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!

Monday, December 21, 2015

Esther Lou O'Brien CD RA OAP AJP, 6/1/2004 - 12/21/2015

Goodbye, sweet Esther, my heart dog


My heart is heavy with grief as I write this post, which I will launch live once Esther passes on from this life in to the next. She is laboring awfully hard for each breath as she sits next to me on the couch. I'm trying not to watch the clock as the vet will come to our home in 3 hours and end her suffering. She's gone downhill very quickly in the past 2 weeks and our efforts to save her have failed. These valiant shepherds seem not to let on that something is wrong until it's too late. She was already full of cancer when we realized she wasn't well.

Esther had a rough start. She was taken at a few weeks old with her litter mates and many other German Shepherds from an irresponsible breeder who kept the winning show dogs in the house and let the others live in squalor. Her mother was such a mess, they had to put her down. Esther and her litter mates went to a GSD rescue and we spotted her on PetFinder. I loved her right away. We had to wait a couple weeks to go back and get her until she was 8 weeks old.

This was the day we picked her up to bring her home

Her puppy shot taken at Petsmart


Esther was the salve to our grief at the time after losing Maria's precious Idgie, a lab shepherd mix. Idgie and Ruth, a beagle, were Maria's dogs that I became step-mom to when we got together and were the first dogs I had ever lived with. So Esther was our first baby together as a couple and my first dog from a puppy ever in my life.

I set about being a dog owner much like I do everything else - all in and over the top! I read all kinds of books and took Esther to puppy class at Petsmart. That first trainer said, "You'll never get that dog to get over being shy and she won't amount to much." We changed trainers and found a great one up at Fields Ertel. We took every class she offered there and then joined "The Yappy Hour" there, which was an hour every Saturday morning where a group of us dog owners got together to let the dogs play and to reinforce the tricks and training we had already done. We would off leash heel all around the store with all sorts of distractions, we taught the dogs "go around" until they would go all the way down an aisle and back up the next one to come back to us. We clicker trained and learned tricks. We did sit stays and down stays in the middle of the store and went out of sight. We cherished these Saturday mornings together. We lived down in Northside at the time so it was a 30 minute drive. Esther would lie down in the back quietly until we got there. One day I was on the phone and accidentally missed the exit. Just as I passed the exit, Esther sat bolt upright and gave me a huge Yowl! I didn't realize until then that she knew the way so well.

Esther, left, and her friend, Lucy, after an exciting romp in the mud. They had so much fun that day until bath time!


Evelyn attended the Yappy Hour, too, and told me about agility and Queen City Dog Training Club, where she was a member. I decided to try it with Esther and signed up for classes. Little did I know how that would alter the trajectory of my life. I'm so grateful for Jim and Linda who were our first agility teachers. We kept training and learning agility until we were ready to compete in AKC agility competitions.




That first agility trial was in Dayton in the barn and I remember so well. We had Queen City Dog Training Club shirts and I didn't wear mine that first competition because I was worried that we'd be an embarrassment to the club. I was so ecstatic when we pulled off our first "Q" - that's a qualifying score. We kept Q-ing our way through trials, spending 2-4 weekends a month at Agility Trials and spending 1-3 weeknights at the club training and practicing. We met so many lovely people and their wonderful companions along this journey. I can't imagine life without having been a member at QCDTC and getting to know all our friends who have become like family.


Esther wasn't fast at agility and we had a very tough time making the time limits. She was a hard worker and seemed to say, "Don't rush me - I'm getting this right." The OAP and AJP after her name are agility titles - Open Agility Preferred and Excellent Agility Jumpers with Weaves "A" Preferred. At some point during practice sessions, Esther would do a jump or 2 and then would pull me over to the door to leave the club. Some vet visits and imaging later, we realized she had osteophites on her elbows and that the jumping was causing her pain. We did some therapy, kept pain meds on hand, and upped the supplements in her food to support her joints and she's mostly done well since stopping agility.



Once we couldn't do agility anymore, we dabbled around in all sorts of other stuff. She has titles in Obedience - CD = Companion Dog; and Rally - RA = Rally Advanced. We also did some herding and tracking. She was happy to just get out and be with me for anything.


Maria put the CD title on her


In 2007 when I started working from home, Esther was our only dog who would come and sit faithfully by me all during my workday. And she's always been such a good girl Even having work phone call after phone call, not many people ever knew I had a dog in the room. I remember one day I had gone downstairs to make a hot sandwich and I set down this steaming meat and cheese filled creation on the edge of my desk to go use the restroom. As I was in the restroom, I thought, "Oh boy, that sandwich is not going to be there when I get back!" But it was and I shared some with her just for being such a good girl.

When Esther was maybe 8 or 9 mos old, I attended a therapy dog certification class at Clermont County Dog Training Club. We got halfway through the test when the administrator realized Esther was not yet 1 yr old, which I hadn't realized was a requirement. They told me they couldn't believe how mature and well behaved Esther was and that we should certainly not be deterred and they'd love to see us again after she turns a year old. We did return and get her therapy dog certification and joined TPGC - Therapy Pets of Greater Cincinnati. Most of her therapy work was done at the Veterans nursing home down in Northern Kentucky. Those guys just loved to see her. She was happy to go and get pets and share love and then about an hour in to things, she would take me to the elevator and let me know she was all done. She was always very tired after visits.

Maria's health has required numerous hospital stays over the years and I would be allowed to take Esther in to Maria at the hospital, too. Back before we had Gus, Esther and I would stay the night with Maria. Esther would lay on the couch in the hospital room and it was pretty comical the workers' reactions when they'd realize there was a dog in the room. People could knock on the door and come in and Esther wouldn't bark in the hospital. She somehow knew she wasn't supposed to bark there. The hospital workers would often get all the way to Maria's bedside before Esther would lift her head up and look at them. Some of them were rather startled but everyone agreed she was so well behaved!

Esther was also my great protector when we lived in Northside and I'd walk to pick up pizza on Friday nights. There was a possum that would come through our yard at dusk every night and Esther would go crazy barking like mad at the back door while we said, "Possum". So, if I was walking at night in Northside and didn't like the looks of someone who was nearby, I'd whisper in her ear, "Possum" and she'd act all ferocious. People would cross the street or just turn around and go the other direction.

Our other shepherd is our worry now. She and Esther were so close. I hope she doesn't mourn herself to death. 

I think Ruth, our beagle, and so many of our other pets will have been there to welcome Esther home. Can't believe half the dogs in this picture are now gone. 


For all the joy, comfort, and connections she has brought to us and others during her life, I just hate this final part where she no longer finds joy or comfort in anything despite our best efforts and where she leaves this life alone. We once had a pet psychic come to the house and she said that Esther likes her name but that she really loves the special name I have for her. She's always been my "punkin". Her sweet, expressive eyes are deep pumpkin colored and she has some pumpkin or reddish tint to the tan parts of her coat, especially up around her head. And before this past week where she's taken on a sort of "I'm sick" smell, her head at the base between her ears always smelled to me like maple syrup.

I don't know how I'll go on without my most faithful dog by my side and you'll always be my "first", sweet punkin, my heart dog forever.



If you knew Esther and have a memory to share, I'd be most grateful for you to leave it here in comments.





Saturday, July 25, 2015

Avoidance

Sorry it's been such a crazy long time with no posts. I really like to post good stuff! :)

Maria went through what I think was months of treatments for her kidney rejection that really took it out of her and after some illnesses this Spring it was determined it didn't really work and they can't do anything more for her rejection. We cancelled our dream trip to Alaska that was planned for early August. It's our 15th anniversary since exchanging vows coming up in August. Her nephrologist said no-go on the trip.

Now she's having to jump a million hoops to try to get qualified for another transplant. I'd say she's 9-24 months from another transplant and we're hunkering down. She starts hemodialysis on Tuesday. The hope is to get her on peritoneal dialysis but she has a surgery she needs soon and we thought it would be silly to put in the PD catheter, then remove it for the other surgery to happen, and then put it in again.

We wound up losing 4 of our kitties in about 9 months. That was sure something we didn't think about when we got so many of them so close together. The crazy thing is we still have a kitty left!

We did legally tie the knot and are thrilled to be legal in all 50 states!



We looked and saw we were spending more money on gas than groceries and decided it was time to move closer to everything so we worked hard to get our house sale-able, wound up selling it before it listed, and we moved to Sharonville on July 1. That puts us 30 minutes closer to Maria's hospital, to Gus's therapy in Covington, KY, and to most of our friends and family who jump in and help us out.



Since there are boxes everywhere we have been applying every avoidance technique in the book to keep from working on the house. It seems it's all we've been doing for months is getting ready for this move.

So, we took Gus to Cass Scenic Railroad State Park in WV and had a great time! Gus had a week off in between therapy sessions and by the time the next session ends Maria will be on dialysis so carpe diem!






Gus is truly doing so well in so many areas. He is able to eat just about anything now without choking on different consistencies. He can self feed nearly everything, which we know is HUGE. He can even drink from a regular cup with minimal spillage. We're still perfecting that skill. He is weight bearing really well and with support will move his legs. His army crawling has gotten better and in therapy they have him working on all 4's. He's been doing 5 days a week of Conductive Education from 9 AM to 2:30 PM. It's quite a challenging workout for him and we're so proud of how hard he works.

I had this idea that if we got a pool at just the right depth, it would help take some gravity off and he could get some therapy in that way and not even know it. He has taken to the pool like crazy and loves that he can "swim" by himself! The pool I got turned out to be about 5 inches more shallow than I was hoping but we're all still loving it.


Hope you are all enjoying your summer and keeping cool!