An Update – A Bit Off-Topic

I’ve been recovering from knee surgery #2 since April 4. About a month after the surgery, I had an bleed into the joint, which was more painful than recovering from the surgery itself, and which swelled my knee almost to the size of a soccer ball. Back to square one.

At a month later and almost to the hour, I had a second bleed, which put me back again to square one.  Next month, same thing. Each time I asked my surgeon what options I had for diagnosis and treatment and all he offered was to aspirate the blood out of it, which he did, twice, and more pain medication. Those needles were the most painful experience I’ve had. My spouse and I talked with him at length and he said he’d never seen or heard of this happening. As it turns out, it is very rare, but not unheard of. Except for my surgeon.

NO matter what we asked, he never offered anything in the way of solutions, just shrugging his shoulders every time. He wouldn’t give me a referral, either. Each time I went from being med-free, walking without even a cane, and swimming three days a week to not being able to walk. Each bleed cost me several weeks of recovery, where I had to sit still all day, on pain meds, with an ice cuff, and have supervision using a walker every time I got up for any reason.

After the fourth bleed, I called and wouldn’t let him off the phone until he gave me a referral to a vascular specialist. I finally had an ultrasound on Wednesday, and the tech was incredulous that the surgeon hadn’t sent me after the second bleed.

I won’t know the results until Tuesday, and I’m leaving for an overseas trip a week later, so as you might guess, there’s some anxiety rolling around here. I am optimistic about a simple fix – I’ve done some research and if they need to use dye, the most commonly used product does not contain any glycols. I will also check the NDC# of their actual product before anything happens, but knowing ahead of time that it exists is half the battle.

If I take a bit to approve posts or comments, please know it’s just due to travel, or to health issues that will soon be over. Envision me walking strong with happy knees!

Stay well,

Amber

 

 

 

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Links to Documentation of Glycol Allergies

Here are some articles that may help with convincing your doctor that allergies to glycols exist. At the bottom of a couple of them are other sources cited that your doc may want to see. If you find other sources – scientific papers or reports by medical experts, please add them in the comments.

Amber

American Academy of Allergy, Asthma & Immunology Ask the Expert: Macrogols & PEG

American Academy of Allergy, Asthma & Immunology Ask the Expert: Anaphylaxis & Psyllium

American Academy of Allergy, Asthma & Immunology Ask the Expert: Polyethylene Glycol-Dental

American Academy of Allergy, Asthma & Immunology Ask the Expert: Allergic Reaction Following Colonoscopy

American Academy of Allergy, Asthma & Immunology Ask the Expert: Polyethylene Glycol


Knee Replacements: I’ll Take Two, Please!

Well, I did it – I got both knees replaced. One on November 30 and one on April 4, and I am healing well and quickly. The technology for joint replacement is so good now that it’s almost not a big deal – unless you have allergies. The miracle is that I got through two knee replacements and I had no hives whatsoever!

This post will outline what I did – and my medical team did – to make this possible. I’ll write about the experience and what it felt like in another post.

  1. Find a sympathetic doc
    • I did this by asking my facebook friends to recommend good knee replacement docs who might be more open and flexible. Sometimes an indication of flexibility is comfort with patients who use alternative treatments, like homeopathics or herbs. I found a doc who was with a smaller medical group and as a result, he had more autonomy than he would have in a big group.
  2. Practice your elevator speech
    • When I met the doctor, rather than launch right in, I waited until he had a chance to look at my xrays and made sure he was OK with doing the surgery. In the process, we got to talk a bit and it gave him a chance to see that I was a regular person – not a wacko. I think this is very important because he needs to trust you to do what you say you’re going to do.
    • After we’d decided to go ahead with the surgery, I told him I have some allergies that can be kind of tricky, but that I’d been dealing with them a long time and I knew how to do all the homework required to make everything go smoothly.
    • When he asked, “What are you allergic to?” I told him it was a common inactive ingredient in some prescription and over the counter medications and that if he could get me a list of the medications they use during surgery, I would look them up and make sure they were all tolerable. I said this with great confidence, as if it was no big deal. Even though it is for me, I don’t want it to be a big deal for him. It shouldn’t be, either. He needs to do what he does best – surgery – and not have to worry that he’s going to kill you in the process.
    • He hesitated a bit, and I said nothing but projected confidence. I had a paper and pencil ready, and he suddenly just started listing the drugs he uses. I wrote fast and furious as he talked. He asked if I wanted everything – even the things they only use “as needed” (PRN) and I said yes, but I was happy to call the hospital pharmacy or the nurse in charge of the meds and get more info there.
    • He said I could talk to the person in charge of the hospital’s Joint Unit, and gave me her name. I said I would call her right away and get it taken care of. For the second surgery, I was able to get contact info for the Pharmacy Manager, and he simply went to the pharmacy and brought back product inserts. This would have saved me weeks of time had I been able to do it for the first surgery, but they weren’t yet ready to do that. I think once they got to know me and I had some credibility, they were OK with letting me talk directly to the pharmacy.
  3. Find a powerful ally on the hospital staff.
    • I called the Manager of the Joint Unit and gave her my spiel, “I am scheduled for surgery at _____ hospital and I have an unusual allergy. Dr. _____ gave me your name as someone who could help me with this. Although it’s going to sound difficult to accommodate, I have been dealing with this for many years and am willing to do all the homework to make it as easy as possible for your staff. All I need is a list of the medications used during the surgery and during my hospital stay. I hope you can help me with this. I know it sounds odd.” By some miracle, she said that it didn’t sound odd to her at all, and that her mother was dealing with a similar situation.  My relationship with this woman made all the difference in the quality of my hospital stays, so bring your best self to the table in every interaction, no matter how scared or stressed you are. This woman’s help was the single most important factor in the success of my surgery.
  4. Do the homework.
    • I researched every drug on the list and created a spreadsheet that had different colors for each situation – green meant it’s OK, red meant it’s not, purple meant I would bring my own meds from home. The process took several months. You may have a better system, and the hospital may even have a protocol – if so follow theirs. We are in uncharted territory here, and there are people who want to help – we just have to show them how. If they don’t know how to do this, it’s not because they aren’t good at what they do – they just don’t know how to integrate this new info yet. Be kind to them, no matter what.
    • Use DrugInserts.com to find inactives or Drugs.com, or better yet, get the actual product insert from the hospital’s pharmacy. The key is to find the NDC#. This number ties that exact drug to that manufacturer, and it’s the only way you can make sure you are looking at the same medication. For more info on how to use the NDC#, see this post.
    • Look for alternatives on the list for things you cannot take. There was a drug that the hospital carried in two different doses that had PEG in the 2mg form, but not in the 1mg form. I had a column for “substitutions” and for the 2mg, I put the 1mg as a substitution. For the second surgery, the pharmacist looked over my suggested substitutions and OK’d them. For the first, I guessed. Not ideal, but we were in uncharted territory.
  5. Communicate gracefully with everyone involved.
    • Several weeks before the surgery, I sent the list to the doctor and asked if it was in a form he could use. I asked what I could do to make this as easy as possible. I you talked to the nursing staff and the anesthesiologist about the list at pre-op, gave each of them printed paper copies (many hospitals don’t have color printers handy). I asked if they wanted me to meet with them, or if there’s any way I could make it easier. I had to project confidence: This can be done, and I am here to help.
    • On the day of surgery, we brought a couple signs for the wall in my room that said “Allergies – Please see list” and a copy of the list for the nursing staff, the anesthesiologist, for the room, and an extra, all printed in full color. When we checked in, I made sure the nursing staff knew how to use the list and how to check the NDC for everything that goes in or on my body. The first surgery, this didn’t go as well as planned, but I got through it. I had to let the nurse know that everything was on the list, and that all they had to do was check the numbers. The second worked beautifully, due to #3, above.
    • I also brought in some meds from home and showed them on the list where each one was. I had labeled each one with the number of pills in each bottle and separated them into “every day” and “as needed.”
    • I had someone with me in the hospital 24/7. Whenever a nurse came in to give me meds, my companion checked the NDC# on the drug against the NDC# on the list before I took it. The nurses were very good about this and we got to laughing about it after awhile. Bring a magnifying glass.
  6. Be grateful and humble and tell people how their help impacted your life.
    • Bring chocolate and be generous with it. Write notes about the staff members who were particularly helpful and make sure they get to the hospital administration. Assume they want to help, but may not know how.

I hope this is useful and that if you are faced with surgery or a hospital stay, you are able to find the kindness and support I was able to find. The process I used may not be the best, but I had no model, so I made one up. I hope we have it easier in the future. Please share what works for you if you’ve had a similar experience.

Amber


Knee Replacement, Anyone?

I will be getting surgery to replace my knees fairly soon. The artificial joints are usually made of polyethylene plastic and titanium or zinc. I have no history of reacting to polyethylene plastic – only to propylene glycol compounds. I wonder if anyone knows of anyone who has had a reaction to polyethylene plastic in a joint or some other medical device, or anyone who does have a PEG allergy and has had a successful knee replacement.

Let me know if you’ve heard of anyone.

 

 


More Resources for Chemical Information

Reader Kerry Kuzak brought up a good point about ripening products used on conventional and organic produce. Ethylene gas is a natural substance emitted by ripening fruit. If you put an unripe banana in a paper bag with an apple, the ethylene gas from the apple will ripen the banana. Growers have expanded upon this process and will harvest unripe fruit and then ripen it all at once in a chamber filled with ethylene gas. The problem is that the substance used for producing the ethylene gas may contain a glycol of some kind, and residue from that process may remain on fruits and vegetables ripened this way. Because organics are also allowed to be ripened with ethylene gas, this could be an issue even for those of us who buy organics hoping to avoid harmful chemicals.

This also may be perfectly fine and not harmful to those with glycol allergies at all. It’s ethylene gas that’s the ripening agent, not necessarily ethylene GLYCOL, so we definitely need more research on this topic.

I’m doing some research on this, and when I find more, I’ll post on it.  In the meantime, wash your produce, even if it’s organic!

Amber

Here are links to some sites that might be helpful:

PAN Product Info

The World’s Healthiest Foods A link Kerry found from George Mateljan, founder of Health Valley foods

Where to find MSDS (Material Safety Data Sheet) Online

Household Products Info