just stuff

I’m not in much mood to write a post today. And I suppose I could just not write anything. Nobody has a paid subscription guaranteeing a publishable post. I’m on no program mandating so many words written per week. But because I’m a trooper (and. It just another pretty face), you’re getting a post whether you want one or not.

There has been so much going on since last Monday (and I’m not even considering what Dingy Donny, J(ust) D(umb), and the South African American immigrant were up to) . I already told you the biggest news, the loss of little Jingle. When Jingle first went to live with the daughter he was more than a handful. It wasn’t too terribly long before he was acting only like a little terror and a few more months until he because a reasonably well-behaved canine gentleman. He will be missed.

Thing  Two also was brought up in Thursday’s post. That was an already planned procedure that took way too long. It was a simple enough thing. A little quickly rerouting of a vein in my arm. We got to the hooray at 9am and left at 5:15 that afternoon for a roughly hour long procedure. To facilitate the actual surgery I was given a nerve block which rendered my arm absolutely useless for 2 days. Not just numb, but dead weight hanging off my shoulder. I had to carry my arm around in a sling or I’d leave it behind.

Item the third has been this headache I’ve been carrying around for the last 4 days. I used to be subject to terrible vascular headaches. Nothing helped. Somewhere along the way, while is was researching something at the hospital, I came across an old article (older than me even) that described very low doses of an old, old antidepressant (which was probably newfangled when the article was written) to treat headaches. I convinced my PCP it made sense to try it and if it didn’t make sense to her I knew a lot of other doctors I could go to. (These were really annoying headaches and I was not above threatening taking my medical business elsewhere.) Well…to make a long story short (I know, too late), the pills worked. Until Thursday.

And finally, I really want some ice cream.

There. Now you have your post, and in the process I actually feel a little better. It’s odd becuase there weren’t a lot of positive things mentioned and that’s a sure-fire way of feeling calmer and at peace. (Is that sure-fire or sure-fired?) Oddly enough, we wrote about feeling calm and at peace in last week’s Uplift. Take a look at Location, location, location.

While you’re there, consider joining the ROAMcare community and subscribe to have Uplift delivered to your email as soon as it hits the website. In addition to an Uplift release every Wednesday, you will also receive weekly our Monday Moment of Motivation and the email exclusive Flashback Friday repost of one of our most loved publications every Friday. All free and available now at ROAMcare.org.

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We Tried

I wish I had a happier update to pass along but last Thursday we lost the kidney. We knew we were entering unfriendly waters, weren’t certain it was going to take and had the best team we could want, but the transplant was not meant to be. They all aren’t. Even something with a 97% chance of happening flawlessly has a 3% shot of not working at all. I suppose you could say the long shot came in. I can tell you what happened but people are still working on the why to go with it.

On the first implant, the donor kidney almost immediately picked up color indicating blood was flowing through it. By the following morning blood flow could not be detected and an ultrasound indicated a possible clot in the artery leading to new to me kidney. The decision was made to go back inside me, remove the kidney, clean things up, then return it. This is where we were at the most recent post.

For the next two days, various imaging tests indicated blood flow to be good, marginal, or inadequate – not consistently nor in that order any given time returning any of those results. But laboratory tests indicated an improved renal function. It raised questions. It can happen, in fact it’s not unusual that flow and function decrease or diverge in the first week after transplant. After a week though, results continued to show too much discrepancy between lab function and imaging. After much consultation and while considering risks versus benefits it was decided the only conclusive answer would be achieved by actually exploring the area and physically examining the kidney.

It was found that blood was flowing into the kidney but not through the kidney. The small veins inside the kidney were again clotted, turning the kidney into an anatomical water balloon. The danger of rupture resulting in peritonitis was too great and the kidney had to be removed.

Now that kidney is being examined by pathologists to try to determine the cause. Was there a defect in the kidney making it prone to clot, is there an undiscovered defect in my blood making it prone to clot, or was there a combination of immeasurable or unknown factors resulting in the clots.

The disappointment is huge but the potential is great. If there is something organically “wrong” with that kidney these events might have happened to it while it still resided in my sister potentially rupturing in her and causing her all sorts of untold problems. If there is a defect in my blood it could be that a potential life threatening condition might now be identified and treated. If there is a defect caused by the combination of my blood and her kidney it could that mean future donor and transplant candidates may undergo even more rigorous screening for compatibility.

Some consequences are more immediate. I continue to be hospitalized while I recover from these three operations. As an impatient I’ve received dialysis and my response here will aid in determining if upon discharge I return to dialysis at my pre-surgical order and schedule. My sister will continue her post-operative tests and appointments. I may not have been a successful recipient of her kidney but she was a quite successful donor and will now forever bear the scar of her sacrifice.

So the journey does not yet end. We’ve merely come to the inevitable fork in the road. It might be too early to tell which path to take or it might mean neither path is best but a whole new trail must be blazed. Something good will come from this. It might not be the result that we wanted but “good” and “want” are not guaranteed to overlap. Stay tuned.


Transplant Journey Posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)
Step 4: The List (July 12, 2018)
Step 1 Again…The Donor Perspective (Sept 6, 2018)
And The Wait Goes On (Oct. 18, 2018)
Caution: Rough Road Ahead (Nov. 19, 2018)
And The Wait Goes On (Jan. 24, 2019)
A Worldbeater of a Story (March 14, 2019)
Spare Part (May 22, 2019)

Close But No Cigar -Yet (June 2, 2019)

Other Related Posts

Walk This Way…or That (March 9, 2017)
Looking Good (May 18, 2017)
Technical Resistance (May 25, 2017)
Those Who Should Know Better (July 24, 2017)
Cramming for Finals (May 3, 2018)
Make Mine Rare. Or Not (Feb. 28, 2019)
Parts is Parts (May 6, 2019)

Close But No Cigar – Yet

If things went according to plan this should be Day 5 for me as an official kidney transplant recipient. Actually I don’t know if that’s an official designation. I don’t believe it comes with a membership card or even a secret handshake although it is an ever growing cohort.

I started with that “If things went according to plan” because we have somewhat deviated from that plan. Sometimes things are going to go as well as a textbook procedure, maybe with a minor glitch creating a minor challenge that makes a learning opportunity for everyone. Then there are the things that happen to me.

Sometime last Wednesday a kidney was removed from my donor angel, walked into the operating room next door to that activity, and placed into my body. It was a moment unlike any other. Literally. The organ was a sewn into place, arteries and veins connected, clamps opened, “dirty” blood flowed in and “clean” blood flowed out one way to be recirculation while waste flowed out as urine to its ultimate elimination. It was working! And it continued to work for about 18 hours. Then the reason consent forms came to be came to be realized.

Without getting into the many reasons that could have caused it to happen, partly because specialists are still trying to determine all of the reasons that might have caused it to happen, the blood stopped flowing. I immediately was prepared to return to the operating room where the kidney was removed, arteries and vessels cleaned of some newly formed blood clots, the kidney bathed in an anticoagulant solution, new ties and connections again attached the new kidney to my old body, and then the cleaning process reestablished although at a less than optimal rate.

The kidney was saved, the kidney was working, but to exactly what degree and for how long is still yet to be determined.

As I am writing this samples of my blood are being sent off for examination into why it is clotting at a rate the would not allow the process to be without the corresponding infusion of anticoagulants. Perhaps in another week I can share the reason or reasons and some resolution for it. Until then I can tell you the good things that have happened.

The earth angel who parted with one of her kidneys for me is well and at home already establishing a new normal that remarkably resembles her old normal and doing it much faster than expected, waiting anxiously and praying devoutly for me to to do likewise. Her former kidney is doing its job well enough that I for the first time in almost 3 years lived through a full week without once being attached to a dialysis machine! And we made the right choice of transplant centers where I have never seen such coordination of care and research happening to see that her kidney successfully transitions to being my kidney in its new forever home.

I am walking and eating and generally being a pest to the doctors asking for more freedom of motion, less dietary restrictions, and answers, please more answers. In general, if asked how I am feeling I am clearly feeling better and stronger than a week ago. But I also know I am not yet out of the woods or out of the the weeds or wherever one gets out of when things are not working at their tip-top-pi-est.

I also feel closer to the donor than I have for not just a week but for almost 57 years. That was how long ago the girl who shared her kidney with me was brought home by my parents and introduced to me as my new little sister. Like most siblings particularly a middle and a youngest, we spent many childhood years fighting for attention. Now we are fighting together and discovering even after all these years, new reasons to get our way. Only now finally a common way! Someday soon we will have our answers and we will get our way. How can I let her down?


Transplant Journey Posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)
Step 4: The List (July 12, 2018)
Step 1 Again…The Donor Perspective (Sept 6, 2018)
And The Wait Goes On (Oct. 18, 2018)
Caution: Rough Road Ahead (Nov. 19, 2018)
And The Wait Goes On (Jan. 24, 2019)
A Worldbeater of a Story (March 14, 2019)
Spare Part (May 22, 2019)

Other Related Posts

Walk This Way…or That (March 9, 2017)
Looking Good (May 18, 2017)
Technical Resistance (May 25, 2017)
Those Who Should Know Better (July 24, 2017)
Cramming for Finals (May 3, 2018)
Make Mine Rare. Or Not (Feb. 28, 2019)
Parts is Parts (May 6, 2019)

Spare Parts

I’ve been terribly inconsistent posting but I have a very good reason for that. I’ve been making room for a new kidney!

In the last kidney update from a couple weeks ago I said I was starting the annual testing to remain on the transplant list. Just as I was starting those we got word that we had a live donor match! In fact we had two!!

Since you’ve come along this far on the journey, please join me for this step.

From some posts on a support group page I took it that multiple matches although not common are neither rare. I suppose there could be two absolutely identical donor candidates. More common is the possibility of multiple “perfect marches” with cadaver donors. That would be because with a cadaverous donation only the organ is considered. With live donors, although multiple kidneys might match they are attached to people still using them and their lives rarely perfectly match. Considerations for age, family obligations, location, post-op support, and probabilities of future health issues not uncovered in the donor evaluation must be made. If there still is no decision then they have decide how they will decide. I suppose in the extreme, say if the potential donors are identical twins, they may go as far as a flip of a coin or rock paper scissors. Our donors aren’t twins and they were able to make a determination without resorting to playground games. They got together, made their decision, and notified the hospital.

That decided, pre-op testing began. For the recipient this is the same as the annual testing with some additional lab studies. For the donor, pre-op tests include only a chest x-ray, EKG, a complete metabolic panel lab study, and a complete blood count (CBC). All these can be done within a 30 day window leading up to surgery except for a “last minute” final blood and tissue typing. Last minute would be within 10 days or so of the tentative transplant date.

At this point that date indeed is still tentative. All these tests and studies will be reviewed again by the transplant team. Only after an affirmative from that review is the date finalized. Even then the surgery can be “unscheduled” by any member of the team, the recipient, or the donor.

The surgeries themselves aren’t difficult procedures considering the lifesaving result. The donor operation begins up to an hour before the recipient. In our transplant center this a robotic procedure controlled by two transplant surgeons in attendance. Long before this the decision was made which kidney will be removed. After its removal the renal arteries and veins are shunted to the remaining kidney, the unused ureter is tied off, and the donor goes to recovery.

KidneyWhile the donor’s surgeons are finishing their procedure the recipient’s receiving location is prepared by a second surgical team. The recipient surgery is performed through an open incision and two attending transplant surgeons, in my case one of them also a urological surgeon, will operate. Unless there is a medically necessary reason, the recipient’s native kidneys are not removed. The donated kidney will be placed in an abdominal lower quadrant, usually the right although in my case because of previous surgeries and that space already occupied, it will be placed in the left lower quadrant. The renal vessels and ureter from the native kidneys are transpositioned and the recipient is closed up and sent off to recover.

Typically the donor remains in the hospital 1 to 3 days, often ambulatory the same day of surgery. The recipient’s stay is usually 3 to 6 days, hopefully walking and building up an appetite on post-op day 1. When they go home there are lots of other things that have to happen for both to live healthy, full lives. After all, that is the point of that.

When we get to that point I’ll be sure to keep you up to date in just as excruciating detail as you have become used to. After all, that’s the point of this.

Oh, when will all that be? Well… our presumptive surgery date is next week! I’ll have my last pre-transplant dialysis on Tuesday then eat ravenously because I am ordered nothing by mouth after midnight, every surgery’s first order.

Then, if all goes well I’ll get a new, slightly used spare part. Stay tuned!

——

Transplant Journey Posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)
Step 4: The List (July 12, 2018)
Step 1 Again…The Donor Perspective (Sept 6, 2018)
And The Wait Goes On (Oct. 18, 2018)
Caution: Rough Road Ahead (Nov. 19, 2018)
And The Wait Goes On (Jan. 24, 2019)
A Worldbeater of a Story (March 14, 2019)

Other Related Posts

Walk This Way…or That (March 9, 2017)
Looking Good (May 18, 2017)
Technical Resistance (May 25, 2017)
Those Who Should Know Better (July 24, 2017)
Cramming for Finals (May 3, 2018)
Make Mine Rare. Or Not (Feb. 28, 2019)
Parts is Parts (May 6, 2019)

 

 

What I Did On My Lost Day

I’m a day late. I’ve been a dollar short for years so that’s not news but the lost day is something I really tried to avoid. I knew yesterday was going to be a potential for not posting so I was going to get something written and scheduled on Wednesday so there would still be some words for you on Thursday. I’m still not so sure why but I felt I should. Unfortunately there was a power outage here Wednesday evening. That’s pretty rare for these parts and I took it as an omen that what I was going to post wasn’t worth the time or energy. I hadn’t given it a thought that my energy provider would have agreed with me so dramatically. Anyway, there would probably still be time on Thursday even considering what I had on tap for me.

Yesterday I had a simple, quick procedure at the hospital. Nothing medical is ever simple or quick but those words are used relative to what could have been. Still it wasn’t quite the whole day lost and I should have been able to write but for a couple issues.

The procedure was scheduled for 12:30 and took about 25 minutes. That should have left a great deal of the day except it didn’t. Here was the actual schedule starting Wednesday evening.

Wednesday
6:30pm – dinner
8:00 – consider a hot snack since I won’t be able to eat after midnight.
8:02 – electricity goes out
8:03 – stub toe in kitchen trying to make peanut butter sandwich
8:04 – apologize to neighbor for language
8:10 – find chair in living room, sit
8:11 – boredom sets in
8:45- give up hope of snack, go to bed

Thursday
12:35am – startled awake by lights, tv, furnace, abruptly coming back on
3:05 – return to sleep
8:00 – wake up, throw away coffee made before remembering restriction not allowing food or drink after midnight
8:40 – finally settle on appropriate “loose clothing” per instructions
9:15 – ride to hospital arrives
9:35 – clean up coffee cup and plate from coffee and danish ride has while waiting time to leave for hospital
9:45 – leave for hospital
10:25 – arrive at hoping outpatient registration
10:30 – assigned to room, put in silly hospital gown, stuck for IV, labs drawn
10:45 – wait
11:44 – transported to procedure room
11:45 – wait
12:20pm  – sedated
12:25 procedure (yay!)
1:00 – return to room for recovery
1:02 – first food since Wednesday evening (graham crackers and ginger ale (yum))

BOC1

1:11 – enjoy remaining sedation
2:00 – discharged
2:45 – stopped at pharmacy for prescription
2:46 – wait
3:05 – pick up prescription
3:15 – arrive home
3:20 – nap while daughter makes dinner
4:30 – dinner
5:00 – turn TV on for evening news
5:01 – fall asleep in front of TV
10:30 – wake up and go to sleep

Friday
8:57am – Wake up
9:00 – wonder what I missed for the last day

And that’s why you’re getting Thursday’s post now. This is it. Have a good day.

 

 

 

Caution: Rough Road Ahead

I don’t think I’ve ever started a post apologizing for not posting. As much as I find myself an interesting fellow I can’t imagine any of you (if there are any of you still reading) working yourself into a lather because I’ve deprived you of my drivel these many days. But that’s just it. It’s been many days. Many more than I’ve ever gone without posting unless I was unconscious in a hospital bed. That’s just plain rude so for that I apologize.

Technically though, I have been unconscious in a hospital bed but just for a couple of hours. And I’ve been awake on a hospital bed a few days but not any of them in a row. Let me start in the middle for you and maybe that will clear things up.

When we last left our kidney transplant journey there were potential donors being poked and prodded, tested and vetted. They still are but all are nearing their finish lines. Will any be found as able as they are willing? The best I can say is we’ll see.

Until then, dialysis continues to be the means by which my own, slightly overworked and underappreciated kidneys are given a hand doing what they used to do best. Smoothly is generally not a term used to describe how dialysis goes. And it isn’t. Three weeks ago at an anything but routine dialysis session (routine also not descriptive of the dialysis procedure) my fistula imploded. You remember my fistula. It’s a pair of blood vessels surgically connected then anchored just below the skin so the dialysis nurse can shove two needles about the size of ball point pen cartridges into the arm to get the blood to and from the dialysis machine. Repeated stabbings cause scarring and plaque to build up inside the fistula and about every six months the surgeon runs a catheter through my arm by which he can clean things up in there. There is a fairly descriptive description (which is truly the best kind of description you can have) along with a couple truly disgusting pictures (and when describing a fistula, disgusting is truly the best description you can make) in a post from earlier this year.

Even with careful maintenance, sometimes the fistula just fails. That’s what happened to mine on November 6 which just happened to be the day after the last day I posted anything. Coincidence? Umm, not really. After repeated attempts to get a needle seated properly in the fistula with nothing but resistance to show for it, the nurse declared my arm a no dialysis zone. Unfortunately that did not give me carte blanche to swap the dialysis recliner with a seat at the Chinese restaurant down the road although lunch would have been welcome since I rushed through breakfast in order to participate in the American election process. Instead I was able to swap that chair for a bed at the hospital outpatient surgery area and await an emergency clearing of the fistula.

To make a long story short (I realize I’ve already exceeded that marker but it sounds good and I rarely get to use that as an opening line), after two more attempts with equally poor results, everyone admitted that the fistula was no longer a viable and a temporary catheter was tunneled into the right external jugular vein. It was during that procedure I had my previously noted period of unconsciousness in a hospital bed. (I get to be awake during the cleaning procedure, known as a fistulagram, and can actually watch the progress. It’s fascinating stuff but I’d still rather see a Bond, James Bond movie any day of the week.)

CVCThe unfortunate thing about dialysis catheters is that unlike say administration ports one might receive chemo through, they terminate outside the body and do so on a pair of tails. I’m posting a drawing so you can better see what I am trying to describe. (I could take a picture of my actual catheter but it’s not a selfie I’m anxious to snap and if you just type “dialysis catheter” into your favorite search engine you’ll get no end of new disgusting pictures to peruse at your leisure.) The part of the catheter inside floats and can actually be felt depending in where the tip resides at any particular moment. Reaching for anything higher than one’s shoulder, which given my modest height is anything off the counter, means moving the catheter around in there, also rather obviously noted. And because there is really no good way to anchor the outside tails, any movement or position change comes with a reminder that there is a part of you that isn’t really a part of you.

Fortunately I have the opportunity to be unconscious in a hospital bed again next Thursday when a new fistula will be fashioned into my other arm and I’ll get to have the catheter removed as soon as the new fistula completely heals and toughens enough for dialysis use. That shouldn’t be much after Ground Hog Day.

Just because I was having so much fun at the hospital, last Thursday when I was preparing to return to the world of blogging, I received a call from the dialysis center. The labs drawn earlier returned with a critically low calcium level endangering my health on any number of levels and I was instructed to return again to the hospital, this time to the emergency room where orders would be waiting to repeat the test and administer IV calcium if still returning a lower than normal level. It was, they did, and I got to recline on the sixth hospital bed (but conscious for five of them!) in 11 days.

And you thought getting on a transplant list was going to be boring between the listing and the planting.

Related Posts:

Transplant Journey Posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)
Step 4: The List (July 12, 2018)
Step 1 Again…The Donor Perspective (Sept 6, 2018)
And The Wait Goes On (Oct. 18, 2018)

Other Related Posts

Walk This Way…or That (March 9, 2017)
Looking Good (May 18, 2017)
Technical Resistance (May 25, 2017)
Those Who Should Know Better (July 24, 2017)
Cramming for Finals (May 3, 2018)

 

 

My Day

I’ve never done a “day in my life” post and you should be thrilled. Unfortunately, all good things must end and your thrill just ended.

Today is not a just any old day in my life though. Today I went to the hospital. For the first 57 years of my life I never spent a night in a hospital unless I was working there. I never even had an outpatient procedure until I was 55. Wait. That’s not completely true. I was born in the fifties in the USA where childbirth was a minimum three day hospital stay. But after that, all my sleep was in my own bed or one of my choosing. Ok, that’s not 100% true either. There were some nights the U. S. Army insisted I spend away from my favorite pillow. But otherwise…

ADIL

Back to today. Don’t worry. It won’t be that traumatic an event. We’re just going for a simple procedure to open the fistula used for my dialysis. A fistula is a piece of artery and one of vein sewn together and pulled to just under the skin so the dialysis nurse can more easily jam a pair of needles roughly the size of a ball point pen into it. With all the puncturing and high velocity blood flow, the inside of the fistula scars and it slowly narrows, raising the pressure of the blood flow through it, decreasing the efficiency of the dialysis treatment. To correct this, because my fistula is in my upper arm, the surgeon will cut a small hole and enter the vein just below the fistula and thread a catheter through the vein into the fistula. This will be tracked by a scanner mounted over my arm transmitting images to a monitor above me. Once the physician finds the narrowed space he’ll pass a balloon into the catheter, up to the fistula and inflate it, pushing the occlusion against the vessel wall. (If that sounds like what you’ve heard as coronary angioplasty that’s because it’s the same procedure except on a fistula rather than a coronary artery.) While all this is happening I’ll be half asleep making incoherent conversation with the surgeon. It’s ok. He’s a friend.

MPH

Breakfast

I woke up a little after 6 showered (no, no pictures there), dressed comfortably, and got breakfast. This morning’s breakfast was two mycophenolate capsules and a sip of water since I will be anesthetized to the point of being half asleep. About 8:30 my sister came to take me to the hospital. She will be my accompaniment for the day since I will be anesthetized to the point of being half asleep. Because we’re Italian she brought food.

Traffic was light and we got to the hospital a few minutes after nine for my 9:30 report time. The nice lady in registration breezed me through and sent me off to the outpatient department with a stop at the lab for a quick blood draw. We arrived in the outpatient department at 9:45. By 10:05 I was changed into a hospital gown (still no pictures), had vitals recorded, an IV started in my left wrist, and left to wait for someone from the cath lab to come get me at 11:30. This was a boring 85 minutes and I read the paper. Did I mention it was boring?

 

Fistula_Before

Before

At 11:40 I got picked up for the procedure I already described, it went off without a hitch, and I went back to my room in the outpatient department where they said I looked great, go home.

Fistula_After

After

We went home, had lunch (a late lunch since it was then 2:30) my sister went home and because we’re Italian, I gave her food. Then I sat down and wrote this.

You know what? These things are really dull. Who came up with this idea anyway? In case you’re wondering, I am now just wonderful and when I go back to dialysis I’ll have the smoothest flowing blood of anyone there.

And you heard it here first!

First Steps

I did something last week I have never ever done in my life that may well change my life. Yes, even this old life. And even though it put things into play that will someday move very quickly, these first steps are going to plod along. I’m going to take you on this journey with me mostly because I don’t want to go and I think those here in my immediate world might need some help keeping me moving along.

Warning, this post actually has some personal information about me that I’ve never shared before. It is not recommended for the squeamish. (Or for those who might have developed any kind of respect for me especially when I reveal what a fraidy-cat I am.)

Last week my nephrologist put in referral paperwork for me to be evaluated for a kidney transplant. And I am terrified.

I’ve worked my entire adult life in health care, mostly in hospitals. I am the most rational human being when somebody asks me for an opinion, a clarification, or some information. But when it comes to me, I’m the biggest wimp in Fraidytown. I hate doctors and nurses and hospitals and medicine and machines whenever I am the focus of their attention. The only good people I see from a hospital bed are the ones who bring me food. Everybody else is an unwelcome visitor. 《Shudder!!!》Now I’m going to have to go through examinations and tests and (arrgghhhh!!!) needles to see if I get to be cut open and have more of my insides swapped out or get sent back to live a life of dialysis with its sharp objects and scary machines.

I hate dialysis. Let me see if I convey how I really feel about dialysis. I hate hate hate hate hate hate hate hate hate hate hate hate hate dialysis. And if one more person tells me “but it’s just a few hours a week” I will stab them with the needles that are thrust into me at each session.

Unlike other long term invasive procedures where an access port might be implanted under the skin to accept the needle used (say for chemotherapy), in dialysis the preferred method of access is your own vein. A surgeon cuts into your arm and brings the vessel from deep within the arm to immediately underneath the skin. Yes it is weird seeing your vein basically sitting on top of your arm and feeling it pulse with your, well, your pulse. Into this vein a dialysis nurse or technician inserts two needles about the diameter of a ball point pen, connects those to a pair of plastic tubes, and attaches those to a machine about the size, and with similar function, of a gasoline pump.

For the next three and a half hours I get to watch my blood zip around the room while it is rid of the crud we ask our kidneys to shed that mine decided to stop shedding. Add in the before and after procedures and repeat a few times a week and that’s why I hate dialysis.

But I also hate surgeries. Let me see if I can convey how much I hate surgeries. You get the idea. I won’t put you through that again. For the first 55 years of my life I had never been in a hospital as a patient. Never a broken bone, never a needed stitch, never even a false alarm brought me close to wearing a hospital gown. Then in less than four years I spent 18 months with my back end uncovered and endured four surgeries, only one of which I didn’t almost die during or shortly after. (True stuff there.) In the last couple years I’ve been back for numerous outpatient procedures and one additional full blown surgery (not death defying (whew!)). Familiarity doesn’t really breed contempt but it sure breeds a hell of a lot of fear.

Every surgery I’ve had has been complicated by a condition I live with that makes decisions for me every day. Seventeen years ago I was diagnosed with Wegener’s Granulomatosis, now known as Granulomatosis with Polyangiitis. We’re not allowed to use the W-word anymore because he was a Nazi. GPA is a rare type of vasculitis that affects less than 3 out of 100,000 people and is fatal without treatment. There is no cure but with various medications the inflammation can be abated. So we have a fatal, rare disease, without a cure, and after years of research somebody figured out the doctor who discovered it was on the wrong side in a war and shouldn’t be “honored” by having a rare, fatal disease, still without a cure, named after him.

GPA primarily affects two major organs, the lungs and (drum roll please) the kidneys. Yes, my kidney disease is not a result of the trauma of the surgeries or the cancer or hard living. It is from the Wegen– oops, from GPA. So in addition to the rest of the pending evaluation, I have to somehow demostrate that my chronic condition will not adversely affect a new (actually a used) kidney. I do that by taking my medicine and having regularly seduced blood work to measure the inflammation markers in my blood. More needles!

So, to make a long story short (I know … too late), I am about to embark on a process that will determine whether I undergo major surgery followed by a lifetime of drugs and tests, or continue with dialysis and a lifetime of big thick needles and multiple times a week treatments and general life interruptus.

And I want you to come along! Now don’t you just feel special?

 

 

 

 

 

Keeping On Keeping On

The Urban Dictionary defines Keep on Keeping On as “The act of doing what you have been doing but an encouragement to do it more.” I get to keep on-ing tomorrow as I get to undergo yet another surgery.

It won’t be so bad. At least this time isn’t a matter of life or death but rather one of comfort and convenience. And with any luck once we’re all done it will be more convenient for me to be comfortable.

I’m sure I’ve said this before but before I began to have this current round of medical issues I had made it through some 55 odd years without ever having to be in the hospital other than while I was at work. Then as suddenly as all that I was on the other side of the bedsheets. Now, four years and as many surgeries later and I’m still around to write about it. Is that great or what?

I’ll spend the rest of today brushing up on the patient version of improving my bedside manner, eat as much as I can until that famous “nothing by mouth after midnight,” and spend this evening at the hockey game while I keep telling myself how fortunate I am to be able to well enough to go to a hockey game.

Wish me luck, please say an extra prayer, and I’ll be sure to tell you all about it sometime next week. While I keep telling myself how fortunate I’ll be to be well enough to tell you all about it.

That’s what I think. Really. How ‘bout you?

 

 

Weight Not, Want Not

Three years ago I said to myself, “Self,” I said, “you have got to lose some weight!” I was easily 50 pounds overweight. I not only was putting on pounds, I was losing height. The inches I lost going up and down found their way to my middle and went round and round. I recall when I was told I had to start getting in shape my stock answer was “round is a shape!” But truth be told, I felt pretty bad. I was always short of breath, I took elevators to go one floor (down, even), and my favorite place to go was the airport because there were people movers all over. If I had to walk all that way on my own I’d just sit and wait a while and eventually my breathing and heart rate would get back close to normal.

I was certain I could lose weight. I watched TV. I saw the ads for pills, exercise CDs, diet books, and portable gym equipment. In just 3 weeks, 6 weeks, 30 days, or 90 days I too could lose inches and pounds. I was ready to take all the “before” pictures if I could just bend over far enough to get the camera case off the floor. And if pills, exercise, and diet didn’t work – or didn’t get started – I had a secret weapon. I would monitor my portions and eat less. And I did. I only had one rack of ribs for dinner, half a chicken at one meal, only two appetizers even if the special was for three, and I always shared dessert. I rarely had soft drinks unless they were mixed with bourbon and I even started drinking light beer for a little while. Even with all that, I still didn’t lose weight. In fact, I gained! By the time that year was over I was exactly 100 pounds heavier than what the height/weight charts said I should have weighed.

Two years ago I said to myself, “Self,” I said, “this would be a whole lot easier if I wasn’t so fat.” The surgeon agreed with me but said I really needed to do this. So during the procedure to remove the cancer, all or part of a couple organs were removed. And finally I lost some weight. Since then I’ve had three more surgeries, five more hospitalizations, several outpatient procedures, and quite a bit more weight loss.

I am 90 pounds lighter than I was three years ago, only 10 pounds away from a goal I would have otherwise been proud to have reached. I still get short of breath and I still take elevators for just one floor. That’s because I can’t walk a flight of steps without becoming over-exerted. I’d like to take an “after” picture but when I get down to the floor I have to have somebody help me back up. Eventually the stamina will return, the flexibility will come back, and those last 10 pounds will disappear.

All I have to do is sit around and wait a while.

That’s what I think. Really. How ‘bout you?