The first day this blog was available to readers was October 29, 2007, so it’s nearly the one-year anniversary. My blog stats say there have been around 16,000 views in that time (mine don’t count) so there are more than several out there following my journey.
The journey – in search of a kidney transplant – has taken some definite detours, but I’m still hoping to one day have a transplant to free me from dialysis.
The early days of this blog followed my assessment appointments at Mayo Clinic. I have no recent news from them, but I also have not contacted them since losing all their records in the June flood here in Cedar Rapids.
How different my life is from a year ago. When I stop to think about it, it can be overwhelming.
I began experiencing vascular problems (I know now) with my right leg in January of this year. By June the vascular problems had become severe. Then the flood hit and wiped out our apartment and belongings. By the end of July, I was in the hospital. Two months and 3 operations later, I came out of the hospital alive but with my right leg amputated below the knee.
I’m now trying to reconstruct my life… one day at a time. Frankly, it’s too much to comprehend any other way. I’m trying hard not to give up, tempting though that is, and doing what I can to keep on keeping on.
I want and need to go back to work.
I want and need to find purpose.
I want and need to find laughter.
I want and need to be connected.
Here it is Sunday morning and I find myself in front of the computer. Basically, it’s killing time I am. Thought maybe I’d let my hands do some meandering and see if I can peel back some of the layers of things on my mind.
I may just wander verbally without peeling anything.
I’m a little worried that my blood is being thinned too much for dialysis. I’m springing a leak far too often for my liking after treatment these days. It seems the choice is thin the blood to the tune of 10 mg of coumidin a day and 15,000 units of heparin per treatment or spend treatment dealing with a machine clotting off because my blood is full of infinitesimal clots only the dialyzor seems to pick up.
What happens when I spring a leak? Well, I bleed at the access points on my left bicep. Generally, it’s the lower or arterial access that springs the leak.
For those of you observing rather than living dialysis, inch and a quarter, large gauge blunt needles are pushed into the two buttonhole access points in my left arm and the blood leaves my body through the attached tubing and goes into the machine where it is cleansed of waste products and fluid in the dialyzor. Once the cleansing is complete, the clean blood is returned to my body through the other access point.
The process takes 4 hours on the machine (15 to 20 minutes to set the machine and patient up not included and take off time not included). When treatment is over and the nurse takes me off the machine, the needles are pulled one at at time. Four by four sterile pads are quickly placed over the opening and plastic clamps applied over and around the bicep to compress and hopefully stem the flow of blood from the access points.
Hold time for the clamps is usually about 10 minutes then the clamps are removed and the access site, with the sterile pad, is taped tightly to the bicep to keep the blood from flowing again. Also, in my case, “tip stops” are added before the initial clamping. They are a little cup-like apparatus on tape. The small cup area is filled, I’ve been told, with some kind of seaweed derivative that promotes clotting.
I’ve been holding for 15 minutes. Ten will stop the bleeding, until I attempt to use my left arm in any way. Once I do, I spring a leak and the blood flows like water. Then it’s try to stop the bleeding again for another 10 minutes or so and hope the combination of more clamping and not using the arm for another half hour to 45 minutes will keep me from bleeding.
One of the problems with that is the need to transfer from the recliners patients sit in during dialysis back to my wheelchair. The recliners are difficult to transfer in to because they are several inches higher than the wheelchair. Getting into them is a literal uphill battle.
That would seem to make sliding out a breeze, but not exactly so when other factors come into play: 1. The recliner is also too high for me to have my feet on the floor when my legs are let down. That means I have to push myself to the edge of the recliner, not an easy task using only one arm. 2. The angle of the slide board into the chair approaches 45 degrees and it’s a leap of faith I’ve not been able to take to simply slide without trying to control the speed with an arm and hand on the wheelchair arm. My left leg is my only remaining leg, so I tend to want to brace with my left arm as well, especially since the transfer involves a partial pivot either by foot or rear end once I’m in the chair. By that time, I’ve sprung a leak.
The last two times, we’ve had me hold for at least 15 minutes and had nursing staff help with the transfer to the chair (helping to control the speed and holding me under the left armpit to keep me from using my left arm. The first time, I still sprung a leak. The second time we transferred me to the chair after removing the tubing from the needles but leaving the needles placed in my arm and then clamping and holding for 15 minutes. Leaving the needles in my arm was a scary thought, but it did seem to work better than removing them first.
I’ve been wondering the past few weeks how I ever managed to do dialysis while I was working full time. I know it takes more time now because I’m unable to drive myself. I leave here about 10 a.m. and return about 4:30 p.m. But it also seems the process tires me more and leaves me with a lingering dull headache.
A friend tells me I have to remember that I was hospitalized for 2 solid months and that it takes longer than 2 months to regain strength. The headaches are probably partially due to not being able to eat during dialysis. Eating can make you nauseous and must interfere with the effectiveness of treatments.
Of course, the not eating at a normal lunch time can be hard on controlling blood sugars. It seems the dialysis takes priority over the diabetes on that one. I eat breakfast about 8:30 a.m. and take a couple of graham crackers to eat just before I’m put on the dialysis machine (usually at 11 a.m.). I’m also going to start taking a piece of fruit or something small to snack on at 3:30 or so when I’m off the machine and clamped to stem the blood flow. Supper is usually at 5:30
Dealing with renal and or diabetic diets in a “community living” situation is a topic for another post. It ain’t easy. I am losing some weight, though, very slowly and it’s not simply weight lost because my leg is gone. (grin)
Good advice and truly the only way to live, when you think about it.
All you can really handle is the present, worry as we might about the future. Hear me saying that? Hear me trying to believe that? You’re right I am. It’s easier to say than to believe, or perhaps not believe and live “as if.”
Borrowing trouble, it’s called, I know and if I could quit doing that and have faith that things will work out, I’d probably be sleeping better. Anyone have any ideas on how to do that?
Meanwhile, back at the therapy sessions: I walked a total of about 70 feet Thursday and the physical therapist and I tried the commode over the stool in the bathroom and did a couple of approaches with the walker and prosthetic.
I know I’m getting stronger and I know things will get easier, but as is my constant refrain of late, I’m antsy to get on with it. I’m wanting to regain some of my independence and take some of the burden from my mom.
Mom has been an amazing help. There aren’t many nearing the age of 90 who would or could take on the assistance I need. One thing is sure, our evening good nights are even more tender than they once were. I do so appreciate her help. Who would think that she’d once again be wiping her baby’s bottom when the baby is nearly 62 years old.
She’s a great cheerleader,too, encouraging my progress and helping to keep my spirits up when they begin to flag. She’ll brook no talk of giving up and I usually agree with her. I also know I’m sometimes my most harsh critic and tend to beat myself up mentally for what I consider less than my best effort.
The therapists tell me they are impressed with my motivation. I wish they could categorize that and show it to me because there are times I question my motivation, times I wonder how I’m going to keep going, keep pushing and analyze the results.
Again, it’s that one day at a time thing. It feels more like I’m just trying to make it through the day and I guess that’s what many or most are doing, too.
Do you know walking 25 feet twice with a new prosthetic can wear you out? It can.
I did the 25 X 2 latish this afternoon. Maybe that’s why it made me close to breaking out in a sweat.
I also put the prosthesis on this morning during occupational therapy and stood at the kitchen sink for a couple of minutes twice. May not seem like much, but it is progress. I actually raised both arms from the death grip, too … one at a time, of course. Have to work on trusting my balance, too, and that I’m not going to topple.
I also turned 180 degrees during the walks this afternoon and managed not to fall. Again, progress.
I’m at the computer for a quick blog update now and then checking out the state medicaid site since I received notification that I was rejected for the assistance. I plan to appeal.
I also waited in vain for a call from the Social Security office this morning. Why? Well, I had the day confused. I’d thought we’d set the call for today when it was actually set for tomorrow. Ooops! I called the office after waiting about a half hour and checking the letter they’d sent me. I re-set to telephone appointment for 9:45 a.m. Thursday, Oct. 30.
Sleep was pretty elusive again last night. I wish I could make that better and get a solid 8 hours. I seem to yawn and yawn and nearly fall asleep until I actually get into bed and then even with sleeping pills it seems to take a long time for me to fall asleep. Once asleep, I’m waking what seems hours earlier than necessary and trying unsuccessfully to fall back asleep until it’s time to get up (a little after 6 a.m. so Mom can help me get ready for the day before we both go down for breakfast).
I think my mind is just too wound up with everything to allow me to fall asleep easily most nights. Too many thoughts, too many uncertainties, too many questions and concerns. Can’t seem to just let go and let things happen.
I am working on the “as if” aspect of life but it is, of course, still difficult and will be for quite some time, I’m sure, but it takes little time to read the inspirational message in the mornings. I’ve been reading it twice and seeing if there seems to be some message for me. Baby steps, you know.
Just as in the walking with the prosthesis and the exercising. I’m not going to say I’ve been the absolute best at doing the upper body and leg exercises OT and PT have laid out for me, but I have been doing at least a set of each each day and wheelchair pushups, too. I’ve been slowly increasing reps or hold times, too, and I do notice I’m stronger day by day.
It all takes so much time, which, of course, the therapists assure me will decrease drastically sooner than I think. But i get antsy with myself and the apartment is small, TV isn’t holding my interest and I still haven’t picked up my knitting again so I’m going a bit stir crazy on top of everything else.
Dialysis takes big whopping chunks out of my time, too, though I know intellectually that it saves my life. Still, 3 entire days each week stultifying. Some days it’s a real internal battle just to make it to treatment. Strange isn’t it, when you know full well that those treatments are not just important but absolutely necessary to life.
I need to make it a point to do something fun or get out of here this coming weekend. I’ll work on that. See if I can find a friend with a regular car to take me shopping or get my hair cut or go to a movie. I need the break, I think.
among the wonderful things that happened today was a package I received in the mail from Alecia, my great good friend who’s been so helpful to me since the surgeries and amputation. What a surprise: A beautiful hand knit vest her daughter, Kristin, sent to me from Michigan.
I had asked Alecia to see if she could keep her eyes open for some sweater vests for me to wear during dialysis. Kristin, “Sis,” knit the vest for herself but had never worn it so she sent it to her mom to send to me. It’s gorgeous colors – blues, lavender, turquoise, shots of rusty orange, too – in a diagonal stripe. I’m not sure I can bring myself to wear it to dialysis and chance bleeding on it.
My blood is pretty thin at the moment since I’m taking 10 mg of coumidin daily and they give me 15,000 units of heperin before each treatment so when dialysis is over and I transfer back to my wheelchair from the recliner, I’ve been just as likely to “spring a leak” from one of the access points as not. That means a pretty liberal flow of blood from my left bicep. Perfect for dialysis as the beautiful vest is, I’m not sure I’m ready to chance it.
Well, I’d better scat over to the state medicaid site and check out what it will take to appeal their rejection of my application.
For the rest of the night and tomorrow, I intend to keep fighting the good fight.
Let’s back up and start with Friday when Sherry from Great Plains Orthotics and Prosthetics stopped by to look at my malfunctioning prosthetic. The problem, she determined after talking with the tech who constructed the leg, had to do with the plastic material forming the receptor for the stump (I still hate that word) spilling into the area where the prongs hold the leg pipe in the cup. The leg needed to go back to the shop. She’ll return the leg Monday morning so it will be usable during Tuesday’s physical therapy session.
Saturday after breakfast I headed in here to the computer area and spent the next six hours wrestling with the online Social Security Administrations Disability Report. It was a rematch since I’d waded through it 51/2 hours one weekend (September 20) while I was in the hospital. When they tell you it will take 21/2 hours to fill out, don’t believe it. Such has not been my experience — twice.
I have qualified for long term disability from my employer’s insurance company, but that company asks that recipients also file for Social Security Disability, which I thought I’d done. Last week, to confirm I’d submitted online, I called the local SS office. When they checked the database, they found the report had never submitted and suggested I try online again before a Tuesday phone appointment with their office.
I fully intend to use the insurance company’s free service to help guide people through applying for SS disability.
Be prepared with med lists, side effects lists, doc appointment records, hospital stays, work records for the last 15 years etc. I know even after 6 hours on Saturday, I’ll have more to add Tuesday (some of my medicines didn’t seem to register).
The forms are also highly repetitive and frustrating, at least that’s how I found them.
Once I finished the report, a message followed saying that it was simply the report and I now have to fill out the disability application. I didn’t have the heart to go on to that.
I also got notification this week that the state has denied my first application for Medicaid assistance. I understand their explanation is that since the flood, too many people have applied and I’ll have to “wait my turn.” I have 15 days to file an appeal. Usual denial rate is 3 times, I’ve been told. Persistence counts, I guess.
Say a little prayer for me, I’m off to check out the SS application.
It was early yesterday, not bright but early, when Jim showed up at the apartment door with my first prosthetic in hand. He plopped on the floor in the kitchen area and began tinkering with the post holding the foot to the knee cup. Adjusting the alignment allows him to make the leg operate more successfully for me, he said, and that allows better balance.
The physical therapist arrived a few minutes later. Jim added a silicon-lined sleeve to the inside of the prosthetic and then slipped one on my stump (I hate that word) and smoothed the air out of it. I’ll need to keep the air smoothed from it, he said, to keep the stump from filling in those areas as it shrinks to fit into the prosthetic.
To keep the fit tight and the prosthetic on my leg, socks will be added to fill the gap between my leg and the plastic cup cradling my knee. He added a shoe to the prosthetic and a shoe to my left foot. The shoe is 2+ sizes smaller than the shoe I had been wearing and is a diabetic shoe (no seams on the inside of the shoe to rub against my toes or foot. I have to be especially judicious with my left foot since it now will carrying the majority of the load for me.
“I told you you’re going to walk today,” Jim said. And so I did. 10 feet down the path of the rest of my life.
It was scary and thrilling all at the same time. Learning the gait will take time, I know, but there was no pain in my right leg. Some in my left knee because I need to build strength there and keep it working to stave off more arthritis.
I was a bit wobbly, but wobbly’s better than not trying at all.
I feel better about things and a little more hopeful.
Today’s shower helped, too. It’s amazing how little things add up to make life better. It took time and instruction and help from the occupational therapist, but here I sit nice and clean and smelling fresh.
Things are good today and I see the physical therapist at 2. I think for another short walk.
I’ve been home for two weeks today and things are going fairly well, quite well, according to my visiting nurse. She tells me things are going very well and that I need to be patient with myself.
Tomorrow – 8 in the morning – the physical therapist and the prosthetist (sp?) will be here for the first fitting on the prosthetic. That should help with balance etc. I’m getting stronger day by day and I really need to because we need to be rid of the commode for one thing. It takes up too much room, necessary as it is. We also need to be rid of a couple of small tables in the living room and get a TV up on the wall. We need a digital TV anyway.
We’ll also need to have another handicapped bar installed in the bathroom and I need to learn to stand and pivot to use the stool. Thursday, according to my occupational therapist will be a red letter day – a shower and a head wash.
Mom and I have been doing sponge bathes, but it’s difficult to wash your hair with a washrag. Needless to say, I’m looking forward to sudsing my hair, which by the way, seems the worse for wear from all the medicines and probably the shock to my system. I think I need to get it all cut off and in a buzz just for the ease of care. Not that much shorter than I usually wear it.
Sleep has been somewhat difficult to come by sometimes even with sleeping pills. The night time hours can get fairly long and dark and filled with questions and questioning.
I’m going to try to make it down here to this computer more often. I need to find things to do with my time other than TV, which is so incredibly bad it’s astounding and makes me antsy just to be wasting time watching it. I do have a laptop in a box in the room, but I haven’t found time yet to try to put it together and I may need to call in some help doing so.
I haven’t picked up my knitting yet. It just seems so crowded in the apartment right now and I’m sure a part of it is feeling tied to the apartment. I have to start working on that as well as the physical exercises. Life is more difficult now, there’s no lie to that, but I can only be bound as much as I allow myself to be bound.
I need to repeat that over and over and I need to live it.
I need to avoid the trap of resentment and start doing gratitudes: I’m alive; life’s not over; there’s still much potential to explore.
Twelve Step programs tell participants to “act as if.” Even if at this time you do not believe in a higher power, act as if you do. I’m gong to try that in my life. I don’t know if I believe in a higher power, but I do have to believe there is some meaning to life and I know I’ll learn much from this journey. What, I may not be sure, but I’m sure there will be much.
I’m facing some hard facts now. I know already that I’ve lost much of my independence and I’m trying to be gracious (boy, that’s certainly not the word I really want) in asking for and accepting help, both physically and emotionally. I am talking with friends about my feelings, not hiding them and I am trying to draw from their strengths.
One friend, when I told her of spending a half hour or more just repeating “thank you” to myself not sure whether I believed in my thank yous to a higher power, said “they say even a fake smile releases endorphins” so maybe the thank yous carry some sort of “acting as if” weight. Repeat it often enough and make it so. Please.
If you’re out there and you’re struggling, too, please comment. I feel very alone sometimes.