Thursday, July 31, 2014

Frustrations in Maria's treatment

We took Maria to the hospital Tuesday for a follow up biopsy and what we thought was a quick overnight. Some people even mentioned we could probably talk the doc in to letting us go that night and not even spend the night there. How quickly things change!

The biopsy procedure itself seemed to go better than the last one. Maria didn't have much pain. She asked for medicine in advance so didn't suffer the usual nausea.

I left her Tuesday early evening with plans to come back for her the next day.

Wednesday morning she called and left me a pitiful voice message about how much pain she'd been in from cramping almost ever since I'd left the evening prior. And let me tell you - Maria is no wimp about pain but this had her curled in to the fetal position and completely miserable, which is how I found her late morning when I arrived. The doc had been there already and was saying maybe she had C-Dif and they were testing for that. Maria thought maybe her gastroparesis was rearing its ugly head. But as I started talking to the many nurses we have known so long and asking if this could be related at all to the biopsy, they were all of the opinion this could be a hematoma. Maria's assigned nurse just gave her some pills to treat the symptoms and Maria pretty much passed out after that. When I left her that afternoon for a doc appointment of my own, I didn't even wake her up knowing how often she'd be awakened anyway and that she needed rest from her awful night.

Being away from her the rest of the day yesterday my frustrations only grew. Why does modern medicine seem to just throw pills at symptoms and not treat root causes? Maria's main nephrologist who sees her at the hospital is in San Francisco for some huge international transplant convention. Why can't things get done in his absence? What is the problem with making decisions here and taking action? If the biopsy results are back what else are they waiting for to determine if there should be more treatments?

After a demanding work day, a frustrating day of Maria's medical stuff, and then I got an uber cranky little boy in full meltdown mode handed off to me around 6, I was just done for the day. We were in jammies and in bed by 6:30 PM last night and even then it was another 90 minutes of fussing and screaming before we both got to sleep.

But, today's a new day! We were up early and after taking care of some work stuff, I thought I had an early enough start to get to the hospital and see the doctor but I missed him. There was at least some news and a little progress.

The biopsy shows improvement over the one from a little more than 2 weeks prior but it still shows cellular rejection and her antibodies are still too high, though improved. They do want to do more treatments and they actually started more thymo last night. What I didn't fully realize and learned today is that the plasmapheresis takes the thymo out of her blood so they have to be careful about when they do that. And, the antibodies can have more opportunity to attack the kidney as a result of the thymo. So, being in both forms of rejection is really pretty tough given that the therapies for each combat each other. Ugh!

This afternoon the doctor called her and here's the plan for now: No more thymo after last night. Plasmapheresis tonight and Monday, which pairs with the cancer drugs, too. She has a clinic (kidney transplant clinic) visit for Monday. I just pray that her normal Doc is back from CA and sees her on Monday to make sure all of these decisions are solid!

So far they aren't talking about another biopsy, though I would think another is in her future...?

We appreciate your continued prayers, thoughts, and support!

And here's the picture worth a thousand words as to what the stress of a sick mama and the hard work of going to Conductive Ed 5 days a week has on a 3 year old!

Monday, July 28, 2014

Another biopsy tomorrow

Time will tell its tale after we get results from a biopsy that is being done Tuesday morning. We should know about the cellular rejection tomorrow by end of day and about how the kidney is holding up with the high antibodies by end of day Wed.

Maria had another treatment today - plasmapheresis, solumedrol, and the chemo drug. It sure does take it out of her. And her poor arm where her shunt is being accessed is very swollen and bruised. She's not allowed to lift over 5 lbs with that arm. You don't realize all the things you lift in a day over 5 lbs with your dominant arm until you aren't supposed to do it! Add having a disabled toddler in the house and well, you get the idea.

She has been an absolute champ considering the high doses of steroids she's been getting! I would be crawling the walls and taking everyone's heads off!

We leave early in the morning for the hospital. I'll post results as they come in.

Thank you as always for your continued love, prayers, and support! It surely does take a village!

Tuesday, July 22, 2014

Maria giving her own update - that's a good sign!

I am sorry it has taken so long to update you all on my health. The last week and a half have brought some major changes in my life. I am in rejection of my transplanted kidney but it seems as though it may be able to be saved. While in the hospital I received a series of medication of thymoglobulin and steroids to help stop the rejection. Both of which had some pretty nasty side-effects. now in addition to those treatments I am receiving apheresis dialysis to rid my body of the antibodies built up against my kidney and two more chemo drugs to keep my body from making the antibodies again. I have had two of these treatments and will have another two before having another kidney biopsy next Tuesday. Hopefully, that biopsy will come back and the rejection will have stopped. If not, I will get four more apheresis and chemo treatments. I am pretty wiped out and sick to my stomach on treatment days but feel better by the next morning. I am encouraged that everything is working the way it should because my numbers are coming down closer to normal. I am not there yet but I have a lot of hope. I can not tell you how much your prayers and comments have helped. I am so grateful for all of you in my life. Please keep praying that my kidney can be saved and things can return to normal. Thank you again.

Monday, July 14, 2014

Turning a corner?

Today's news was all much more positive!

The doctor who saw her today thought that the treatment is already showing signs of working and stopping the rejection! I try not to think about the damage the kidney has suffered in the meantime and the years it takes off its life and just be grateful for every day it does its job.

Because my Maria follows her own path even with her illnesses, a whole team got together today and reviewed her case. They have determined they still want to do plasmapheresis. I'm not sure when that will get scheduled - perhaps Thurs or Fri. Her central line went in today and they have decided she can get a porta cath when that comes out. That's a more permanent access so they won't have to keep doing central lines.

She is getting her thymo treatment tonight and she hasn't answered the phone so I'm thinking they had to knock her out again.

No one is speaking the d word yet - discharge. It will very likely not happen until Fri or Sat.

Meanwhile, this boy wants to be back in Mama's arms! He started back at conductive education today.

Sunday, July 13, 2014

Day 3 Kidney Rejection Saga

Today wound up being a good day.

She didn't need the thymoglobulin today because her t cell levels were still showing enough suppression. I've been reading up a bit on how this all works and basically, "thymoglobulin effects large reductions (through cell lysis) in the number of circulating T-lymphocytes, hence preventing (or at least delaying) the cellular rejection of transplanted organs."

They believe she will certainly need it tomorrow but from what I've gathered it's a bit of a tightrope to give enough but not too much of the thymoglobulin.

We enjoyed dinner together from the food I brought her from Aunt Missy’s birthday party. Happy Birthday again, Missy!

Tomorrow Maria will have some sort of line put in. There has been an ongoing debate every time she is hospitalized about whether or not they should put in more “permanent” access or if they should keep having to put in central lines each time she needs stuff. I think the plan is for a central line at this point. She’s been through so much that her veins don’t keep IV’s for long so the central line makes things easier for IV meds, blood draws, etc.

We’re just tucking in for a big week here as Gus heads back to Conductive Ed and I have a work trip to Nashville this week. 

Here's Gus sitting on my office chair "helping" me with my work! Before conductive ed he would not have been able to sit on a chair like this that swivels, where his feet don't touch the floor, and he doesn't have armrests to grab. He was in the process of going from leaning back to upright in this picture!

Saturday, July 12, 2014

Day 2 of Rejection Saga

Thank you so much for the incredible outpouring of love and support! It's knowing you are all in our corner that keeps us going!

Maria had a horrible night but all in all there are glimmers of hope today.

The thymoglobulin has violently horrid and immediate side effects. She had her first round last night. After a series of weaker medications which they attempted to ease things for Maria over the course of about 5 hours, they finally gave her dilaudid and she just passed out. When she came to this morning and then got a little more rest, she had a pretty good day.

They had scheduled her to go ahead and start the plasmapheresis today but they called it off and have decided to hold on that until Monday and evaluate again whether to include it.

Her biopsy results today were not showing a lot of damage from the antibodies. So, there is still concern there since the blood results for the antibodies are so high but with the kidney not showing much distress from the antibodies. they aren't sure the plasmapheresis is necessary.

The plan for now is to monitor what the thymoglobulin does and react accordingly. As mentioned yesterday, that is administered IV only. She will get 5 treatments of that every other day. So, she had a good day today because she didn't have to do that. We're buckling in for tomorrow.

As of this moment we are predicting her being hospitalized until at least Tuesday and it's possible they'd keep her until Saturday next week to do all of the thymoglobulin treatments inpatient given her awful reaction. Time will tell.

Through the generous help of family and friends, I think we just may have this coming week covered for Gus. If Maria gets released and has to be transported for appointments, we're still short there, but there are so many unknowns it's hard to plan for that.

Her normal cocktail of anti-rejection meds is also being adjusted with the hopes that this rejection can be halted and she can go on from here.

Aunt Missy says Maria got her best medicine today out of her visit from Gus. We took his walker/gait trainer and Gus made Mama march through the halls twice to get some exercise. In the patient waiting area was a table he could get right up to so he happily played trains there for quite a while. It was good for all of us to just sit and do something so normal.

At some point, probably in about 2 weeks, there will be another biopsy to evaluate progress.

I snapped this picture yesterday because this sight took my breath away then and it still chokes me up now. This beautiful woman reaches that hand out straight from her heart. It's the hand I nervously yearned to touch 16 years ago, flush with new love; the hand I held as we exchanged vows 14 years ago and I slid that ring on to her finger; the hand that has extended comfort to so many of our pets as we've had to say goodbye to them over the years; the hand that touched my belly in wonder with the knowledge a new life was happening there; the hand that was the first one our newborn son gripped though his premature hand didn't even wrap all the way around one finger; the hand that had to hold his as he slept in his bassinet every minute of every night for the first year. Here is that hand reaching towards me as she lies vulnerable and worried for what's to come.

Three squeezes, baby, and you better keep squeezing back!

Friday, July 11, 2014

Rejecting kidney

The news for Maria here isn’t good. Bottom line – she’s in rejection.

Let’s talk about types of rejection first. There is cellular rejection and antibody rejection. Cellular rejection is somewhat common and is the type that Maria had a couple times within the first 6 mos of her transplant back in 2003. The other type is antibody rejection and that’s the big bad boy who wipes out transplanted kidneys, though both types can end a successful transplant.

Based on the biopsy results, Maria is definitely in a cellular rejection. This one they are thinking is at least type 2A, whereas her previous rejections were 1A. The doctor says that is quite a bit more serious.

Possible double whammy alert – There is a “smoking gun” that this could also be antibody rejection. When they tested her antibodies in 2012 they were fine and this time around they are sky high. The biopsy won’t tell its tale on antibody rejection until tomorrow.

For now, they are treating the cellular rejection. That involves IV meds, thymoglobulin, which can happen inpatient and/or outpatient.  They pair this with solu-medrol.

If there is also antibody rejection, then the treatment is more involved. They have to do plasmapheresis to do something with the antibodies. It works similarly to dialysis. Maria has a working shunt but has never had it accessed for dialysis so there is some anxiety for that.

Whether or not the kidney can be saved, the probability of saving it, and the exact treatments are all up in the air for now and I’ll give more details as they unfold.

What we do know is that Maria is hospitalized through Monday at a minimum. Even if she gets out of the hospital Monday or soon thereafter, she will have a slew of outpatient appointments and treatments for a minimum of weeks.

This throws us back to that vulnerable place where we can’t do it all alone. I don’t know exactly what we need or when but I can tell you we will need plenty!

Gus starts back with conductive ed on Monday. That’s getting him to Covington 5 days a week from 9 AM to 2:30 and back home again.

I have no idea what shape Maria will be in to drive or not but she will need to make frequent trips to Christ Hospital for her outpatient stuff. We went down to 1 vehicle to afford the wheelchair conversion so if someone else takes Gus and our van to school, Maria doesn’t have transportation even if she can drive.

Problems for another day….

We appreciate the blessing of you all, our family and friends, more than we can say! Please keep praying!