On to the University of Minnesota...

I called Dr. Lee on Monday and left a message with his office regarding the "No Referral" status of Hennepin County Medical Center in regards to my insurance, and within 5 minutes he called me back.  Within a day he had spoken with the director over there, got me hooked up with the transplant coordinator, and started the ball rolling over there.  I tell you...he's fantastic and efficient!

So I spoke with the coordinator at U of M, and she explained all the things that would happen next.  I received a packet of info from them yesterday that I perused last night, but hope to spend more time this weekend digging in.

I realized that I MUST get this stuff organized at the beginning.  I've already lost one set of notes that had all of the Cigna nurse case manager info on it, so I can't let that happen again.  Not exactly sure what method I'll use, but I'll figure something out.

The last 3 days I've spent on my feet at a convention center for a trade show, which means my legs and back are horribly swollen.  And I'm a level of tired that I can't quite articulate, but I wanted to get this post out so I can go to bed.  I thought I'd do all of this research tonight, but I realized that I'm too tired to make sense of anything.  This is the first week in a few where I've had to be up so early every day.  It's taken a lot out of me...I'm not getting the sleep I need nor the exercise.  And I'm traveling next week to Cleveland, where I'll spend another 4-5 days in a classroom, swelling.  Awesome.

I wanted to go for a run tonight when I got home because my couch-to-5K program is lacking right now, but we had a freaking snowstorm in April overnight, and so that's been officially ruled out until the snow is gone again.  I want to run, but no way in HELL am I doing it out in this weather!  Maybe Izzy will want to go to the gym with me on Saturday :)  I guess I better check to see if my hotel has a treadmill or something, although I doubt that my schedule will permit much time for me to do anything next week.

I'm thinking of my friend Kinga tonight.  She recently had a baby, and then had to go on (what I would consider) emergency dialysis.  She has a catheter that is causing her quite a bit of pain, and she's frustrated trying to be a new mom and a person dealing with FSGS.  I'm wishing her all of the best, as she's been through a lot.  Please help send positive vibes her way....

I have a nurse case manager!

I guess I need to get my ducks in a row.  Now granted, I'm actually pretty organized when it comes to my kidneys (not so much in other areas, but I digress).

So, Hennepin County Medical Center is in a "no referral status" with Cigna, which means that if I were to choose them for a transplant, then my benefits would only be covered at 90%.  With choosing a Lifesource facility, which is Cigna's way of saying "preferred", they're covered at 100%, plus travel benefits if a center is 60+ miles from my home.  The 2 Lifesource facilities here in Minnesota are Mayo and University of Minnesota, so the next step for me is to contact my nephrologist here in town and see what he thinks of U of M.

Once a facility is selected and Cigna contacts my nephrologist, I need to be evaluated and approved for a transplant via the insurance company.  There'll be a battery of tests (most of which I've already done) including chest x-rays, EKG, ECG, dentist, and visits with a social worker.  I'll also provide my previous results for pap, colonoscopy and mammogram so that I don't have to do THOSE again.  Once all that stuff is done, AND if they approve me, THEN Joacim can get typed for donation.  It's a bit frustrating that we go through all of this before we even know if he's able to donate, but then on the flip side, it wouldn't make sense for insurance to pay for typing if I wasn't able to get a transplant.  So I guess it's a wash.

This will be interesting...to see how it all plays out.  Who knows what will happen....if this will even go through.  I'll just keep my fingers crossed that we make it to the point of typing Joacim, because as I said earlier...if he's not a match, then it just doesn't matter.

Other than that, things are good.  The only side effect that I think I'm experiencing from the trial is an occasional bloody nose, but since I live in Minnesota, that could be weather-related.  I've communicated this info to the coordinator for documentation, but it's not sever enough to warrant worry, just annoyance.

It looks like we're starting up a chapter of Nephcure here in Minnesota now!  And we may hold our first walk at the Mall of America.  There is an amazing woman who I consider to be a friend that is affiliated with the mall, and sadly her daughter has FSGS.  She's going to be an amazing asset to the organization!!!  We also have a new regional coordinator who is excited and energized, and planning on making a trip up here.  There are apparently quite a few FSGS patients in Minnesota, so we need to do a better job of getting the word out!

Nerves...

Mine are frazzled. I'm lying in bed at 8:00 to TRY to relax, but I'm finding it nearly impossible. Murphy has a squeaking toy, Izzy wants to "snuggle"...I just need some peace and quiet. I've had a headache the last couple of days and some nausea, so a good night of solid sleep is just what this chick needs.

Clinical Trial

This past Friday I started my 2nd clinical trial.  You may remember that I am participating in the FONT II trial.  I had to stop the drug portion early due to a cervical cancer scare (thankfully everything is OK), but I'm still being followed on that one.  This newest study is another drug trial, but this time I have no idea if I've gotten the drug as it's a randomized study.  It's a 3-armed study (placebo, half dose and full dose), and it lasts 252 days.  I'll have 4 IV-infusions and then follow-up labs/surveys for the duration.  The infusions are 28 days apart, so my next one is scheduled for the end of April.

My nurse.  We're kindred spirits :)

The tools required for the job

Warming up the veins

The IV

The vampire's request

the bag

the setu[

and a selfie

So far, I don't feel any different.  My urine is still ridiculously foamy, and I'm swollen.  Hopefully I got the drug, and hopefully it works to reduce my protein.  Fingers crossed :)

Freaky eyes

Thursday sucked.  And here's why:

I had cried a lot on Wednesday due to the fact that my kitty cat has gone missing (and no, he's not home yet ).  And when I cry, my eyes freak out and swell up.

 

This is not only freaky to look at, but it's nearly impossible to really see things clearly.  There's so much extra weight in my eyelids from the water that it makes my eyes feel bizarro, and everything's pretty blurry for awhile.  It take a few hours for gravity to take effect and allow me to venture out in public.  What's weird about this when it happens is that my right eyelid actually raises due to the amount of water that's trapped in there.

I had a lot of things planned for that day..I was going to do newborn photos in the morning, but had to cancel because I couldn't focus my eyes, or really drive, for that matter.  Thankfully we were able to reschedule.  It probably all worked out for the best anyway, as I stayed home and did my 24-hr urine for my clinical trial that started at Mayo the next day.

Tired. Tired. But not-so-swollen.

Annnnnnddd...my weight is swinging the other day.  It started on Monday, and by today, I'm down about 10 pounds for the week.  I tried to start keeping track of everything (weight, food, mood, phase of the moon ;) to see if I could draw any conclusions, but honestly, if I'm feeling better, I forget.  Maybe SOMEDAY I'll come up with a sustainable system.  But I won't be holding my breath.

I had another iron infusion on Monday.  This time, I was able to do it at a local hospital, which worked out  well.  It was a craptastic winter day outside (the best word would be blustery) so a few hours in a warm room with a blankie and some iron is just what this girl ordered.

It looks like coffee, doesn't it?  Too bad it's not :)  I COMPLETELY fell asleep during this infusion.  The last one I had at Mayo was a push, but this was a drip that took around 2 hours, plus another half hour for observation.  No biggie...glad it's done, but I don't feel any different..not worse, but not better either.

I've got the clinical trial infusion that begins this Friday, so it's ANOTHER trip back to Mayo.  Keep your fingers crossed that I get the drug :)

Oh, and more good news.  My "friend" Matt from www.onekidneymatters.com is GETTING A KIDNEY!!!!  CONGRATULATIONS Matt!!!

Tired. Tired. Swollen.......

I'm still swollen.

Actually, I'm a bit worse than I was earlier this week, and I didn't think that was possible.

I wore compression stockings all day, and it didn't make a bit of difference.  My eyes are swollen, my face is swollen, my belly is severely distended...there's swelling up to my chest and through my lower back.  My skin is irritated and sensitive, and I have heartburn that a dragon would probably be jealous of.

For me, this drastic weight gain is like going from normal to being 9 months pregnant in 10 days.  And the associated pain in my back and hips from the added weight is unbearable, let alone the stiffness in my knees and ankles.  Putting on a bra feels like a medieval torture device due to the constriction it puts on my breathing.

In essence, I'm miserable.  Horribly, horribly miserable.  My husband is out having drinks with a friend, which means I'm at home with Izzy.  Normally, no biggie, but it's taking every ounce of strength I have to be coherent at this point.  I wish he'd come home.  I wish he'd get up with her tomorrow morning, but I doubt that'll happen.  I feel like I need to spend the whole day in bed, but I look around at the disaster that is my house, and I know that it'll be impossible for me to do it.

I bought this awesome light tent and some lights the other day to start playing around with my macro lens, and I haven't even gotten them out of the car.  Anyone who knows me knows this is unusual...I LOVE new toys and gadgets, especially those photography related.  I just don't have it in me.

I met with another doctor on Thursday, and the experience was amazing.  I hope to write more later, but needless to say that in that short conversation, I already feel like I gained something.  I'm signing up for a dialysis education class with Joacim, as well as meeting with a transplant surgeon to discuss the possibility of a surgical nephrectomy.  Yeah, I know...HUGE step.  This is not to say that I'm going to do anything...I just need to educate myself at this point.  But this is the first step in getting Joacim and I typed to see if he's a match for a live donation.  If he's not, then all of these conversations I'm having with this doctor will stop, and I'll wait for the inevitable failure of my kidneys.  But if there's even the remotest possibility that I can ditch these beans and get a new one, then the chance to live a normal life might be too good to pass up.  There's A LOT to research..a lot of questions to ask, but I'm thrilled that there's someone out there who's willing to entertain my ideas.

Thanks for all of your kind words and thoughts.  I'm in a pretty low place right now, physically, and it's affecting my mental health as well.  Not being able to move around, or fit into my pants, or even bend at my waist at this point is wearing very, very thin.  I'm tired of winter...tired of snow...tired of wearing boots and my winter coat...tired of salt on my car...tired of this messy house..tired of the clutter...tired tired tired.

Okay, thanks for visiting my little black cloud of doom today.  It'll get better, I know...but allow me the wallow, won't you?

Clinical trial pre-screen

I had my pre-screen appointment for the newest clinical trial today at Mayo.  It was an early morning...got up around 5:00am in order to make it there by 8am, which was my first appointment at the Clinical Research Center.  I had to drop off a couple of urine samples and get some blood drawn, and then I was off to get my ECG (electrocardiogram).

waiting for my ECG

right before the ECG...not a great photo, but she wanted me to put my arms by my side

I think you can guess what this was

The ECG was incredibly quick...I'm thinking it was only about a 60 second reading but I passed.  After that, I went over to the Nephrology department to meet with the clinical trial coordinator and Dr. Fervenza.  She asked a bunch of questions for the study, and he did a physical exam.  He was wonderful this time, making sure to allow plenty of time for my questions, and I could tell he was definitely making the effort, which was such a great feeling.  Anyway, my blood draw had to be sent out due to the study, so we didn't have my hemoglobin results, so he ordered a blood draw in order to get that taken care of.  It came back at a 10 this time, which means I'm unofficially cleared for the study, but Dr. Fervenza wants me to get more iron, so I'll have to get that taken care of sometime this week.

I was EXHAUSTED by this point.  I made the drive home, stopping in Eden Prarie to run an errand.  Once I got home, I went straight to my pillow and woke up 3 hours later.  Izzy was kind enough to take a photo of me once they got home.

I'm swelling A LOT right now.  I've gained 10 pounds since Sunday morning.  During the physical exam, Dr. Fervenza noted that my swelling has gone up through my lower back, which (physically) feels awful.  This wildly swinging weight gain/loss is getting old and painful.  It feels terrible to gain so much weight so fast, and it takes a few days to adjust to it.  In the meantime, I feel like a penguin waddling since my thighs are swollen and rubbing together.  I have the exact opposite problem I had 2 weeks ago when I couldn't find pants to fit because I had LOST so much weight.

I have 2 meetings tomorrow and at least 5 hours in the car.  When I feel like this, I can barely manage one appointment a day.  It completely wipes me out, and it's about all I can manage right now, until I re-adjust.  This makes it hard, work-wise, but makes me grateful for the flexibility that my schedule allows.

On a better path...

I met with my PCP last week and was able to ask her a bunch of questions.  She switched my Xanax prescription to another drug (that's name completely escapes me right now) due to some of the potential addiction issues.  I'm glad she's actually looking out for me, and it was a much easier conversation that I thought it would be, so I'm glad I was COMPLETELY wrong on this one :)

Last Thursday, I got a call, and I saw it was from Mayo.  I couldn't answer it at the time, but I checked the voicemail later and it was Dr. Fervenza.  I can't tell you what it was, but I TOTALLY felt like I was in trouble...like somehow he knew what I wrote previously.  And then I thought I was just being ridiculous.  However, I wasn't wrong.  I called him back later that day, and he flat-out asked me if I was unhappy, and I told him that I was.

It was an interesting conversation, but a good one, and I'm glad it happened.  There's been several mis-understandings along the way, and I was able to clear up some of them.  Por ejemplo...remember the last time I was at Mayo back in the fall, and I was told that no one would transplant me?  Well, that's true, at least for right now, but that's because my kidney function is too good!  Yeah, I know...it's all a bit confusion, but it's measuring around 70% right now, and that's just amazing.  When I need it, I WILL be able to get a transplant, but that could happen next year or 5 years from now.  I'm just happy to know that when I need it, I'll be able to get it, so WHEW!

And I'm glad it happened because I was able to tell Dr. Fervenza what it was like for me, being a patient with a disease that may not be life-threatening, but is completely life altering.  I talked to him about the fact that losing 23 pounds in 5 days does not feel like a good thing when I have no idea why it's happening.  I told him that I need to understand things in order to feel as though I have more control of them...and you know what?  He got it.  He totally got it.  And I'm forever grateful.  I have the utmost respect for a doctor who is willing to take the time, call me out on the things that I say, and get to the bottom of it.  The fact that he even cared enough to try is, in and of itself, wonderful.  I'm just very happy about how it all turned out.

Yoga is going really well too.  I love it.  I feel absolutely spent when I'm done, yet exhilarated at the same time because I finished it.  I haven't been able to go in a few days, and I'm aching to get my sweat on.  Keep your fingers crossed for me that this winter storm we're having right now will be over before class tomorrow night :)  My weight is going back up again, after being at an all-time low last week, but I've also been completely addicted to pickles lately.  This isn't really a new addiction, but sometimes it takes over and my willpower is weak.  I'm back on track again though...

Out of sorts

I feel like I'm drowning in my own negativity lately, but I gotta get it out.

I sent a message to my PCP today asking her to write a prescription for Xanax.  This is something I've taken for the past 4 years.  My PCP in Indianapolis originally prescribed it, and he had a nice working relationship with my nephrologist.  When I moved up here, Mayo was my primary source of care for the first 4 or 5 months, so Dr. Fervenza gave me refills on all of my prescriptions.  When Dr. Zand came into the picture, she continued to do the same.

A couple of Friday's ago, I noticed that my Xanax needed a new prescription, so CVS sent the request to Mayo.  After not hearing anything for a few days, I called the next week to find out that the nurses hadn't even looked at my request until Wednesday, and that it would be another 48 hours before the doctor would approve it.  At this point, it was already Friday, and I was at Mayo. I asked Dr. Fervenza about it, and he said that he wasn't going to be filling some of my scripts anymore as my PCP should do that.  I don't have a problem with that, but some notice shorter than 7 days wouldn't been nice.  I was completely out, and this is a medicine that you just don't stop cold turkey.  That whole thing just added to my disdain about my appointment.

So this morning, I sent a message to my PCP via their web app requesting her to fill this med.  She knew I was taking it, but hadn't prescribed it for me in the past.  Needless to say, the reponse I got irritated me too:

"We didn't discuss this issue at your last visit, but I don't prescribe alprazolam for a number of reasons. I can give you a short term prescription for lorazepam, which should work the same but has fewer problems associated with its use. Have your pharmacy send a refill request to our office and we can get a prescription printed and signed; med refill requests are handled faster if you request them through your pharmacy since we have an office process dedicated to that, and messages sent directly to me may not be reviewed if I'm not in the office. I'll need to see you in the office in follow up to continue refilling this, as it is a controlled substance, and you may ultimately find it easier to have your nephrologist here prescribe this for you for the same reason your nephrologist was doing this for you before. See you soon!"

 So, am I going to have to go in for a physical visit, pay a co-pay for each time this happens?  Seems like a waste of money, and time, when we have this lovely thing called EMAIL.  Ugh....I know doctors have a hard time latching on to new technology, but COME ON.  I mean, my job is flexible, but I don't have all this time to be keeping my schedule open in order to go visit the doctor to prescribe a medication that I've been taking for the past 4 years.  This will be 3 doctor's appointments in 5 days....too much.  Considering the stress I'm under, I think it's pretty natural to want this medicine and it works beautifully, but I can tell you that without it, I'm a mess.  Maybe it's partly psychological because I'm aware that I haven't taken it for over a week, but I can feel the edginess creep back in my psyche.  I've got this tightness in my chest that I just can't shake, even after yoga today.

Yoga frustrated me because I just couldn't get into the practice.  And I started having a lot of problems controlling my breathing, which caused me to take frequent breaks in child's pose.  I was completely off balance....guess it could be the combination of my lower blood pressure today (90/63 at this morning's doctor appointment) and the heat of the studio, but it was a very unfulfilling practice for me today.  This, of course, is only adding to my overall frustration.

Thankfully I was able to get an appointment with my PCP for Wednesday, so hopefully I can clear this up and get some other drug if she doesn't like zanax....All in all, I honestly feel that the quality of care I'm receiving has dropped since moving here.  It's definitely been a LOT more work than it was before...there's something to be said with having your nephrologist and PCP within 5 miles of your house, which was the situation I had back in Indy.  And none of them talk to each other....I gotta figure out a way to fix this, and fast.

I hope to have a conversation with my PCP on Wednesday to talk about my schedule, and how difficult it is to make appointments...to find the time.  This usually leads me to delay things, which can't be good in the long run.  Hopefully she'll be willing to do more things via email.  Fingers crossed.....

From patient to participant

We spent the ENTIRE day at Mayo yesterday.  We had to leave around 5:00am due to the winter storm that conveniently hit overnight.  My first apppointment was at 8:00am at the Clinical Research Center.  I had to drop off my pee and do labs, as well as follow-up paperwork from the FONT study since they're still following me.

 Then it was a whole lotta waiting.

We went to Mac's for breakfast (favorite part of the day :),

and then to Barnes and Noble to browse.  We actually managed to escape from there without buying a thing (amazing in itself) and headed over to the 19th floor of the Mayo building to wait it out.  They've got a nice little waiting area with a great view and wifi.  Izzy was SUCH  trooper throughout the whole day, considering how early we got her up.  She was happy and amiable and well-behaved....incredible.

Finally, 4 hours later, we finally got to see Dr. Fervenza.

And it was a complete letdown.  I had waited 4 months for this appointment, and I can't express my disappointment in the whole thing.  For starters, my labs STILL weren't in the system...6 hours later.  He was all happy and joking and telling stories, which is fine, as long as there's a serious portion of the appointment, which there wasn't.  I had a list of questions that I wrote down, and he essentially evaded every one of the questions or gave me an answer I found completely unsatisfactory.

During the appointment, he takes dictates his notes over the phone, and the phrase "acute renal failure" rolls off his tongue.  This was from the prograf that I was taking that was becoming nephrotoxic....but I didn't realize we were at "acute renal failure".  You see...these words sound important, and they deserve some exploration/explanation, but I got neither.

He finally noticed that my hemoglobin was low.  It's been low for months, but he only noticed this time because currently I can't qualify for his study because it's too low, so he ordered an iron infusion right there on the spot.  I think he's used to people essentially living in Rochester for a week or so during their appointments....not a local yocal who thought she'd be home by 5.  That's not entirely fair...I'm glad he did something....wouldn't it be nice to have talked through it first?

I can't quite articulate what it was about the whole appointment that had me steaming.  Essentially, in that appointment, I realized that I've gone from being an interesting patient to being a participant in his clinical study, and that feels like a big difference in the way he interacts with me.  I feel that he's only going to be interested as long as I'm fulfilling a purpose in his study, but otherwise I don't think I'd get much.

I'm rambling because I'm angry.  It's been almost a year since I saw him first, and I'm in the EXACT same spot I was.  That's good from a kidney perspective, because I'm stable it seems.  It's bad from a mental aspect (at least for me) because I still don't have a plan.  And I NEED a plan.  DESPERATELY.  Even if that plan doesn't come to fruition for years, at least it's a PLAN.  This is limbo, and as I've said before...I SUCK at limbo.

The coordinators for both clinical trial studies were present at my entire appointment, and that's all we talked about.  Not my current lab results...not what the next steps were in regards to my health.  Only what the next steps were in regards to his study.  It may not have been meant to be that way, but that's how I left feeling.

I'm glad I am getting another doctor.  I'll continue to see Dr. Fervenza because of the study, and because I want to stay affiliated with him/Mayo for when I need a transplant.  But right now, I need a whole lot more than what I'm getting in regards to the doctor/patient relationship.  I know that, for me to have the best care possible, I NEED to have a relationship with my doctor where I don't feel rushed, where I feel that my questions are valid and answers well-thought out...where I'm a patient, and not a participant.  Having a chronic illness is bad enough...I don't need to have an insufficient relationship with my doctor as well.  I don't deserve it, and I won't stand for it.

I'm not looking for new treatments, or the promise of remission.  I've LONG since given that up.  What I AM looking for is a doctor who will work WITH me to give me the best care (physically and emotionally) possible and help me create a plan of what the next 1 year or 5 years might look like.  Hell, I never even got to have the conversation with Dr. Fervenza about Joacim being a donor...I felt like I was hanging on to the hems of his pants trying to keep him in the room.  That's never a good feeling.

Ugh...I'm just so damn disappointed.  I may look back at this post and think that I'm expecting too much, but I doubt it.  I'm trusting my gut on this one.