Remember when I encouraged you to vote for Jenna, an Iowa City dialysis patient, in the Davita.com Kidney Idol contest? She won, as I told you awhile back, and I just found a great photo and and article about Jenna. Read it here
The last couple of treatments have gone fairly well and (I’m almost afeared to type the words because of the jinx factor – and please don’t read the following aloud for the same reason) the swelling in my legs has subsided, if not left entirely.
The cranky nodules are still there and still extremely hard – and tender – to the touch, but the overall area on both thighs is less. The anibiotics have been discontinued and I’m about out of pain pills, so it’s damn well time for this stuff to subside, doncha think?
I need to start building my stamina again, so many weeks of near inactivity can really hurt and it has. I’m going to continue ordering the groceries in because I know I’d be on my last legs (how ironic is that?) were I to do the grocery rounds in-store.
The infiltration at the fistula is still painful, but the swelling there has lessened as well, but lordy, lordy the bruise. It amazes me that such bruises can raise and disappear. Being on blood thinners, of course, doesn’t help. Again, here I sit with this purple/black swath of bruise covering my left bicep about 270 degrees. No shortsleeves for me, unless I’m looking for an outpouring of sympathy.
I did make it to knitting Wednesday evening though not Saturday. I opted to take an early dialysis time slot and by the time I woke on Saturday, knitting was not going to happen.
Wednesday’s group was fun, as it almost always is. We had quite a few knitters there, including two new to the group. When it came time – 8 p.m. – for the coffeeshop to close its doors, I wasn’t ready to go home yet so I put out a general call to continue the knit at Barnes & Noble.
Laurie took me up on the offer and we had a great conversation. I hope I didn’t burden her, but it was good to have someone to talk to about things I find difficult to talk with Mom about, some philosophical (when is enough enough?), some that might be scary for Mom to face (like what would happen if I should die before she does), etc. Thanks for listening, Laurie.
And just so you know we weren’t totally morbid, we spent some time browsing over a book of knitted toy patterns. I’ve got a surrogate granddaughter who’s crazy about cows right now….hmmm, who’d have ever thought I’d be contemplating knitting a cow. Of course there are just the cutest pigs and horses and ark animals and mermaids, oh my.
I did post earlier this week, comma but … when I moved the post to the live site, only one sentence appeared. Don’t know whether it was my goof or a Word Press glitch, but when in doubt blame it on operator error.
I’m still fighting the fluid build up in my legs and have little more from the doctors about what it is or what’s causing it. The latest speculation is that the sore nodules are calcium deposits which, according to the doctor, can scar blood vessels. She suggested I might want to schedule another appointment at Mayo’s to see if they can pinpoint the problem.
First I have to confirm that a Mayo workup would be covered by my insurance ’cause I certainly couldn’t afford it on my own.
The forced inactivity to keep my legs elevated is driving me a bit buggers. The best results come from lying flat in bed with my legs propped on pillows. Come on. What can you do in that position besides snooze on and off? I’ve never been able to read in bed. Not sure why, but I just can’t. And knitting isn’t really possible in that position.
I’m not back to work full time yet, but I have made it 4 out of 5 days this week although the hours have been abbreviated.
The last treatment was disappointing. We did get the fistula working – both needles – although the numbing cream didn’t work very well so the first needle going in was painful, but we pushed through the pain go get it established. Nurse Sue numbed the area via a lidocaine shot for the second needle so it went in more easily.
I seemed to be trying to clot the lines or dialyzer again, but we got to 4 minutes left of the 41/2 hour treatment without too much problem when the top needle blew. I don’t know why. I wasn’t trying to move my arm and don’t think I did, but blow it did and it was extremely painful. As in I couldn’t not verbalize and I think a few mild obscenities crossed my lips. A 17 gauge needle twitching around inside your arm is not something I want to repeat very often.
Of course, there were three of us all coming off the machines at the same time so it was hectic and, of course, just to complicate things further my blood pressure bottomed out at the same time. And of course, the needle site is infiltrated to the tune of swelling “bigger than a baseball,” according to Mom. And it hurts.
The hidden blessing, she said with tongue firmly in cheek, is that the pain at the needle site distracts from the pain in my legs.
The last week has been – actually, I don’t know how to describe it – wearisome, oh, yeah. Frustrating, you bet. Long, my, oh my, yes.
Monday was relatively OK. The groceries were delivered and quite satisfactorily. I was glad to have saved myself the physical stress and pain from that.
Tuesday, I was really tired at work but managed to make it through the day. Stopped by the house to apply the emla cream, take a pain killer and a dose of the antibiotic. I sat down in the recliner for a few minutes and really didn’t want to get up to go to treatment. My legs were already starting to cramp.
I got to treatment and was dragging, almost literally, several people in the waiting room commented that I didn’t look like I felt well. I didn’t. I got settled in the recliner and offered my arm up for poking and it hurt. Pretty damn bad, both the old and the new. I felt sorry for the nurse cannulating because I know she’s almost an empath and cringes every time she hurts someone.
It was like every nerve in my body was jangling and zapping. Every place that hurts hurt worse than normal and some places that hardly ever hurt were screaming for relief.
My temp was OK. At least at the beginning of the treatment. About midway I started asking for sheets over my plush throw. I had three of them piled up and was still shivering. When you feel that bad, every minute seems at least an hour long.
When the treatment finally crept into only a half hour left, they took my temperature and found it to be 99.9. Ahhh! Sounds like maybe there is/was an infection in my thighs. Something nasty marching through my already embattled body.
99.9 doesn’t seem particularly high, but I normally run low at 97.4 Anyway, high or low, the fever had me feeling lousy. And the thighs, of course, still swollen and even more tender to the touch.
Home to pain pills, hot packs, night meds, insulin shot, antibiotic dose, some time in the recliner before bed.
I stayed home from work Wednesday. Stayed home from knitting group, too (the third time in the last two weeks). Just didn’t have the strength to go. I was still a bit feverish and the pain, especially in the swollen thighs, was still pretty high. The fluid pocket area, in fact, was warm to the touch, another indication of a possible infection.
Stayed home from work Thursday because the pain was still prodigious, especially when I tried to bend my legs. I was also hoping that another couple of days with my legs elevated might start shifting the fluid away (up, hopefully) from my thighs.
Thursday’s dialysis started out better: We got both needles in the arm. This is good, I thought. I wore loose-fitting velour trousers so I could pull them up past my thigh and Nurse Practitioner Jodi could see them. She thought the heat was less in the legs, but commented that the hard nodules looked almost bruised. Continue the warm packs and leg elevation and probably do a second course of the antibiotics.
Still no official word on what it might be. The ultrasound revealed no blood clots and no cellulitis. The best guess is leaning to simply fluid pockets. Whine, whine, whine: I want them gone!
So, in the midst of talking with Jodi, I reached up – with both hands – to adjust my glasses and promptly blew the venous needle and that infiltration did a number on the arterial, too. My reaction as I was making the motion was, “Shit, Kathy, how stupid can you get?”
My left bicep looks like a 5-inch wide deep purple/black slave bracelet wrapping at 240 degrees around the arm. It’s sore to the touch, too. So now I’m warm packing the legs and the left bicep.
I’ve had enough sitting at home mentally chained to a recliner and one or two heating pads. I love knitting and have done quite a bit during my enforced quietude, but it’s getting a little old now, especially doing it so much in solitare.
So, I did break out of the house Saturday morning to meet with my knitting group. Das ist gut!
Saturday was the big day. The fistula passed its first double test. Both needles in the arm and the permacath languishing in disuse. It was a surpise to me that we were going to use both needles, but why not give it a try if the nurses think it’s appropriate?
The swelling in my thighs is still a mystery but at this time the pain seems to be in better control. I’m taking hydrocodone and know it’s working mainly because I can feel when it’s about to run its course.
Jodi, the nurse practitioner, added a prescription for an antibiotic mainly, I think, to stem off infection. I certainly wish I knew what was going on with them. The heat treatment and elevation seem to be helping somewhat, but I’m feeling pretty well tied to home.
Trying something new this week, too. I did my grocery shopping online. The food is to be delivered this afternoon for a $15 delivery charge. If their choices in produce and fruit are acceptable, this may well end up the new way for me to go grocery shopping.
It took quite a long session online to get the order together and placed, but I did it in several chunks to allow time to keep my legs elevated. Grocery shopping is one of my least favorite chores, so this may prove a true win-win situation.