Update

Ok, it's been a week since I've been sent home from the hospital, things got rather crazy while I was readjusting to life at home. There were several issues waiting for me when I got there, a broken pipe that required a plumber to be called, getting used to the kids therapy scheduel again and all the other things that come with having a home that's been pretty much unattended by you for almost a month. I'm not saying that the menfolk didn't do a good job, cause they did wonderfully so. It's just..I prefer to do things a certain way. They don't do them that way...any other housewife out there probably knows what I mean.

So, I've been sent home with plenty of instructions and medications and things seem to be stable. Today I -did- have to go to the ER because my picc line came out of my body and required replacing. I was wonderfully sent home afterwards. I arrived there with an overnight bag, just assuming that for some reason I would be sent to the floor in the inpaitent wing. I have never been so glad to be wrong.

Readjusting to dialysis hasn't been easy, I've lost so much weight in the hospital that my "dry weight" has to be redetermined. This means that every other day until it's gotten right I spend my dialysis time throwing up and cramping, I get home and collapse.

There's been some family stress as well, DH and I had a prety severe (for us) argument last sunday that left us both feeling washed out and unhappy. It was resolved by the next day's lunch time (which I made darn sure that I met him at work for as a suprise) Learning to do everything again and taking the time to try to de-stress and all of it has been a learning experiance. As such I cherish it, even the hard times.

I miss the times when I knew for certain that I'd be home, and that things would/could run like clockwork provided that nothing huge happened to derail us. Now, every other day I wake at 5:30am, go to dialysis and live in fear the whole time even dreaming about being admitted to the hospital while there (because I do everything in my power to sleep through the sessions) and then hopefully..come home and breathe a prayer of thanks for being able to return.

I have been thinking about christmas eve (We celebrate both since DH is christian) and I have this menu in mind that I desire more than anything to create. I've got the recipies and I've made the shopping list but I'm almost afraid to go and get the things nesessary to make it happen. It requires a lot of prep, and most of it could be done this week and the entire week before christmas so that I'm only steaming, baking, and roasting on christmas eve proper. But, I'm afraid. I'm afraid that I will do this and the prep will be for nothing because I will be in the hospital and the things I prepped will go bad because they had a limited shelf life. (For example, the liver paste for the beef wellington)

On the other hand, the part of me that's not afraid is chom[ing at the bit to get it done so that we can have a romantic christmas eve with all the traditional food and mulled wine my overly traditional and idealistic mind can encompass. I'm trying with everything inside me to hold onto this part of me. As I was taught/learned/relearned this weekend...Faith manages. So...I hold on and I make my prep list and I try to get the house to a point where I know that we can sit and enjoy.
With Faith and Joy,
Kristen

Catching Up

Well, they think we are out of the woods right now at least. 2 Days ago I have my Vein Graft operation since they did indeed find some veins with using in my lower right arm. The operation took 6 hours and it's only today that I've been sane enough (Read not in too much pain) to write.

   The Docs are being rather standoffish, I'm back to not getting real clear answers about much and on Monday it's going to be one hell of a firestorm here if I don't start getting them. I have some concerns about my graft since the incision site is red, swollen (more than the rest of my arm) and hot to the touch as well as being hard. I'm also running a low grade fever and have been since the surgery. To add to the bounty of "Oh, Shit." my PICC line has become dislodged by about 5 inches. The IR team has to replace it.

   My old Nephrologist, Jamie had stopped by the other day and Promised that sometime this week he would come by and talk to me about the next steps towards transplant. I hope he's able to keep that promise cause I know he's busy as heck.

   Emotionally, I'm doing about as well as you'd expect. Some days are good, some days are bad and some days I just wish I hadn't woken up for that day and just slept past it. I'm still butting heads with Dialysis/Kidney team because they are doing the "We're separate from the rest of you doctors, We're better..We don't have to schedule along side you with our patient and we don't have to share any information with her either." Bull and shit.  I finally got one of my docs to part with my kidney blood work values and agree to do so on a regular basis. I can't make informed decisions about my care (or my diet for that fact) without them. In a lot of areas I'm still having to push and argue to get what I consider the best care for me, and it's tiring. Emotional and mentally exhausting. Add to that the sick feeling of just not being right physicially and it's one big ball game of "just shoot me now".

In other news, I want to take a moment to thank all those folks and agencies and ESPECIALLY the folk of Temple Sinai for all the help that you have given my family in this very upsetting and difficult time. I can't even begin to say enough about how awesome people are.

In a day or so, the website : KidneyforKristen.org will be up and will be the new house for all these updates and information. I hope when this is done to expand it to an advocacy group, but that's for the future.

A fistfull of updates

   First, I apologize for the lack of updates in the past few days, it has really been that crazy. As you saw on Monday I got introduced to the WONDERFUL Resident, Anna Donnovan who seems to think that because she's almost a doctor she doesn't have to have manners. Anyhow, Monday was just terrible...Doctor disrespecting me and my husband and generally in a lot of pain. The only good thing I think that occurred was she -did- listen to me when I told (and showed) her that my hives were back and she increased my benedryl.

   So, Tuesday I had surgery to see what veins I had in my upper body that are still usable. I didn't think that they would find anything honestly, but it was worth a try. So, I got myself ready..nothing by mouth after midnight (Which in a dry air environment is torture, if you hadn't known)  and waited until they called me, armed with a dose of pain med and a dose of no itch med so I didn't itch and scratch my way off of the operating room table.

   I get there and I find out that I'm to be under sedation not general anesthesia. This is my first warning bell or should have been. I alerted them that I signed consent for general and I preferred it because I know that i am hard to dose with sedation meds. My words fell on deaf ears..except the part of course of having signed the wrong consent..so they brought the right one and had me sign it. Sighing, because I know this isn't going to go well they proceed with sticking me with more IV's since my PICC does extend to the right places. I get medicine that's supposed to put me "to sleep" but able to answer simple commands. At about the 1/2 way point, I wake up..like..really my arms are covered in blood and I scream, freaking out. They then hit me with a dose so hard I fell instantly out again. When I was awake, I was on my way to my room and got to the nurses station and (From this point on I am going on what I am told because I blacked out) I apparently leaped out of the stretcher and ran into my room and proceeded to have a nervous breakdown of some sort.

   It must have gone OK enough because no one has said anything poorly of the situation. I managed to get dialysis pushed off until later that night since i just could not handle back to back stuff like that and rested a bit. When I did go to dialysis they looked at my catheter and said "well, that needs to be replaced". Yours kidding me right?! *sigh* so the cuff that is supposed to form a seal so bacteria can't get in and so that the catheter itself can't just fall out was sitting outside my body. It never got situated into my body.

   SO fast forward to today, I go to IR (Interventional radiology) and they look at it..then take xrays of it and work on it. They get one out and a new one in and I hear from the Doc "Oh shit." They nicked an artery. I tried to remain calm while they fixed that and somehow they either gave me too much meds to keep me calm or something..I blacked out and my stats dropped. I woke to having an oxygen mask on my face. So they got a second catheter,,since the first one they put in me wasn't working right and apparently there is this second type that should work better. It took FOREVER because a tech had to go all over the hospital to find one. There was ONE left. Period. He got it and it was put inside me and that was that. 3 hours later. On a procedure that should have taken 10 mins.

   So, It snow this afternoon, and I'm resting coming down from the day and I am told that indeed tomorrow will be the day that they put in graft and it's all coming together. From that point forward, noone seems to really have a concrete plan!

   I will write more as I know it!

Concerns

I've spent this entire hospital stay going from one issue with my health to the next. Thing is, that was OK. I had a great team of doctors that understood me enough to work with me. I was real nervous about the teams switching over, things don't get passed over correctly, they possibly change the entire plan I was comfortable with etc. I let people know my fears. Today the team switched. Every last fear and then some were realized. The Intern, is an arrogant little bitch who after being told that my husband wanted to speak with her and her accepting, came back into the room 5 mins before he gets there (going out of his way, mind you) and tells me that "something came up" and she can't talk to him tonight. She suggests other times, all on the phone (which he hates) and not in person. All were times that I had previously explained to her were times he worked, was doing something else, taking care of the kids etc. When I suggested that this was awfully convenient, she tells me "I didn't even have to let you know this, I could have just gone and not been available." Well, yes I'm sorry yes you did have to tell me. You were canceling an appointment to speak to the spouse of one of your patients.
   It's all over now, I've asked to be transferred to a new team of doctors and explained to the nurses that I absolutely will not work with such rudeness. Her plan if she has her way is to get a graft in me (which she is convinced is accessible immediately and the vascular surgeons verified with me for a third time that it indeed is not) get me transferred from a heparin drip and changed over to pill form blood thinners and once my blood is therapeutic send me home. No testing for transplant. No nothing working towards that reality.
   Add on top of this that the catheter in my leg is an issue. Say they even find a vein that's good enough (still a big question if they will tomorrow) and the graft isn't usable for a month, this leg catheter causes me so much pain right now that I am regularly crying in pain and require high amounts of pain meds to make it bearable. She's said nothing about this issue. I've brought it up many times today. I'm not getting the answers I need, and I'm not pleased. If I wind up moving on further and this keeps happening tomorrow and/or I don't get transferred to a new team I am going to have to use Condition H (Which is the hospitals lifeline for patients and their family when they think somethings not right and no one else is doing a damned thing about it) I'm not 100% how it works but I will be asking my nurse (who I adore tonight) tonight so I have the information.
   As it stands...Looks like I'll be back home in 2-8 days.

Oh; PS to Dr. Amanda who said she would check this blog to see how things went- "You were so wrong about me getting along with this rude, superficial and ill mannered person who seems to think she's going to be a doctor some day. She shouldn't be dealing with people at all in any way. Research maybe...Administration would be even better..then she can be rude and people will just nod and smile since Admin. is filled with hot air and nonsense.

Transplant and Time and Illness

   So many people have reached out in an effort to assist my family and I while I am going through this issue. I've also seen the eagerness in some of them. I know you are eager, folks however there are somethings about transplant you need to know. (especially on my case)

• I have Endocarditis, which is an infection on my heart. I cannot even be listed as available for transplant until they are finished with the Antibiotics and the TEE (camera down my throat to look at my heart test) is clean. The reason is, if this infection is not cleared up it will infect the new organ and because I will be on Immune Suppressants and any infection while on those could kill me.
• While I have this infection, I have been going through my "work up" which is a bunch of tests checking just about every major system in my body to make sure there isn't any further damage we didn't know about. At this point, I only have one or two tests to have. 
• Using this time (For potential donors) to get your own workups done is a great and valuable thing. It will make sure that whoever winds up as a donor is ready when I am leaving no gap for something else to occur.
• For those who wish to be living donors, you have no idea what a wonderful gift you are giving me, however meeting the guidelines is so very important as is making sure you are patient while we ride through the process together.
• It is also a rule/law that you be over 18 to donate to me. I have seen some people on various bulletin boards saying things about wanting to, but can't tell their parents because they would say no. If you are of an age where you have to listen to your parents legally, then there is no way you can donate yet. I'm sorry , but if you still want to help me feel better, I love getting cards and letters. 
• I highly suggest potential donors read this website: http://www.livingdonorsonline.org/ It has wonderful current information and answers questions you might have concisely.
• There is an issue of cost to also keep in mind. Insurance covers the cost of the medical stuff, however there will be time off from work and the bills, they don't stop because your a saint and gave up an organ (not being sarcastic here, I really think anyone who does this is a saint) To help with that, my family and I have set up a guest room in our home for the donor to come back to and recover. Meals etc will be provided. We are currently working on figuring out some fundraiser to assist the donor with expenses.

 I'm glad you took a moment to read this, and I hope to hear from you soon! 

Todays Med Update

Well, last night was fun! (not!) I had a running 100.4 degree fever (I know not very high, but any fever right now is suspect as a sign of sepsis) and some fairly amazing pain and dizziness and after dialysis tachycardia (Fast heart rate). I should perhaps go in order, I get ahead of myself.

   Early in the afternoon, I was sitting in bed on my computer and I sat up straighter to ease my back a little and the dialysis catheter..slipped..somehow. It's been annoying and quasi-painful before this but this time it hit something serious. Tears sprang to my eyes and I began bawling with pain. This is not something I do, I am pretty stoic in the face of most pain. So the nurse being a sweetheart stayed by me while she called the doc to get an OK for more pain meds. After what would be enough pain meds to knock out a village, I was mostly comfortable again. I went back to my chat room and putzed around (since doing anything productive that doped up was out of the question)

   Eventually they called me for dialysis, being smart  I asked for zofran ( an anti-nausea drug) So that I lowered my chances of puking my guts out in the clinic again.After dealing with the most surly patient care techs and got set up, the catheter sputter and bubbled but, in the end they got in a full treatment. As I was leaving the clinic the nurse let me know that my heart rate was too fast, and we sat for a while but it didn't really come down. I eventually went back to my floor and room, and almost passed out in the few steps from wheelchair to bed. Until then, I wasn't aware that it was possible to be dizzy sitting down. I got settled and tried to go about my night.

   I had had the feeling longer into the evening that maybe I had a temperature. So, I checked it it was 100.2 , so I called my nurse in and she took blood and I called it a night. When I woke the fever was gone. I hope that the fact that I had even a low grade fever in the last 48 hours won't stand in the way of doing the procedure to my veins Monday. I will have to ask the Doc when they come in sometime today.

Personal Update

   I know I've not been so good about posting more than just the facts. I'm going to try to be better about that. I'm doing OK enough morale wise so far, the news that I'm here for the long term wasn't something I had not already expected, even before the doctors said as much. I've been spending most of my time being completely overawed by the help that everyone is giving me and my family, and really we couldn't do this without the help we've been granted. Even still...it amazes me.

   People have been asking for my contact info/address etc so that they can send care packages and cards and what not and others have been asking for the main house address so they can send assistance there. I will be putting up a simple webpage today with all that information as well as a paypal link. Some folks are insisting beyond my protests of sending cash assistance. I won't say it isn't needed or that it isn't appreciated immensely..I guess I still have some remnants of pride left.

   What I will definitely be doing though is organizing the names and addresses of those who are assisting, getting tested etc and sending out cards and personal letters and what not. I seriously enjoy that type of activity and think that everyone enjoys getting a letter or a card in the mail now and again in this world of instant everything (especially instant communications).

   Also, thanks to the ideas of some of the folks on facebook, I'm going to start a fundraising campaign for the person who eventually becomes the donor. The medical expenses are taken care of, however there's recovery time and lost work to consider. It's the least I can do to help things along and take care of the people who have helped me and my family.

   Well, I guess that's about it for now, I will be writing one more bit on the donor process since a few folks seem to have some serious misconceptions.

Once again though, I am sending out a huge "thank you" and a huge hug to everyone who is pulling for me. It helps me to remain strong and helpful!

More updates.

   Well, Most of these updates are from late last night when a few last moment plans were made. The vascular surgeons came in to see me and discussed various options (or should I say lack thereof?) for access. Let's just say they are not pleased with the situation. No one is really. My PICC line is in one of the last good large veins in my body left, leaving the doc a bit upset, because that makes it useless most likely for access, since I need the PICC line pretty badly for medicines since my other veins are trashed. My in the crook of my elbow vein on my right arm has a clot. Right leg has a clot, Left leg has a catheter..and probably a clot after the cath is pulled.

   So, next week I go in for an exploratory procedure that will show all the veins in my upper chest and how they are. It uses contrast dye not something I'm fond of but oh well. Apparently I need to be put under full sedation for this...I'm not sure why but I have to assume it's a painful operation even though there aren't doing any cutting I don't believe. Before they do that though, they need to speak with the hematologist to perhaps explore why I'm still clotting even on heparin.

   Unfortunately, the dialysis catheter I have now is rubbing up against something rather painful and making me quite uncomfortable. They promise to look at it, but I can tell they are more concerned about other things. It irritates me a little because i'd like to start stepping down from my pain meds.

   It's really rather strange, each doctor on my team has such different outlooks on the situation. Especially the residents and Interns. One has a no nonsense view and told me flat out I'm here for a while. One seems to think that they can get me to go home (He's the youngest and least experienced) and the specialists are all annoyed at the things done and not done because it's not ideal for -them- and each specialist contradicts the other. So I sit back and wait till all the information comes in and put it together in my head on my own till it makes sense

Testing and meetings and Update

Had the TEE (otherwise known as camera down my throat test) and it revealed that the infection that is growing on my heart is indeed getting smaller. It was almost an inch in size in the beginning, it is now 1/2 inch maybe a little smaller. Doctor Ray (Otherwise known as Dr. Awesome) came in to see me after the vascular surgeon did a quick look over on me. He then gave me the news that really annoyed me.

   I'm in here until the antibiotics are done. That's December 15th. It's  more likely that I will be in until after the New Year, and just remain through the transplant. It's a long time. I'm wrapping my head around it now, preparing to spend a lot of time in this bed and on this wing.

   Now, there is a chance that Vascular surgery will be convinced to do it anyway. No one is thrilled about doing this surgery at all. If that happens who knows what will occur. It will be uncharted ground.

   Apparently this is the only test happening today, and the Doctors are going to have a big meeting with all the specialists either today or tomorrow about what courses of action we need to take. One thing is certain though, they will be doing all the work up tests for transplant so that it's ready when the time comes.

More news as it arrives, and a short note about how the family is doing will be coming soon as well.

Musing

Something in my head broke tonight. Not in a bad way, although it hurt at first. I'm thinking more clearly now than I have since I had gotten sick. Last night my Husband confronted me with the face that I had been holding everything in, being strong for everyone around me and not really internalizing what was happening. He, in short made me cry for the first time since I was hospitalized. Well, first time in front of anyone at least. I learned then that tears shared are healing while tears hidden just hurt you more.

   I know what I want my life to look like now if I am given the chance. I had an idea before, but now it's crystal clear. I wish to obtain my addictions certificate and finally begin practicing my art/skill/science on a volunteer basis at my Temple and in my community. I also hope to obtain a job where Rob can choose if he wants to work or remain home with the kids or not. I have very little desire for anything for my self anymore...it's fleeting. The changes I can help others make though, that is lasting.

   So, for those who have been keeping track of everything...now you know why I desire to live. At least one of the reasons.

   Tomorrow, I wake to something new..something I've not had in a very long time. Purpose. I will undergo all the tests I am given with as much grace as I can and endure what is necessary to see myself a full return to health so that I may complete the work I have known for so long but hesitated at before.

Medical Update

Good morning. Well, I want to get the contact info issues out of the way. I have many places I can be found:

• kristen.chesnavich@gmail.com
• Obviously here
• http://oldfashionedmommypgh.blogspot.com/
• YM Kristen.chesnavich
• Twitter KristenChez
• Hospital  Montifiore Hospital UPMC : 200 Lothrop Street Pittsburgh, PA 15213 room 1043-1S

Those are the best places to reach me at this time.

Some folks have pointed out that the carepages site needs a log in. I will be keeping that one going but I will also post on my blogger which is the 3rd thing down on the above list.

Now for the update:

Well, it's thanksgiving so a whole lot of stuff won't be happening. They hope to dialyse me again on Saturday to see how things hold up. The Doctor spoke to Infectious diseases and the gave the go ahead for a graft, now we need to see the folks at Vascular Surgery so they can see if I have veins in my right arm to place the graft in. Thing is this will be tricky, they put a PICC line (perm. IV) in my left arm and my right arm has been a pin cushion. I honestly don't know if they will find access.

Tomorrow (hopefully) they will be doing a TEE Essentially they stick a small camera down my throat while I'm sedated to see if the infection on my heart is getting smaller or not. If it is..great, I'll be OK for transplant eventually in the 2nd week of December.

If it hasn't gotten smaller or if it has grown, then we need to talk to the Cardio-THorasic Surgeons about going in with surgery and taking the infection out by hand.

Also, starting tomorrow and thorough the weekend I will be finishing up my work up for transplant.

So we have two possible paths now.
1: The graft works and remains stable and the infection has not grown or has gotten smaller. Femoral catheter comes out and I get to spend a little time at home before the surgery.

2: The graft isn't reliable or the infection requires surgery, then I remain here for the duration.

Even if I am allowed to go home for a while, I will still essentially be on bed-rest so I don't complicate anything.

=====

People have asked how they can help if donating a kidney is not an option. There are many many things you can do that would help us to not be so stressed out about other things and can focus on this.

• Be at my house with Rob..not even kid watching..just another voice so he isn't so frazzled alone
• Childcare
• visiting me or sending cards to help keep my spirits up

There are items we definitely need if you are in a place to help that way as well

• Diapers size 3
• Cash assistance (I hate to even SAY this but Rob's been off of work too much to deal with doctors and what not)
• Assistance with transportation for Rob when nessessary

Well, I hope this covers it all. I will keep updating as much as I can when I feel well enough.

When do I get a break?

   I am in the hospital again, it's been almost a week now. Same old story...clotted catheter and infected site. They are actually doing things that make sense this time and giving me blood thinners in hopes that I won't keep clotting off my lines.
   The most frustrating thing though? I'm likely to be in here a good long while because of pre-transplant testing. So, we had to figure out a long term solution for the kids. Rob has to work, and I obviously can't watch them while I'm in the hospital. We wound up hiring someone, a young woman with 2 of her own kids and we thought everything was going to be just fine. Instead, she sends me a text message (not even the courtesy of a phone call) to tell me she has surgery tomorrow morning. Now, I know she's ill and all that. However, I seriously doubt that she has surgery tomorrow. Or at least that she didn't know she did before accepting this assignment. First, it's a Sunday. No doctor in the world bothers with scheduling someone for Sunday unless they have been admitted.
   SO, now we are stuck bringing the kids to their Godmothers, which we have to walk to because we have no car uphill and over 3 miles to get to, then the 6 miles to work and repeat on the way home. We don't possess a car right now and I do not have a license and my DH's is suspended. I am lost and bewildered as to how someone could f847ing do this. What happened to responsibility?

passin it on

span>I was hoping to do this with more slow consideration, but circumstances are what they are.  I am putting out an immediate call for a live-in babysitter.  The short of the deal: live with us, rent free, in exchange for child-watching duties.  Details can be worked out with the proper candidate.</span>
<span> </span>
<span>We're barely getting by right now thanks to an angel of a roommate dropped into our laps.  But soon this will not be an option, and Kristen's medical situation is such that we need a semi-permanent solution, and fast.  I post this here instead of Craigslist or somewhere because I'd much rather have someone who knows us, even if you'll be suggesting a friend.  Please, if you could, pass this to anyone who you think might be interested.</span>
<span> </span>
<span>Thank you, everyone</span>.

-Rob

I am so frusterated I could scream

   It's hard enough being a stay at home Mom. Lots of things fall to you exclusively. I'm not bitching,,I Live being at home with my babies. however, I do wish I could sometimes maybe get some where people have said they were. Now, I am not speaking of my Roommate T who has been an absolute wonder when it comes to making sure we have what we need time wise, and also house wise. He's put in countless hours watching the kids so that I can go to dialysis. What I am complaining about is EVERYONE ELSE who has said "Oh sure, you can count on me..just email, FB mail call whatever" and when when I do...when I have Aleksey's Child Development Unit appointment..which I waited 3 stinking months to be able to schedule...No one has called me back. No one has written. Nothing. This appointment is somewhere I can't eve get to by bus..so eve if I prevailed upon my awesome roommate (which is the last thing I want to do right now, He's done so much already) I couldn't get there.

   Unlike most others I know, we don't have any family out here to help out. We don't have the money to invest in a referenced babysitter (even if my kitchen was fully working..I won't have a stranger come into my home for anything until that's done) and day-care is out of the question until the state gets their collective thumbs outta their rears so I can get a childcare waiver so I can MAYBE do the doctors appointments necessary for my transplant without having to bring both kids with me.

   I feel so damned alone sometimes when it comes to this, I have my husband working his tail end off to make sure we have the money for what we need, and I'm working my tail off to see the kids taken care of and the house taken care of. I don't have a clone although I wish I did and it seems like the promises of friends isn't worth shit.

Oh it is going to be one of those days?

   I certainly hope not. Today was my DH's first day back at work after his leave of absence while I was i the hospital. For some reason I cannot fathom, I have slept most of the last 48 hours and did -not- want to wake up again this morning. When I did get up and get the kids situated, it was an immediate fuss-fest. We are trying to break Aleksey of his poptart habit. Have you ever tried breaking the habit of a ritually ingrained kid? I don't suggest it.
   Somehow, I have to wake up enough to get the living room cleaned up enough for the early head start teacher and get real clothing (read: not pajamas) on the kids (even though I don't feel like getting dressed either) and then run through a whole ton of phone calls and errands. Shoot me?

testing

testing