Tuesday, November 30, 2010

Where I'm at

To the tune of "Where it's at" by Beck

There's two holes a little up my arm
From my elbow and between my shoulder you know
A place where the blood vibrates as it flows
Stick the needle in and get a fresh flow
Sending blood to the machine to make my creatinine low
Two dull needles in a fistula
Bottles of bicarb
just sitting there and just setting there

Where I'm at!
I've for two dull needles in a fistula
Where I'm at!
I've for two dull needles in a fistula
Where I'm at!
I've for two dull needles in a fistula
Where I'm at!
I've for two dull needles in a fistula
Let me go home, my blood pressure is ok
Thats not something I can fake

I wont end up on the side of the road
With my high pulse and low BP, I feel ok
Blood type O+ only
Shipped miles by ambulance drivers
Pack my shoes and have no flu
Showers at 3am the sky is blue
Driving 5 hours to Halifax
let the kidney match

Where I'm at!
I've for two dull needles in a fistula
Where I'm at!
I've for two dull needles in a fistula
Final antibodies are positive
Lets get out of here

I've for two dull needles in a fistula
I've for two dull needles in a fistula
I've for two dull needles in a fistula
I've for two dull needles in a fistula
I've for two dull needles in a fistula
I've for two dull needles in a fistula

Where I'm at!
I've for two dull needles in a fistula
Where I'm at!
I've for two dull needles in a fistula


Friday, November 26, 2010

I was finally able to get two dull needles in

I was finally able to do it, today I was able to get two dull needles in, one in the lower and one in the upper holes. They really just slid right in, there was a little bit of pressure needed for the bottom on. The upper one however I didn't even know it was in until I pulled back on the syringe a little. It just slid right in, no more pressure was required than the ultra sharp ones I had been using.

The plan for next week will be I'm back at the hospital Monday and Tuesday to make sure I can continue to do this. I'll be off Wednesday and then I'll be doing my first treatment using the needles at home on Thursday, it will be during the day for 7 hours my nurse is going to come out. The final plan is to get me back to work by the next week. Only 1 week later than expected.

I'm still not pleased with having to give myself needles, I don't think it's something I could ever get used to, but at the moment it's something I need to do, and it gives my more freedom than having the line in my chest. Lets hope I get another call for a kidney soon so that I don't have to continue to needle myself.


Thursday, November 25, 2010

A week of dulls and sharps, needles and pain.

Here is the weekly recap. I started Monday out with a bang. We tried dull needles, in both the upper and lower holes. I tried the lower hole first, and it simply was not going it. I could get in through the skin and tissue, but it wasn't going into the vein. At one point I actually thought I got it in, I felt a pop and the needle moved forward. This was probably just the vein moving out of the way. My nurse then tried her hand at it, and it did the same thing, except this time is scraped the side. If anybody has ever given blood before and they accidentally pierced from the inside of the vein out, it hurts.. a lot. This however was 1000 times that pain, it may have been one of the most painful things I have felt in a long time. We decided at that point to just use a sharp needle in the lower hole. I was able to do this myself and get it right in, even after that immense pain.

After that we moved on to the upper needle, after the problems with the first I was hesitant to try the dull again, especially in the upper hole as this is the one I'm still not 100% comfortable with because it is rather hard to feel. I figured this is something that needs to get done though, and just swallowed my fear and agreed to the dull needle again.

Once again the dull needle was not going in, I tried and the nurse tried but I stopped her because I was simply still jittery about the pain I had just experienced and did not want to risk it again. I took over with a sharp needle and I was able to get in in. Or so I thought.

For the first hour of treatment the veinous pressures were higher than usual, and they kept creeping up. The max pressure that has been deemed safe is 200, and it was now jumping between 200 and 210 at a slow rate (ml/min). It turns out I hadn't inserted the needle into the fistula vein, it was in another vein that ran on top of the fistula vein. The nurse took the needle out.

She decided that she was going to put it pack in in a different spot, just slightly above my normal area. She froze the area with a shot, and then she put it in, and again it ended up in the wrong vein. Next we tried a spot just under my lower hole, she stuck the freezing in. By mistake, because the vein here is right up against the skin, she stuck the freezing into the vein. The freezing needles to be in tissue, not a vein so she could not administer it. She stuck the needle in, and got it right in the correct vein. This was the last needle for the day, but if you are counting that is 8 needles in total in my arm that day. It was not a fun day.

The rest of the week has been fairly uneventful, we have finally started getting dull needles in the upper hole, and we are going to try the lower tomorrow again. Hopefully it goes well.


Thursday, November 18, 2010

I have touchably soft skin

I have touchably soft skin. The nurses say I have really soft skin, that this is why it is so sensitive to all the tape and needles. The end goal of giving myself the needles is that I will be able to use dull needles at home. I keep giving myself the needles in the exact same spot and the same angle it is supposed to develop a track for the dull needle to follow.

Every few days we try a dull needle. So far even though I have two obvious needle holes in my arm the dull needle just will not puncture my vein. So while my skin is touchably soft like warm butter on a babies bottom, my veins are much thicker.

Today we tried the dull needles again, and again they did not puncture the vein. There is not issue getting them through my skin and arm meat, but the vein just is still too strong. The point of the dull needles is that when I come home I will be sleeping with the needles in my arm, and it can be dangerous to do so with the sharps. This was illustrated to me today.

As it has been doing the last few weeks my blood pressure dropped near the end of my treatment. As I think I've mentioned before my body simply is not used to the faster conventional treatments. The fluid I have built up doesn't move fast enough so I end up too dry, and then my BP crashes.

It did this today, one of the counter measures to this is to lower my head beneath my legs so that my blood goes to me head and chest. We did this today while I was still connected. While moving about though my arterial needle slipped out of place puncturing the vein. The arterial is the return line so when it went out of place I had 300ml/m of blood fill my upper arm. The machine stopped quickly when it sensed a pressure increase but it still hurt like hell.


Wednesday, November 17, 2010

Back to Dialysis training today

Well it was back to learning how to stick huge needles in my arm today. Yesterday morning I thought I wouldn't have to do that anymore, turns out I was wrong. I am getting better at it, and have hit my vein every time for the past week. I would just rather not have to do it. The nurses were obviously upset for me, when I called them on the way down Robie street to tell them I wasn't going to be there yesterday you would have thought they won the lottery. When I called them after finding out the bad news to schedule coming in today it was the complete opposite reaction.

While talking it over with them it turns out this has only happened to 1 other person that they work with, and they said they are doing "good" now. Obviously they are not able to go into details of another patient, but I took good to mean they have not gotten a Kidney. While it does certainly really suck that yesterday did not work out for me, it does give me an indication of my position on the list.

These past 16 months I've talked to many people have been on dialysis for years, like double digit years and I just and I was simply dreading that. Even though I had been told 2 - 3 years is the average, it seems if something is going to go wrong, it goes wrong with me. I have a whole list of things that have happened that I was told almost never happen, but did to me. Yesterday is just another item on that list.So hopefully my next call will come sooner than 16 months.

I also found out while down there that they have done 90 transplants in the last year. That is significantly more than I had thought they did per year. All this time I thought they only did maybe 1 per month, which is why I was dreading the wait on the list.


Tuesday, November 16, 2010

The Play by Play

Early this morning, November 16th 2010 at around 2:45am I was called to go to the VG hospital in Halifax. A kidney became available that was thought to be a match to me. This is a breakdown of what happened, and why I ended up coming home within a couple of hours of arriving in Halifax.

2:45am - The New Brunswick Transplant coordinators call my home. My father answered the phone just as I was waking up from hearing the phone ringing. I was still drowsy but I heard him coming up the stairs talking to somebody on the phone about me, and I knew what the call was.

I take the call and get the information needed. I need to go to the VG hospital in Halifax, the Dickson building 6B. The ask how soon I can be there, I say it will take an hour to get organized here, another 5 in travel time. A time of 8:30am in thrown out and I say thats fine.

I tweeted "Holly Shit going to Halifax for Kidney" to which I quickly as a number of congratulatory replies.

I have a shower and pack my bags. I included clothing and charging cables for my iphone and DSLR. I plan on documenting my trip and post transplant. I also sync a few more movies to my iphone, I consider bringing my laptop but decided against it.

3:30am, I'm pulling out of my driveway, from call to go to actually going takes only 45mins even though I didn't have anything prepared to go. I think thats pretty good time.

My mother is traveling with me, we make 3 short stops for her to stretch, I use them to tweet my current location.

6:30: we get to Truro. My mother took over driving. I had only had 1 hour of sleep and while I could have gone all the way, I wanted some time to just chill. Truro is almost exactly 1 hour from Halifax.

7:30am: We reach Halifax, right at rush hour traffic, it takes another 30 mins to reach the hospital.

8am: We get to the hospital. It takes no more than 5 mins to reach the proper floor. I went to the nurses station and introduced myself. I was immediately taken to the side by a doctor and into a private room.

I knew there was something wrong.

I was told that they did the final antibody testing between my blood and the kidney. The results came back positive. I wasn't sure what that meant so I let him just continue.

What it meant was that there was no way this Kidney was going to be able to live in my body. My body had antibodies that would attack and kill this kidney, it would never have lasted, possible not even work the moment it was put in.

I am told by the transplant coordinator there that the virtual testing that they do in the computer showed the antibodies as being negative, but once they did the real test, just an hour ago, it was positive. I am told that in the two years of them doing the virtual simulated testing that this is possibly the only time they have ever seen a different result than the actual testing.

I think to myself that this is simply one more thing I can ad to my list where something went wrong wrong for me that almost never happens ever.

She continues to say that this is not really a bad thing, that its good it was caught and tries to be positive and make me feel better. I just sit politely, but really just want to get the hell out of there. Nothing at all to do with her, I just simply don't want to be there at that moment.

My mother and I leave, spend a hour looking for a Smitty's which doesn't seem to exist, end up going to McDonalds for breakfast, make a quick stop at Home Outfitters (I wanted to check out the cooking supplies) and then drive the 4 and a half hours back home.

I guess a positive thing to take from this is that I'm higher on the list than I thought, that I know next kidney that comes up that is compatible with me, I'll be right there, that in the off chance that there is another person on the list that has the same blood type and tissue typing as I do, I am ahead.


Driving to Halifax

I got the call, well about 4 hours ago now. My mother came with me, we just switched off driving duty. We are about 1 hour out from Halifax, where I will be going to the VG. I have to admit that I'm nervous in regards to the procedure but excited too.

Sent from my iPhone 4

Holly shit, I'm 10 mins out from being on the road

Got the call 20 mins ago, packing to go, t minus 10 mins to launch

Thursday, November 11, 2010

I had a shower!

I had a shower today, and it was glorious! The water beating off my bare chest, it felt like feathers caressing the soles of my feet. It felt great to finally be able to get in the shower. It's been 16 months. I'm not even really sore anymore from having the line removed. There is sort of like an indentation now above my right nipple. Its like a small innie belly button right there on my chest. I sort of hope it doesn't go away, it's kind of funny and cute, like Liz Lemon.


Wednesday, November 10, 2010

It takes a man to open a Jar, but a woman to get it started.

Yesterday I had my central line removed. Now for the first time in 16 months I don't have a tube coming out of my chest. I was excited about it coming out, not so excited about it being removed. It's a pretty simple procedure, I didn't even need to take my chucks or pants off.

I was laying on a gurney, they didn't even need my on the real operating table. I ask about how these things normally go. The nice lady said that normally they come right out, and everything goes smoothly. She said sometimes they are a little grown in around the bulge that holds them in place and take a little extra yank to get it out. I told her that if anything is going to go wrong, it's going to be with me. This has been my experience you see, nothing goes smoothly, if something can go wrong, it's going to go wrong with me. She said that I was being ridiculous, I said just watch.

The nurse cleaned the area, she then starting pulling on it, she pulled it and pulled some more, it just wasn't coming out. There was one nurse to my left holding me down, while the other pulled, each time my right side would rise from the table. I wasn't raising it myself, nope it was the line pulling my up as it was yanked on. I have to say it wasn't the best feeling having her pull on it. So she told me she was going to have to get the doctor to do it, because he was a strong man and will be able to pull it better than her.

While waiting for the doc to come, she likened the situation to when a woman need a jar opened. She tries her darnedest to get it open, but just can't do it. She gets her husband to come and open the jar, and of course it opens right away because it was already loosened by her. While I was the jar, and the tube in my chest was the lid. The doctor came in, and after giving it a good once over, just gave it on good pull. Then *pop* it came out.

Thats is the sound it made. *Pop* put your index finger in your cheek, wrap your lips right around it and bend it forward and out. It makes a *Pop*. Thats the sound of the line coming out.


Thursday, November 4, 2010

I stick them in, and then 4 hours later I pull them out

Yup, I'm now to the point where I'm sticking my own needles in pretty much without assistance and taping the down, hooking the tubes from the needles up to the machine. All this with just 1 hand. 4 hours later I'm pulling them out myself and not making all that much of a mess. The needles as you may remember from my picture a few weeks ago are pretty big, 16 Gage to be exact.

Right now I'm still using sharp needles but the goal is to keep putting them in the exact same position so that I can us dull needles. I will have 2 holes in my arm, the idea being that eventually it would be similar to putting an earring in, I don't have an piercing so I don't really know what that is like, but right now it is somewhat painful. I just grit my teeth and just keep pushing the needle in until I'm in the vain, then level it off and finish inserting it all the way.

My blood pressure has still be dropping at the end, today it got as low as mid 50s over mid 40s. I was already disconnected so the nurses considered putting my on an IV drip to give me fluid to bring it up. I didn't end up having to do that but they were treating it pretty seriously, I felt ok though so I was just relaxing.

Tuesday next week I will be getting the line in my chest out. After 16 months of having to sponge bath I will finally be able to have a proper shower next week, and simply be more comfortable not having a tube coming out of my chest, I can't wait. It was originally scheduled to come out this past Wednesday but there was some concern that it was too soon and postponed a little less than a week.

I'm still just completely beet so for the next little while there may only be weekly updates, I'll try to keep up though.