Tuesday, October 22, 2013

My health adventures part 5......

Sorry these are late,I thought I posted them but actually saved them as a draft...ooopsies.
I'm gonna try to shorten this up so I can get you up to current a bit quicker.

I did really well at home. Withing 2 weeks I went from sliding around in a computer chair that had wheels to a walker. Then about 5 weeks after I got home, I had my cane and a bit more freedom.

I currently see a hematologist, a neurologist, a gastrointestinal doctor, and a liver specialist (can't remember what he's technically called, lol).

I met with a liver transplant specialist. He said he sees patients like me all the time. I DO NOT need a transplant, at least not now, maybe in 20-30 years. He explained that there is some liver damaged but it acting up was caused by something else. My liver is a symptom and something else is the cause.

My hemoglobin keeps bottoming out. It's been as low as 6, it should be between 10 and 12. I was getting sick of getting blood transfusions so my GI doc sent me to the hematologist. He ran tons of tests and couldn't figure it out.So now my home nurse draws blood every week to check it, and if it's low I get  pro-crit injection.

The neuropathy in my feet and legs started 6 months before my liver episode, so the liver doctor figured the answer would be there someplace. So my neurologist has been busy trying to figure out

Okay, I'll spill over into one more post, this is getting way long. But it's the finale, I promise, lol. As I now have some answers.








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Monday, October 21, 2013

My health adventures part 4...

It didn't take long for me to realize what a shit-hole (excuse my french,no other word does it justice) the home was. I experienced watching these people ignore elderly patients, refuse to give them their meds, scream at them. They really couldn't stand me, I was coherent and observant.

They had started giving me a pain pill that I knew I wasn't suppose to take (it would damage my liver further) so I argued with them about it. Then they "threatened" to call the doctor, so I picked up the phone and called for them . Yep, he said I was NOT to get that medication  and couldn't believe they were giving me medications that I had been on all the way back in December, not the ones I was prescribed in March.

I was in the home until April, that's when my insurance ran out and I was ready to run out the door. So, they I had a choice: go home still unable to walk or stay with them. They would take my disability check every month, then bill me for the difference. So, my check is $853 a month and it cost $210 a day to be there. No need to do the math there. I weighed my chances and decided that I was sick of having the life and joy and will sucked out of me by the vampires. I'd rather take my chances at home not walking, at least I'd be in a healthier environment. So home it was.

Needless to say, the director, etc. at the retirement home hated me.

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Sunday, October 20, 2013

My health adventures part 3...

Did i get better? What happened? Um, not a whole lot.

While I was in the home, but had to be hospitalized, I met a really nice doctor. He came in spent some time talking to me and finding out what was going on. I was shocked at this point I had "seen" over 20 different doctors, all of which would watch their watches and run out of the room after exactly 2 minutes. But this guy had already been in my room for 5. So I explain what had been happening, that  needed a transplant and no idea how to go about it.

He leaned over, shook my hand, and assured me I would have a name or phone number to call before leaving the hospital. And he backed it up. I was so impressed, he's now my doctor and I brag about him to anyone that has ears to hear.

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Saturday, October 19, 2013

My health adventures part 2...

In the ER, they called my original doctor. He would NOT readmit me to the hospital until I agreed to go to a nursing home to get physical rehabilitation. Yeah, the doctor in the ER couldn't believe it either. If I didn't go, what were they going to do with me? Dump me on the side of the road?

Keep in mind, they still have no idea why all of this is happening, or exactly what is happening. I'm loosing weight, unable to eat/hold things down. I've already lost over 25 pounds. I can't walk without the help of 2-3 people, my legs won't hold any type of weight.

So I reluctantly agree to go. Now most people would spend a day or two finding out about places and finding one that would best meet the needs they had. That's not the case here, I was given 48 hours to find a place and be gone. So I ended up in the first facility that called me back with an open bed.

When I first got there, the director started to give me the "thank you for choosing us" spiel. I had to inform her that there was no choice involved.

The home is basically set up for people to be dropped off and ignored while waiting to die.

I arrived with a set list of medications that I had been on in the hospital and the home followed it to the letter. Leading to me being over medicated when there was a bit of improvement.

You have to call outside doctors and make appointments, sometimes the home would get you there, but most of the time not.

There are no tests run, no discussion of your condition or how to deal with it. In my case, with liver failure, I was deemed an alcoholic/druggie that wasn't worth their time. One evening when I took a turn for the worse, a nurse asked the director if she should call an ambulance, the director said to do nothing for me, just let me lie there. The nurse was so upset by this, she called an ambulance anyway (one of the times I ended up back in the hospital). She was fired a few weeks later.


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Friday, October 18, 2013

My health adventure part 1


So, they admit me and start running tests. I have every test known to man run., but there's no answers.

Doc 1 says he thinks it's some virus. He runs no other tests and treats me for nothing. He also points out I’m jaundice (yellow).

Doc 2 runs even more tests. When asked what's wrong, he says he doesn't know. Then later changes his answer to chirrosis of the liver. He also tells me I need a transplant. But he has no idea how to go about getting a transplant, who to call or any type of general information. Something he repeats numerous times to not only me, but my family also.

I stay in this hospital from dec2 until dec24. After hearing me complain (I really wanted to spend christmas at home), the doctors say the test results are good and I can go spend time with family. But I still need a liver transplant (remember this, it'll be important later).

I was home for about 4 hours. It didn't take long for the uncontrollable vomiting to return, along with increasing numbness and pain in my legs. I couldn't walk. So 911 was dialed and back to hospital I went.

The fun continues......
 
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Thursday, October 17, 2013

the beginning of my issues....

They seem to be piling up right now. I'll try to start from the beginning and run thru them without sounding like a total psychopath.

I suffer from anxiety and severe depression, I have since my early teens. It's a bitch. Meds have never given much relief. I just grin and attempt to bear it. Tho the anxiety makes it hard and easy at the same time.

My anxiety keeps me isolated. I HATE leaving my apartment and avoid it at all costs (you can at least count on me to always be home). But it has also prevented me from finishing college or having any kind of career. I plan outside activities to be quick. I know when the local store is busiest and avoid it. Being around crowds and strangers causes panic attacks. So it's nicer to stick around home, less stressful.

My doctor use to refer to me physically as "healthy as a horse" even tho I ate horribly and never exercised. Then December 2012 came, I got the flu that turned into pneumonia, so I visited the doctor. She prescribed antibiotics and taking it easy. On the way out of the office, she decided to take a blood test because I looked bloated. I didn't think it was a big deal, it was Friday and I was about to turn 40 that Sunday. The weekend went off with out a hitch. Spent a quiet nite on my bday, didn't even give a thought to the blood test.

Then my phone rang early Monday morning, with my doc telling me to go immediately to the hospital, they were expecting me. I argued a little, just thinking she was blowing things out of whack. Then she informed me that something was wrong with my liver.

So the adventure began.

I was admitted in full blown liver failure, hitting me off guard. After all, I couldn't think of any reason for it happening.

I have a set of posts to explain my adventures in hospital land (to follow). It has been definitely different, not fun.

As of this writing, we're still trying to figure out what's going on with. I'm still unable to drive or stand for long, my 4 prong cane has become my new bestie, my walker has retired.

I live alone and do all right. Tho i have to do things differently than before. I climb stairs one at a time. Can only take out small shopping bags of garbage (read: daily trip to dumpster). Have to strategically plan my monthly shopping trip. Cuz if I run out....I'm out til the next month unless I can talk my sister into making another trip.

We're still going thru tests and brainstorming diagnosis, but haven't found anything yet. My doctors say we might not. I may not get a concrete reason why i got sick, am sick, or how to fix it. In the meantime, all we can do is keep treating the symptoms in an effort to keep my body going.


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I'm still here

No I didn't go into witness protection or get hit by a truck. I've just been away dealing with a lot of real life stuff, like major stuff, health stuff.


I've broken it up into a few different posts (if not, there would been a 1,000 mile long post and I don't want to bore you all to death).

So stay tuned, it's about to get real interesting.

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