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Post-release blues
30 Dec 2008 18:48 EST
Well, I’m home and the organ’s working. I’m still not well yet, of course, and it seems I’m experiencing a bit of the post-surgery blues. This is to be expected, and I’ve got psychiatric medications just for the trick. Essentially, though, I’ve been psyching myself up for months now to “get the transplant” – now I’ve got the transplant and still have a bit of healing and normalization to do. So it’s a bit anticlimactic right now. I’m home but can’t lift anything or climb stairs, so no sleeping in my own bed yet…
Some things are still rough: still have some drainage from the incision, lots of abdominal swelling, not sleeping at night, painful micturition, a low-grade fever in the nights. Some things are going well: the organ is making LOTS of urine, my blood pressure is doing much better, the swelling is going down every day. I know it’s just a matter of time. Monica is taking very good care of me.
UPDATE: Let me expand. On the one hand, I am bloated, sore, wet, tired and none of those things make anybody feel good. Not sleeping in your own bed for going on 2 weeks is difficult too. They shot me full of steroids which put me into a horrible cranky mood. On the other hand, I know that this is a step along the way, and that all the signs are going in the right direction: my blood work, my pee, the amount of pain I have, etc. It’s all going according to expectations, I’m just anxious.
Ready for admission
20 Dec 2008 14:35 EST
The nurse coordinator from OSU transplant called yesterday with admitting instructions. Shark and I are to report to OSU at noon on Monday. She gave the usual instructions to bring a list of my medications (a long list indeed), loose confortable clothing, a robe, pajama bottoms, and slippers. After admission, I’ll be taken to the 9th floor until I’m taken to surgery early Tuesday morning. Surgery should last about 3 hours for each of us.
After surgery I’ll be in the “special care unit” (4-bed mini-ICU for organ recipients) for 24 hours so the doctors and nurses can play with all the tubes they’ve inserted into me. They’ll bring Shark down to see me on that night. We will be in different rooms post-surgery so that, in the words of the nurse, we can each concentrate on our own recovery.
She said I’ll be staying in the hospital for 4 days after the surgery…meaning I should be home on Saturday! Woo hoo!
Here we go again…
19 Dec 2008 01:11 EST
In four days, my good friend Shark and I are going to be admitted to OSU Hospital, whereupon doctors will render us unconscious, remove a kidney from him, and then insert it into me in the wrong place. Which is exactly what I’ve been hoping for for many months now.
I have Goodpasture’s Syndrome. It’s a blessedly rare disease which, in short, causes your body to completely destroy its own kidneys as if they were foreign bodies; while it’s killing your kidneys it’s also attacking your lungs. Its cause is not entirely known. It struck me quite suddenly when I was a young man of 22. I was on dialysis for 2 years after that, then in 1991 received my first kidney transplant from a very young man who had died in an automobile accident.
During dialysis I continued my classes at Michigan State University. After the transplant, I graduated; somewhere in between those two things I married the most wonderful woman in the world. After I had my first transplant, I fathered three children, traveled the USA and the world, and embarked on a successful professional career. Life with a kidney transplant freed me from the shackles of dialysis and allowed me to live a completely full and normal life. Although my transplanted kidney had declined in function gradually over the years, it still served me very well for 17 years, longer than the original owner who tragically died at 16.
In May of 2008 my monthly blood work came back with bad news: the transplanted kidney was no longer working well. Subsequent testing proved that the kidney was on its last, um, legs. Doctors told me that they could keep me going for a few more weeks to maybe months, but that I would need a new kidney again, and soon.
In May I had few symptoms. But by June I began to become very ill. The kidneys filter toxins from the body, regulate blood pressure and electrolytes, balance your fluids, and produce hormones that control red blood cell production and parathyroid function. All these things began to go wrong in me. I lost 10+ pounds very quickly, and became extremely weak and anemic.
In September I started dialysis. Since then I have undergone dialysis three times a week for 3+ hours each session. This treatment has greatly improved my health and helped make me ready for surgery. However, dialysis is very rough on the body and is not a good long-term treatment compared to a transplant.
When we found out I needed another kidney, a number of friends and family graciously offered their very flesh to help me. After an interminable series of invasive and annoying tests, my friend Shark persisted and is considered to be the best candidate. Surgery has been scheduled for Tuesday.
After Tuesday, my #1 job is complete recovery. Years of kidney disease have wracked my body; I suffer from arthritis, muscle wasting, brittle bones, and an enlarged ventricle in my heart. Once I get the transplant, my regimen of getting back into the peak shape of my life begins. I figure if my friend is good enough to actually give me an organ, the least I can do is make sure that the organ lasts as long as possible.
So on this blog I’ll keep the world posted on my surgery, recovery, and progress toward my goal.
Another update. Don’t you love updates?
02 Dec 2008 21:02 EST
Don’t you just wish I’d hurry up and get the transplant already? I know I sure do!
Anyway – Shark has a CT renal angiography scheduled for Monday. This is used to take a picture of the vessels to his kidneys, in order to determine which kidney to use, how its vessels are set up, and to make sure there are no physical abnormalities.
According to the folks at the transplant clinic, this procedure is one of the last things they do before the actual surgery.
Keep your kidneys crossed, everybody!
Thanks
27 Nov 2008 21:16 EST
I am thankful for my wife.
I am thankful for my children.
I am thankful for my home.
I am thankful for my extended family.
I am thankful for my friends.
I am thankful for my job.
I am thankful for the United States of America.
I am thankful for modern medicine.
I am thankful for medical professionals.
I am thankful for modern techhnology.
I am thankful for plentiful food and drink.
I am thankful for good times spent with good people.
I am thankful for warm socks and a warm bed.
I am thankful for the laughter of little boys.
I am thankful for good schools and good teachers.
I am thankful for every second.
I am thankful for love.
I am thankful for turkey!
UPDATED Results
25 Nov 2008 21:20 EST
I got the results of my cardiac stress test today. They were abnormal. I don’t know yet what this means for my transplant.
Updated: Ok, that was rather cryptic. Sorry about that, it’s just that the test threw me for a loop since I had no idea I had any heart issues.
What they found was of middling concern, not normal but not pacemaker material. Specifically, dilation of the left ventricle with a LVEF of 45% and a small fixed defect in the mid-anterior myocardial wall. If you know what that means, well good for you. I haven’t heard from anyone about what they might want to do next.
My next test is tomorrow: pulmonary function.
i’m radioactive
20 Nov 2008 21:21 EST
I underwent another one of the interminable tests required for my transplant yesterday. It was a cardiac stress test. I don’t have any history of heart problems, but since I’ll be undergoing major surgery and I’ve been on heavy duty meds for many years, the surgeon thought it wise. I figured, since I’ve been a hiker for a while now, if I had any heart issues I’d know it by now…
Anyway, the test was strange since it was in three parts, and I got to go home in between the parts. First, they injected me with a RADIOACTIVE!!1!!e1ev3nty!! isotope (Tc99m). Then they told me to go home for an hour and eat and drink. I came back and they put me in a gamma camera and took pictures of my innards for 20 minutes. Then they told to me to go home for an hour and eat and drink. I came back again and they put me on a treadmill and injected me with a heart stimulant. They took my BP and EKG while I was on the treadmill. The heart stimulant supposedly can cause all kinds of crazy symptoms such as impending doom, dizziness, and chest tightness. But the only symptom I has was that my feet suddenly felt like I was wearing boots. Weird.
After that, they stuck me back in the gamma camera for another 20 minutes. They confirmed that the images were clear and sent me on my way.
As for the results, I have no worries, but I’ll hear the official word later this week I imagine.
In the meantime I am full of radioactivity. They gave me a slip of paper to show Homeland Security in case I set off a detector. Seriously.
later.
updatery
08 Nov 2008 21:22 EST
Here’s an update on the latest milestone in the transplant saga: a major step forward!
On Thursday, Shark and I (accompanied by the lovely Monica) had an all-day appointment at the Ohio State University transplant clinic. In addition to fun videos explaining the joy of live organ donation, we met with a number of folks and got some tests/exams done. We also got the information on our upcoming surgery…
The kind of surgery we’re going to have is a living donor laparascopic kidney transplant. It’s amazing. They make a couple small (2-3 inches) incisions in the donor and use a laparascopic camera and tools to remove the kidney. It’s mininally invasive, leaves hardly any scars, and has a very quick recovery time. The donor surgery is about 3 hours. After removing the kidney from the donor, they’ll drop it into me. My incision will be larger and my surgey more invasive, but even so my half of the surgery will only be 3 hours as well. (My first transplant surgery was about 8 hours). The donor’s hospital stay is only 2-3 days, and the recipient’s about a week.
Shark and I met together with our transplant surgeon. The surgeon is part of a 2-man team specializing in laparascopic living donations. One of the team does the donor, and his partner does the recipient. The surgeon said he has personally performed over 1,000 laparascopic living donations, and 4,000 regular kidney transplants. For him this is absolutely routine.
The transplant surgeon examined us (amazingly briefly) and wrote down in my charts that I was an “excellent candidate for surgery”. Woo hoo!
We also met with the social worker, the nurse, and got our bloods drawn. shark also met with the nephrologist (kidney medical specialist) and had an EKG and X-ray.
They (both the surgeon and the social worker) asked us about scheduling. It was a little surreal…
OSU: “When were you thinking you’d like to have the surgery?”
Me: “Tomorrow. Seriously.”
OSU: “Are there any dates that wouldn’t be good for you? Thanksgiving? Christmas?”
Me: “Bring it on. Surgery, please. Any day, any time.”
I can’t imagine answering “well, maybe we should wait until after the holidays”…
There are a couple more things to do before the surgery is finally scheduled. I need to have a pulmonary function test and a cardiac stress test, and Shark needs to talk to the transplant shrink since he wasn’t able to talk to her on Thursday. They make sure everyone involved in the tranplant sees a shrink. Damn good idea.
Once those tests are all done, they’ll schedule it.
Yay!
update w/good news
14 Oct 2008 21:24 EST
This morning at dialysis I talked to my dialysis nephrologist. He would like to see me either get the damn transplant, or otherwise get additional surgery for permanent dialysis. “Shit or get of the pot” were his exact words. Seriously.
So then Monica and I went to see the transplant nephrologist at OSU today.
He said that from a medical point of view either Monica or Shark is an acceptable donor. He also said that he wants to get things moving. He sees no reason for further delays. He’s calling the people who run such things and having them schedule my pre-transplant appointment (the official one where you see the nurses, docs, social workers, watch the videos, etc.) Basically, he doesn’t want me on dialysis any longer, and wants me to get the transplant as soon as possible. “We all really want this to work for you”, was his quote.
He also said as a matter of policy they don’t call the donor to schedule their corresponding appointment. The donor must call them. This is to ensure that the donor really really wants to be donor – makes sense to me.
So, because of the above, the doc told us that now’s decision time…who will it be? Shark or Monica? Remember, if one doesn’t go through, the other can still be brought in. But we have to make the call.
I am very happy at the results of today’s appointment. But now we’ve got a decision to make and then some stuff to do.
about mark beadles
I write the things you read here. Polymath renaissance redneck. I build software, stories, and young men. More...on the desk
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