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.

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

Life is Nice

Carlos was discharged on Monday, rather unexpectedly. We were told over the weekend that it would probably be later in the week as they wanted to watch him closely as they were increasing his coumadin. His INR on Monday was 1.69. We were both very ecstatic :-)

Yesterday, was very nice - we went grocery shopping and Carlos rode in one of those electronic shopping cart thingies. He even let me take a picture! And post on Facebook! So I did :-) Things went well. He did some walking from and to the car, without difficulty.

We went in for a check-up today and all his numbers look good. His INR was 2.2. So he's therapeutic! He was given the go ahead for showering - thank god. Imagine going 6 weeks without showering. :p. It sounds like we are still on track for me to go back to work April 1st. They feel like despite the complication he continues to do well.

We are hoping to sneak away for a weekend in Vegas before I head back to work but won't know about that for sure until the day before we want to go. Carlos should be starting rehab this week....waiting to hear from Banner Desert to schedule the first appointment. They will have him doing lots of cardio as well as weightlifting. Nutritionally, he's already where he needs to be. I guess he has to pass a 6 minute walk test in rehab for stamina then they will re-activate him on the list.

Took Carlos and Chris for haircuts or 'lowboy' fade. Whatever. They both look handsome :-)

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.

Is There a Light at the End of the Tunnel

I haven't blogged in 4 days!  How time flys!

Carlos continues to do better.  The primacor was shut off on the 21st and he has done fine without it.  It was so nice to get rid of the IV pole.  Only the LVAD stuff left to deal with.  But then they came in yesterday morning with a Heparin drip.  Heparin thins the blood which is very important in LVAD patients.  The body recognizes the foreign object in his body and tries to clot.  Those clots can then break off and travel to other places in his body that can cause major problems, such as stroke or pulmonary embolism.  So he will go home on coumadin, persantine, and a regular strength dose of aspirin.  They monitor his INR with the goal of keeping it between 2 and 3.  He was therapuetic before but then it started dropping.  He has always had a difficult time getting therapuetic.  So having the heparin restarted ruined our plans for our first outing this morning.

We were supposed to do our first outing. This outing we do with one of the VAD coordinators and the perfusionist. We would go to our home to look at where we plan to set up the equipment and check for any safety issues. I even got my bedroom all cleaned up in anticipation of this visit. I didn't want anyone to think I was a hoarder ( those who have seen our bedroom will understand this statement :-). Beth was an amazing friend because she came over Wednesday night and helped. She then, unbeknownst to me, finished the cleaning Friday when she came over to watch the kids for awhile. Thank you Beth!!! After the home visit, we would then go to Libby's award ceremony at the school pep rally. She was nominated for the monthly Character Counts award. There are 6 pillars that the kids are always supposed to be practicing, like responsibility for example. It's a big deal because the winner gets a new bike as well! We knew she would be getting the award but she had no idea! Carver and my mom attended. We were able to video chat and catch most of the award. We had some connectivity issues. We are very proud of Libby. Carlos was a bit emotional and I just reminded him this is why were are doing this, so he will be around in the future for these things.

We will do that first outing on Monday now, assuming his INR cooperates. Then we do the second outing on Tuesday. That one is just us and we have to be gone from the hospital for at least 2 hours. Then we come back to the Mayo and do paperwork then he is discharged and we go home :-)

Carlos has lost another 8 pounds of fluid since I last blogged. He hasn't weighed this little in many years (186). We passed our test on the VAD stuff so are now free to move about the hospital at our leisure. We get our equipment today as well. I have a month's supply of dressing change stuff at a lovely price of $226. Ugh. Insurance doesn't pay for it. That's about it for today :-)

Post Mayo Clinic Appointment

Carlos had a doctor's appointment at the Mayo Clinic today.  I have been concerned because Carlos really seems to have declined again in the last couple weeks. I was definitely looking forward to speaking with the doctor and addressing these concerns.  He's been increasingly lethargic, coughing more, and complaining of nausea more often.  All this despite his weight remaining fairly steady.  He had picked up about 7 pounds in a 2-3 day span but has gotten half of it back off.  Yet the symptoms continue.  The cough is horrible.  It sounds like he is gonna bring up a lung any minute.  I don't think Carlos realizes he does this but he is always hanging his head....like he is too tired to keep his head up?  He's almost always cold, which is understandable with his poor circulation.

The doctor basically described Carlos' condition like a traffic light.  He's in the yellow right now and we need to be very cautious and watch him closely.  So the doc dropped his Coreg again, down to 6.25 twice a day in the hopes that maybe his blood pressure will increase and perhaps help with his symptoms.  His blood pressure (after morning meds) was 84/62.  That's typical for him.  He's been taking Lasix twice a day since picking up that 7 pounds so the doc wants him to continue that.  Otherwise, no other changes.  If he is the same or worse by his follow-up appointment next week then they will schedule him for a right-sided heart cath with possible admission for IV medications.  Carlos having a very common blood type and being a bigger man, he will likely have to wait quite awhile for a heart.

It's frustrating for both of us to have to live like this.  I frequently feel like a single parent.  He is frustrated by the lack of energy to do anything.  I think we are both looking forward to a heart transplant.  It took time for us to adjust to the enormity of change that entails but we also have realized how likely it is, that he will feel better and become more active.  Now that we are starting to see just how bad this may get - we are anxious to get on the road to recovery.  I'm still a little anxious about the thought of transplant - it's such a major ordeal in itself!

I worry about him getting too weak to tolerate a transplant, which would get him off the list :(  But that is the point of things like mechanical devices and IV meds.  Those things can keep him going longer.

He may finally be therapuetic on his coumadin now - his INR was 2.5 yesterday (with the goal being 2-3).  They will re-check it again next week but it looks like 7.5mg a day will do him well.

So I'm the reason Carlos has managed to stay out of the hospital.  The doc said that if he had been anyone else he would already be admitted but because he is married to me (someone with some medical knowledge and also very observant) he was ok with trying to keep him out of the hospital.  But we are to call if the slightest thing happens....starts getting shortness of breath at rest, stops peeing or peeing very little, etc.  The doc says these are things that would change the picture very quickly - he would be brought in and admitted for heart vath.  So Carlos (and he will read this) had better be pretty damned thankful :D

He's Therapuetic!

Carlos' INR level is now therapuetic!  Woohoo....yeah, ok, whatever.  Not exciting I know but good that we got him on the right dose of coumadin now.

January 8th is coming fast....3 days until he is active on the transplant list.  I'm feeling very nervous and apprehensive.  Change is always a difficult process.  I find that the older I get the less I like to deal with change.

Coumadin Levels - Up and Up

Still going up on the coumadin dosing....I did tell them he tends to need a lot.  He's taking 7.5mg now every day.

Coumadin Clinic

Carlos started taking Coumadin at Dr Steidley's recommendation a couple weeks ago.  They have really changed how they manage coumadin.  No more lab draws....just a finger stick to check his INR levels.  They are working on getting him into a therapeutic level, which is 2-3.  When Carlos was on coumadin the first couple years after he was diagnosed, he took large amounts of the medicine to get therapeutic.  I can remember them asking him at every visit if he was taking his medicine every day.  I think he ended up on a stable dosing of 7.5mg alternating with 10mg.

As of today he has an INR of 1.5 so they increased his dose to 5mg alternating with 7.5mg.  He gets it rechecked on the 30th.