Slowly on the mend

Being home is DEFINITELY better than being in the hospital.  The first couple of days were ROUGH, though.  The first night home (actually the first thing I did) Joacim had to help me shower.  I can't get the catheter in my chest or my stomach wet, but I also need to wash this crazy hair of mine,  so thankfully he was willing.  I asked him if, 10 years ago when we said "in sickness and in health" that it was literal, and he laughed :)

Izzy is most definitely happy to have me home.  I'm starting to see the effect that this is having on her.  I bet it's really hard to see her Mommy this way.....not being able to walk much and spending most of the time in a recliner (at least that first week).  She's scared to hug me because she's afraid she'll hurt me, and that's gotta be tough, but we're doing the best we can.  

This is what the catheter looks like in my chest.  The initials and date are on there to indicate the last time the dressing was changed, and it gets changed before every dialysis session.  

 This is what the PD cath looks like (at least under the dressing).  There will clearly be no more bikini wearing in my immediate future.  The two holes above and below my belly button were where the laparascopes went in, and they used my belly button to insert the camera for placement.  These are now covered in glue which will eventually fall off.  There's still another piece to this catheter that I'll get Thursday from my PD dialysis nurse when I start training, and it will attach to the end of the tube.    Until it's healed, I can't get it wet at all, but once I'm given the all-clear, I'll be able to shower as long as I don't directly spray the area (it's okay if water washes over it though).  Guess that doesn't really matter though because still now showers due to the chest catheter.  That will be removed (via surgery) once they know that PD dialysis is adequate enough for me.

Joacim, bless his heart, spent the entire first in-center treatment with me, reading the training manual on PD, and sitting in a hideously uncomfortable chair with a back that he threw out 3 weeks ago trying to get his boat securely on the trailer (hey, ask him why he didn't just back it up and reset it...I wasn't there :).

This is what dialysis looks like (at least for me).  I spend 3.5 hours lying down, watching the little TV that's part of the machine/chair, while my blood gets cleaned.  The residue you see on the floor is the crystallized remains of the dialysis solution that's used in the dialysis machines.  These things leak like crazy (the hoses, that is), and the floor is usually kinda crunchy.  I don't have a picture of the entire dialysis unit (out of respect for my fellow unfortunate visitors) though.

I also received my first month's supply of dialysate for PD.  That's a LOT of boxes (enough for 30 days), with varying quantities of bags and concentrations. It's a real hodgepodge at first, but I think we'll start to figure out what works for me, and then future deliveries will be more uniform.  These deliveries are monthly, with Baxter bringing in all of the boxes, and rotating the supply to ensure everything is fresh.

 I've done in-center dialysis 4 times so far, (7 sessions total including those at the hospital) with (hopefully) my last one being tomorrow.  I start training on home PD on Thursday.   Joacim is training with me, so pretty much Thursday through next Tuesday is all booked up with both of us at the dialysis center getting trained on how to run the machine, and what to do if something goes wrong.  We'll also be trained on how to do "manual exchanges" that will allow me to dialyze if we lose power, or if I'm in a place where I can't take my machine.  I think I'll do one fill/dwell/drain per day initially, and then work up from there accordingly.

I don't know how people do it for years and years on end.  I really don't.  In-center dialysis is life-changing....it sets the tone of every single moment.  It decimates my quality of life.  On dialysis days (which are M, W & F) there isn't a lot of time in the morning to do much, and my session starts at 2:15, which means I'm typically leaving the house at 1:30.  I usually get home between 6:15 and 6:45 when it's all said and done, and then I'm so wiped out that I go straight upstairs, turn on the heating pad and sit in my recliner and stare until I go to sleep.  On off days, I sit in the same recliner and recover and make a bunch of phone calls to coordinate something kidney related.

I'm happy that I'll be switching over to doing dialysis at home....everything I've heard and read tells me that this will give me more freedom because I'll be dialyzing in my sleep.  I also hear I'll feel better, as it's a gentler form of dialysis.  Granted, every single day I'll be hooked up to that machine for 8-10 hours, so it's no walk in the park.  I want people to understand that this is life on dialysis.  It's not a cure, just a treatment, that affects every single aspect of my life.  Honestly, it feels like this is only the beginning of my journey....

A week in the hospital and now dialysis

Radio silence once again, peeps.  Certainly not intended, but unavoidable considering everything that's happened.  I kind of "fell off the cliff" in regards to my health a couple of weeks ago.  My last post talked about my nephrologist visit and how he said that "I'd know" when it was time to start dialysis.  I guess "I knew" the morning of Monday, Nov 3rd.  The weekend before that I just felt awful....I could NOT get warm enough (we're talking 3 shirts, heating pad, thick fleece blankets and a space heater), and I was too nauseous to eat anything.  I started seeing my weight drop drastically, and by Monday morning I was down to 138 pounds.  I called my nephrologist on Monday morning and told him about the weekend and the symptoms I was experiencing, and he suggested I come to the hospital.

Now this was something that I'd thought a lot about.  I tried to find a nephrologist with local hospital privileges, but they weren't seeing new patients until January, so I was never able to follow-through with that.  I could either take my chances and go to the emergency room of a local hospital, or I could make the hour-long drive to a hospital in Maplewood and get admitted.  I chose Maplewood, simply because I knew my neph had privileges there and the surgeon he preferred for the PD cath placement was there.  Looking back now, I'm SO glad I made that choice.  Medical professionals in a typical ER setting see someone like me, and a whole lot of unnecessary time is spent trying to get a handle on my situation.  By going to Maplewood directly, my neph was able to get a room for me, and get all of my surgeries lined up before I even got there.  

This picture is of me right after the neck catheter placement procedure (which I was horrifyingly awake for).   Yeah, I'm not looking too good in this one.  

The reason we had to do this temporary catheter in my neck is that I had taken my blood thinner the night before, and there was no mechanism to reverse it's side effects, so we had to wait to put the tunneled catheter in.  But I desperately needed dialysis, so this was the option I had.  Can I just tell you that this was horribly uncomfortable, and I just started to get a bit freaked out knowing that there was this catheter thing essentially IN MY VEIN and sticking out of my neck.  Holy hell...it freaked me out.

But I DID receive dialysis that first night around 4:30pm.  It's kind of amazing that it all worked out.  This picture below shows what the dialysis machine looks like (that's my blood in the lines getting cleaned).  I had no idea what to expect, but I did experience a significant headache, with some crazy-painful cramping at the end.  We didn't end up pulling any fluid off due to the cramping (not that I had any fluid to give as I was severely dehydrated).

This picture was taken Tuesday during my dialysis session.  These were flowers and a balloon from my co-workers, hand delivered by 2 of them (my co-worker is my nephrologists brother :).  Such a happy surprise!

The second session of dialysis left me feeling like a zombie.  I felt like my life-force had been sucked out, along with all of the toxins, and there was this residual vibration in my entire body, like there were a bunch of happy cats trapped inside, purring away.  I make it sound pleasant with the cat analogy, but it was anything but pleasant.

By Wednesday I was feeling pretty cruddy.  I had been taking sponge baths each day (can't get catheters wet), but one of the nurse aides offered to try to help me wash my hair.  They have these shampoo caps that they use for patients that are bedridden, so I gave it a go.  They heat it up in a microwave first to activate the "shampoo" and then they're supposed to put it on your head, lather up and then use a towel to dry (sort of like a dry shampoo).  You can see that the aide is having some difficulty fitting all of my hair in that tiny cap, but she somehow managed it.  I tried to rinse the stuff out, but it ended up making my hair feel even grosser.  Then I promptly called Joacim and asked him to bring me some shampoo and conditioner :)

This is what dialysis looked like for me out of my neck.  These two tubes (one is where the blood is pulled from the body and the other is where it is returned....the colors don't necessarily matter in this case).  You can see that they're both empty here.

Now you can see one of the tubes slowly start to fill with my blood, which is then going to the machine for cleaning.

And now both are filled, as the blood on the blue side is what's returning from the machine (all nice and clean) and back to my body.

I could't stop taking selfies of this thing.  I was intrigued yet horrified all at the same time.  My neck started to REALLY bother me because of the tape (you can see it pulling on my skin).  They also cover the ends of the cather with gauze, so it gets heavy, and it kept pulling on the tape that was pulling on my skin.  The only way I was comfortable in regards to this part was to lie down, because then I could at least use gravity to position it in the least annoying way.  But after awhile, lying down all the time just sucks, and that hospital bed was awful (not to mention the 9 blanket that were piled on top of me.....if you ask for a warm one, they just put it under all of the others so it's closer to your skin, but don't remove any of the ones on top, so they build up over time).

This pic was taken on Wednesday as I was getting wheeled to the procedure room to have the neck catheter removed and a tunneled chest catheter placed.  I had been fasting (no food or drink) ALL day, and by this time it was 3:20pm.  As soon as we got into the suite the procedure was cancelled.  The doctor was running over with the previous patient, and then he had to be out of the building by 4:00 for a prior commitment.  I get that these things happen, but why even bother wheeling me down from my room if they knew he was running over????

I was lucky enough to get some visitors during my time at the hospital.  Izzy and Joacim came one night (I think it was Wednesday).  I was feeling pretty awful at the time, but I tried so hard to appear well for Izzy so she didn't get freaked out by everything.  She seems decently at ease in our selfie ;)  I also had several co-workers and my boss take time out of their busy days to drop in and visit.  Sometimes I wasn't the best company, but their visits were such a huge mental help!  And they brought food too!!!

Here was my nightmare of a bed.  I am not an organized patient...there were cups and papers and crap all over the place.

I was still being starved every morning at this point.  One of the days, I returned to my room after dialysis and saw this happy little surprise!  It's good to have friends that are nearby :)

By Thursday, the neck thing was really bothering me, so the nurse wrapped an ace bandage loosely around my neck in order to support the weight of the catheter.  MUCH better after that.  She adjusted my tape a little too, which finally allowed me to look up (I was starting to feel like the Hunchback of Notre Dame!)

 I FINALLY had my chest cath placed sometime Thursday (this pic was taken right after I returned to my room).  Thank DOG I was drugged up for this one, because it hurt like HELL when I woke up.  The catheter is tunneled under my skin, but over my collar bone, and apparently bones are pretty tender.  I felt like I had an elephant do the hokey-pokey on my collar bone.  SO.  INCREDIBLY.  PAINFUL.  Thankfully, no dialysis that day.

There wasn't much space left on my arm to do anything, but they still managed to draw blood from it every morning around 5:30am.

This was one of my nurses (who were al fantastic) named Rissy!  She'd the kind soul who wrapped up my neck, and really just fought to make sure I had the best care possible.  Nurses are a gem.  The amount of shit that they have to put up with is frightening and sad, so I tried my best to be a good patient.

I'm pretty sure I took this pic right after the surgery for my PD catheter (judging from the stoned look on my face).  I'm pretty sure I tried to call people on FaceTime because I could not move, and the phone somehow was in my hand.  Wow, PD cath surgery was also stupid painful.  I can't describe it.  Just awful.  Normally it's an outpatient surgery.  Either I'm a wuss, or all of the crap that my body had already been through that week was taking it's toll.

I asked the dialysis nurse on Friday to take this picture, because I wanted to remember what it was like at my worst.  This was my last day of dialysis in the hospital, I had a MASSIVE migraine that I was fighting, and the guy getting dialyzed next to me had MRSA and was vomiting and moaning throughout the whole session.  Quite possibly one of the worst 3 hours of my life.

And, amazingly enough, I was able to go home the next day.  Joacim came and picked me up around 4:00pm, and we were off.  I was terrified, honestly.  I was terrified due to the pain I was still in, and being home meant no IV dilauded (which is an INCREDIBLE pain drug), but there really was no reason to keep me there, and I probably did recover faster being at home.  I left the hospital with a chest catheter and a PD catheter.  The chest catheter is used for the in-center hemp dialysis that I have to do until the PD catheter is healed, which takes about 2 weeks.  While in the hospital, I found out that I was approved on the waiting list for PD with DaVita/Baxter, so things were pretty much in-place.

More follow-up posts coming....

Nephrologist appointment and another dialysis clinic visit

The nephrologist that I used to see in the Twin Cities was able to fit me in this week.  I had labs done on Tuesday in order to have them done for Thursday's appointment.  This doctor is great..truly kind and informative.  The ONLY problem is that he doesn't have privileges over here on this side of town, but at this point, I just have to be okay with that.

The whole point of my appointment (in my mind) was to figure out when I need to start dialysis.  I've been feeling more and more rundown, nauseous and itchy, and I figured we were pretty close now, and my labs agree.  My creatinine is 6.3 and my GFR is 7.  My potassium is low (which is good for me still) but my BUN is 55.

I brought him up to speed on all things transplant and talked about dialysis.  My biggest question was, "When do I start?".  Basically, he told me that I'd know when I need to start.  Not exactly the answer I was looking for.....I just wish there was a magic number that would tell me that I need it.  For some reason, I don't like this decision being in my hands.

I always envision this getting worse, but how much worse is something I don't know?  Of course, I thought the same thing about childbirth, and somehow managed to make it to 10cm while at home because I wasn't sure it was time....basically what I'm trying to say is that I'm not a very good judge of this.  I always thought my pain tolerance was really low, but apparently it's quite high.  The doctor put it this way:  my body has had 9 years to adjust to the buildup of toxins in my blood.  If you were to put a healthy person in my shoes in a day, they'd probably be dead.  My body has just gotten used to the toxic environment over time.  He DID say that it would be wise to get the dialysis access done soon though, because it's a bad situation when you're not prepared for it.  So, I guess I'll be getting that access surgery done in the next week or so, but I'm waiting for his office to call me back with date/time.  Once the access is in place, it'll take a couple of weeks to heal, and then I can start dialysis training after that.  My instructions are to call him whenever I'm ready, and he'll get the orders in place.  At that point, my care will be transferred to a dialysis nephrologist, likely affiliated with the dialysis center I choose.  The group that my doctor is a part of works with Freesenius, but I haven't visited any of them, so I need to try to do that on Monday or Tuesday to see if I prefer them over DaVita.

I wan't sure bout DaVita after my first visit, but this time I went to the facility in St. Louis Park, and it was a MUCH better experience.  Joacim came with me this time, and we went through all of the ins and outs of peritoneal dialysis, and my decision was made easily after I asked to see the hemo dialysis needles.  Holy HELL!!!  They're a HUGE gauge!  There's no WAY I could stick that in my arm, and Joacim agreed.  We did go into the hemo side of the clinic to see a dialysis machine....it was completely empty at the time we went because it was Thursday (which is an off-day for most) and the day patients were finished.  The nocturnal dialysis patients wouldn't be in for a few hours, but the place would be full....there were maybe 30 chairs or so.  It's definitely their largest facility.  

My application is in for the waiting list for PD (due to the solution shortage) and I hope to hear something on that this coming week.  

Based off of how I have felt today, I'm thinking this all needs to happen soon.  I have been so cold all day.  I spent the day wearing 2 shirts, sweat pants, lying in bed (because the sofa hurts my hips) on a heating pad, with a this blanket and a space heater nearby.  It's at this extreme that I'm "comfortable". I've been fighting nausea all day....only managed to eat some scrambled eggs and a baked potato.  My weight is down to 138.8lbs as of this morning, and I'm just so physically spent doing the most menial of tasks right now.....it's just getting really hard.  Joacim went fishing today, and I spent all day feeling guilty that I set Izzy down in front of the TV to watch movies because there was little else I could do. Ahhhh...more guilt.

Everyone tells me that I'm going to feel better once I start dialysis....my biggest fear is that I won't.

Q & A: Who can donate?

I've fielded some questions lately that made me realize I've done a bad job of explaining some things, so I'm (hopefully) going to start some Q & A posts to help clear things up.

The question today:  Who can Donate?

The information I'm giving is focused specifically on living kidney donation, since that's what I'm seeking.  Here are a few points about living donor kidney transplants before I move on (this is information provided from kidney transplant education I received at Mayo during my evaluation):

• kidney from someone who is alive and volunteers to donate
• kidneys tend to work better and last longer
• planned surgery date
• shorter waiting time
• I may be able to avoid dialysis
• There are many options of this type of donation

Okay, so who can donate?  A person can be considered for donation if they meet the following criteria:

• Donors need to be 18 years or older
• You must be in good health.
• If you've had an significant medial issues (high blood pressure not well controlled, diabetes, cancer, heart disease, liver disease or lung disease) in the past, you may not be able to donate.
• If you're a smoker, heavy drinker or obese, you may not be able to donate.  If you're overweight you may be asked to lose weight before you can donate
• Good mental and emotional health are a must as well.  The evaluation team will interview you and may ask how you manage stressful situations.
• Blood type
• It would be ideal if my donor were O+, but it isn't exactly a deal-breaker if you're not
• Not pregnant 
• If you've recently had a baby or are interested in becoming pregnant in the future, let the team know that
• Normal kidney function
• You'll need to ask the donor team what is considered normal kidney function, and they'll test it as part of the evaluation process.
• Access to caregivers during recovery
• Willing to have follow-up care either at Mayo Clinic or with your local health care provider
• A desire to donate

If you don't meet the above criteria, you may not be able to donate, but even that's not set in stone.  For example, there are things you can do in regards to controlling your sugars or blood pressure.  At the time of testing, you may not meet the criteria, but a little work could make you eligible in the future.

Here is the contact info if you would like to talk to someone at Mayo Clinic, or want to ask some questions:

Mayo Clinic Living Donor Info

http://www.mayoclinic.org/living-donor-transplant

Phone:  866-227-1569

Monday-Friday:  8am - 5pm
Please let them know that you're calling in the hopes of being a donor for Jennifer Trunk.

Even when I read this post, it still seems complicated, and it is, but I'm here to help explain the process.  I NEED more people to step up to volunteer to donate for me, and that's only going to happen if I get the word out.  I'd really love it if you could share these posts on any social media platform that you use.  There are so many stories of people volunteering to donate a kidney because of a post they saw on Facebook.  I've got to use any option that's available to me, and I could really use your help.  Thanks so much!!!

Living Donor Information

So, for starters, my blood type is O+, so my donor kidney will need to be O+ as well.

HOWEVER....if you're blood type is NOT O+, there's still hope!  If you are interested in donating and are otherwise determined to be healthy, but aren't a blood type match, you can be involved in a paired kidney donation.  I took this graphic off of the Mayo website.

In this example, Recipient 1 has a person (Donor 1) interested in being a kidney donor (this could be a friend, relative, spouse, parent, child, etc) but can't donate due to different blood types or antibodies.  Recipient 2 and Donor 2 are in the same situation.  These 2 parties can enter the paired exchange, where Recipient 1 would receive Donor 2's kidney, and Recipient 2 would receive Donor 1's kidney.  This is all done via database, so there isn't any personal effort involved in finding a match.  The only effort is involved is signing up and donating.  When you hear stories of multiple-chain donations, this is the process they're referring to.  Altruistic donors, meaning people who just donate to anyone anonymously, can start a significant chain that can, technically, go on indefinitely.

Once you express interest to Mayo regarding donation, you'll be mailed a packet of info containing an order for a blood draw that you can do locally, as well as a kit for a saliva swab.  That information is then sent back to Mayo where they run initial testing.  If you are deemed a viable donor from that initial testing, you will then be asked to go to Mayo Clinic in Rochester to go through the donor evaluation.  This is a 2-3 day process that is very similar to what I just went through.  It'll include meeting with nephrologists, social workers, dietitians, along with things like EKGs and ultrasounds.  I don't know all of the details, but that hopefully gives you a general idea.  If you're approved for donation, but not a match, then you'll have the opportunity to enter the exchange program.

If you are interested in learning more please call 866-227-1569.  This is the phone number for potential living donors at Mayo Clinic in Rochester.  It's INCREDIBLY important that you tell them that you are interested in donating to Jennifer Trunk.

All of your information is kept confidential.  I won't even know that someone is a candidate unless that candidate tells me.  The donor and transplant teams are separate in order to ensure a confidential process.  What I'm trying to say is that I can't drive any of this.  Not even for Joacim's, even though he's my husband.  I won't have access to any of the results, not what step in the process they're on..nothing.  Part of this is to make sure that the person donating REALLY wants to donate, and isn't being coerced in any way.  It may sound strange, but it makes sense.

I feel like I've typed enough tonight.  I've got so many more things to say, but I'd be interested to know if anyone has any questions about donation.  There's lots of info that I can't cover in one post, but it gives me plenty of topics to choose from for the future ;)

Approved for kidney transplant at Mayo!!!!!

I GOT THE CALL!!!!

This felt like THE LONGEST day.  I don't think I've ever checked my cellphone so many times...checking for missed calls, voicemails or emails....anything!  It wasn't until 4:30pm that my transplant coordinator called and told me the great, amazing, fantastic news.

They spoke at some length about me today, which is good because it indicates thoroughness to me.  They are going to list me inactive on the transplant list.  If you remember, the U listed me inactive too, but in case you don't remember, being inactive means that I won't be getting any calls offering up a cadaver kidney for me, but I will continue to accrue time on the list.

The team is being very purposeful in this decision.  Because of my FSGS, there is a protocol that they want to follow to ensure the best outcome for me.  Before the transplant, I will be given doses of Rituximab, as well as several sessions of plasmapheresis.  The way I understand it, the Rituximab is used to "remove the antibodies" and the plasmapheresis is used to clean my blood.  Hopefully, by doing this, I'll be less likely to reject the donor organ.   If I were to get a cadaver kidney, we wouldn't be able to do this, which is why I'm inactive.

So now what, you ask?

Well, the answer is simple.  I need to find a living donor.  Joacim is still working on lowering his a1c with diet and exercise, which is awesome, but there's still a risk that, for some unknown reason, he won't be able to donate via the paired exchange program, so I need more living donor candidates.  Several more.  A living donor will save me 5-7 years of possible waiting for a cadaver, and even then, it would be dicey.  A living donor gives me the ABSOLUTE BEST chances of a successful transplant.

I know lots of people read this blog, so I'm hoping this will help me in my search.  I feel that I need to at least say something before I go into the whole donation process.  This is hard for me.  Awful, in fact.  It's uncomfortable in a way that I can't describe.  Putting myself out there, asking for a kidney....just makes me feel more vulnerable than I ever have in my life.  I'm relying on someone to come through for me, and that's hard to get my head around.  But I also want to say that I'm not looking at everyone I know and thinking, "Well, why doesn't he/she step up for me?".  It's absolutely not like that.  I know that people have circumstances that may not allow them to step up, even though they want to.  I totally get it.  My mission is to find the best donor for me, and hopefully that person doesn't go into this with one shred of doubt, because that would be a bad situation for everyone.  I am going to do my best to provide the most accurate information out there for people to consider, and then hope that someday soon, I'll get the call that says I have a donor.

This post has already gotten long, so I think I'll do another post on the donation process/criteria.  Just want to say "Thank You" to everyone that has sent me words of encouragement, or just little messages/texts to let me know that they're thinking about me/reading my posts, etc.  It means more than you know....

DaVita - Dialysis center visit

I had my first visit to a dialysis clinic today, and it was......well.......sobering.

Everyone I saw receiving treatment looked to be at least 80...85.  And there was a very distinct smell.  Not awful, just not something I want to breathe in regularly.  There was no privacy, and a constant din of beeps from the dialysis machines.  All-in-all, one of the saddest places I've been.

And I just want to say that this is MY OPINION.  I know that, for some people, the fact that some is there to take care of them and monitor them during dialysis is exactly what they're looking for, but I'm not.

I was meeting the education coordinator (I think her name is Ally) at the center.  She gave me a quick (as in like....2 minutes) tour and then we went back to an office to talk.....I think she may have sensed my mild freakout.  I was there for about an hour and a half, and I came out with a lot more confidence in the path forward, which was my sole goal.

I need to find a modality that is the least disruptive to my life.  I raise a young child, and I work, and plan on continuing both when or if dialysis starts.  Based off of what she told me, and my discussion with the transplant nephrologist at Mayo that I mentioned in the previous post, I think I'm leaning toward home PD (peritoneal dialysis).  The advantages for me are:

• No fistula or graft
• I can dialyze overnight
• If I need to stop in the middle, I can, and resume later (like if I need to go to the bathroom, or if Izzy has a nightmare)
• I can sleep in my own bed
• The PD cath can be hidden
• There should be no remaining fluid in my abdomen after I'm done, which was one thing I was confused about
• I can dialyze with this method even if there's a power-outage by doing a manual exchange, which is essentially filling my belly with dialysate via gravity, letting it dwell for a set time, and then draining.
• I can have supplies delivered to my travel destination if necessary
• Fewer food/fluid restricts

All is not rosy, though, as no solution is awesome.  The disadvantages are:

• There's a national shortage of dialysis solution that started in August.  Hopefully the manufacturer will resolve their production issues by Christmas, but there's a wait list for now (Ally is working on getting me on that wait list now, just in case)
• No swimming
• NO BATHS! (This is the worst for me, especially at this time of the year, as it's one of the only things that warms me up once the chill sets in.  Ally did mention that the surgeon could put an extension on the catheter and have it come out of a different location higher on my torso, but it's not frequently done)
• I'll have to do it every single day
• Storing the solution is going to require quite a bit of space.  Each night uses 2 bags at 6 liters each, so that's 12 liters per day, plus whatever extra water weight I gain throughout the day.

Overall, the advantages far outweigh the disadvantages, so I think I've got a front-runner. The next step is to go to the St. Louis Park dialysis clinic, as they support home PD.  Surprisingly, not all dialysis centers provide for all types of access...most seem to do strictly in-center hemo, but there are a few around the city that support home dialysis.  Hopefully I can do that on Friday and Joacim can go with me, as I'll need his support as well.  

I also need to find a local nephrologist to help me manage the dialysis.  Ally is getting names together of doctors who woe with the St. Louis Park clinic, and I'm going to look them all up on Cigna to see if they're covered, and then see what hospitals they have privileges at.  I want to make sure they have local access in case I  ever need to be hospitalized for any reason.

Whew....a LOT of information in the last few days to review and mull over.  But I feel SO much better right now than I did a week ago.

Mayo - Kidney Transplant Evaluation

I spent Monday and Tuesday at Mayo for my kidney transplant evaluation.  It was an exhausting 2 days, but worth EVERY SINGLE SECOND.  I had to leave the house both days at 5:30am...admittedly it was hard to stay awake during the 2 hour drive in the dark, but luckily I had some entertaining podcasts to listen to (don't judge....I can be nerdy if I want ;).

I originally planned on detailing all of the appointments, but honestly, all of those details aren't all that important, but I will highlight the trip for anyone who's learning along with me.

Monday

• Blood draw
• 2 separate draws by 2 separate techs....blood type (still came back O+ :)
• Transplant Recipient Consult (Transplant Nephrologists)
• There were 2 of them, but I spent a majority of that consult with one in particular, and he was absolutely fantastic.  He knew my ENTIRE medical history.....from memory.  I was flabbergasted in the best way.  He was genuine, thorough and confident, and it was one of the best things about the entire evaluation.
• Medication Review
• I met with a pharmacist to review my existing medicines, what meds I'll be on after transplant, and the challenges with managing all of the meds, and ensuring that I take them every single day.  I did tell her that, for the most part, I'm religious about meds, but I've certainly missed them before (never when on immunosuppressants before though) but that I understand that this is for the rest of my life.  We also talked about the methods I use to manage and remember (pill boxes and iPhone alarms).  I told her that I had severe insomnia on Cellcept and tremors and headaches on Prograff.  Unfortunately, I'll probably be on those again, but I might react differently this time.  We'll just have to wait and see.
• Transplant Coordinator
• I spent an hour and a half with the nurse who will be my transplant coordinator.  A bulk of the time was spent covering the dialysis education class that I didn't get a chance to attend due to the short notice nature of my evaluation.  Again, incredibly thorough.  She did tell me that, once active, I needed to answer every phone call, because one of them could be for a transplant.  She told me that the number could show up as blocked, as it could be directly from one of the surgeons (they, of course, wouldn't want to have their private cell number listed, so it makes sense, but I really didn't think of this option, so I'm glad she explained it :)
• Abdominal Ultrasound
• I never had an ultrasound of my abdomen at the U as part of my evaluation there, so they needed to do one on Monday in order to the arteries and ureters, both in my abdomen and groin area.  They do this in order to check the blood supply, and measure the diameters.  The technician was quite nice, and the whole thing only took a half-hour or so.  However, ultrasounds are a lot more fun when there's a little baby to look at ;)

Tuesday

• Dietitian
• This is never an appointment that I enjoy, but I gotta face facts in that I eat too much salt.    She gave me some guidelines in terms of daily sodium and protein ranges.  I can't promise anything right away because I don't want to fail.  I will say, though, that my visit has caused me to start seeking recipes that I can modify to reduce the amount of salt, so I guess that's progress, right?
• Social Worker
• This one probably makes me the most nervous.  I found myself rambling a bit as it's all just so overwhelming, but hopefully she didn't see that as a negative.  I found out that I have to live in Rochester for the 3-4 weeks after the surgery.  I also need a caregiver with me the whole time, not to mention Joacim needing a caregiver if our surgeries are at the same time, which is a possibility in a paired exchange.  So that threw a HUGE wrench into things, and this is the part that I still don't have figured out.  They do have housing available at a much-reduced cost.  The Gift of Life House is one of them, and it would be like living in a dorm for transplant patients, including communal areas for cooking and TV, but private bathroom and bedroom.  There are also houses to rent that are available as well.  LOTS to consider.
• Transplant Surgeon
• This was the shortest appointment of the day.  I didn't really have any specific questions about the surgery itself, but we did talk about my native kidneys.  If I haven't started dialysis by the time I have surgery, then they'll go in and tie/cut my ureters on my native kidneys during the transplant.  They do this to ensure that the urine that I'm producing (and that's being tested) after transplant is coming only from the transplanted kidney, and this helps them tell if the new kidney starts leaking protein right away, indicating recurrence.
• Financial Services
• Wow, this is going to be an expensive endeavor.  $275,000 by the time it's all said and done (includes living donor expenses).  She also helped explain the whole Medicare thing, and gave me some websites to go to for fairly simple explanations of the covered benefits.
• Transplant evaluation wrap-up
• Last meeting of the evaluation, and back again with the fantastic transplant nephrologist that I met with on Monday.  According to him, everything looks good and he didn't see any issues with getting me listed.  They review cases on Wednesdays, so I should hear something next week.  He also helped answer some questions about dialysis, and DEFINITELY gave me things to think about in terms of what access I'm going to select.

So, that about sums it up.....just waiting on pins and needles for next week!  Aaaaahhhhh....so many moving parts!!!!!

Wooohoooo - thank you Dr. F!

Just received a voicemail from Dr. F at Mayo saying he was ordering a transplant consult!!!!!  Plese please PLEASE let this work!!!

Thank you!!!!!!!

Oh kidneys....how many things you screw up

I went to my OB/GYN today because I've been having some issues ever since I had my IUD surgically removed in February.  Without going into too much detail, let's just say things aren't "right".  I talked with the doctor, who is WONDERFUL, about the issues and she gave me options.  Granted, the options aren't necessarily what I want, but it is what it is.

I'm on a blood thinner as a preventative measure, and that could be playing a part in this, but she couldn't recommend going off of that due to the kidney issues.  Normally they would prescribe some sort of estrogen to help, but I can't have that due to the risk of clots that presents for me.  I could take Depo Provera, which is a type of birth control, but it can contribute to bone density issues, and that's already a problem for someone with kidney disease.  I could have an ablation, which is essentially a sterilization, but I'm just not mentally ready/okay with that option.

I still don't think it's remotely crazy to want another kid.  Now, in my more sane moments, I realize that it's probably nutty, and in all likelihood will never happen.  Not only do I not think I could convince my husband that it's a good idea, but I also have no idea how I'll feel after transplant.  Surely an ablation will pretty much eliminate my symptoms, but I just can't do it.  However, if I were to know more about the physical chances of even HAVING another baby, then that would be more data to make a decision with.  I asked her about testing hormone levels which we'll do on my next cycle.  My thought process here is that, if my uterus or hormones are shot, and in that physical arena there's no chance, then it could make the decision to ablate easier.  Who knows if that'll actually be the case, but it's more information than I had before.

So, first thing I'm going to do is have an ultrasound to rule out any physical changes in the uterus since the removal.  Once that's done, we'll discuss options from there. She noted that it's also important to continue working to get my thyroid under control as that can also play a part.

This is all so fucking complicated.

Transplant at the U - Appointment #4

I'm finding it harder and harder to get my thoughts out on "paper".  I've started this blog post a few times now, and each time I just quit because I don't even know where to begin.

I had my 4th appt at the U on Friday for a 1 on 1 education session regarding dialysis options.  This was something I feel I had to ask for, meaning not something they were considering doing automatically or at least not right now.  Which makes me angry and completely confused.  You know...as I'm going through this whole transplant thing, I try to put myself if the position of someone who's less informed than I feel like I am, and it's honestly frightening, because even in my "informed" state, I feel like I don't have a clue as to what's going on.  The worst thing for me is for someone to actually take an interest in my health, ask me a question, and all I can say is "I don't know".  UGH.

So I had my education session, and it was good because I came away knowing more than I went in.  There were, however, some language issues that made conversation difficult, so I mostly just sat there and listened.  Every time she'd ask me, "Do you have any more questions?" I would tense up, thinking..."Is that it?" (she actually asked this 5 minutes in, so I was REALLY worried).  I conveyed my fears about the fistula, which I felt she disregarded, but I did learn that it was more the graft that I was terrified of rather than the fistula.  At the end of the appointment she asked me if I wanted to schedule the ultrasound or surged (hell, I couldn't actually understand which one she was asking) and I was like...SLOW THE HELL DOWN.

Ummm.....I'm not ready to schedule an access surgery.  I JUST LEARNED WHAT THE HELL MY OPTIONS ARE!!!!!  I have no idea how I'm going to decide, but seriously, is this the way it's done?  If so, I'm not having it.  I'm not going to be subjected to what I feel is a sub-standard level of care.  You can be the best medical institution on the planet, but if you can't convey a feeling of competency, knowledge and understanding to me, the patient, then there's no trust, and a whole lot of anxiety, which is what I'm experiencing.  I ended up getting the phone number of someone to call to help me set up an in-unit dialysis visit to a center, so I can see it for myself.

After that was done, I apparently was scheduled for a shot of Aranesp.  I sat in the waiting room for 10 minutes, which is usually fine, but I honestly wasn't sure if anyone was coming because things are so damn loosey goosey there.    The nurse asked me if this was the first time I'd had the shot, and I said no and she was surprised because she didn't have it in her records.  Well, of course she didn't because I didn't have it done there, and this wasn't anything they ever asked me.  Guess it wasn't that big of a deal because she gave it to me anyway.  Once she left the room, I wasn't sure if I was done (hey, maybe another mysterious appointment was expected of me) so I went out to the check-out area and asked the woman there if I was done.  She first said yes, then said "wait" and "what's your last name", which I gave her, and without looking anything up, she said I was free to go.  Ummmmm....I'm pretty sure she had no idea who I was just by my last name, but apparently it was easier to let me go on my merry way.

Then, at 5:15pm, I got a call from my coordinator.  She actually said that she had overheard one of her co-workers telling someone what it means to be listed, and that's when she remembered that she had to call me.  Good think that coordinator was doing her job because mine sure doesn't seem to be.  While on the phone with her, she confirmed that I'm officially active on the list (should've been done in August, but who's counting?  Oh wait...UNOS IS!!!) and then proceeds to tell me what to do if I get a call over the weekend.  I'm like...WHAT THE HELL????  AM I SUPPOSED TO BE WRITING THIS DOWN?  I'VE NEVER HAD A PROPER MEETING WITH A SURGEON!  WHERE THE HELL IS THE HOSPITAL (my appointments are at the clinic, not at the hospital, so I don't even know where it is).  Anyway, a gazillion questions going through my head, and she's painfully (and by painfully I mean completely disoriented) explaining things to me.  I had asked her if she could push back the microphone of her headset because all I could hear were the "P's" and it was like someone blowing into a microphone) but in exchange for relief from the P's, I couldn't hear 50% of what she said.  I asked her if she was going to send me something in writing, and she didn't seem to be prepared for this question either, and started rambling about a document that she could put together for me.

Side note:  This woman is not malicious or bitter in the slightest bit.  I realize when I write that it may sound that way, so I wanted to not that she IS NOT like that at all.  She's just constantly spacey and unorganized and confused-sounding.

Today I got a call from the U saying that the doctor wanted to put me on Vitamin D (guess he didn't look at my medication list to see that I'm already taking a supplement).  Then I got a call from his nurse telling me that, based off my labs last week that I have plenty of iron stores for the Aranesp to work with, and to stop taking the ferrous sulfate.  I told her I wasn't taking it, and hadn't for over 6 months.  I also voiced some concern about the dialysis access coordinator telling me that I needed to decide about an access "soon" and asked what "soon" meant.  Did that mean 2 weeks?  Did that mean 6 months?  No one seems to know, but the nurse said that my doctor would know more at my next appointment, so I guess I have until the 20th to figure that part out.

The number of times information has been incorrect, assumed, or forgotten throughout this short process so far is unexplainable to me, and unforgivable.  I called my coordinator's manager and asked for another, and I also called Cigna to see what, specifically, I need to do to get my care transferred to Mayo.  I also sent a message to the nephrology group via the Mayo web portal, and called and left a message for Dr. F at Mayo to help me figure out what I need to do on that side.  So, I guess for the time being, I'll continue to try to get things switched to Mayo and work to further things along with the U as much as I can.  It's going to be difficult, no doubt, but I feel it'll be worth the hassle in the end if I have that trust back that I have with Mayo.

Another side note:  I'm sorry if these posts are rambling and riddled with grammar/spelling/punctuation errors, but I never proofread them before I hit the "publish" button.  I'm always afraid that I'll censor myself if I do, and I really want the thoughts and emotions to be raw.