Monday, May 26, 2008

What Happened to Me - the Long Story

A few people have asked me so I thought I'd do the smart thing and write it out here. This is what went down with me, how it happened and what went wrong. It's long and I don't expect more than 3 people to read it to the end but that's cool. I don't write it out to sound preachy either. Everyone is going to do what they want with their life and just because I almost died doesn't mean I need to have that sort of attitude. I just want to write it out so when people ask me where all the scars came from, I can point them here.

November 27 my dad went to the hospital. He couldn't breathe even with the oxygen so my mother called the ambulance and off he went. He was given a tracheostomy, put on a ventilator and pretty much written off. Unbeknownst to me, the stress of this made my blood pressure go through the roof. The blood pressure started to kill my kidneys but like I said, I had no clue I even had high blood pressure.

In December I started getting very weak. Walking from one room to the other was getting tougher and tougher and I felt horrible 24/7. I thought it was just worry for my dad and the flu. I was taking a shitload of over the counter remedies, the ibuprofen also went to work on my kidneys with the high blood pressure. I still had no idea I had high blood pressure or any issues with my kidneys.

My dad seemed to be getting worse. He was moved to another hospital and they were very grim in their predictions.

When it seemed I had had the flu for a month, I went to the ER at Kingston Hospital. They thought I had TB and stuck me in an isolated room. They didn't entirely believe I was sick, they thought it was in my head and caused by stress over my father. They kept me doped up 24/7 on Ativan. My doctor never bothered to come see me, just prescribed more Ativan.

They ran tests and decided there were nodes on my lung they wanted to inspect so they scheduled me for two lung biopsies, one under my breast and one in my throat. There was much stress in Kingston Hospital as they made no bones about letting me know they didn't believe I was really sick.

Meanwhile my dad was upstairs with constant diarrhea and the doctor out and out told my mother he would never eat on his own again as a feeding tube was inserted into his stomach.

They decided I was a diabetic even though the Prednesone they had me overdosing on is known to raise sugar.

I spent 16 days there and went home feeling just as crappy as when I went in. They sent me home with prescriptions for everything from high cholesterol (which I have never had) to diabetes to Ativan. I went home and had nightmares from the morphine still in my system. I was still unable to walk or get up and got stuck in the bathtub for 2 hours as I could not pull myself up. The doctor there looked me in the eyes and told me 'Your kidneys are fine."

This was Superbowl Sunday.

Other things started to fail, I didn't go to the bathroom for over 30 days and I was in constant agony. No one really believed I was as bad off as I said I felt. I was getting 3 insulin shots a day for diabetes on top of the meds. I had myself convinced it was all in my head, brought on by my inability to deal with my dad. I had a scar on my throat that bled like something out of Hellraiser.

I was too weak to get up and go see my dad who was having a real hard time going back and forth between the rehab center and the hospital. Every time he got to the center and got settled something went terribly wrong and he was rushed back to the ICU.

February 17th I finally gave in and went back to the ER via ambulance. I hadn't shat in 35 days and the pain was finally too much. I thought it was because of all the pills they had me on. I had to be 'manually decompacted' by a woman who looked like Grace Jones and had all the compassion of a wildebeest. It was the worst pain I have EVER endured and I even blacked out for a few seconds. Still unknown to me, this traumatic event sent my blood pressure through the roof.

I couldn't hardly move after this but I was convinced it was all in my head.

The first week in March I was feeling really bad. I was throwing up everything I put in me, even water. My dad was also in a really bad way, he had a few serious close calls and I attributed my decline to that.

March 8th I walked into the living room, sat on my mother's lap in her recliner, called her 'mommy' (which I have never called her) and went into a seizure. She called the ambulance, I had another seizure on the way to the hospital and I was in and out of consciousness. At the hospital my blood pressure was 300/290 and I had two more seizures. They put a foley bag in me and put me in ICU, same room and bed my dad had been in. I have no memory of the 2 1/2 days I spent there.

Luckily for me, the doctor at the ER (this was Northern Dutchess Hospital, NOT Kingston again) was on the ball. He made the call that it was full-out kidney failure and he had me sent to Albany Medical Center.

I spent 3 days in the ICU at Albany. I do not remember any of those days. My mother tells me I woke up a few times and kept insisting I was in Valhalla at Westchester Medical Center. They would ask if I knew where I was and I kept answering WMC.

My memory returns the day they moved me to the hardcore floor of people bad off. I woke up with a catheter sticking out of me and no clue where I was or why I was there.

I spent the next 8 weeks in Albany, going through endless tests and 4 surgeries. It was deemed that I had "Malignant Hypertension" which led to End Stage Renal Disease and the shutting down of my kidneys. The doctors there were fantastic, they ran every test under the sun before they made a diagnosis and they confirmed what I knew from back in December - it was NOT in my head. How they missed the blood pressure and the kidney disease in Kingston blows my mind.

I spent my birthday and Easter in the hospital.

They confirmed that I was NOT a diabetic. All the unnecessary insulin and pills did not help my kidneys. They did not give me Ativan or even suggest that I needed it.

Once the pressure was brought down, it went DOWN. I went to dangerously low levels without medication a few nights and it perplexed even the best of the veterans who said he hadn't seen a case like mine "in 20 years."

They caught a blood infection that was pretty serious. They gave me two transfusions as I was really bad off. They talked to me about the possibility of needing dialysis for the rest of my life and the process of transplant. They kept me in the hospital for eight weeks so they could be totally sure I would be alright when they sent me home.

While I was in Albany my dad surprised everyone and began to get better. Over the course of 8 weeks he passed the swallow test and was taken off the feeding tube. He was breathing on his own with the oxygen in the nose and not needing the ventilator.

I was discharged May 3rd and sent home with 50 stitches, the graft, the catheter in my chest and 4 prescriptions, one of which is a painkiller. I was set up with a dialysis center for 3 1/2 hours 3 times a week.

Next up for me is the removal of the stitches which have become embedded so there will be pain. Once it heals a bit more I will begin getting dialysis through two needles inserted into the graft. Then it's one more surgery to remove the catheter from my jugular vein.

There is a chance I will get off dialysis, my kidneys are not totally dead. We won't know for a few months but it's a possibility not everyone gets.

My dad will be coming home in a month or so, they're making plans to remove the trach he's been so good.

So there it is, start to present. Not resolved, not over, no happy endings yet. If my mother hadn't been home that one day I probably would have died on the den floor and losing a week is scary. I'm here though, I made it through a really rough time. I'm not the person I was in October but I like to think I'm a little better.

Now I struggle daily to get back to the life I knew and mix it with dialysis and kidney failure. Some days I don't do so well but it's still a learning process.

I have no idea what's ahead for me but I know I'm done with hospitals for a long time and the day this catheter comes out I am taking a 3 hour shower.

Some six months, eh?

1. Good lord, that is scary stuff. I am so glad they were on the ball at the second hospital… Kingston sounds like one of the most inept institutions I’ve ever hears of! I’m sorry you had to go through that ordeal :( That is awesome to hear your dad may be home in a month, though! My fingers are crossed for you.

    on  05/27  at  06:21 AM

2. The road to recovery is long enough without having to deal with your first set of doctors, too often they try to pass the buck or blame the patient for what is wrong.  DOctors are an uncaring bunch for the most part and quick to reach a conclusion they know is right, without taking the time to fully understand what is happening.  It took two years and 3 doctors to figure out I had hodgkins when a simple blood count would have told them so.  Sickness sucks, recovery is hard, its good to know you’re out of the hospital and on that road to recovery as is your father.  Seriously consider a law suit against the doctors that dropped the ball and made your condition worse.

    on  05/27  at  07:42 AM

3. Wow. Thank you for taking the time to write it all down… and wow again. You are amazing to have gotten through so much.

   And I’m so happy to hear your dad is doing better too.

   Rachael  on  05/27  at  01:37 PM

4. Holy carp.

   Can you sue the shit out of Kingston? And get a million dollars? I’m not sue-happy, but damn...they OWE you.

   Fingers crossed that your kidneys bounce back, and I’m really glad your dad is going to get to come home.

   Thumper  on  05/27  at  02:31 PM

5. Thanks for writing it all down.  I was wondering exactly what all had happened.

   It doesn’t seem like it has been 6 months.

   Forget suing...I think the first hospital just needs to be exploded.  Too bad there are too many innocent patients in there for that option to be viable.

   (hugs) Keep getting better.  That goes out to your dad as well.

   YummY!  on  05/27  at  09:10 PM

6. Holy Schnike!  If you haven’t already, I would seriously consider consulting with a lawyer over your blatant mistreatment at Kingston! (malpractice anyone?)

   Nicki  on  05/27  at  09:12 PM

7. Holy shit. Your story sounds eerily like my mother’s or mine while I was in the hospital. You should definitely sue, that’s ridiculous. Screw sue happy. It’s not about money, it’s about making people aware that Kingston sucks ass AND dick.

   That’s an interesting reason for the BP. I’ve never seen that.

   Anyway, your story did make me more aware of the need for blood/organ donations and I believe I will donate a kidney when the time comes.

   Bobby  on  05/27  at  09:51 PM

8. Holy shit, indeed ... the few problems I’ve been having pale in comparison.

   Best to you AND your dad.

   jl  on  05/27  at  11:05 PM

9. Call me woman. I’ll call you right back. My calls are free.

   Mare Martell Stotler  on  05/30  at  08:15 PM

10. I am so sorry that you’ve suffered through all of this. I can only hope you have many better days ahead of you and you make a complete and recovery.

    Many (((HUGS)))

    Andrea  on  06/04  at  09:55 PM

11. Jesus, I have no idea how I missed this post. Hope you continue to get better—you still owe me a date

    SEV  on  07/02  at  05:20 PM

12. Wow… I am at a loss for words. I don’t know you too well but the little I do, I know your a fighter. I will pray for you sweety. I don’t know what your religion is but any good vibes cwon’t hurt. Medical problems run high with me and my condition but I know i have never had to spend six months like that :(

     on  08/16  at  09:12 PM

13. Danthor here.. SO glad to hear that you’re doing better now, and that your dad is too! I know something of what it’s like to not be able to get a diagnosis, or get a diagnosis that’s completely wrong, as I have a skin condition that’s still not been pinpointed (nothing compared to your situation, but still bad). Was really worried to hear that you were in the hospital, especially since it had been so long since we talked last. I’m keeping you in my thoughts and prayers, and hoping you’ll pull completely through this.
    Much love!!

    Jeff  on  09/07  at  01:52 AM

14. I remember i read this before but i had forgotten alot about it, not many people have the willpower, heart, and constitution to withstand such a traumatic experience. That is a priceless gift. Salut!

    Vand  on  01/06  at  06:32 PM

15. oh my god.... I am so glad that you are ok, I don’t know what to say, other then, if you need anything, if i can do it, i will

     on  01/07  at  12:40 AM

16. I’m glad you’re alright, hon. Though i still truly believe those retards at the first hospital need to have the living shit beat out of them!!
    I mean, what kind of fucking doctor OR nurse OR any fucking person int he medical profession DOESN’T order a Blood Pressure test before anything else??!
    Hell, whenever I call a doctor on the phone to even set up an appointment, the first thing they tel me to do is get my blood pressure checked!!
    Bunch of fucking idiots, I swear!

     on  01/07  at  05:52 AM

17. Wow,
    Atleast the worst is over, Appreciate you sharing your story. I will wish the best for you. Unleash hell on the stupid doctors at that 1st hospital, that is just plan diralectin of duty.

     on  01/12  at  11:53 PM

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