Thursday, June 30, 2016

Maria is home, rehab didn't get approved - another diagnosis got added

Maria came home from the hospital yesterday. Yes, home - no rehab. In the end, we didn't get it approved by insurance. Just pray she doesn't fall and that I can keep up with everyone around here! The consolation prize to no rehab was getting sent home with a walker - because, you know, we need more medical equipment around here!

On Tuesday afternoon they added yet another diagnosis to her already long list. She has Addison's disease. By itself, it's very manageable - like the Graves Disease she was also diagnosed with in the past week. It's just making her that much more medically complex. Both of these together mean she also has Autoimmune Polyglandular Syndrome. They add this to the chart since these autoimmune diseases are pretty rare but since she has 2 of them, they need to be on alert if any others surface. Her kidney disease is also autoimmune - IGA Nephropathy. Her body has not been good to itself all in all. :( But I did already know my girl was rare. :)

They printed out the side effects on her medications at discharge - we had to hire a crane to get it down from the 5th floor.

Apologies to those I ran in to or conversed with Tuesday afternoon and evening. I was overwhelmed by yet another "disease" and worried sick about the implications. It just seems more and more of Maria's poor body gets involved in long term problems. Kidneys, pancreas, parathyroid, heart, thyroid, and now glandular systems.

The "good" news is that the new diagnoses don't eliminate her from eligibility for a kidney transplant. We have to find a way to get there. Her quality of life has eroded horribly in this past year and we really need some light at the end of this dark, crappy tunnel.

For those who don't already know - they have put up some large hurdles we have to get over before they'll even let us be considered for a transplant. We are working through those and are actually finally getting a little closer, though it will still likely be many more months before she gets referred and then several more months after referral before a surgery would happen.

We are looking forward to a 3 day holiday weekend ahead and hoping to catch our collective breath. Wishing all of you a safe and joyful holiday!

Once we picked Maria up from the hospital yesterday, Gus just kept repeating, "I'm so happy to have you back, Mama! Mama Christi, aren't we SO HAPPY to have Mama here?" No more FaceTime - we get the real live deal!

Monday, June 27, 2016

Using the "D" word!

Yep, they used the D word today - discharge!

I guess they feel like they have things figured out with the hormone and thyroid stuff. They are just making sure she holds steady and they are looking for a rehab unit with an available bed. We're really hoping that she can regain some strength. My poor girl is just wiped out and so weak from being so sick.

I'm sorry if you've called or texted or Facebooked or messaged and haven't reached either of us! I have gone back to work full time (and then some). Maria has dialysis Mondays, Wednesdays, and Fridays and she is always really especially wiped out from that. When I talked to her this afternoon she was going to try to get a nap. We aren't even going to have time to see each other today. :(

We have a plan in place for Gus for July 5-8 also. It's just amazing how many of you are willing to jump in and help us out! Thank you so much!

We have definitely asked for and received help this past week - much appreciation to those of you who helped and those of you who offered!

We don't really know yet how long Maria will be in rehab. A couple years ago when she did it, she was there for 3 weeks. She's on private insurance now, though. so not sure what they will allow.
Leaving the hospital is hard when we have to leave Mama Mo behind.

Saturday, June 25, 2016

Completely different direction for Maria

Well, yesterday they said they were definitely going to take out the kidney and today they said they aren't. Based on some of the other test results, they do not feel her pituitary is affecting her glandular functions. They started giving her thyroid medicine and her diarrhea stopped. She has hyperthyroidism - they mentioned Graves disease. And they are trying to balance her hormones to fix the other glandular stuff. As of this moment, they feel that might just cover it.

They did a gastric emptying study yesterday and it came out normal.

Her nausea is mostly controlled and just down to the "normal" nausea and vomiting she always has when she's on dialysis.

They haven't mentioned how long they want her here. No one has come back to talk more about the rehab once she gets out of here. I guess if their care plan of treating the thyroid and hormones work, then we'll start talking about that stuff next.

Thank you for the continued prayers and support!

Thursday, June 23, 2016

The little we know for now

I didn't have enough new information to even post an update yesterday. I only have a bit more to offer today.

Yesterday they scoped her top and bottom and didn't find a thing. Other than the pain she experienced of the colonoscopy could maybe indicate some IBS. We've suspected something IBS or Gastroparesis for a long time but it's certainly not to blame for this sudden decline.

The Nephrologist and her PCP both think her transplanted kidney could be causing her issues. Except that most of the time when that happens the patient has a lot of pain around the kidney site and she doesn't have any. They think maybe the immunosuppressants she's on have made it impossible for her body to launch a proper response to the kidney going bad. The surgeon isn't ready to say he'll take it out and it will be next week before he makes that decision. There is always risk with any surgery and that's really the only downside to removing the kidney - if it doesn't work, it will have been unnecessary surgery. I'm a bit disappointed they are going to wait some more. The Nephrologist said if it IS the kidney going bad, then she'd feel better by the day after surgery.

Late last night they got the first lab work that came back abnormal. It was her TSH (thyroid) and cortisol levels. With both of them registering almost zero, they are now testing and evaluating all of her adrenal functions. If all of the adrenal functions are "off" then it could be her pituitary gland, which is the master controller of all of the adrenal glands. We were concerned upon hearing this as the pituitary gland usually only malfunctions due to an inoperable brain tumor. However, they think it's more likely also the immunosuppressants keeping her pituitary gland from working well.

So they are doing more investigative blood work and also some test in the morning where they test her blood, give her an injection of something, test her blood again in 30 mins, inject, 30 mins, inject, 30 mins. That will measure if they are able to artificially stimulate the glands.

I asked if these 2 things were related - the kidney maybe going bad and the glands not functioning right. I was told "no". They are separate issues. It still seems to me that they both point to the immunosuppressants, though. But what do I know?

The local Catholic priest came today and visited with us and prayed with us for what seemed like a long time. That was comforting and nice.

The only improvement for Maria is that they have found a perfect cocktail to manage her nausea better. She actually ate a little bit of all 3 meals today and that hasn't happened for weeks!

Please pray for guidance to all of the specialties involved with making care decisions for Maria. And pray that the tests tomorrow aren't miserable for her.

The support and love we get is truly humbling and we appreciate all of you so much!

These two sure had a love fest getting to see each other tonight. It's going to be a long road ahead without having Mama Mo at home.

Tuesday, June 21, 2016

Maria in the hospital

Quick backstory - Maria's transplanted kidney from Jan of 2003 failed and she had to start dialysis by Aug of 2015. She hasn't done well on hemodialysis and we knew that from 2001 when she was on it a year. She's been slowly not doing well over the course of this past year.

Then about 2 months ago she started to really not feel well. She started some symptoms that have been plaguing her and not getting better since. Last month she went to her primary care physician (PCP) and he ordered a bunch of tests. Nothing came back pointing to anything definitive.

In the last 10 days she has spiraled downhill. She's lost about 18 lbs, has started falling, is very weak, can't hardly eat anything, when she tries to eat it comes out both ends almost immediately, isn't sleeping well but just wants to be in bed.

Her dialysis people wanted her to leave dialysis on Friday night and go straight to the ER and be evaluated but we had a wedding to go to and went out of town briefly for that. So immediately upon our return, we went to the ER on Sunday. They ran a lot of the same tests her PCP had done just weeks earlier, and they also came back "fine". We were shocked they sent her home. The ER doc said, "Without finding anything wrong, what do you want us to do for her?"

So we arranged to see her PCP who was out of town until today. They squeezed Maria on to his already packed schedule. He had been up since 5 AM and had already reviewed everything in her chart including the ER stuff. He spent about 3 minutes in the room and said, "Ok, I think you need a blood transfusion and we're direct admitting you."

She's admitted at Christ Hospital now. (On 5 South until a bed opens up in 5 West.) Her PCP's Nurse Practitioner was in a couple times, her main Nephrologist came in, OT and GI were there. Nephrology wants to be sure we exhaust all other options before doing a blood transfusion as the transfusion can mess up stuff for a future transplant. Nephrology will pour over her chart and test results, then likely several docs from that group will discuss her case and see what else they can do to find a root cause. No one really knows why she's tanked so badly. I'm hoping maybe by tomorrow they might have a game plan.

We're just hoping they can pinpoint something and treat it so she can get over this hump. Meanwhile, she's gotten so weak that pretty much everyone agrees she probably needs to do some physical rehab after discharge. She was in rehab for 3 weeks a couple years back and it really helped her get back on her feet. The demands here at the house are really just too great for her to get the rest she needs to regain her strength in a positive way. Let's hope the insurance company agrees!

Huge thank you's to everyone who has stepped up and helped us already! At the moment I think we have things under control. I may need help during the 4 day week after the 4th of July as Gus doesn't have Conductive Ed and I can't take off work as the other recruiting leader is out on vacation then. If you have any ideas of care and entertainment for Gus for any of the days from July 5-8, please let me know!

All prayers, good thoughts, healing energy, etc, are greatly appreciated!

At the rate we're going, it could be a while if/when we find out what's going on with her but I'll try to keep things updated here.

Hoping that all of our family and friends are doing well and having a great summer!