Upgrade to CRT-D tomorrow!

Another update to y'all,

I am trying to write all this down in posts to keep those curious up to date and also in hopes that if anyone ever goes through the same process I have they can have some expieriences to reference.

We are now just waiting for my insurance to approve my "transplant assessment". Which at this point is more of a formality than it is about getting the tests (most of them I have already had done).  Goal is to get me listed in the next 4-6 weeks.

Meanwhile they have placed my temporary "permanent" (oxymoron I know) PICC line for my constant milrinone drip.  They are working on scheduling still with home infusion services to get me on a mobile pump and home.  But I know have my "turbo boost juice" lines in place at least, time to get used to them! 
 

The EP department was looped in today on my new status, and within a few hours I was scheduled for surgery tomorrow to upgrade me to a CRT-D.  At first this AM we thought I would be going home with a temporary life vest until we decided on ICD placement but they had an opening tomorrow so we are just gonna do the quick swicharoo while I am stuck in here waiting for home infusions to be set up.

Sounds like since they want to do as little surgery as possible right now with my current delicate balance they are going to use my abdominal pocket that I have had for my last 3 devices.  Unfortunately the CRT-D is about twice the size as my CRT-P which is already having trouble with protruding because it rests against some of my ribs.  They are going to put some kind of "sock" lol that's literally what the guy called it, or cushion I guess around it to help keep it from causing too much discomfort.  Since my device will be temporary until I get a transplant (or kick the bucket lmao) they aren't going to bother with a plastic surgeon.  So I might be rocking an awkwardly placed unit for the next year lol (but they all get removed at transplant).  Not too concerned about the procedure but since I already have one awkwardly tunneled lead they said they will just have to wing it and they say they will try hard not to pop my breast implant eeek.  I am pretty sure we are sticking with Medtronic since that's what I already have and seems to be this facilities go to.  I am glad I won't have to go home with a life vest as that would have just been one more contraption to deal with in addition to the new infusion pump.

It's been a busy morning with docs, nurses, techs, consults all day including a brief visit from my star mitral valve surgeon.  He had caught word of my status and popped over to just say hello and let me know his team is praying for me!  He is a sweetheart, and I am sure bummed we didn't get the results we had hoped for.  I thought it very sweet of him to take the time to stop by when he has plenty of current patients to visit.

Had a chance about 30 min ago to catch the fiancé up on all the news from the morning and told him to stay home today (its a 3 hour round trip drive with no traffic) and get some much needed rest.

I have a fantastic social worker assisting us in getting some home support services approved like light housekeeping, errand assistance, and some premade meals.  My other half can do it all but I think if we qualify for the help now why not take some of the stress off.

Updated several family members, which is a pain having to explain it all to each one.  Worst was my father with advanced Parkinson's who has severe cognitive decline similar to Parkinson's.  So that big hurdle is off the table lmao!  My mother is calling in my big sister to pitch in on monitoring my father (my folks are long separated and remarried), but I live closest to my father and have been the one keeping an eye on his status.  My big sister is currently staying with my mother who said "this is not the time for you to be worrying about your Dads health when you have your own stuff going on.  I was appreciative for the family support as my situation is rapidly changing.

Ok at this point I think y'all have almost every little detail lmao!  I have been in good spirits until about an hour ago where I just started feeling overwhelmed and like a stuck pig (so many tests etc).  I will let y'all know how the CRT-D upgrade goes, and I will try and snap some photos for anyone who has not seen what an abdominal placed device looks like (plus I will get a few kicks out of making a few of y'all squeamish).

Thanks for all the wonderful support!  I think I say this all the time but you are my peeps!!!


8 Comments

It's always great to read your posts!

by ar_vin - 2021-05-20 18:02:29

Hope the CRT-D placement goes well tomorrow! Take good care of yourself.

You have many,many on here rooting for you!

PS: A very close family member (somewhat older than you) went through a double lung transplant a couple of years back and now she's doing great. It was a long wait for her to get her organs.

I hope you get a new heart soon and I'm sure you'll do great as well!

 

CRT-D

by Gemita - 2021-05-20 18:19:23

Dear ASully,

Thank you for the detailed update.  What energy you still have.  You and your team have been so busy today and I wish you all the very best of luck for tomorrow.  I hope they will be able to place your CRT-D comfortably in your abdomen but more importantly I hope it will be beneficial.  We need to build your strength and make you as fit as we can at each stage of your treatment and I am sure your doctors are mindful of this, so you are in very good hands.

Yes please I wouldn’t mind seeing some pics appearing in the gallery, but only if and when you feel able.  I want to make sure your surgeons do the right job.  We have started this journey “together” and we will continue together for as long as it takes.  Maybe get some pics of your nurses and surgical team too if they will allow and then we can make a wonderful album of your journey to better health.

The home support services sound an excellent idea to help you and your fiancé prioritise what is really important from now on.  Just the emotional journey can take its toll and use up precious energy, and you need all the help you can get.  Yes families are a real worry when we have to face serious illness aren’t they, and however poorly we may feel, I expect like me, you will want to protect them as well, to provide emotional support for them because they are hurting too.  Sometimes the action of caring for others actually helps us to find a way through, to stay strong for those we love. 

Now please try to sleep tonight, so you will go into the procedure tomorrow well rested.  Keep your spirits up.  Remember your little peeps are watching over you and your surgical team.

Gemita xx

I just wrote

by Tulp - 2021-05-20 19:28:41


Hello ASully

I just wrote to you. I have my answer here in this post.  I will think about you and keep my fingers crossed.

I hope they will figure out all the questions about you surgery CRT-D and your device will be a solution untill you get your transplant.

We will be CRT-D sisters lol !!

 xx

Tulp

CRT-D

by Aberdeen - 2021-05-20 19:29:29

Good luck- I will be thinking of you!

I cannot add anything to Ar-vin and Gemitas excellent posts!

CRT—D

by Aberdeen - 2021-05-20 19:31:47

Also Tulps comment too.You have an excellent mindset and this helps you greatly!

Update

by Dixie Chick 65 - 2021-05-20 21:49:03

Thanks for letting us know what's going on ! I agree with all the other comments and will keep you in my prayers.

I didn't think that they would want to use a life-vest

by crustyg - 2021-05-21 03:31:38

Glad to hear that you've agreed to the ICD change.  PITA about the size/placement - a real ouch!

Best wishes - and I'm really looking forward to seeing those pictures [grin].

Best wishes

by Julros - 2021-05-21 06:54:39

Whew! You and your team have indeed been busy. I have a very dear  friend who traveled a similiar journey, and he felt much better once he started a milirinone drip, and was new person once he got his transplant. I've cared for patients with a life-vest and they seemed so uncomfortable and awkward. I've seen one abdominal box, but this was years ago when they were huge, so I am interested to see yours. 

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