I got a call from my transplant case manager- Cigna approved my transplant!

Such a relief…..I would have sold my condo to get this transplant done.

I informed my transplant nurse at Northwestern and she said as soon as her insurance people give her the all clear she will get the ball rolling.  I can’t wait to get my schedule so I can get my “team” in place and Michael can request time off of work, we can arrange for travel, etc.

Physically I’m continuing to decline so I couldn’t have gotten this approval at a better time.  I think the steroids are starting to wear off because I’m getting spasms- mostly in my left arm and leg but also my right foot. My left hand also shakes sometimes.  Cognitively I’m having some issues too, I have to set the timer so that I don’t forget I leave something on the stove when I walk away.  I also cut another finger (didn’t cut any of it off this time) because when I was pouring soup that I made from my ninja blender into storage containers I forgot to remove the blade and it fell out and grazed my finger.  Thankfully it was just like a paper cut this time.  By the way, that part of my thumb grew back it’s pretty amazing what the body can do.  Anyway, I go back to see the neurologist tomorrow.  I’m not sure what he will want to do, I really hate to do steroids again.  I’m thinking I can hold on like this until May for transplant stuff but it may get pushed into June as a lot of people have been scheduled already.

This past week I’ve been using my walker to go down the hall to the fitness room in my building and doing strength training in my arms and legs so my muscles get stronger and it’s working.  My balance is still terrible but I’m okay holding on to stuff while in the house and only use my walker when I leave my condo.

Feeling very grateful today and I’ll update the blog when I get my schedule!

Thanks everyone for the well wishes and support!

Plan is back on track.  Dad took me to Rush get additional mammogram screenings this afternoon.  The doctor showed me that there were some nodules she wanted a closer look at but that everything is clear and they were able to get the baseline pics they needed since it was my first mammogram.  She was able to give me the form I needed so that I could get that turned into Northwestern so they can request Cigna approval.  I’m planning for that next week…..let’s hope Cigna agrees.

On Monday dad took me to the neurologist as a follow up appointment from the steroid infusions.  The timing was good because I have been steadily declining.  I can’t remember the last time I drove- I only remember it was to meet a friend for dinner a couple blocks away.  I can’t go out alone now at all- I used to be able to uber.  I now have to have friends meet me here for dinner.  My friend Kim and her daughter have been sleeping over on the weekend which has been a huge help.  They are also going to take my dog Zoe the whole 6 months during and after transplant so that will be a huge help.

I started using a 4-prong cane but need a walker- my friend Kim will bring me her dad’s next time she comes out.  My fatigue is overwhelming, my balance is at an all time low- I’m holding on to stuff not with one hand but reaching out with my other hand now too.  I feel like a bobble head doll.  I’m taking extra antivert for the vertigo.  The steroids have my muscles feeling loosey goosey when normally they are tight and hurt.  Just taking a shower is kind of scary and I need a chair in there for now- thankfully I have a huge walk-in shower.  Yet, even with all this….I know that I’ll be okay, this is temporary and the transplant will help.  May isn’t that far away I can hold on.  I just can’t decline further.  So the neurologist didn’t like the decline, but he said that this can happen with steroids during the taper period.  He said we can wait a couple weeks and see if I start to improve since I’m down to 1/2 pill now.  I agreed.  He said that if I don’t improve we can either repeat the steroid infusions or he can give me athcar injections for my adrenal glands to make their own steroids as kind of a more natural option….however that comes with a hefty price of $50k so it’s not a first course of treatment option.

Yesterday was the best day I had in awhile….I got in a whole 2500 steps which is really pathetic but when it’s been hard to get 1000 steps in a day it’s something.  I was starting to feel a little hopeful that maybe this was starting to pass.  This morning I had a very scary shower.  I felt like I was going to pass out and I had to tell myself “get out of the shower.”  I was able to get out safely and collected myself but it was a wake-up call.  My dad suggested maybe my blood pressure was low.  It may have been I did take it later at his suggestion and it was okay by then.  My goal today was going to be 3000 steps and it looks like I will be meeting that goal after all since I did all the walking at Rush today.  Usually I make little trips to get steps in, like one trip to the garbage chute, then another trip to get the mail, the end of the day I take out recycling.

I’m really hoping that this steroid coma I’m in lifts soon because I am anxious to get down to the workout room and push and lift some weights before transplant.  And I’m tired of “moon face” but more than that my neck is just so tender.  Sigh.

So for now…..I’m spending my time researching gluten free recipes and cooking.  I’m even growing basil.  And I’m finally able to tackle paperwork and get organized and focus totally on me and that feels great.   Still feeling very grateful and breathing better than I have in forever.

Hopefully my next update will be with insurance approval.  🙂

I went and had the mammogram done on Wednesday at Cigna’s request.  Of course, my first mammogram, I would have an issue.

The mammogram itself wasn’t as terrible as I was expecting…..but my  mobility has really declined and I found myself using the cane and holding the wall and it was the walking that really got me.

My plan was that I would get the results back quickly with an all clear, get that to Cigna, and get my transplant approval next week with no more hoops to jump though.

Well, my boobs had other plans apparently.

Yesterday afternoon I got the form letter in mychart from Rush that my mammogram screening showed one or more findings that require further imaging.

So I immediately contacted my PCP (primary care physician’s) office and the receptionist said she’d have my doc put in the order for the rest of the scans.  Of course nothing happens on a Friday afternoon so I’ll follow up on Monday but that office is really good at being on top of things.  Hopefully I can get in ASAP and get the all clear.

I’m not even concerned or considering the idea of anything wrong with my breasts I am just anxious to get this crossed off the list so I can keep going on my transplant journey.

I’m still on the oral steroid taper and that will be done in a few days so I’m hoping for some relief after that.  I’ll see my neurologist on Tuesday for a follow up appointment so we’ll see what he suggests in the meantime.  I can handle functioning like this for a little while….May isn’t too far away…..but I have had to make some adjustments.  I need a bench in the shower and I’m trading up for a 4-prong cane.  Normally I would be afraid of this rapid decline but I honestly feel like I’m going to be okay.

Emotionally I am in a very good place.  I am grateful to the universe for putting me here and being accepted to the study and for the first time in my life I am 100% focusing on me and my health and not work or school or anything else.

I’m back to being gluten free which feels so much better.  I’m enjoying trying recipes and preparing my own food.

As crazy as this journey is it’s truly the best thing that ever could have happened to me.

Hoping for an all clear update on the mammogram next week!

Oh…..and also….thank you to my friends and family.  My family checks on me daily and I have not socialized this much in YEARS.  I am truly grateful to have amazing friends who have come to visit, driven me, taken me to dinner, stayed the night…..words of encouragement, all of it.  Feeling the love.  Thank you.  🙂

Cigna my insurance company in reviewing the transplant request has requested a couple of records- one of them a mammogram which I have never done (I turned 40 last year…..yes I should have done it then…..) so I have an appt scheduled for tomorrow.  The other gyne record I gave them so hopefully next week I will get approval.   Of course they can’t promise anything over the phone, it’s a clinical trial, medical director has to review, etc and my transplant case worker tells me it only takes medical director 24-48 hours to decide so I’m anticipating a yes.  I’ve come this far.

In the meantime these steroids are killing me.  I haven’t been on a DMD (disesase modifying drug) since October so my body wasn’t protected and was acting crazy.  I had three steroid infusions the week before last done in outpatient settings and I’m on the 2nd week of oral steroid taper.

The neurological symptoms are largely improved on steroids but my balance, mobility, vertigo, gait, fatigue, confusion, and all of that are just increased.  I can’t drive or walk much or do much of anything and that is very frustrating.  I’m eating clean making my own food with my delivered groceries and feeling good about that.  I would like to increase my physical activity but it’s very difficult.  I put on my fitbit yesterday for the first time since August and took a whopping 2500 steps which actually took some intention to do.  I’m going to try some chair exercises.

I’ve also applied for disability which is something I never thought I’d do.  I know it can take years to go through but hoping that my case will go smoothly.  I made a good contact at the local office who seems supportive.  I also have a disability policy I took out several years ago that’s only good for 6 months but that’s totally fine with me for now so hoping that will help.

So life in the meantime is about surviving your symptoms, trying to get your household affairs in order, being as healthy as you can, planning and being a full time patient.