Sunday, April 24, 2011

Lyme update, porta-cath, infection?

It has been a crazy week. Maybe I should say a crazy couple of weeks, because it's been a while since I reported in about the state of my health. Numerous things have occurred. In general, sleep has gotten worse. Tremors have gotten worse, especially in my feet (in which I am beginning to get vassiculations) and overall general state of health has declined further. I am working feverishly with my neurologist and my Lyme disease doctor to prevent sliding further. There was one bright spot last week when I had almost a full day with no tremor, plenty of energy, incredible mental focus, and I was very productive. So this gives me some hope.

As mentioned two posts ago, of the more recent findings is from a test that looks for a genetic predisposition to blood clotting. This was performed because I had a port implanted surgically into my chest to allow for easy intravenous treatment for Lyme disease using an antibiotic called ceftriaxone. As I said before, the genetic factor is called Leiden factor 5. According to the hematologist I saw this week, contrary to what my Lyme doc, neurologist, and the report from the blood lab said, it only increases my chances of having a stroke somewhat. My Lyme doc is worried that since I just had surgery performed near a vein that leads from the brain or is close to the brain, there is some concern that I could be in jeopardy of having a stroke unless I start taking orally, or injecting subcutaneously, a blood thinner such as Coumadin. I had already started on Coumadin a week before getting a hemo appointment, but the hemotologist said it could actually *cause* a stroke. A second hemo, who is also a LLMD (Lyme-literate MD) disagrees and wants me on sub-q Lovenox. What do you do when two specialists disagree?

But I am getting ahead of myself. Let's go back to the getting the port implanted. I had had a PICC line in my arm last time I did intravenous antibiotics for Lyme disease. That was about a year ago. That was annoying because it prevented me from easily taking showers or going swimming. The under the skin, subcutaneous, port I had installed two or three weeks ago allows for the removal of the needle that pierces the skin to go into the port. When the needle is removed, you have essentially a watertight seal. This allows for easy bathing and swimming. I have a couple of friends in the local support group who have two different kinds of ports. I had to decide between one called a Groshung and the other kind (called a porta-cath) which is implanted totally under your skin. The Groshung is one that comes out of the skin very much like a PICC line in the upper arm, but it's in the chest instead, with a small tube coming out from near the clavicle. Here's some information on the website about the different kinds of ports. The ports are typically used for chemotherapy, but people on long-term antibiotic treatment for Lyme disease use them too.

Types of Chemotherapy Ports
Chemotherapy drugs, administered to treat cancer, can cause scarring and collapse of veins, making it hard to start intravenous lines. Ports buried partially or completely under the skin connect to catheters that terminate in large veins, reducing the risk of scarring. Ports, which can last years, are used to administer more than one medication at a time, and can also be used for blood draws. Once placed, they need little care; some must be flushed regularly, and need to be kept clean to decrease the risk of infection.

Tunneled ports are inserted as an outpatient procedure into the chest beneath the subcutaneous tissue, which lies under the skin. The port is then fed into the superior vena cava, a large vein just above the entrance to the right atrium of the heart, according to the Cleveland Clinic Cancer Center. Accessible ports, usually more than one, used to draw blood and administer medications, hang outside the chest. The catheter is kept in place by scar tissue that forms around it. Tunneled venous catheters can stay in place for years. Tunneled lines need to be flushed on a regular basis so they don't clot, and need to be kept scrupulously clean to avoid infection. Commonly used tunneled ports include Broviac, Groshung and Hickman catheters.

Implanted ports are implanted completely under the skin; to access them, a needle pierces the skin. A small lump is visible under the skin. Implantable ports are surgically placed directly into the superior vena cava. The middle section of the catheter is soft so it can be pierced by an L-shaped needle called a Huber needle that lies flat against the skin after the port is accessed. Implantable ports need to be flushed once a month if not being used, the American Cancer Society says. Porta-cath, Infusaport and and Medi-port are a few available implantable ports.

So, what I got is an implanted type, a porta-cath. The surgery was pretty expensive as I had to pay the deductible for my insurance policy, which is $1000. It took about two hours total from the time I arrived to the time finished, maybe three hours. The anesthesiologist gave me something she called "twilight". It was a general anesthesia, but not a total knockout. However, I remembered absolutely nothing, as though no time and passed at all, and I had no pain whatsoever. That was, until the painkiller wore off. Here's what I looked like shortly after the surgery , after I removed the bandage and the needle:

A few days after surgical installation of Porta-Cath
You can see the incision where the catheter was inserted.  They make a pocket under the skin.  Then, the line from the catheter goes upward, toward the clavicle, and then into the subclavian vein, feeding  over to the superior vena cava, just above the heart.  
The next couple of weeks were touch and go. The needle was inserted already after surgery, so I could begin getting the intravenous antibiotics in. That is, if I had actually had possession of them. However, I did not. My insurance company, Blue Shield of California, had refused to pay for my ceftriaxone this time around. They had paid without any complaint for six months of treatment last year. This time they refused on grounds that I had already tried it for six months without success. This is unfortunate, and the result of a political debate going on between different groups of medical doctors who claim to be Lyme disease experts on both sides. One group is the IDSA (Infectious Diseases Society of America) and the other is ILADS (International Lyme and Associated Diseases Society). So what I am left with is sourcing the ceftriaxone from whatever places I can scrounge it. A couple people I know had extra left over, so they gave it to me. I have to mix it with saline solution and then put it into saline bags and then do the drip myself. I am learning how to insert the needle into the port, put on the bandage, and so forth by myself.
Anyway, so I was happily doing about four hours a day of ceftriaxone drip when, after about two weeks, I noticed that under the bandage (which is see-through) I had red bumps appearing on my skin
Something started to look angry under the bandage
I decided to remove the bandage and examine further. I wasn't sure whether it was a skin infection or dermatitis, or something even more serious. I took photographs and sent them to my doctor who was somewhat alarmed, and so I had a couple of other people look at it. No one could quite figure out whether it was contact dermatitis, shingles, or cellulitis. Cellulitis is pretty serious, and can lead to even worse conditions such as sepsis. After a couple of more days I ended up seeing the surgeon who implanted the port in the first place. He said that he thought it was just contact dermatitis and to take off all bandages, remove the needle, and let the skin heal by itself. 
Ouch! This really hurt and itched!
It got pretty bad, and was painful, as you can see here. I was to keep it dry and wash it with soap and water occasionally. Finally, about a week later, which is today, It is just about back to normal. The problem turned out to be a skin reaction to Tegaderm, a 3M adhesive that is used on the clear bandage you see in the first photo of the red spots, above. It seems I am allergic to that adhesive! If this happens to you, you probably have the same allergy. The solution is to use another type of bandage. I finally found one that work for me. It's called the IV 3000, made by Smith & Nephew. Not cheap,  but I found them at a local medical supply store and they saved the day and are quite water tight for showering. Very thin and comfortable, too. In the photo below, you can see the valve where I plug the IV drip line in (has a red cap on it), taped to my chest just for storage purposes when I am not infusing. The black butterfly item is part of the Huber needle, which you fold back and pinch between thumb and index finger for inserting and removing the needle.
Better bandage, the Smith & Nephew IV 3000


  1. Thanks for updated it. I am always expected this kind of things from you. Thank you.

  2. I have some extra ceftriaxone and would be so happy to give it to you. I'll be in the bay area on May 30th and could bring it to Berkeley. Let me know the best way to reach you and I can fill you in on the details of everything I have.
    My doc is near Palo Alto and I come down every couple of months from Oregon. I know lots of other folks who are sick too, but your story really breaks my heart and no one I know is on ceftriaxone right now...

  3. Hi bob,
    I've been reading your blog - thank you for sharing your challenges and experiences.

    My daughter is also being treated for Lyme - via IV. We finally realized that she has an allergy to chloraprep (that antibacterial skin cleaner) - which is also on the bio-patch disk (often used at insertion site on PICC lines).

    I hope your rash is better - it looks SO miserable.

    take care,

  4. Hey Bob, we have adhesive reactions in common. The regular Tegaderm and strangely just the orange strip of the S&N blister my skin. There is a hypoallergenic tegaderm (that's the name of the dressing I think) called Tegaderm HD, I think, which, if prepped with a 3M product called cavilon, is tolerable for the four days I need my port to be accessed. I'm recovering now from a perfect square of blisters from the S&N. Just some info for your back pocket. Holler if you would like a sample of the cavilon. Happy to pop it in the mail to you.

  5. Sorry, correction! I just talked to my nurse sister who says both Tegaderms are listed as "hypoallergenic" (hah!), but the Tegaderm HP (not HD), is for instances where you need the dressing to really hang in there. It's stickier. But it is a wholly different adhesive than the regular Tegaderm, and sometimes people who react to one do not react to the other. Me, I'm going to daily access when I'm using rocephin, and good old gauze and paper tape for the 20-30 minutes I need to use it. I do the pulse-infusion using a syringe, infusing 1ml every 30 seconds? So much faster!

  6. Great information! I have been looking for something like this for a while now. Thanks!

  7. Glad to be of help. I continue to have irritation, even with the S&N bandage. Now I am using only paper tape and even that is resulting in rash. We're not sure what the issue is. Next step may be an ultrasound of the port-a-cath.


  8. Wow, Bob, I finally had a chance to read this and am glad you are moving forward, but sorry it is causing you additional pain and consternation. I hope you might be getting some symptomatic improvement by now? Let us know.

  9. When I was 17, I went through 9 months of chemo and got a portacath and I so worried that my portacath would get infected but luckily it didn't sorry to hear that yours did and hope everything is going better.

    1. When I was 42, I went through 8 months of chemo, got a portacath. It did get infected, was deathly sick, in hospital for a week, got cellulitus, not yet sepsis, great doctors, vancomycin? did the trick. I did have to have it removed and had another one put on the other side of my chest. That one never did get infected. 6 years remission!

  10. Hi all, great blog - firstly, wanted to ask Bob how he was doing since it's been two years since you wrote this? Are you better? I'm sooo nervous because I'm getting a Port soon and have read horror stories (see cancer patients' support boards), almost all the women have had horrific pain and that is *without* having Lyme (I have tons of pain) so it's nice to see that you weren't writing about the pain. I had to have my PICC removed recently because of serious contact dermatitis which of course ended up infecting the insertion site and line. All this is so overwhelming on top of how debilitated I am... wondering if anyone could give me some words of wisdom! Much appreciated and would love an update too! thanks!


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