One Year Anniversary for Transplant

It's been a long time since I've posted....since June of 2013 I believe.  What's happened in that time?  Not much, which is a good thing.  Carlos has done remarkably well aside feom some weight gain issues.  He's been the picture of health since receiving his gift of life.  He's even weathered a cold and a stomach virus without any difficulty!

This week he has a full evaluation.  Today he had a ton of blood drawn....10 tubes.  And now he is waiting for his left heart cath.  I guess the plan is to evaluate his heart function, pulmonary function, etc.   He normally only has a right heart cath, which they do for biopsies to evaluate for rejection.  Tomorrow he has a bunch of other less invasive tests then follow up with the docs and nurses on Wednesday.  We anticipate a clean bill of health.

I remember when I used to get so nervous about the heart caths, I would ask a friend or family member to sit with me.  Seems so ho-hum now.  I told Carlos it's hard being the family member.  When he would have surgeries, he would get to sleep or get really good drugs.  They should consider drugging the family members too...at least provide an ativan lollipop or three!

I just got done giving him a hug before he goes back and gets the good drugs.  It's very cool that one of his nurses is the mother of one of my patients.  There's a little extra comfort in that :)

So now that it has been a year, I'm contemplating writing a letter to his donor family.  I would ask the kids if they want to write as well.  It's a very emotional thing and I worry that it will be difficult to adequately express my gratitude in a written format.  But I think it's worth trying.

Happy Birthday and Cellulitis

Well, I texted Carlos to wish him a happy birthday when I woke up this morning.  The response I got was less than chipper.  Of course, I ask wtf is up?  He decides to be coy and says I'll tell you when you get here.  My stomach churns the entire drive to Mayo.

Unfortunately the arm Carlos has been having trouble with (numbness, pain, stiffness) now has cellulitis from the wrist to the armpit.  They started him on Vancomycin.  We saw an orthopedic surgeon as well.  He came to look at the arm and evaluate the nerve pain and numbness issues.  He said at this time, we would continue with current treatment.  If that didn't seem to be resolving the cellulitis and/or if the pain and numbness seemed to be worsening, he would order an MRI and consider surgical options.  We are very much hoping that will not be necessary.  His white blood cell count shot up to 15 so they did collect blood cultures and urine.

The only other less than positive news is that he still has not reached a therapeutic level for the prograf.  So they gave him diltiazem which helps the prograf to reach higher levels :-)   They have weaned the prednisone again.  He's done to 15mg twice a day.  He was on 25 a couple days ago.

He went to the third floor for cardiac rehab and rode an exercise bike for ten minutes.  I didn't go but I hear there's all kinds of cool stuff down there, like Dance Dance Revolution, etc.  They have a kitchen for patients to practice in as part of their occupational therapy.  Pretty cool.

We were very excited to learn his new ejection fraction is 65%!  That had us in awe.  His previous EF was 10%.  Dramatic difference and we are so thankful.

Batcave

We are stuck in the bar cave another day.  His kidney function isn't fantastic yet despite the creatinine dropping to 1.3.  He hasn't seen a normal creatinine level in a long, long time.  They gave him some IV lasix as he has some noticeable swelling, and not just in the arm with the blood clot.  His weight has gone up despite the fact that he continues to have decreased appetite.  The lasix worked well and he started producing a lot more :-)  

The appetite is slowly increasing.  He's working hard to get the protein in, which helps with healing.  He walked four laps this morning and is ambulating to the restroom without assistance, unless you count someone pushing the IV pole and carrying the chest tube drainage collector thing. 

Blood sugars remain in great control.  He's getting a third dose of the thymoglobulin.  They want to continue to hold off on the prograf  until his kidneys perk up a little more.

They took out the arterial line so now he only has a PICC line and the chest tubes.  He's doing very well!

It Was a Good Day in Transplant Land

It was a good day.  Things are looking as they should.  When I walked in he was much more alert than yesterday.  I figured since he was a captive audience with no ability to grab the remote, I'd chatter away at him.  He responded with nods to questions and was just more engaged than your average unconscious patient :-)

He saw the PT and OT ladies.  They did some range of motion and he showed off.  They were asking if he had a cane or walker at home.  I looked at them like they were crazy.  I told them he had been going to the gym up until the day prior to The Call.  They were surprised.  I told them, we don't play around.  We've got a volleyball dynasty to grow!  We discussed any potential issues once he goes home...like stairs, etc.  Fortunately our bedroom is on the first floor so he won't have any issues there.

They did start the thymoglobulin but at a much slower rate.  He tolerated that fine.  The plan was too extubate if he passed RT's tests once the med was done.  It took a little longer to make it happen and in fact, I thought the ICU intensivist was going to not order it.  But when I got back into the room he was off the vent with just a little oxygen nasal cannula, smiling at me :-).  Oh happy days.  I can always handle just about anything as long as he can talk to me.  Him being heavily sedated and on a vent are just not things I tolerate well.  Anyway, I didn't have to lay the smack down so all is well...lol. 

So kidneys are improving with creatinine at 1.8  and good output.  Minimal drainage from the chest tubes.  They say those stay in an average of 3-5 days.  Still no need for the pacing wires and the dobutamine is being weaned down.  The epinephrine was shut off much earlier today and he has kept his blood pressure up.  He's been getting his anti-rejection and anti-infection meds by IV but tomorrow they will start transitioning to oral medication.  He will start to get up tomorrow and move around a bit as well.

Drama Mama

Carlos had a bit of drama.  They started him on a medication called thymoglobulin that he really didn't like.  I wrote this whole long post and this stupid program didn't save it.  So here's the short version.

He had some unpleasant side effects that are common so things were feeling a little intense.  Blood pressure dropped, there was projectile vomiting with something that looked like blood at first glance, etc.  It was exciting to say the least.  He was stable again when I left.  He was nauseous but communicating more, not liking the lying flat on his bed, and the tube in his throat.  They have him back on minimal vemt settings so hoping maybe he will be ready to be extubated this evening as originally planned.

Then I'm going home to sleep.  Its been a lot of hours since I last slept.  Its like working a busy weekend!

INR Drama

Remember when Carlos had INR drama?  It was too high and he had a GI bleed.  Now he decided to do the opposite...his INR is too low.  It's been dropping the last few weeks despite increases in his coumadin.  So tomorrow we had to Mayo.  If it's increasing then they will continue to monitor.  If it's not, hello hospital admit for heparin.

Keep your fingers crossed it looks better tomorrow.  Liberty's birthday is on Tuesday and we are celebrating tomorrow night.  Last year, Carlos was in the hospital for her birthday.  Here's hoping no admit!

Six Month Anniversary

I haven't posted in awhile as there hasn't been much in the way of exciting or interesting news.  Carlos has been doing well.  Life has gone about its business around the Jackson household. I can't believe ( knocking on wood) he hasn't been hospitalized in four months!  Today is his six month anniversary appointment.  It's been six months since the LVAD was placed on February 4th.  What a trip it has been. Just a few months ago, we both dreaded living a life with a machine in him. But now, it's just another part of life.

0800. 6 minute walk test.  We will be charged $267 for the pleasure of him walking up and down a hallway as many times as he can in a six minute period.

0820 Waiting for echocardiogram to show us how there's been no improvement in his heart and his ejection fraction remains 10%.

1000 Waiting for lab draw x 3.  Not sure what's up with that but he's scheduled for a lab draw every five minutes x three.  Any bets on what test it would be versus an error in scheduling?

1013 It was an error in how they scheduled..one poke and five tubes :-)   Now waiting for pacemaker check.  Things are moving along briskly for a change!  Despite Carlos' 14 trips to the restroom to pee off the 2 pounds he accumulated since yesterday. 

1035 Waiting to see the LVAD/transplant peeps then out the door hopefully.

1230. And all is good :-)

Quiet

Things have been quiet in LVAD life.  Carlos has been behaving, keeping himself out of the hospital.  He's doing well with cardiac rehab, getting stronger.

We are back to seeing the Mayo people every two weeks.  We go next week for his checkup.  We are hoping they will let him go to just once a month since he lives with an anal-retentive nurse that watches him like a hawk.  Keep you fingers crossed.

Last week, he had his 3 month anniversary testing.  One of the tests consisted of him seeeing how many times he could walk up and down the hall in six minutes.  I can't wait to see how much they charge for that!

My previous employer, who I get Cobra through, decided to change insurance companies.  We current;y have Aetna, and will be going to United Healthcare.  I almost had a heart attack because Mayo wasn't contracted with UHC....until recently - whew.  I was having visions of transfaerring care to UMC in Tucson :(  For only two months - because that's when Cobra coverage runs out.  My children and I will be testing the fates and going without insurance for 6 months so we can then get insured through the state's high risk insurance pool.  Carlos will have medicare kicking in the day after the cobra expires so thank god for that.

That's about it for today.

Daily Dressing Changes and Equipment - the missing version

What does daily dressing changes mean? It means pain in the ass. For both of us.

Once a day, he has to be interrupted from whatever he is doing to come have his dressing changed by me, when it is a good time for me to do it. Sounds kind of selfish of me doesn't it? Let me explain. When I'm off, then no big deal because we can do it whenever. But I hate waiting until the end of the day, because then I'm tired. Add a shower for him to that, and it's a major production. There is no such thing as a 'quick shower' anymore for Carlos. Then add the fact that he has always been a daily shower kind of guy as part of his bedtime routine. For him to shower, he must move all the equipment into the waterproof shower bag...

Here is the sanitarium cart that I searched far and wide for with Beth.  The goal was to find something pretty but not expensive, with wheels.  2 out of 3 isn't bad :p  The blips of color on the right back part of stuffed fake flowers.  I feel like those really add a great touch :)  The top part is used to set up the sterile dressing change.  You can see the long cord that connects him to the power module during the night, resting on top right now.  On the second shelf is the power module, which plugs into the wall.  It has a backup battery that's good for 30 minutes if there is a power outage.  A very loud alarm goes off in that case, and we switch him to batteries.  On the bottom shelf is the battery charger.  It can charge up to 4 of the 8 batteries at a time.



Here we have the bag he wears....his 'manpurse' as we call it.  He refuses to let us bling it - what a lame-ass.  It even has a luggage tag because if he were unconcious, we wouldn't want someone taking that off of him.  Inside the bag are the 2 batteries and the controller (which is like a small computer).  This bag with equipment weighs about 5 pounds.

What you see in this picture below is the dressing, with the driveline coming out of it, and going to the bag.  This is what attaches the pump inside his chest to the computer and batteries outside, in the bag.



Here, you see the driveline exit wound.  He has healed very well and remained infection free for the last 3+ months since having this placed.  The driveline is made with some sort of fancy material that allows the skin to actually grow onto it!

And here's the bag that must go everywhere with him.  Going to the store to pick up juice?  Yes, the bag goes too.  It contains backups of all his equipment (controller, batteries, manual, etc.).  Won't let me bling this either :p

And there you have it.  



Back to the Mayo

So Carlos has been doing well at home aside from minor issues.  They managed to get his INR therapeutic two lab draws in a row!  That was just in time to stop the coumadin in preparation for this admission.  He's had some fluid status issues, as well, so they have been playing around with his lasix dose also.

So this is the hospital admission to re- begins this evening.  check his colonoscopy.  They need to follow up on the area that was ischemic (poorly oxygenated area) and check out a possible polyp that was mentioned in the previous pathology report.  If everything is good, then he will be reactivated on the waiting list for transplant.

It sucks that they can't do this outpatient.  Such is the life of an LVAD patient - nothing is ever simple any more.  He has to have a heparin bridge, which is where he stops the coumadin a couple days prior, gets an IV (which they have attempted to start three times thus far without success - waiting now for the PICC nurse to come have a stab...haha), and gets heparin to keep him anticoagulated until the procedure is done.  Heparin is very short acting so this enables him to keep his blood thinned until the last possible moment.  If you recall, the risk of developing blood clots in his pump is high if not adequately anticoagulated.  Then those clots can break off and pinball around his body, potentially leaving him a drooling idiot.  While part of that equation is in effect already, I cannot handle drooling....haha, jk.

Carlos enjoyed a lovely gourmet liquid lunch.  His enthusiam was very overwhelming.  Not.  The Golytely prep begins this evening. You can imagine how excited he is for that. My chat with him about maintaining a positive attitude during this hospitalization quickly was forgotten by the second IV attempt. The PICC nurse just showed up to give it a try. Will update tomorrow.

Unexpected

We went to the Mayo yesterday for his appointment and ended up with an unexpected right heart cath.  Surprise!  Fortunately everything looked good other than they discovered Carlos is dehydrated.  Everyone was a bit surprised.  They dropped his Lasix way down to just 20mg a day. He and I were so happy to hear that all was well!!!!

Carlos will be re-hospitalized on April 11th to get ready for the colonoscopy on the 12th.  We are hoping he will be back home by the 15th.

Let's Catch Up

Since the last post, Carlos continues to have INR struggles.  Monday they re-checked his blood and it was 5!  They had him hold the coumadin the last couple nights and today it was 3.4.  So tomorrow he goes in for an appointment instead of Friday.  Eva, the coordinator, had a lot of questions about heart failure symptoms.  They are concerned that there could be worsening heart failure which I guess can cause erratic INRs.  So they moved his Friday appointment up to tomorrow.  He's worried that he could be hospitalized - I told him that more than likely they would need to just tweak his meds and no hospitalization would be necessary for that.  Then half an hour later, he starts coughing.  MF!!!  He needs to behave.  I'm not sure my sanity could take another hospitalization unless it's for transplant.

We found out that there are two things standing in the way of being re-activated on the list.
     1.  He needs a repeat colonoscopy - they are saying to do that mid-April.  Unfortunately, this requires a hospital stay of 3-4 days.  He can't have outpatient because of the whole coagulation issue.  They need him to have an INR less than 2 for the colonoscopy.  Then they will have to get it back up afterwards.
     2.  He has to walk a certain distance (1100 feet) on the treadmill in 6 minutes.

We ended up getting away this past weekend to Sierra Vista, AZ.  We made a trip to Tombstone on Saturday afternoon and it was great until Carlos became very fatigued and short of breath.  It was disappointing for me as I wanted to do a little more shopping.  But just as well - I spent too much money as it was :p  Sunday we stopped at Karchtner Caverns on the way home.  Carlos actually completed 2/3 of the tour of the caverns before needing to stop.  I somehow had a blond moment and forgot that it would be a 1/2 mile of up and down with something like 13% gradient.  WTH was I thinking!!!!

He started cardiac rehab today and did very well.  He did the treadmill, some sort of biometric bike, the reclining bike, and some upper body weights.  He'll be attending that program three times a week - I was very proud of him and felt a little teary-eyed at how far he has come!!!!

His INR is what???

Carlos had an appointment at Mayo today for a check-up.  His INR was 4.77!  Holy bleeding batman!  So he will hold the coumadin tonight and restart at half the dose tomorrow night with a recheck on the lab on Monday. His INR never did this before so I asked about it.  He had picked up about 5 pounds over the weekend that is slowly coming off and this may have caused liver congestion which is now improving....take a breath...which improves his liver's processing of medication.  But no bleeding from any orifices so it's all good.

They tweaked a couple other meds but nothing major.  His mean arterial pressure (MAP), which is all that is left of his blood pressure, is still trending to the higher side.  So they increased his carvedilol just a bit to try and get that down (it was 90).  That will help with his mildly tachy heart rate too.

We are opting not to go to Vegas this weekend due to financial constraints.  instead we are gonna do something local...not sure what yet, will figure it out later tonight.

Next appointment is Friday the 30th :)  Carlos starts cardiac rehab on Monday.  The only two things keeping him from being relisted are needs a follow-up colonoscopy, which will probably get scheduled in the first week or so of April, and being able to walk 1100 feet in 6 minutes in rehab.  I'm betting he can do that in the first session :D

Perky!

Today is a much better day then yesterday. We are both feeling much perkier. Yesterday, it was pity party central around here.

But my mom and I got the girls to the volleyball meeting - I haven't done that since a couple years ago. Carlos has always done it. It was nice to see lots of familiar faces for both teams. Our plan for Daja, and maybe Libby (depends on how she does this season), is to have her play up to the next age group (13-15) after this season then in November have her tryout for club ball. We think she's just that damn good :-) Not biased or anything, but other parents have come up to us and said 'wow, she's great. One of those parents played volleyball in college, so there!

Today, the pity party is over. Carlos and I went walking - to the cafeteria! That's probably the farthest he's gone to date. We sat and chit chatted by the window about volleyball. I signed carlos up as assistant coach with the understanding that health issues may interfere from time to time. Carlos used to be pretty active with girls' volleyball teams but the season or so, has been unable to do anything but watch. My mom will back him up and help out as needed also. Yesterday, while in 'poor me mode, he was unhappy that I had done that. But today, he has a much more positive take on it.

I lobbied for discharge tomorrow but unfortunately it was a no go. They want to get his INR therapeutic prior to discharge and watch him closely for gi bleeding . My logic is such that, he could go home and a week later start bleeding again. He can't stay here forever. Although there are people who have to live here until they get a transplant. But he's not one of them. So I had asked if he could go home and we would come back to the clinic everyday if need be. I tried. So his INR today was 1.5. They increased his coumadin to 10mg for tonight. So maybe by Tuesday, if we are lucky. It sucks cause the kids are on spring break so it really limits my ability to spend time with him. Tomorrow I'm bringing the kids up for a visit. I'll try to get some stuff done around the house otherwise.

Life on the Outside

So we came home on the 28th, which was Tuesday. I'm not sure what I am going to do not having the nurse writing the date up on the whiteboard for me everyday!

Prior to discharge, we did our two outings and both went well. For our independent one, we went and saw Ghost Rider 2 which was OK. The first one was better :p. We came back to the hospital and were discharged.

After arriving home, I discovered I was running a temp and was really struggling with my asthma and breathing. Figures, after hanging out in a hospital for 30 days, I picked up the flu! Ugh, miserable. I did have a flu shot this year but oh well. It happens. It wasn't nearly as bad as the episode 3 or so years ago when I was late getting my shot. So yesterday, was like a black hole. I never left the bed other than to do Carlos's dressing change. And of course, now we have to worry and watch if carlos gets it :( Anyway, I'm feeling better today although headachy and mildly feverish now. But I can't complain, at least I don't have a tube coming out of my abdomen.
I told Carlos today, that he purrs like the cats now :-)

We went back back to the mayo for a follow-up appointment. They say Carlos is continuing to do really well. His nutritional markers are within normal limits. This is one of the criteria they look at for reactivating him on the list. When we go in on Monday, for the next appointment, they will have one of the surgeons take a peek at him and see if they can go ahead and reactivate him and at what status.

Emotionally, things have been pretty good. He struggled a bit this morning but perked up as we got moving :-)

Tomorrow's adventure is grocery shopping. I told him he could ride one of those electronic carts and maybe I wouldn't take a picture and post it on Facebook. Maybe. Lol

Busy, Busy

Carlos has been doing well the last couple days.  He got a good night's sleep last night, probably the first in the 3+ weeks he's been here.

He's been working with PT and OT and doing well with that.  I'm hoping he will be strong enough to go to the transplant support group on Wednesday, even if he needs to ride some of the way in a wheelchair.

They just decreased the Primacor down to 0.1mcg.  Tomorrow, it sounds like they will shut it off.  Then no more IV pole!  Woohoo!  I've become jealous of the IV pole because it spends more time with Carlos than I do.  The LVAD controller gets to sleep with him....lucky it!  LOL

Carlos weighed in today at 88.5kg which, I will do the math for you, is 194.7 pounds!  He hasn't weighed anywhere near that in years.  However, some of that is the loss of muscle mass alongwith fluid.  He will get some back as he gets stronger.

His heart rate is settling back down, being where it was when he came in....about 105 beats per minute.No runs of Vtach or PVCs all the time.

I got checked off on the sterile dressing change today. It's like being in nursing school all over again! Although I wasn't nearly as nervous :-) We had another session on the LVAD. Tomorrow we will have that as well as someone who will come and do a session on the equipment with us...that will be a lot of hands on.

I went to Bath and Body today before coming. I wanted to get him some yummy smelling hand Sanitizer to keep on his tray and some hand lotion. I also got him a wallflower with some different scents to get his room smelling pretty :-) We are currently using the stress relief scent - eucalyptus spearmint.

Progress

My tablet is malfunctioning which fits the theme of my life....malfunctiong car (fixed), malfunctioning husband (in the process of being fixed). So I'm typing this on my cell phone so please forgive any errors and I don't think there will be any links.

Carlos came off the ventilator around dinner time last night. I was not there for that...had to go home and relieve the babysitter (thanks Beth). He was very happy apparently. He could talk though only for a few minutes at a time due to being so weak and exhausted. They are keeping him very busy with PT/OT. I wasn't feeling fabulous last night despite the good news. I was just feeling sad and pissed off at the world.

Today, was late coming here to the Batcave. Got some issues with the car resolved. I did speak with him on the phone this morning. He said he was ready to go. LOL! I said, you got some work to do first. He can't get out of the ICU until he gets down to one < inotropes(the primacor). Once he does that he will be transferred to the fourth floor, perhaps in the next 2-3 days. They just shut off the Nipride and they will switch the amiodarone to pill form. That just leaves the dobutamine to wean off. The nurse says he will probably be on the primacor for awhile. They will give him oral antihypertensives if need be to maintain his blood pressures.

He had a swallow study a bit ago and was given the ok to have a mechanical soft diet. Probably regular diet by tomorrow. When they asked him what he wanted and he asked for chicken noodle soup!

OT came by and worked him out. They started with range of motion exercises a couple days ago. Today I guess they had him sitting on the side of the bed! By tomorrow he will likely be standing up. The nurse said they are asking him to use his arms and hands as much as possible. Apparently he asked the therapist to do more so I'm very happy he remains very motivated.

X-ray did show a pleural effusion so they did a thoracentesis shortly before I got here. He feels like he can breathe better. They got out about 300mls, which isn't much. But his breathing has definitely slowed down.

He lost about 6 pounds overnight! Only another 12 to go.

So things are progressing faster now it seems!

Some Stuff

Carlos got to have his Swan-Ganz catheter pulled this afternoon.  He now has a PICC line and a regular IV.  He's still getting the same meds (amiodarone, primacor, dobutamine, and nipride being the 4 big ones).  After the nurse comes back, she is going to turn down the sedation and get him to wake up a bit.  They more than likely will extubate early tomorrow morning!

Bye Bye Epinephrine

They shut off the epinephrine drip that he came back from surgery with on Tuesday. He has been tolerating that ok. They turned the oxygen on the vent down to 60% which is a step in the right direction. It felt amazing to see the whites of his eyes several times today. Even if only for a couple minutes and then he was back out. And it didn't matter to me if he wasn't all there. I just checked on him though and they are having to increase his nipride because he's getting hypertensive. They have been titrating his lasix all day to keep him at about 100mls an hour for his output. Unfortunately that's been easier said than done. He's gained about 15 pounds since entering the hospital on January 30th. And it ain't because he's eating! Speaking of eating, he is tolerating more of his tube feeding. I got lots of reassurance today that while slow, his progress is going in the right direction. I absolutely hate that Carlos had so much control over all of this, and I'm just along for the ride!

Nothing Exciting

So far today has been 'quiet'.  Carlos has been in pretty good spirits so far today.  He takes pain medicine and becomes a chatty Cathy, then falls asleep :)  No news on a heart.  He signed the consent for the LVAD a bit ago.  It sounds like they are planning for surgery at 7am tomorrow.  They will take him directly to the OR to be prepped around 6am.  They said I could come sit with him up until then so I plan to be here at the batcave at 5am.  Kim is gonna deal with the kids in the morning for me :)

Carver, Carlos' dad, will be here tomorrow afternoon and his mom, Edith, is planning to arrive this weekend.  Carlos is really looking forward to seeing them.