedure has greatly increased over the past 20 years, and as of May 30, 2008, the survival rates were as follows.

* 1 year: 87.5% (males), 85.5% (females)
* 3 years: 78.8% (males), 76.0% (females)
* 5 years: 72.3% (males), 67.4% (females)

In a November 2008 study conducted on behalf of the U.S. federal government by Dr. Eric Weiss of the Johns Hopkins University School of Medicine, it was discovered that heart transplants- all other factors being accounted for- work better in same-sex transplants (male to male, female to female). However, due to the present acute shortage in donor hearts, this may not always be feasible.

As of the end of 2007, Tony Huesman is the world's longest living heart transplant patient, having survived for 29 years with a transplanted heart. Huesman received a heart in 1978 at the age of 20 after viral pneumonia severely weakened his heart. The operation was performed at Stanford University under American heart transplant pioneer Dr. Norman Shumway, who continued to perform the operation in the U.S. after others abandoned it due to poor results..

Another noted heart transplant recipient, Kelly Perkins, climbs mountains around the world to promote positive awareness of organ donation. Perkins is the first heart transplant recipient to climb to the peaks of Mt. Fuji, Mt. Kilimanjaro, the Matterhorn, Mt. Whitney, and Cajon de Arenales in Argentina in 2007, 12 years after her transplant surgery.

Dwight Kroening is yet another noted recipient promoting positive awareness for organ donation. Twenty two years after his heart transplant, he is the first to finish an Ironman competition.

Fiona Coote was the second Australian to receive a heart transplant in 1984 (at age 14) and the youngest Australian. At 24 years since her transplant she is also a long term survivor and is involved in publicity and charity work for the red cross, and promoting organ donation in Australia.

Drugs that prevent transplant rejection must be taken for the rest of the patient's life. Such medications will lower the immunity against infections.

Source(s):
http://en.wikipedia.org/wiki/Heart_transplantation
http://www.nlm.nih.gov/medlineplus/ency/article/003003.htm
http://www.medicinenet.com/heart_transplant/article.htm
 

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Posted by bettyg (Member # 6147) on :
 
melanie, well said. hugs
 

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Posted by Hoosiers51 (Member # 15759) on :
 
sammy,

You may still be able to donate your body to science (like for Anatomy students), only if parts of it will not be donated to another person, and instead will only used as a teaching tool.

Because maybe things they use to preserve your body would kill any infection? I'm assuming they would have to use something to "treat" or "prepare" cadavers used in science, to prevent decomposing (sorry if too graphic of a comment). So that may still be an option for those with Lyme.

I think Med schools use cadavers, right? If there is no preservative like alcohol, formaldehyde, etc used, than it might not be safe. I just don't know.

I hope no one finds this comment insensitive...please let me know if so. It could be an option for those who still want their body to go towards helping people.
 

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Posted by Ann-OH (Member # 2020) on :
 
I am going to medical school.

Of course they treat cadavers to make them safe to handle and the students take precautions as well; medical schools couldn't take the risk of harming a student.

I am pretty sure the part of your eye that is used can't pass on infections.

Call your local medical school and get all the answers.

Ann - OH
 

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Posted by cactus (Member # 7347) on :
 
11 years ago, I was the primary caregiver for my best friend while she waited 8 mos on the transplant list - for a liver.

And - no - she did not damage her liver drinking, but as a result of a car accident combined with an undiagnosed blood-clotting disorder.

8 mos is a long, long time to hope and a long time to learn all about the ins and outs of organ donation.

She did not make it.

And yes, she left behind a young child - who became my foster child.

I have been an avid proponent of organ donation ever since.

But when the nature of these infections became clear to me, I had to do some hard thinking.

So I'd like to offer a few thoughts based on having lived that experience:

- First, having it notated on your driver's license is not enough to make you an organ donor.

The hospital still has to get full consent from your nearest relative. Always make sure your relatives know your wishes.

I know this because we waited through 2 such situations - in one, the family could not be reached at all.

In the other - the family could not decide and delayed their decision until many organs were not usable.

Perfectly understandable, and none of us had ill feelings about that, by the way.

If someone you know truly wants to be an organ donor, they'll need to have a card stating that, with signatures of 2 witnesses in their wallet or be positive that their relatives are reachable and understand their wishes.

- And most importantly - receiving an infected organ would have been devastating. Utterly and completely devastating.

Think about it - to receive an organ, a patient is already ill. Already in distress.

Add to that the anti-rejection meds, the long, long surgery, and the long recovery time... And then add in an infected organ.

It would make recovery almost impossible, even for the healthiest of people.

Then, consider as well that having received that infected organ, the patient does not have a shot at the next one - the one that might truly have been life-saving, the one not infected.

And finally - all chances for future transplants would now be out the window, as having an infection such as babesiosis, borelliosis, etc - well, probably that would not make one a good candidate for another transplant.

This is obviously a personal decision for all.

It's hard to say what we would have agreed to, when waiting on that liver - would we have jumped at *any* liver?

From where I am now - I think, "No."

My best friend had a brilliant mind and a heart full of hope. I believe she would have passed on an infected liver, in the hope that a healthy one would come available.

Just my thoughts.
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by AliG:
Originally posted by seekhelp:

We assume Lyme due to a small lab in California pointing out a 31 or 39 KdA on a WB.

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quote:

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Originally posted by Lymetoo:

quote:

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Originally posted by AliG:
Originally posted by seekhelp:

We assume Lyme due to a small lab in California pointing out a 31 or 39 KdA on a WB.

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Please speak for yourself.

Seek .. If this is how you feel, then you may as well stop treatment. You don't really think you have Lyme anyway. You won't even work with your LLMD.

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Posted by bettyg (Member # 6147) on :
 
cactus and kathy,

thank you for each of you sharing your touching stories from 1ST HAND ORGAN TRANSPLANT to a friend of one who then raised her daughter as your foster daughter!!

each of you touched our souls .... hugs/kisses to you both


seekhelp,

i agree with alig

"Seek .. If this is how you feel, then you may as well stop treatment. You don't really think you have Lyme anyway. You won't even work with your LLMD. "


you're just wasting your and our time here if this is how you feel, and your posts indicate that daily... so sad to constantly see your glass half EMPTY vs half FULL....
 

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Posted by Pinelady (Member # 18524) on :
 
If it is in the blood it is in the organs. All tissue, and infective as such. But there is no

such thing as chronic lyme. I guess the people that had this were all asymptomatic and went on

in life as if nothing was slowly killing them? Are they also going to tell us E coli has nothing to do with lyme.

There was one strict anaerobe, Eubacterium limosum, implicated in a fatal bacterial

infection during the 4-year reporting period; this fatality occurred in FY2005. The remaining

bacteria are facultative anaerobes.

Since FY2006, the number of reports of fatal microbial infections associated with apheresis

platelets has remained unchanged (Figure 4). This finding is consistent with an overall decrease in

the number of bacterial infections associated with apheresis platelets since FY2001 (Figure 5).

Table 4: Microbial Infection by Implicated Organism, FY 2005 through FY 2008


*Four Babesia microti and one probable Babesia MO-1 species

Figure 4: Microbial Infection by Implicated Blood Product, FY 2005 through FY 2008

Figure 4: Microbial Infection by Implicated Blood Product, FY 2005 through FY 2008

Red Blood Cells microorganisms: S. marcescens (1), E. coli (1), Y. enterocolitica (1), B. microti (9), B. MO1(1)

Pooled Platelets microorganisms: S. aureus (1), E. coli (1), Streptococcus dysgalactiae (1)

Platelets Pheresis microorganisms: S. aureus (4), S. marcescens (1), S. lugdunensis (1), S. epidermidis (2), E. limosum (1), E. coli (1), M. morganii (1), K. oxytoca (1)

Figure 5: Bacterial Infection by Apheresis Platelets, FY 2001 through FY 2008

Figure 5: FY01: 7; FY02: 8; FY03: 6; FY04: 3; FY05: 6; FY06: 2; FY07: 2; FY08: 2

E. Transfusion Not Ruled Out as Cause of Fatality

In these reported fatalities, the reporting facilities were unable to identify a specific

complication of transfusion as the cause of death. Often, these patients had multiple

co-morbidities, and after review of the investigation documentation, our medical

reviewers could neither confirm nor rule out the transfusion as the cause of the fatality (Table

5). We did not include these reported fatalities in the analysis in Sections II.A through II.D

(transfusion-related fatalities), above. Combining the transfusion related fatalities with

those that our medical officers could not rule out, there was a decrease in total reported fatalities from 63 in FY2007 to 55 in FY2008.

F. Not Transfusion Related

After reviewing the initial fatality reports and the investigation documentation, we categorized a

number of reported fatalities as ``Not Transfusion Related.'' Our medical reviewers concluded that,

while there was a temporal relationship between transfusion and subsequent death of the

recipient, there was no evidence to support a causal relationship (Table 5). Thus, we did not

include these reported fatalities in the analysis in Sections II.A through II.D (transfusion-related fatalities), above.

Table 5: Fatalities Not Related to Transfusion or Transfusion Not Ruled Out, FY2005 through FY2008


Is Babs currently a known coinfection of Bb?

New book coming out.

http://www.horizonpress.com/borrelia
 

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Posted by AliG (Member # 9734) on :
 
Here's an awful thought....

What about all the people who are infected & misdiagnosed that might unknowingly donate their organs.....those who've been told they do not have Lyme disease because they are not "CDC positive" on a Western Blot test?

It's not as though they have time to screen organs, to look for borrelia, before transplanting them. Time is of the essence in such surgeries for the organs to remain viable.

I wonder how many of the people who failed to recover after transplants may have actually received organs from unknowingly infected donors....or been unknowingly previously infected themselves.

Perhaps it would be a good idea to look for infecting organisms in the remaining tissue after organs are harvested. Perhaps if patients were treated with Doxycycline, along with anti- rejection meds, they might have a better long-term survival rate.


This is all so horribly disturbing to think about. I hate to think about how many people suffer as a result of the misunderstanding and dissemination of misinformation surrounding tick-borne disease.


I sincerely hope they come up with better testing soon.
 

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Posted by bettyg (Member # 6147) on :
 
yes, this has been quite post with stories coming from ALL sides, and some really nasty posts from others....
 

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Posted by Veromia (Member # 22031) on :
 
Oh boy!

I never thought this thread would be so long. I understand why as I have read.

Thank you everyone for all the wonderful information.

*********I thought they gave everyone antibiotics after any surgery or operation . ***************
 

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Posted by blinkie (Member # 14470) on :
 
I agree, this was hard for me to accept as well. I have a good friend that had a liver transplant. If not for it, she would be dead now. I think about that and it hurts that I can't save a life in this way.

But, I have jsut shifted focus. I can give people life in other ways. We all have gifts to give, we can all save lives. It's jsut that some people can save lives by giving organs and blood and others have to find other ways.

Really...you can give someone life. Just being a friend to someone in need or picking up medications for the elderly could save their life.

I think I have saved some lives just by getting them diagnosed with lyme and getting them a Dr.
 

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Posted by randibear (Member # 11290) on :
 
yeah, i found out almost immediately that i couldn't donate blood or organs anymore. sad thing was tho, i had been doing it for years, i mean the blood donating thing.

i try not to think that i could have given somebody lyme, cause i'd go crazy with guilt. i just have to put it aside and accept that i didn't know and honestly meant no harm,but that doesn't help.

it's a heavy burden but at least since i found out, i don't do it anymore.
 

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