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Ryan's Notes - His Last Days
Ryan July 29, 2009
 
April 10, 2009

I had a heart attack. I'm not dead.

Friday, April 10, 2009 at 7:21pm

Ryan July 29, 2009
 
April 25 2009

 

 

April 25, 2009 1:07 am
I just got out today.  I actually thought I was going to be in there longer, so it was a bit of surprise. 

But here is the background:

Originally, I was admitted to the hospital on March 30th and discharged on April 6th. Read my prior note for the details on that (it will be helpful in understanding the rest of this).

After being discharged on the 6th, a close eye was still being kept on me; I had regular diagnostic tests, medication changes, and clinic appointments. 

In my most recent clinic appointment, a medication called "Coreg" was added to my roster, which I started taking the following day. "Coreg," being translated from it's original Latin roots, literally translates to "Satan's wrath in a chalky pill form."
My first day on the new drug, I was functional, but extremely light-headed, dizzy, fatigued, out of breath, etc. The second day, was just slightly worse, but I was told that this drug can cause these symptoms and that they eventually go away... so I took it again on the third day (April 17th) and went into cardiac arrest.

Small background on Coreg: It doesn't affect most people like how it affects me. Generally, people will feel some light-headedness for a couple of days and just get over it... so this was a little unusual. On top of this, Coreg is apparenly extremely important for what I have. It is a beta blocker that stops certain hormones from destroying my heart. So, I will still need to take it to not die and stuff. However, though it's main focus for me is the beta blocker thing, it is a very potent blood-pressure reducer and also lowers your heart rate. I don't need those things.

Before my cardiac arrest (yes, I know, I could just go put this before the other paragraph, but I'm too lazy; I'm already here) I had been monitoring my blood pressure in the morning and night time as well as my heart rate. I saw my heart rate drop as low as 65 (which sounds normal, but heart-transplant patients generally have a pulse of about 105, so this was very slow for me). I saw my blood pressure drop as low as 74/40 (very low).

Sara, my wife, found me in the bathroom right after I had passed out from the cardiac arrest and immediately called 911. Paramedics, firemen, etc were very fast, though I was completely unresponsive until they got there (about 6 minutes).

Unimportant side-note for your amusement: because I had just been discharged from the hospital quite recently and had very regular blood checks even out of the hospital AND because I was on huge amounts of blood-thinners (which at the time I was injecting into my belly). I had track marks. Lots of them... Also, I had a needle-disposer-thing and a bunch of shots on top of the fridge. Needless to say, Sara was asked about what kind of hard drugs probably got me into that predicament.

I was ambulenced/firetrucked to the nearest hospital and was then transferred back to the U of U by ambulance the same day.

Once I was up and running, I actually felt pretty good after just a few hours. Only real injury was a small bump on my head and some short-term memory loss (nothing permanent, it only lasted a few hours). 

Once I got the Coreg out of my system, all was well. However, the Coreg needed to go back into my system says doctors. So they decided to try a different version of the Coreg (an extended-release). It was a slightly higher dosage, but since my body would not be absorbing it all at once, I figured it would be better. After all, the Coreg alway hit my the hardest in the morning when my blood pressure is already at it's lowest, so if I was getting a more even dose in the morning, that should do the trick. Right?

On Sunday, April 19th, Sara and my mom had just come to the hospital to visit me. I was extremely light-headed from the Coreg, but I was in bed, so it was bearable. I also had a very nice nurse, Janeen, who spent a little extra care making sure that all the monitors, etc were working where we could see them so the we could make sure nothing went wrong. I like nurses much better than I like doctors.

2 minutes after Janeen set everything up and made sure it was all perfect, I watched my heart rate fall from 96 to 43 in the matter of a second. I said the first thing that came to my mind as fast as I could which was "I'm dropping". I then remember grabbing a bucket to toss my waffles into and then....

At this point, I'm speaking strictly from what was told to me, as I have no recollection. My heart stopped beating completely. I flatlined. 0 bpm. My mom went to me as soon as she heard me and (while screaming) kept me from inhaling my own vomit. My wife, Sara, hit the red button and ran out the door to get somebody.

As soon as Janeen saw Sara, the operator who looks at the monitor said something to the effect of "Someone needs to go check on that patient in room (whatever I was in)". Janeen called the code, which basically means "if you are a doctor, drop what you are doing and go to that room right now". I later found that Janeen should not have called the code (according to policy) because she had yet to see for herself what was wrong... but it kinda saved my life so we can let it slide.

Within seconds, I had anywhere between 20-40 doctors in my room (again, I have no idea... these are figures I have heard and it was probably closer to 10). No pulse... not breathing... I was brought back with chest compressions (I'm pretty sure I was not defibed, but mom and Sara were out of the room, so I don't know for sure). 

My chest really hurts now. (not important, but hey, now you know)

As soon as I woke up, I was greated with intubation, a foley catheter, and numberous shots, blood-tests, etc. I vaguely remember some of this, but not most.

Over the next 24 hours, I experienced the worst day of my life so far (I know, that is pessimistic, I was alive and that is great, but in my condition, that is not at all how I felt... also it's a little optimistic because now it's all over). I won't go into explicit detail, but I could not breathe with the intubation and could not tell anyone that I couldn't breathe as I was intubated and restrained to the bed. I tried screaming with my eyes, but doctors probably see that a lot. Eventually, I just started coughing and puking until the dang thing came out. That worked.

I then coughed up blood all night long. I was lucky enough that Sara and mom were not kicked out after visiting hours... because they stayed with me all night and took turns sucking the blood out of my mouth with a little vacuum thing. Also, at this time, my heart rate was dropping and raising every 10 minutes or so and when it would drop, I would get really hot and have to kick off my covers, turn on a fan, and put a cold, wet towel on my head. It was nice to have people to do that for me so that I wasn't calling in the nurses every five minutes... because as soon as it would raise again, the fan had to go off, my towel had to be removed, and the covers needed to go back on.

Also, they removed the catheter, and I got to pee blood for a little while. It hurts.

I honestly don't remember how long all this went on... I was awake all night long and Sunday and Monday became the same day in my head.

Then some other stuff happened probably.

At around 3 PM on Monday, things were only getting worse. My heart rate was too low more often than it was normal and I was not myself, so it was decided that a pacemaker would be my best bet.

Oh yeah, also, I forgot to mention, I didn't pee for about 24 hours. This is especially bad because I was very full of diuretics to get the liquid away from stressing my heart. I was confident that as soon as the Coreg left my system, I would be myself again. The problem was, the nurses and doctors kept telling me that the Coreg should already be out of my system...

Well, in preparation for surgery (pacemaker installation) I was given a drug called "Dibutamine" (may be spelled wrong). This drug is basically the exact opposite of Coreg. It overworks your heart and raises the heart rate. 

About half way through the surgery (I was only mildly sedated and not put under... it's not necessary and they needed to make sure that I remembered to breathe... because I was forgetting to do that sometimes). Oh yeah, so about half way through the surgery, I felt way freakin' better. Like, holy crap. The pacemaker makes it so that my heart rate cannot drop below 80 bpm (where I still feel fully functional) and my organs still get the blood-flow they deserve).

However, I wasn't feeling better because of the pacemaker... which was't even in there all the way yet. I felt better because the Dibutamine caused my heart to start beating normally again, which caused my blood to start supplying oxygen to my brain and kidneys (among other things). So because my blood could flow, the diuretics finally kicked in and swished the stupid, evil Coreg out of my system.

I peed all night long. It was magical, but extremely painful.

After that, I've been feeling better every day and I didn't have to get dialysis (I came very close to this).

Next Thursday, I will be going for another clinic appointment. At this time, I will be given Coreg again. It still scares me to death to try this crap again... but with the pacemaker I should be safe. 

But seriously, I'm out of the hospital and it has been only one week. Considering everything that just happened... that seems pretty quick.

Also, I haven't had to go to work now for like a month... and I'll probably be out for another or so... not a dream vacation... but breaks are nice.

Things I learned at the hospital:

1. Soup without salt is basically pointless. It doesn't matter how much seasoning you put in it or how much butter or good fresh vegetables... if you don't have salt, don't make soup. Seriously.

2. Nothing in the world tastes better than ice water. Don't beleive me? Don't drink anything for two days (occasionally, you can use a swab to wet your gums if you have to) and then put an oxygen mask on and just breath it in until the insides of your face crack open. Then have a glass of ice water; I promise that you will enjoy it. The water part.

3. Male phlebotomists with pony tails are almost always the best at what they do.

4. Daytime television is terrible.

5. I have no idea what doctors who work in hospitals actually do. I would see the doctors in the morning during rounds, but I don't think I ever saw one in my room for longer than 5 minutes (except for the OR... but still, there was one doctor and like 5 nurses).

6. Insulin is a very painless shot... but checking the blood-sugar part is painful.

7. Rapamune (medicine) in it's liquid form is the most terrible thing I have ever tasted.

8. Pancakes are also much tastier when salt is used in the batter.
Ryan July 29, 2009
 
May 8, 2009
New hospital update (yeah, I'm in here again).
This time, I have my sister's laptop and U of U ID and password so I can use the hospital's wireless network.

Basically, I came in for a clinic appointment on Tuesday, May 5th, and was told by the doctors that my kidneys are actually getting worse. I was then admitted to the hospital with "level 3" kidney failure. I don't really know what that means other than I only have 20-25% the kidney function of a normal person.

Anyways, I'll spare you all the details, but there have been several tests and the kidney doctors and cardiologist really aren't sure what is wrong. It basically sounds like my kidneys need more blood from my heart, but they are not sure why, as it is beating relatively well and my kidnes haven't needed that much blood before. Also, they really don't have any kind of permanent fix for that, so they are kinda just hoping that they don't get any worse.

Dialysis? Not yet. They don't start dialysis until you are at about 8% kidney function and the dialysis is just to hold you over until you can get a kidney transplant.

Do you want a kidney transplant? No, that sounds terrible. As I said, 8% is still a little ways away so lets not worry about the kidney transplant bridge unless we get there.

Is there an actual bridge called "The Kidney Transplant Bridge?" Yes, there is. It is just south of Black Stoole.

I don't know how much longer I will be in the hospital this time. I imagine I will be here at least until Tuesday, since they still have some iron to give me and tests to perform, but 1 week seems about the normal stay. 

I'd like to say that I plan on making this my last long stay in the hospital, but considering all that is wrong with me, that is nothing short of wishful thinking.

How do you feel?

I feel OK right now. They have me on a drug called "Dobutamine," which basically overworks my heart and directly gets bloods to my kidneys, which feels great. However, this drug isn't tolerated well by the body and you can't stay on it for very long per death. Basically, this is to make me feel good while they try to diagnose me.

How do you stay positive all the time? Your friends and family write such nice things about how wonderfully full of joy you are through all of this.

I am trying. While I feel the notes and feelings of my friends and family who state such things may be over-exaggerated to make me look like a super-hero, I really am trying. But I am very human and I have my bad days too. On days when I'm not feeling the effects of a failing heart and kidneys, it is a lot easier to be positive than on the days where I can't function and have to rely on others to do everything for me. And the longer this drags out, the harder it is to stay optimistic that I'll ever see an improvement. However, I acknowledge and accept that there is really no way around this and I am very grateful for the love and appreciation that you are all offering at this time. 

I am especially grateful for my wife Sara. I love her more than fried chicken wrapped in bacon and dipped in country gravy.

A NOTE TO SARA

 

Hi, my Sara. I just woke up and I am supposed to call you, but my phone fell off the tray and is under my bed. I'll ask a nurse to get it for me when he/she comes in, but I can't get to it with my IV. I hope you get on Facebook tonight to read this, but if not, I'll still call and wake you up when I am able to get my phone so that you know I am not deadish. I love you.

May 12, 2009 10:50 pm
Ryan July 29, 2009
 

I Broke My Heart and Kidneys

Thursday, May 21, 2009 at 12:37am [Written 9 days before Ryan admitted to Sara and me that he could not resolve his feelings about being on the transplant list.]
So, in my last update, I stated that I anticipated being out of the hospital Tuesday, the 12th. Well, I did not get out, I am still in here and I have *note my emphasis* [[[[[no]]]] idea when I will be getting out.  End of that discussion.

From my last entry, you should know that I was admitted to the hospital this time because of my kidney function. As it turns out, they are failing. They did start to get better at one point, but, over the course of about a week, they got worse again. 

I am now on dialysis. It's not so bad. I got to the point where every waking hour (which was all hours, because I couldn't sleep) was completely miserable. I felt like I couldn't breath, I was

Questions:

What is dialysis?

Basically, a dialysis machine does the same job as a kidney. It pulls my blood out through a catheter in my right jugular vein, filters out all the toxins that the kidneys are supposed to get rid of (nitrogen, uremia, etc), pulls out the excess liquid, and then sends the blood back into my body through another tube.

Right now, I'm getting the dialysis every day. I started at 2 hours and have increased each day. Tomorrow I will go for 4 hours. Once I'm "regular" on the dialysis, I will be going probably 3 times a week for 4 hours at a time.

How does the "transplant list" work?

With the heart transplant list, there are 3 statuses: 1a, 1b, and 2. 

1a - Kids under 18 and people hooked up to machines in the hospital that don't have long to live.
1b - People waiting for multiple organs and people who need to be on dobutamine (IV drug to keep heart pumping).
2 - Everone else.

I'm 1b because of the dobutamine. The multiple organs thing may qualify me as well.

The plan is to have me active on the heart transplant list before the weekend.
nauseous all the time, and if I tied to eat something, I would just throw it up.

Today was my third day of dialysis and I am starting to feel an improvement. I ate today. I had about 5 ounces of a protein shake and a couple cans of soda that I was able to keep down. This is the most I have had in 4 or 5 days. 

Things will get better over time, but this is all short term stuff. Here is the long-term plan:

1. Because I have both kidney and heart failure, I am working with two different sets of doctors: the nephrologists and the cardiologists. 

2. The cardiologists all met on Tuesday and approved me for a heart transplant.

3. The nephros are meeting on Thursday to decide whether or not they think I should get a kidney transplant at the same time as the heart (same donor). There are two thoughts on this, so it could go either way:

a. A kidney transplant is not a cure for kidney failure and is only expected to last about 8 years. In the mean time, though it is a huge pain, dialysis serves the same purpose. The reason to say "no" to a transplant is because of this: a transplant is permanent. It is possible (not likely) that I could regain my kidney function after the heart transplant and still have my own kidneys and be ok.

b. If I do need a transplant, the advantages of getting the kidney and heart from the same donor include: 1. higher priority on the transplant list; 2. introducing less foreign antibodies to my system will make future transplants far more manageable.

Personally, I'm leaning more towards b. While I would be ecstatic to regain my own kidney function, I do not see this happening. My kidneys have taken a lot of hits and after the transplant, they will take many more. I really don't think they are up for any more drama.

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