Lymphedema: The Rude Awakening
My adventure begins 3 years ago. I was involved in a rear-end collision while waiting at a red light. By keeping my foot on the brake, my body took on the impact. I was partially paralyzed in my right leg and went to the emergency room. They informed me I would be fine within 48 hours, that my body was in shock. They gave me an excuse to get out of work and 10 tabs of Tylenol with codeine, and then sent me home.
Well, I wasn’t fine in 48 hours. My efforts at getting further medical help fell on deaf ears. Instead, I lost my job and the insurance that went with it.
Frustrated and depressed, I surfed the ‘Net looking for answers through exercises, yoga, and even nutrition. This continued right up to Oct 2010.
I looked a little different back then. You need to picture me, 150 pounds heavier, going bald and my nail beds were almost blue. I was barely walking. It was more of a bent-over shuffle using a walker. I was in constant pain, depressed and feeling like a 99-year-old woman. In one of my many attempts to exercise on our total gym, the one Chuck Norris uses, I overdid it somehow, hurting my back again.
I now was forced to sleep upright in my overstuffed chair. Denny works nights and he settled me in for the night and off he went. He came home about 6 hours later and screamed, “JONIE, YOUR LEGS!”
I didn’t know it at the time, but this was MY RUDE AWAKENING TO LYMPHEDEMA.
I can only compare what he saw by saying I looked and felt like I had 2 huge elephant legs. I could only wear my night gowns now. I could not get the slacks past my shins. I walked around in bare feet since socks and slippers were not possible either.
I somehow thought if only I could elevate them it couldn’t get worse than this. But it did. Within a few days huge water blisters had formed covering my right leg.
The nightmare continued. I scratched an itch and it popped open. Fluid went everywhere. I was scared, so I gave up. I could no longer put Denny through my hell anymore.
So I went to Emergency at Heart of Lancaster Hospital. Upon my arrival they put an IV immediately into my neck. And the rest of the day was a blur. I was scared, exhausted and wanted to sleep to escape this mess I found myself in.
I kept thinking it can’t get worse; I am in a hospital now. Boy, was I wrong! My hell had just begun.
They told Denny that I was in SEPTIC SHOCK and WOULD MOST LIKELY LOSE MY RIGHT LEG. They also told him that my KIDNEY was going bad and I would be on DIALYSIS.
Den went home to an empty house and I spent the next 2 months in ICU. I endured Foley catheters, allergic reactions to medicines, a picc line in my arm, and HEPARIN shots 4 times a day
My poor stomach was a battle field of bruises. I had staff visits 24/7 and mountains of paperwork. Oh, and then there were days when I couldn’t keep food and drink down.
If you’re wondering how my Thanksgiving and Christmas was, the dry toast and ginger ale were delicious!
By the end of December I had lost close to 50 pounds, my hair was growing back and my nail beds were a healthy pink. The doctors had saved my leg and kidney and actually my life as well. I still had my elephant legs though and could not maneuver in and out of bed. They were both still sore and sensitive. The right leg was one huge open wound.
By now, I had become the temporary proud owner of a wound vac machine. And the start of my 6 debridement surgeries had begun.
That wound vac machine was an adventure all on its own! The staff had asked me where they could safely handle and maneuver my right leg without hurting me.
I replied, “DON’T LOOK AT IT; DON’T TOUCH IT OR EVEN BREATHE ON IT”
That answer didn’t work. So I told them my big toe and the bottom of my heel. It took five nurses to do the hour and half dressing changes. Two held up my leg, two did the dressing change, and one was the errand runner and got supplies as needed.
They wore full surgical gowns, face masks and lots of gloves. The dressing changes were done every other day. The anxiety and pain that were involved with each change led me to being heavily medicated, with sedatives and pain killers.
Between the scheduled meds and the PRN’s I was seeing floating triangles all around my room. I cut back on the PRN’s and endured the pain.
With everything that was going on, I was homesick. A nurse had given me a lamb chop doll. And that doll literally became my sacrificial lamb, my confident in scary times, and my comforter/companion at night. Lamb chop was beaten up, squeezed, and slammed against bed and side bars as I dealt with the pain during the changes. She became my gag as I screamed in pain. And when I cried she was used to wipe away the tears.
It always amazed me when the nurses would see this and say, “poor Lamb Chop.” And I would always say right back to them, “EXCUSE ME, IT IS POOR ME!”
During those terrible times my Lamb Chop even provided us with laughter. Lamb Chop sits on my filing cabinet now by my desk.
It is a wonder how a stuffed doll was such a comfort to me as I went through my own private hell.
Ok, on to the new-year:
By January I was back in the ambulance and heading for Lancaster Regional Medical Center. It was here I found the beginning of hope. I built up my endurance with sessions of therapy twice a day, and by now I was able to walk a few feet using a walker. I had various doctors coming to visit me in the evenings, and was still the proud temporary owner of that wound vac machine. And they continued those six debridement surgeries with Lamb Chop tightly by my side.
It was here I met Carol.
Carol was the one who showed me that light at the end of the tunnel. She had faith that I was going to get through this. Carol was able to bring vanity back into my life, and helped me discover I wasn’t a 99-year-old woman anymore.
She had the answers about my elephant legs. She told me about this condition called lymphedema. I had never heard this word before. I Goggled it, and a whole new world opened up. I discovered I had textbook secondary lymphedema. I started learning about my lymphatic system, my lymphatic fluid and lymph nodes. I read about how bacteria entered through my open wounds and infected my vessels. This caused circulation issues leading to swelling of my poor legs. I learned it was long term and chronic with no known cure.
I had learned a lot while at Lancaster Regional!
After being there for about a month, I went back into the ambulance. I was headed for Conestoga View, a nursing/rehab center. The doctors had told me I would be in rehab here for 3 to 5 months before I could go home. I made a mental note that three months was going to be long enough!
This stop, my third one, was the hardest to adjust to. I instantly had three strangers as roommates in various stages of dementia. Bright lights. Bed alarms. Hearing cries of confusion at all times day or night along with constant staff interruptions.
By now I had lost 60 pounds and was using a walker with an aide by my side. My legs were both still huge and I needed help as they would lift them into my bed. I was given a new set of wheels in a wheel chair. It was motivation for me to finally have a chance to gain some freedom back.
When I first met my Occupational and Physical therapists I told them to make me sweat and to not hold back. I even wanted homework that I could do by my bedside. They accepted my challenge. Through my Occupational Therapist I rediscovered putting on socks, folding laundry, washing dishes, and standing. I did lots of standing.
And as my roommates watched TV and slept, I did exercises in and by my bed. And slowly reclaimed my life.
I hadn’t been home now in 4 months. I was homesick and still discouraged at times. I missed my privacy, Denny, and the farm house. During one of his visits he must have sensed my home sickness and he told me, ”Ya know, short grub (that’s his nickname for me, it’s from a old John Wayne movie), Ya know, short grub, it will be nice to have you home again; I am tired of sharing you with the medical world.”
That one sentence kept me going till the end of April!
I continued to work on my endurance, standing solo. Ten minutes was my therapist’s goal. I struggled at 2 minutes, then overcoming that, I got stronger, reaching my goal and beyond. My walking with a walker kept improving. I would use it in my room. Then down the hallway past the nurses’ station and beyond.
The nurses on my floor became cheer leaders. With every accomplishment no matter how small they encouraged me on! My Physical Therapist’s name was Anne. She specialized in lymphedema. She explained the leg wraps and massages. She would come to my bedside for 2 hours every day doing the various massages on my stomach and legs. Then wrapping them with miles and miles of special leg wraps.
Within 2 months Anne reduced my left leg 40 percent. Miracles of miracles I could put one of my legs in bed all by myself! My right leg, well, I was still temporary owner to that wound vac machine. I was still using the picc line and going throug the last of my debridement surgeries. I was still having allergic reactions to medications, dealing with hour-long wound care sessions, needing sedatives and pain meds, and abusing my Sacrificial Lamb. BUT, it took only 2 staff now. I knew I was getting better!
By March I had lost 80 pounds. They pulled out the picc line in my arm. They discontinued those HEPARIN shots. Wish you could have seen how excited I was that day. I was now walking and shuffling without a walker. Anne had taught me to do the lymph massages by myself. That freed her up so she could focus on the leg wraps and get me to go up and down steps.
I was now wearing sweats and socks. And for the first time in two years wearing my sneakers. It was an exciting time for me!
In April I was issued a challenge. They would remove the wound vac machine for 2 weeks and I would take care of my wound by myself. I was thrilled for the challenge because it was a step towards going home!
The nurses brought in the supplies I would need. They showed me what to do. For the first time since December Lamb Chop was sitting on the sidelines watching!
I am proud to tell you I excelled in wound care. The wound vac machine was gone for good. I was walking short distances and the walker was taken away. I was now parking my wheelchair in central locations and walking around. My cheerleaders the nurses were telling me it was time to get me home!
I had one more challenge of walking on unsteady ground outside. Anne took me out and within 2 days the goal was completed. I asked Anne to start discharge orders. And the goal was April 29th on going home.
They had told me I would be here 3-5 months . I did it in 3 and a half, yah!
Denny said he would be there at 10:30am on that Friday. My chant for the last week was “Next Friday 10:30, bye bye.” Guess what! He came at 10:25 am to be exact!
I left there with 11 bags full of clothes and leg wrappings along with one huge box of wound care supplies. The drive home was amazing: the grass was so green, the sky so blue. I was going home! I cried tears of joy and Denny smiled and handed me his hanky!
My new routine was filled with weekly visits from the local VNA, phone calls to doctor offices, filling out insurance forms, wound care twice a day. Then there was lymph massages, leg wrappings and exercises.
On one of the first few days after I got home I was struggling with my tube-grip stockings, huffing and puffing .and getting frustrated. Denny commented he needed to make a mini movie of it and sell it on eBay as comic relief. You know having a partner who supports you 1000 percent is highly recommended!
I found another challenge during that first week: laundry. It was 13 steps down and 13 steps back to the basement. I am thrilled to report I did a load of whites for the first time in 3 years.
I have now lost over 100 pounds. I feel 10 years younger. I had gotten a perm and a manicure. My wound is shrinking and I am maintaining my left leg where Anne had gotten it. I am in heaven!
I became a patient of the Ephrata Wound care center and they eye-balled my open wound every two weeks. They in turn had me go to the Cocalico Health Center for lymphedema care to continue on where Anne had left off.
By mid June I had settled into home life, daily routine and I had lost 50 more pounds . Even with all the support Denny and my family were giving me, I still needed a support group. I searched online for one. After a few failed attempts, I decided to make my own group; this has led me to creating my own blog and writing several online articles for various web sites.
In mid July I had started up the daily trip to the CoCalico Center. It was here where a lady named Linda took up where Anne had left off.
Even with the treatments 4 times a week at times my lymphedema seems to have a mind of its own. I still get frustrated and reach out to my sacrificial Lamb. And side by side we do the massages and wraps, gaining control once again of the swelling.
I am here to tell you that if you have lymphedema you need to be nice to your lymph nodes and they will be nice to you.
Thank you.
