Wednesday, October 22, 2014

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....

Sunday, October 19, 2014

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!!!!!




Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I&#...