Refused Surgical treatment

Discussions for Patients, Family, and Friends PD For Patients
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Hello Everyone,
I am new to this board. I am sorry that my first main post must be to ask for your help…

My father needs to have a peritoneal catheter placed for home dialysis. I have been trying for the past week and a half to find one that is even willing to treat him with a Latex avoidance Protocol? These surgeons have flat refused, claiming they will not be responsible and will not see him because he has a Natural Rubber Latex Allergy. I called his Neph on friday to see if there was someone he could get and he promised to find someone. I spoke to him yesterday afteroon and he told me I will have to find someone?? I ended up smashing the phone on my desk. (childish, yes, but it wasn’t his face)

I am the founder of The RubberBAN Gang in Michigan. I help people LIVE with NRLA. I have a type 1 & 4 immediate hypersensitivity to NRL. This is due to MULTIPLE SURGERIES with Latex Gloves!! (73% of multiple surgery patients and sensitized to latex. 8% of the general public are allergic now. it was 1% in 1997.) I have had over 100 major surgeries because I have a shunt. Lumbar Arterial Shunt. I am my father main care giver. So this has become a major problem. Considering that Surgeons have the highest number of HARMED patients, It would be safe to say they are already responsible. They have no right to refuse a patient because they have NRLA.

(Please make sure no one is using latex gloves on you. Universal protocol calls for HAND PROTECTION - NOT LATEX GLOVES) Their use only leads to anaphylaxis, no other place. No Exposure, No Latex Allergy. Repeated exposure must be stopped if you hope to stay allergy free… I have been homebound for 10 years because I anaphylaxed in 1997 and lied to until 1999. Until I started doing my own research.

One of the surgeons I contacted, called me today and said he would see my father at his office about 30 miles from our home. He was very rude and arrogant but I took it, remembering my father needs this catheter. (I had contacted the Outpatient Director, who helped set up the latex avoidance protocols.) This surgeon told me he had my father on the schedule at 3 PM today. I told him he would be there but it would be close. The call was at 1:56 PM.

My husband left work early, drove home to get my father, drove all the way to his office. They arrived at 3:09 pm and were told This surgeon had left. The staff lied and said they heard the conversation with the doctor and I said I would reschedule. Needless to say I was not happy. I think livid would be a better word to use in this case.

You see, This man was confronted by the surgical director and asked why he refused us because my father had a latex allergy. He told her that he was not aware that he had refused us. (LIE) This jerk sent us on a wild goose chase. He dragged my sick father out of the house to cover his butt. Now he can claim he set up the appointment and we were not there. What is wrong with these people? This is just MEAN!!!

The medical profession caused NRLA in patients like me and my father with the use of latex gloves. (it is the only way to become allergic - by repeated exposure) I have worked for 10 years in my area to change that. Yesterday I found out that some of the medical offices are using latex gloves laced with ALOE!! (Aloe is Pure Latex - Unprocessed Latex) I truly thought I had made a difference. Only to realize today that I have changed nothing because they don’t care.

Now, we have no surgeon in my area that will treat him. He is getting sicker by the day. He is very blotted, his skin is discolored and I have to smoooze these buttheads to get them to see him. I know how he can be seen safely, I set up the protocols in my area. (I put myself at risk to test those that protocol. )

I need to have surgery on my shunt, but I can’t do that until I make sure my father is ready for home dialysis. I have a call into his Primarycare to see if he will admit him to have this done. But, I have a feeling that will not happen. What do I do now?? Who do I turn to?? I am so scared that something will happen to him before we get this done. Any suggestions are welcome at this point. If you would like to email me directly regarding this (if you may don’t want it read online) I would welcome your help very much. (surgeries@aol.com)
Thank you for reading my post…

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From your posting it appears that you’re concerned about latex allergy and peritoneal dialysis for your father. You describe your latex allergy, how you came to have it, and how it has affected you. You mention that your father has it too, but don’t describe how it affects him.

Has he been tested and found to be allergic to this? What kind of allergic reaction to latex has he had? You discuss your surgeries and how that led to your latex allergy. Are you concerned with surgeries and exposure to latex that he will develop an allergic reaction as severe yours and you’re trying to protect him by asking the doctors to follow the NRL protocol you developed?

Latex is in many non-medical products (rubber bands, shoes, balloons, etc.) as well as medical ones. According to the Occupational Safety and Health Administration, “Natural rubber is utilized in a variety of products including gloves, airways, airway masks, medication vial tops, anesthesia bags, various catheters, supplies for intravenous use, dental dams, balloons, and other products.” From reading the information from OSHA, the allergy seems to be an inconvenience for some, while for others it is quite serious.

http://www.osha.gov/dts/tib/tib_data/tib19990412.html

We are checking with one of our experts to find out if latex is in the peritoneal dialysis catheter or other supplies associated with peritoneal dialysis. It may be that the doctors are thinking if your father has a latex allergy that peritoneal dialysis may not be a good choice, especially if the dialysis catheter, tubing, and dialysate bags contain latex. It may be that the reaction you’re getting from the doctors is because if the supplies contain latex, the gloves they wear would be a minor consideration compared with the others.

If latex is in the catheter, the tubing, or the peritoneal dialysis solution bags, your father may need to consider a different type of dialysis or a kidney transplant, assuming he would be a candidate for any of these other treatment options.

If latex is not in these supplies, non-latex gloves are available for use by medical personnel, some of whom have latex allergies also, but it is also apparently important to not have powdered latex gloves on anyone nearby since some people have problems with inhalation allergies as well.

I wanted to post what I could now and will update this post with information from our expert.

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Our expert says that the PD catheter is not made of latex and hasn’t been for many years. To find out if any other PD supplies have latex, you might want to call the two companies that sell most of the PD equipment and supplies: Baxter (www.baxter.com) and Fresenius (www.fmcna.com).

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Hello Beth,
Forgive me for not explaining to the group that my father “had” a type 4 NRLA. (Natural Rubber Latex Allergy) Type 4 is a contact reaction to NRL. I found a surgeon to do his surgery. He had it done this morning. So, we are on our way, so to speak… A Type 4 NRLA, can be one of the worse reactions, at times… With a type 4 NRLA, you may have a “delayed reaction”. You may not react for up to 48 hours after being exposed. When this happens, you have no way of knowing what or how you were exposed. I kept a running journal of what was happening and the reactions I was having. By back tracking we sometimes got lucky and we would figure out just what/where/when/how the reaction could have happened. In other words, we had to learn the hard way.

My father’s reactions are more severe now than they were when he was first diagnosed. Which means the NRLA has progressed beyond Type 4. He is in danger of anaphylaxis if strict avoidance is not used. At first he only got a rash, hives, when he was touched or around NRL for a long time… Now he gets the running nose, watering eyes and thick throat to deal with. At times, he also needs to use a rescue inhaler now.

I was really confused why his NRLA was progressing. This past Thursday I found out why. It is due to being exposed to the Latex Gloves laced with Aloe Vera. Aloe Vera has many of the same proteins as Latex. Latex and Aloe Vera are both “plant sap”, a pretty elementary connection to make. For the last 3 years, I thought they had been using an avoidance latex protocol with him. When in fact, they had not. They were only sensitizing him further. The medical profession thinks all they need to do is “NOT USE LATEX GLOVES” on patients like my father and I? They mistake this for an avoidance protocol?

As for dealing with our NRLA issue - We will continue to do what we have always done, teach people about NRLA… We will help in any way we can to make it safe for them and us… I have the research on NRLA because I have a book coming out about living with NRLA. It is really hard to get through to medical professionals, as a whole. So, I have contacted a local newspaper that previously wrote two articles about NRLA for me. The new article will address the dangers of Latex Gloves with Aloe Vera in them.

Forgive me, but must address your use of the term EXPERT on NRLA? IF the EXPERT does NOT have or live (daily) with NRLA - they are not an expert. Finding the TRUTH about NRLA is almost impossible. It is buried in Asthma, Occupational Medicine, etc. It took me 6 years to locate all the information for my book. I do not call myself an expert on NRLA. Even though I read medical journals about NRLA, every day. That is what I do with the time I spend locked in my home because it is the only place I am safe. The only place where I can control what I come in contact with daily.

This afternoon, I spoke to the peritoneal dialysis trainer my father and husband will have during the coming weeks. She is allergic to NRL. We talked for about an hour regarding what could be changed at the center to make it safe for all concerned. We are also working on getting a home nurse to visit my father and considering having the training done at my home. They use Baxter and I will contact them to find out about the diaphragm in the Home Choice Cycler. I know most use silicone rubber, like the IV pumps. So, I am not as concerned about that. Most medical supplies are LATEX FREE now. This change began more than 5 years ago. In the past two years, I have not found one IV catheter, etc., that was not LATEX FREE.

I sincerely Thank You for all your help and I will keep you posted on any progress made with the dialysis center my father will be using. I know there is no possible way to create a LATEX FREE medical facility. However, they can be made LATEX SAFE. Mayo, John’s Hopkins, Harvard Medical, did it. There is no reason for a dialysis center to claim they cannot do the same. At least trying to teach them about NRLA, is a start in the right direction. There are just too many wonderful healthcare workers, such as yourself, put in danger for the going price of one penny a glove… Too many that can no longer work and I for one, need you all. I just don’t want anyone else to EVER HAVE TO live as I do now. It is a nightmare.

Thank you again Beth… TTFN…

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I’m glad that you found a surgeon to put in his catheter and that the nurse at the dialysis clinic is understanding about the allergy because she, too, has it. It does sound like a life limiting problem that a growing number of people are having to live with.

BTW, when I used the term “expert,” I wasn’t referring to an expert in NRLA. I’m sure you’re as much of an expert as most anyone, having lived with it. I was referring to an expert in peritoneal dialysis that I trusted to know what the catheters are made of. I wanted to be able to rule that out that as a potential source for further problems and a reason why you were having a hard time finding a surgeon to treat your father.

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jnowork wrote: Aloe Vera has many of the same proteins as Latex.

Hi. Aloe vera latex and hevea latex don’t have the same proteins. Perhaps you meant they have similar proteins. However, I could find no reports in the medical literature suggesting any cross-reactivity between the two. Would you kindly share any references you might have?