Saturday, December 09, 2006

Home from the Hospital

Well I am home from the hospital (12/5 - 12/8) and it sure was nice to be able to sleep in my own liftchair again. It may take me some time to wade through the 305 messages in my inbox, the 100 messages in my apcug folder, the 16 in my blog folder, 16 in HelpingTulsa folder, and 9 others in other folders but I will get back to you as soon as possible. If anything is urgent send it priority.

I want to thank my Guest Blogger Greta Perry from Hooah Wife for filling in for me so my blog did not "go dark", and I welcome the commenters from her blog who visited too, and hope they will continue visiting my blog as well as Greta's. I also want to tell Deb at EIMC, who is contemplating similar surgery in January, that it is nothing to worry about.

I was able to get internet connectivity in the hospital, at least for a while (they put the power brick for my laptop on a bar on the bed, and it got smashed when the bed was lowered, so I was working on battery most of the time.

Fortunately I got two when I got the laptop. I tried to respond to some messages, but webmail to cox kept timing out and I dont know whether any of them made it out.

For others thinking about accessing wifi at St Johns, it is very simple. When you try to go to any page, you will get this screen:

Click on the box Click here for Internet Access and you will be connected. The really amazing thing is the text at the bottom of that screen: This service is provided free of charge (when did you ever get anything free in a hospital; I was afraid they would charge a lot, and that Medicare would not cover it but I took a chance because I wanted internet access) by St. John Health System as a courtesy to our patients and guests. St. John reserves the right to deny access to any sites for any reason. (I did not try to access any porno sites or anything else that might have been objectionable). St. John is not responsible for any damage to the patient's or guest's computer (I never gave any thought to trying to hold them responsible for the damage to my power brick, even though it was one of their people that put it on the bar under the bed, probably trying to keep it off the floor) and/or its data and St. John reserves the right to terminate access at any time if it determines access is a security risk. (Please don't try to hack into the patient file area; I want them to keep this service available to patients. It makes the long days go much faster if a Net-a-holic like me can get his daily online fix. I just need to figure out a more reliable approach for the WebMail thing. I've got a Gmail account I never use; I probably should have activated it.) St. John Health System is not responsible for helping to configure user's internet browsers. (Reasonable, and I found I did not need any help. I was afraid I might have to ask for a code of some sort, but my laptop automatically found GuestNet which is what it is called. It is supposedly about 50 or 60mb fast, but that is shared by all of the patients in the hospital, and I presume that is why my attempts to access Cox WebMail often timed out. I tried to send several messages, with copies to me, and it turns out only one went out.)

That's about it for the computer oriented portion of this post, so if the medical stuff is not your cup of tea, you can switch to the next message. If you want to read other messages on my blog, feel free. Most are political, from a conservative point of view.

The reason I went in to the hospital was to get kidney stones removed. It turns out my left kidney had hydronephrosis, 7mm proximal left ureteric lithiasis, early left staghorn calculus and multiple additional left renal calculi, probable left renal cyst, and I had Staghorn calculus in the right kidney extending into proximal ureter with right renal atrophy.

What all of that says in laymans term is that I had large stones in both kidneys, one huge one in the right, and some smaller ones in the left. They did a kidney scan and found both kidneys were working, with the left working better than the right, so they decided to start with the left kidney, get it completely working, then tackle the right in 4 to 6 weeks. They did not want to work on both at the same time, because if they had screwed anything up, it would have left me on Kidney Dialysis for the rest of my life.

Initially they were going to go with Extracorporeal shock wave lithotripsy (ESWL) on the left kidney, where you lie on a table or sit in something like a bathtub and pulses of sonic waves pulverize the stones, which are then more easily passed through the ureter and out of the body in the urine, and save the Percutaneous nephrolithotomy for the larger stone in the right kidney, but then they decided both needed the "Perc" and that the "Lith" would not do the job on the left.

In Percutaneous Nephrolithotomy the surgeon makes a small incision in your back to remove kidney stones. He or she then puts a hollow tube into your kidney and a probe through the tube. In nephrolithotomy, the surgeon removes the stone through the tube. In nephrolithotripsy, he or she breaks the stone up and then removes the fragments of the stone through the tube. He said he was doing a Percutaneous Nephrolithotomy but there may have been some nephrolithotomy involved.

The first step, done on 12/5/06 involved a radiologist using fluoroscopy to cut a hole in my back and threaded a very long guide wire down into the kidney and through each stone and passed down to the ureter. This was done with a local anesthetic; I was awake the whole time.

Then on 12/6/06 took place in the operating room with the me under a general anesthesia and was done by my urologist. A scope is inserted through the patient’s side into the kidney and the kidney stone is treated. It may be grasped with a basket and removed or it may be fragmented through the scope with ultrasound, laser, or electrohydraulic lithotripsy. Fragments are then grasped and removed through the scope. A catheter is left through the side into the kidney until it is certain the kidney is draining well and this perc-tube can be safely removed.

My urologist had my nurse remove the guide wire (it seemed about 5 ft long) and cap the catheter early on 12/8/06 and then he came in later that day, and saw it was draining ok, and he removed the catheter, and said I could go home. This left me with a wound that is about 1cm long and 3mm wide.

I told him that when I was under the anesthesia an injury to my left arm that had occurred in September, when the stones were first discovered, and a stent was inserted to drain the infection, had occurred again. I could not lift my left arm all night the night of 12/7 - 12/8. I just wanted him to do an xray to see if there was anything for me to ask my PCP (Primary Care Physician) about, but because the injury happened in the hospital he must have gotten worried that I might sue him, so he had the xray read by an orthopodic surgeon in the hospital, and he wanted to see an MRI.

The MRI machine was very backed up, and I waited for several hours and got more and more worried about getting an MRI of my shoulders using the closed MRI they use at St Johns, because I had an earlier MRI at Premier MRI, and I actually got stuck in it, and it ripped several layers of skin off my arm when they pulled me out.

The next time I needed an MRI I used the Open MRI at Nydic Open MRI of America, and I told him I would really prefer to followup on an outpatient basis with an Open MRI, and then see him at his office. I finally was able to persuade them to discharge me to follow up later.

Since I was to be a new patient at Tulsa Bone & Joint they would not order the Open MRI, and the MRI office would not do it without a doctor's prescription, so I had to get my PCP to fax over a script for the MRI. I will get it done, then take the film to the Orthopod to let him evaluate it. At least I did not have to stay in the hospital another day, and risk getting stuck in their MRI machine.

One other problem. I suffer from Orthopnea which is the inability to breathe easily unless one is sitting up straight or standing erect, and therefore I told my urologist that when I left the OR and went to recovery I needed to have the head of the gurney raised to at least 45 degrees, and preferably 60 degrees, when I was placed in the recovery area. He said "no problem, but remind me the day of the surgery." I did so, and he said "no problem, but tell the anaesthesist and everyone else in the room." I told the anaesthesist nurse, and everyone else that was in the room before I went to sleep. I can't guarantee the anaesthesist was there, but everyone I talked to said no problem, we will take care of it. After the operation I was moved to the recovery area, lying flat, and having a heck of a time breathing. When I became Oriented Times Three when they ask your name, where you are, and what time it is (person, place, time and date), or if they make it Oriented Times Four, and add what's just happened, but I was still in that twilight state (anesthetic amnesia) where it seems like a sort of a dream, I was lying flat on the gurney, or at least not as elevated as they promised me. I insisted on having my head elevated, or being allowed to sit up. They refused. I became very uncooperative. They told me they were going to do several very reasonable things and I refused. All I wanted was to sit up. They had given me their word that they would do something, and they were not doing it, and I was not going to agree to anything else until they did what they said they would do.

I had told the Urologist that I thought the cause of my breathing difficulties might be some of the excessive interstitial fluid I carry moving into my thorasic area and making it hard for the lungs to expand. The reason I thought that was that I felt the same way that I did several years ago when this first started, when I was so fluid overloaded that when they gave me Lasix I dropped 15 pounds the first day, and 9 pounds the second day (unfortunately my doctor at that time was an intern that did not know how to evaluate pitting edema, and he just said I was fat (actually I was morbidly obese, but I also had level +2 or +3 pitting edema), and he took me off my lasix. I was back in the hospital a month later with the same problem, but fortunately this time I got an intern that had not slept through the class on edema. It is certainly nice to have a real doctor as a PCP (technically I guess the interns did have long white coats, but it is stretching things to say they were real doctors). That experience taught me that I needed to take ownership of my own health care, however, and I started then getting copies of my chart when I left the hospital, and doing all of the research I could on the internet, so that I would know what was happening to me.

Anyway, back to 2006. My Urologist did an xray or catscan and said there was no fluid in the thorasic cavity. OK, I was wrong about what what happening, but I still was having trouble breathing, and I knew that if they let me sit up, or at least elevated the head of the gurney 45 to 60 degrees I could breathe, and they would not do it. If they had not promised to do it, I would not have undergone the surgery in the first place.

I tested myself with a Voldyne 5000 Incentive Spirometers, and lying flat the best I can draw in is 800 to 1000ml. If I am sitting up straight I can make 2000ml, and if I am in the position I asked to be placed in, I can draw in 2250 to 2500ml. 800ml may be enough tidal volume to avoid Asphyxia, but if you are used to breathing one way, and you can only get 1/3 to 1/2 that much air, you feel like you are suffocating, and even more importantly they had promised me that they would elevate my head when I was in recovery, and I felt they should have done as they promised.

They went ahead and brought me up to my room, and later the Urologist came up to explain each of the things they wanted to do, and seemed surprised that I agreed to all of them (I had rejected all of them in recovery). Guess what, Doc. I was sitting up in my wheelchair, and I could breath just fine, and so I was much more cooperative. Does this give you a clue as to how to have me more cooperative if I should ever undergo surgery on the right kidney?

What is the cause of my orthopnea? Well I am not a doctor; I don't even play one on TV. But I do read on my chart (I get a copy of it everytime I am hospitalized and go over it page by page, looking up things I don't know, and I do see that in a chest xray I have an indication of atelectasis (the collapse of part or all of a lung by blockage of the air passages), so that is probably a pretty good place to start looking.

I related all of this to my PCP, and while she did not want to select treatment based on the tidal volume study I had done, and while she is skeptical that it could be caused by atelectasis, she asked if I had ever had a pulmanory evaluation, and I said I had not, and she said we need to get you one. I told her that if possible I would like to do it before getting the right kidney treated. She said there were not that many pulmanory docs in Tulsa, so it might be hard to get an appointment soon, so I told her that I would consent to the right kidney surgery if I had written orders from both her and from the Urologist to have me elevated 45 to 60 degrees when I was in recovery, and that I wanted to personally observe those orders being given to the recovery team before I consent to receive any additional anesthesia. She seemed to agree that was a reasonable request.

Now if the wound in my back would just stop leaking. I have been out of the hospital for a little over 24 hours, and I have already had to change my T-shirt three times, because they were soaked with urine that is still seaping out from the wound in my back, but at least I am at home. And being home is good.


Elephant in my Coffee said...

Glad you're home Don! Sounds like you had quite an ordeal! I hope you have a speedy recovery :)
Did they have to leave a stent in? That has been WAY worse than the procedure itself. It's a royal pain in's a pain.

Don Singleton said...

I still have a stint in the left kidney. It is not giving me any problems, but I am sure it will come out sometime. He has not mentioned it.
I just wish the wound in my back would stop leaking. I am on the third T shirt in just a little over 24 hours.

Greta (Hooah Wife) said...

Yuck - welcome home. Hope I didn't screw anything up! It was fun:)

Anonymous said...

Can you e-mail me where and who did your PERCUTANEOUS NEPHROLITHOTOMY
I have a 9.5mm x 6mm stone that can not be passed. It is not causing pain yet!
How big was your stone?
replace (at) with @
and (dot) with .
Los Angeles