Just some fun photos I took while hanging out at the Mayo.
Monday, June 17, 2013
I can't believe I haven't blogged in 12 days! I think it's mostly because there isn't anything exciting to report and that's probably a good thing.
The biggest thing going on is continuing to tweak his meds. His prograf levels are still high but slowly coming down to a normal level. The last check was 14+ (therapeutic is 8-12). He had a day where he had the shakes. Apparently that's a common side effect especially when your levels are high. I had found some heart transplant facebook groups and there was a whole thread about this. Of course, in typical Carlos fashion, he didn't mention this until we were at a check up. He got the lecture about calling if anything came up. It's the 'if you even think about calling us, call us' line of thought.
He had one day, where he was dizzy every time he was standing up. Despite no unusually low blood pressures, they opted to stop his cardizem. There hasn't been a repeat since. Dizziness can also be a side effect of prograf. His blood pressure is high when he first gets up but then drops as the day goes on. He keeps a log of his daily weights, temps, a couple blood pressure checks. His weight has continued to drop everyday except for today. He has lost 12 pounds since discharge.
We are at Mayo today for weekly biopsy. He's having xrays, Labs and an echo done as well. His biopsies have all been a 0 so far and we hope to continue that. That indicates the amount of rejection of the new heart. A 0 is none and 3 is major rejection. A 1 is common and nothing gets done with that.
While we have felt very supported by family and friends, it came to my attention that there are those out there who think that the heart failure Carlos had was his fault and that he hasn't been getting good care. I guess they think he wasn't taking very good care of himself. Obviously they haven't read his story or maybe don't believe it. It makes me mad because this wasn't his fault. He didn't smoke, wasn't doing drugs, rarely drank alcohol. He may have been a little overweight but that's it. Never had high blood pressure. Never had high cholesterol. In fact, when he was first diagnosed, they couldn't find any reason why this happened. No coronary artery disease, nothing! The doctors have always felt it was genetic. They have isolated a gene associated with dilated cardiomyopathy and suspect it runs in Carlos' family. I wish people would mind their own business or talk to us directly instead of speculating based on second or third hand information. I also take this stuff personally because it implies I haven't taken very good care of him. We accept only positive voices in our lives, no negativity. Fortunately there are many who contribute that positivity :)
We have been receiving meals almost every night and want to thank everyone for your assistance! Those meals make a huge difference for me. Last week was a very hectic week and I really started to struggle by the weekend. A major meltdown occurred and I'm embarrassed by it. It was just a combination of stress, poor rest, and feeling overwhelmed. I'm anticipating a lighter week this week so expect things will be more manageable. Only two trips to Mayo this week! Yay!
The kids are handling everything well. It's amazing what we all can adjust to...
Thursday, June 6, 2013
Carlos had to go through his meds and place them in his pillbox for a week under the watchful eye of Stacy (one of the nurse coordinators) and myself. It's a 30 minute production! You can see the volume of bottles and amount of pills in the pictures. It's pretty amazing!
He's still getting IV antibiotics for 5 days for the cellulitis. The home health nurse came and showed me how to do it. I had to dredge up some old school skills. As a provider I don't do much with IVs anymore. It's like riding a bike though.
Carlos is doing well. He said he had a decent nights sleep for the most part. He woke up a couple times looking at the LVAD equipment. I figure it will take a couple nights to adjust to his own bed and schedule and no LVAD equipment.
I went in the pool today for the first time this year. The water is perfect at 83 degrees. The kids and I had fun playing volleyball. Can't wait until Carlos can join us!
Wednesday, June 5, 2013
Today is discharge day and we are so excited! It won't be until later today but we don't care :)
His prograf levels are therapeutic now after giving him extra prograf along with increasing his dose.
His potassium is high so they started a couple new meds yesterday to decrease it. He has to go home on a low potassium, diabetic, and heart healthy diet. I wonder if they have a website for that combo of restrictions! Fortunately the potassium and diabetic stuff is temporary. It's looking like no need to check blood sugars at home but don't know about that for sure yet.
We are going to the transplant support group shortly and then the transplant coordinator will come by to do the discharge teaching and organize meds. They supply him with a month worth of meds upon discharge and help him fill his pill box the first couple weeks.
Monday, June 3, 2013
He has not reached a therapeutic level for his prograf. The goal is 8-12 I believe and he's just into the 5's today. They keep upping the dose. They said that different people metabolize differently and this is also common in men and black people. They really need his levels to be stable before sending him home.
He had his first heart biopsy this morning. No big deal as it's not much different from getting a plain old right heart cath. Results from that tomorrow but they say rejection this early is very unlikely.
His arm looks much better today. The IV vancomycin is doing the trick plus he's on the bactrim. Using vanc for cellulitis is like killing an ant with a sledgehammer :p Definitely on the mend although his white blood cell count remains elevated. The blood cultures aren't growing anything though which is very good. That means no blood infection.
His potassium level is on the high end of normal as a side effect of a couple of his meds so they are watching that closely as well.
Last creatinine from yesterday was 1.0 :)
He's in pretty good spirits as are the rest of us. It's a lot easier to be positive than last time :) He is gonna get to shower tomorrow - that's pretty exciting because it was such a production with the LVAD and he hasn't showered since May 23rd! They tell us he can be in the pool at 8 weeks post-op. He will have to be super careful with sun exposure since the meds can increase his risk for skin cancer among other things.
Saturday, June 1, 2013
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.
Thursday, May 30, 2013
His creatinine is an amazing 0.7! Haven't seen that in years! I almost wonder if it was a lab error because it's a dramatic drop from 1.2 yesterday. But he is still needing a little lasix to give his kidneys a boost to pee :)
He has now started on all the transplant meds since they started Valcyte today. The meds are valcyte, diflucan, bactrim, cellcept, prograf, and prednisone. He pretty much knows the names and what they are for. Now he will start learning his doses, etc. There will be a good bit of education over the next few days.
They are estimating discharge for mid next week. We will hold out for early next week but not too stubborn about it. We want to be safe of course. But, me being a nurse, I worry about hospital infections.
He will have an echo tomorrow and I am excited to hear what his new ejection fraction is. He'll have his first heart biopsy on Monday. He will get that done every week for the first four weeks then every other week for awhile.
He starts inpatient cardiac rehab tomorrow :)
Someone from endocrinology came by but they are holding off on teaching him how to check his own blood sugars. He has had very little need for insulin. They are cutting the dose of prednisone down on Saturday so may not need any at all. They said they will wait until early next week to teach if it's necessary.
We had visits from Kim and from an LVADer that we had previously only talked to online. Pat is an amazing woman with an unbelievable story! We really enjoyed meeting her and chatting. Daja and Libby hung out at Jenny's house with her ten year old daughter. They enjoyed themselves :)
I am just so tired by the end of the day. I'm not sure but think it's a combination of my RA/fibro and the stress of everything going on. The meals have been helping hugely - as many of you know, I don't like to cook and it's just one less thing to deal with. Thanks everyone for your help!
Wednesday, May 29, 2013
He had a good day for the most part. He was up pretty early so was sleepy by this afternoon. He walked laps about 0530! He had PT and is getting up and down from the chair much smoother and easier. They shut off the dobutamine. They use it to keep the new heart pumping as strong as possible then wean off it. It also keeps the blood pressure up, which sometimes runs low secondary to the volume depletion. His hemoglobin is chilling at about 7.2 (normal is 13-17). Unfortunately, when he walked a second time, he experienced orthostatic hypotension, and wasn't feeling well. They opted to give him some albumin and left the dobutamine off. That seemed to help a bit.
He started prograf today. They pulled the remaining chest tubes. He has the PICC line and still has the pacing wires in but those haven't been used. That's it!
We saw the nutritition lady to review dietary precautions and restrictions for transplant patients. She also reviewed the diabetic diet which he will need to follow for awhile. He did get a dose of insulin today, which I think was the first time since they stopped the insulin drip. His sugar was 149.
His creatinine is 1.2 - wow! Haven't seen that number in years! He's still hanging onto fluid. The arm with the clot is so swollen :p
Heading to bed - I'm beat!
Tuesday, May 28, 2013
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!
Monday, May 27, 2013
Today has been a little more exciting in terms of progress. He walked three laps around the ICU pod. I posted a picture on Facebook of that. Libby video'd the whole event with her Nintendo 3DS. He's on solid food now although his appetite is still poor. I reminded him about the need for protein for healing and strength. They took out two of the four chest tubes. I took Libby out for that as it can be pretty painful. They removed the ladder catheter so now he's on his own to pee. I'm sure he'll pee everywhere now :-) He's off the insulin drip and has sliding scale insulin ordered if he needs it but his sugars have been good so far. The prednisone can cause elevated blood sugars since it is a steroid. Steroids are used to suppress the immune system so it doesn't attack the new heart. He will stay on prednisone for about 9 months. He's still on do but amine and some IV antibiotics. They want to give him one more dose of thymoglobulin today. They are considering more blood products as well. Tomorrow, he will move to 4w. He had a small blood clot in his arm but it is superficial and they don't seem too concerned.
I'm disappointed to be missing the Mercury game today. We had bought a Living Social deal to get box seats and photos on the court with the team afterwards. I gave my ticket to Joy so Kim was talking Daja and Joy. But Carlos, Libby, and I are gonna watch it here from his room :-)
Carlos and I had a moment yesterday. It involved Kleenex :-). I was telling Carlos that we would go to the transplant support group on Wednesday and maybe he could talk to some LVADers who were having a hard time. Unbeknownst to me, he was asked to come talk to an older couple last Tuesday, where the husband was being counseled on an LVAD for destination therapy. So Carlos talked to the couple about life with an LVAD and all it had done for him. Carlos felt that this was what God was waiting for him to do before he could receive his gift. It was an emotional moment for us.
Last night, my mother and I chatted over a glass of wine or three. Prior to transplant, I always rationalized transplantation. I felt like a person was going to die, whether we took that heart or not. People in the LVAD groups would talk about 'the gift' and it sounded so cliche and trite. That was me rationalizing the whole process again. It's a medical procedure, not something spiritual and mystical! But then it happens to you, and your perspective changes.
Before getting married, I always felt like a marriage certificate was just a piece of paper. We didn't need a piece of paper to tell us we were committed. But then you take the leap and get married. And it is different. I felt a stronger connection to Carlos. Being committed in the eyes of the law added a new layer of intimacy. It was no longer as easy to walk away if things didn't work out. Getting the gift of a new heart changed my perspective.
Even though a person can choose to be an organ donor and indicate their wishes to family and friends, this doesn't mean a family has to follow through. By law, the family can deny organ donation. And many families do because of grief, religious beliefs, etc. I really began to think about where this heart had come from and the family members of the person who died when the heart was removed. How can you ever thank someone for making that decision in the midst of their despair? I am now amazed and astounded at the generosity it takes to extend this lifesaving gift. It was very emotional last night, and even now as I type, to contemplate.
I want to thank the family who agreed to save our family while theirs may have been falling apart. Organ donation is much more than a medical procedure and triumph.
Saturday, May 25, 2013
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.
Friday, May 24, 2013
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!
Kim and I are sitting here chilling with Carlos. He got into his ICU room about 1050 this morning but we didn't get back here until about 1215, once they had him tucked in.
One of the transplant doctors came and talked to us after surgery. They had a tough time getting in and getting the old heart and LVAD out. There was a lot of scar tissue which, considering how he keloids on external scars, didn't surprise me. Because of the that, he had quite a bit of bleeding. He received a bunch of blood products. See picture below :-) They got the new heart in and it immediately started beating. In fact, its right where they want it and he's not requiring any pacing. They removed his BiV pacemaker as well.
He's already breathing spontaneously on the lowest vent settings. They want him to wake up a little more before extubating but sounds like it will be by tonight if not sooner. He has lots of other stuff hooked up as you can see in the picture...chest tubes, various lines, and the event. His kidneys got a little ticked off so creatinine went up to 1.9 from 1.6, but output is great and they aren't concerned.
I love watching his heart rate. Not a single PVC or other arrhythmia.....just very steady beat. Unfortunately, I did not get a picture of his old heart. They wouldn't let me have it in a jar either :p. The nurse said it was pretty amazing to look at the difference between the two hearts though. She said his old heart was big and floppy while the new was tight and smaller.
We don't know anything about the donor at this point. I think there will a lot of time later to think about that but I'm so incredibly thankful that despite someone else's suffering we can have this gift.
10:15. My mom arrives. We keep cracking jokes at Carlos' expense. But it keeps the mood light.
10:35. The nurse comes to take Carlos to pre-op. We follow like groupies then head to the waiting room to set up camp. We'll get to see him once more before he goes back.
12:00. The witching hour. We go back to sit at his bedside until it's time. Carlos is a little woozy from his visit with Dr Feelgood. He now has a Swan Ganz catheter in his neck and an arterial line. He's in good spirits so we continue with the inappropriate jokes.
12:40. They took him back and now the wait begins. We have heard anything from 6 to 12 hours.
Thursday, May 23, 2013
3:07pm. Carlos comes walking into the bedroom crying and hands me his cell phone. The girls follow behind asking what's going on. Two of the nurse transplant coordinators are on the phone and tell me they have a heart for Carlos. I accuse them of playing a joke. This really felt out of the blue for both of us. We really had resigned ourselves to a two year wait and it's not been a year and a half yet.
4:20. Arrive at Mayo to check in.
4:40 Someone finally checks him in.
4:55. We get to the room. And stuff starts getting done. Chest X-ray, bloodwork, etc.
7:55 The chaplain comes in to chat. That's disconcerting when you are waiting for open heart surgery. We pray holding hands. Then we burned some incense and chanted. Haha. We did pray though.
8:00 Kim's mother , who passed away 6-7 months ago, sent a message that all would be well and don't take the fentanyl (inside joke involving hallucinations and fentanyl).
8:45 I put the nurse through the third degree regarding surgery length of time, did the surgeons sleep today, etc.
8:50. Heidi arrives with supplies (Powerade, Xanax -lol, and food). We are laughing our asses off.
Latest info - he heads to preop at 1030 and surgery at 1130. More to come....
Sunday, March 3, 2013
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!
Monday, February 4, 2013
One year ago today, Carlos had open heart surgery and LVAD implant. When I look back at the past year, I am amazed at where we are now. It was a rough couple months at first. In the Facebook LVAD groups, we've seen LVADers who have passed away over the past year. This is always a sad thing to see but we take it as a reminder to live life and don't sweat the small stuff. We expect that this will be Carlos' year for transplant!
Tuesday, January 15, 2013
His INR has been a little wonky this past week or so. It shot up to 4 a few days ago so had to adjust his coumadin a bit. Mayo gets concerned about clots in the pump or GI bleeds when they start seeing this happen. He hasn't had any other symptoms to indicate a problem. After some adjustment, it's back to a normal range.