PICCing up Steam, Part 3: Line Life

Living with the PICC line has its challenges, but has gotten a lot better over time. At first, my arm was quite sore, sleeping was a bit tricky, and I was really scared of showering (it is important to keep PICC dressing completely dry to prevent infection).

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Covered and (kinda sorta not really) ready for my first PICC’d shower

After a couple of weeks, the soreness subsided, and I became more confident in keeping the line dry while showering. (No mishaps!! Phew!)

An adjustment I made about a week in was to change the time of day I infuse. I was infusing in the afternoon, while my son was at summer camp, and then it would hit me like a ton of bricks in the evening, making it hard to get through dinner and bedtime routine. I decided to switch to evenings, in hopes of sleeping through the crappiness. It worked! I now start to infuse either after my son goes to bed, while my wife and I are hanging out chatting or watching tv, or I start it during my son’s bedtime, and infuse while we read stories.  It’s working out pretty well.

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Lounging on the couch for a bedtime infusion

While it may sound like everything’s going swimmingly (and really, it mostly is!!), the past several weeks have also been quite hectic.

One day per week I have to wait for my visiting nurse to come and change my bandage…and I do mean wait. With a job that takes her door to door dealing with medical issues in the greater Boston area, my nurse has a little trouble pinning down her arrival time, which results in a LOT of waiting around. Once she does arrive, the dressing change process is a little unpleasant.

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It feels so weird when it’s hanging out of my arm all naked!!

Sticky things need to be removed from my skin and my arm is thoroughly cleaned – while a tube is dangling out of an open wound in my arm…that travels to my heart. In addition to being uncomfortable, it can make me a little woozy to think of where the other end of that tube is!! And because the insertion point of the line is a wound, it sometimes gets a little…yucky, and needs to be cleaned more vigorously…which is how I ended up breaking out in a cold sweat and almost fainting that one time. Between the waiting, and the way I often feel after dressing changes, I always consider that one day each week to be mostly lost.

Not directly related to the PICC, but happening concurrently are my physical and cognitive therapy appointments, which happen twice weekly, and once weekly, respectively. I am so happy to have been referred for these therapies, as they are supplying me with invaluable information and tools to help rehabilitate myself physically and mentally from this illness. That said, exercising my brain and body at these appointments can be really exhausting, so the rest of my day after these appointments is often spent resting.

My last weekly appointment (for those keeping track: #4) is my supportive infusion therapy at my Lyme doctor’s office. These IVs have mega-doses of vitamins and glutathione, which help the antibiotics work better, me feel better, and my immune system stay stronger during treatment. One plus about the PICC line is that both the infusion and the blood draw I get at the same time can go right through my PICC line, saving me from needle sticks!

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My IV nurse drawing my routine labs

As usual, life goes on in spite of my treatment. I have even taken this infusion show on the road to visit family. While infusing at a hotel, I came up with a hoodie hack for staying warm despite  air conditioning and carrying my medicine balloon!

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Infusion fashion at a hotel

The most important news to report is that this antibiotic treatment is WORKING! It was slow going at first, but in time I started to have some very good days. At some point, I looked at my symptom notes and realized I was not having joint pain or neuropathy any more! Let me just linger on that for a moment – MY JOINT PAIN AND NEUROPATHY WERE GONE. GOOOOOOOOOOOOOOOONE!!

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Feeling especially kick ass on this day

Now of course, this being Lyme treatment, nothing is straight forward. Other symptoms still persist on moderate/tough days, and with pulsing five days on, two days off, herxing can hit at any time. This week, for example, ALL my symptoms have been flaring, including that joint pain and neuropathy I thought I had said goodbye to. The lows can be tough. When my joint pain came roaring back with a vengeance, after a really good stretch of feeling pretty well, it hurt in more ways than one. It’s amazing how quickly one can forget how bad the bad days are. There were definitely some crying nights, from the pain, from the realization that the fight continues, and from the sensation of looking back on how many days of my life have been lost to this pain.

With the treatment showing great signs of working, and the herxing continuing periodically, my doctor and I have made the decision to keep the PICC line and continue IV meds for an additional 4 weeks, bringing my total to 12 weeks by the time I finish in October. I am so glad to be able to do this treatment and really hopeful about where I will be in another month.

More help on the path to healing

One of the many frustrating aspects of living with Lyme Disease is how widely misunderstood the illness is. Many people are surprised to hear that Lyme Disease can linger long after a short course of antibiotic treatment. Even much of the medical community does not understand how devastating persistent Lyme Disease infections can be, and treatment for and recovery from long-term Lyme Disease is still hotly debated.

As a patient, it can feel very isolating to have a misunderstood illness, and limited resources to turn to for answers. I am fortunate that I have access to a Lyme literate physician who has a lot of experience in treating persistent/late-stage/chronic Lyme Disease, who is a short drive from my home, and provides care that is mostly covered by insurance.

Even with good care, at some point in my Lyme treatment, which has been ongoing for over a year now, I started to wonder: Even if I can eradicate this Lyme Disease infection, how will I get back to “normal?”

Being debilitated for nearly two years now, so much has changed, shifted, and transformed in my life. As far as my physical body, I have gained weight from inactivity, lost strength, and my stamina is much lower than it was pre-illness. Even if I can recover from Lyme, what kind of journey do I have ahead to get my body back to the health and strength and I once enjoyed? Regarding the neurological piece of my illness, will all of my cognitive difficulties, brain fog, and memory problems simply vanish when I am “better?” Will I get back my healthy mind? On the emotional front, I have experienced feelings throughout this illness that I previously didn’t even know existed! I have battled depression and anxiety. I’ve come to understand the special brand of stress that comes with a chronic illness – grieving for your old life, worrying for your future, panicking about money as medical bills accumulate, missing out on various opportunities and experiences, always feeling like you are letting people down by not being able to do things, being continually frustrated by your own body’s limitations; the list goes on!

So when I read an article about a new Lyme resource in the Boston area , The Dean Center for Tick Borne Illness, offering rehabilitation for Lyme patients, I was curious. I called them up, told them my story, and waited three months for an appointment.

With my past experience of being told by an Infectious Disease doctor to simply wait around to get better, and by a neurologist that I “don’t have Lyme anymore,” I was understandably skeptical. I also wondered if I was sick enough to warrant rehabilitation services. After all, the Dean Center is part of the Spaulding Rehab Outpatient Clinic, which treats amputees and people with far more debilitating conditions than mine. But I went in with an open mind.

I saw a physiatrist who listened carefully to my whole Lyme history, took diligent notes, and asked surprisingly attuned questions. He did a neurological exam, and gave me a neurological quiz of sorts. Then he started to tell me all the ways that he could help me.

He immediately suggested a PET scan of my brain, as many patients have had better luck with the PET than an MRI in getting physical evidence of Lyme effecting the brain. He scheduled the scan for me, right then and there, to take place the following week. I didn’t even have to do anything! He said that in patients like me, with a lot of neurological symptoms from Lyme Disease, the PET scan will often show areas of the brain that have been effected by the Lyme. “You can see it in the images,” he said. “It’s very real.” The results from the PET scan can help doctors to know just how much damage the Lyme Disease has done, and can also serve as justification for continued or more advanced treatment.

The doctor also gave me a prescription for speech therapy, which a neurologist had previously recommended to me, but I was unable to find a provider for. Now I can get this therapy right through Spaulding Rehab. Speech therapists can provide a kind of cognitive therapy that will actually help me rebuild my brain health, something which cannot simply heal overnight.

For the physical aspect of Lyme, I was surprised that I do qualify for physical therapy, also available through Spaulding, to help me rebuild my physical strength and stamina. Sick girl personal training!

And finally, the doctor acknowledged that dealing with this illness has been a trauma; that long term illness can cause or worsen depression and anxiety, and that with Lyme in particular, the added stress of having a disease that is so misunderstood cannot be discounted. He offered me a referral for counseling with a provider through Spaulding who, “really gets it.”

All in all, my first visit to the Dean Center was such a wonderful, affirming, hopeful experience. I will continue my antibiotic treatment with my Lyme doctor, and the services the Dean Center provides will work in conjunction with the medication. It just feels really great to have more people in my corner, addressing this disease from many angles, and helping me fight my way back to health.

At the end of my appointment, when the doctor shook my hand, I said, “Thank you so much. I really appreciate it.” To which he replied, “We’re just getting started.”