Pseudo-Aneurysm

We went to the Vascular Lab at St. Luke's Eagle this morning.  Chris had an ultrasound on the painful cardiac catheter site in his groin, at Dr. Mallea's request.

It turns out that Chris has a pseudo-aneurysm at the site.  However, it's small and doesn't seem to need immediate treatment.   Here's some information from Wikipedia:

A pseudo-aneurysm is a collection of blood leaking completely out of an artery or vein, but confined next to the vessel by the surrounding tissue. This blood-filled cavity will eventually either thrombose (clot) enough to seal the leak or rupture out of the tougher tissue enclosing it and flow freely between layers of other tissues or into looser tissues. Pseudo-aneurysms can be caused by trauma that punctures the artery and are a known complication of percutaneous arterial procedures, such as arteriography, arterial grafting, or use of an artery for injection, such as by drug abusers unable to find a usable vein. Like true aneurysms, they may be felt as an abnormal pulsatile mass on palpation.

He will follow up with Dr. Mallea on Thursday the 5th of April.  However, he'll need to go to the ER if the site gets any more painful, red, larger, or hot.

Heart Surgery Coming in May

Chris spoke to nurse Jennifer and Dr. Gomez-Abraham {Dr. G} while I was out running errands this morning.   Here's what he relayed to me:

Dr. G recommends that Chris' ascending aorta be replaced, along with the repair of the valve.  He said he could do it in two weeks, but Chris felt that was too soon.  Dr. G is going to be in Europe at a conference for about 2 weeks, but he could do the surgery in the beginning of May when he returns.  Chris agreed to that.

Dr. G said that Chris can't do peritoneal dialysis (PD) during the heart surgery, so he'll have to do the hemodialysis during that time.  We'll work with Jennifer to transition to the blood dialysis when the time comes.

Chris will have to be in the intensive care unit in Salt Lake City for several days and in the hospital a total of 7 to 14 days while recovering from the surgery.   General recovery at home will take about five or six months, if the patient is in good health. Patients are advised not to do any heavy lifting for 6 months after surgery, to avoid damage to the sternum (the breast bone).

At the beginning of next week, Dr. G will call us again with more information.  At that time, I hope to get an exact surgery date so I can get everything coordinated with insurance, travel, etc.  I'll post an update as soon as we know anything further.

Not sure whether/when Chris could go back to the peritoneal dialysis (PD) after the heart surgery.  Need to find out about that.

Tomorrow at 9am is Chris' ultrasound on the catheter site from the angio.  It's still hurting.

Heart's Looking Good, Considering

We had a standard appointment with Jennifer today, and then a follow-up with Dr. Mallea to go over the results from Salt Lake City.

He said that Chris' heart, aside from the aorta and the valve, looks really good.  Heart function is about 70%.  Nothing seems to be blocked or calcified.   He said that it looks great for a positive outcome.

Chris is still experiencing pain from the catheter site in his groin area, so Dr. Mallea took a look at it.  He was concerned about the possibility of a hematoma there, so he's prescribing an ultrasound for Wednesday.

Still waiting to hear from Dr. Gomez-Abraham about his surgery recommendations.   We'll call Heidi, the transplant coordinator, tomorrow because she doesn't work on Mondays.

Brokenhearted

This was such a busy trip!   So many procedures and so much driving in under 40 hours!  Chris was a trooper... with tubes down his throat, needles everywhere, wires in his heart, etc.  We learned a lot, but not what we were hoping to hear.

After all the tests were done, we met with Dr. Gomez-Abraham.  He had been a kidney transplant surgeon in the past, and now works with heart & lung transplants.  This expertise is why the transplant team looked to him for his opinion.

He saw something in these tests that we hadn't anticipated.  We thought it would be a simple fix-this-valve-first or transplant-this-kidney-first.  We never thought there would be more to it than that.   But there is.

In addition to his leaky (and congenital bicuspid) aortic valve, Chris' aorta is enlarged and if left untreated will continue to get larger and cause heart failure.  This means that (at least at the University of Utah) the kidney transplant is off the table unless and until Chris has a repair or replacement of the aortic valve and ascending aorta.

Dr. Gomez-Abraham is going to consult with another experienced heart surgeon.  He will then let Chris know what type of repair(s)/replacement(s) they recommend.  Then Chris needs to decide how he wants to proceed.

Chris' favorite part of the trip was when Dr. Gomez-Abraham asked if his mother had any questions.  HIS MOTHER!?  SERIOUSLY!?  He thinks I'm 20+ years older than my greying-bearded husband?!   "Mortified" doesn't begin to describe how I felt.  I must need a makeover.

Right now, Chris is still recovering.  He's on dialysis to get the dyes from the TEE and the heart cath out of his system.  He's also got some pain from the cath site, as well as some significant movement restrictions for the next couple of days.  I've been helping out with the lifting.  (Those dialysis bags are heavy!)

Thanks for all the prayers & good wishes.  They really do help.  We'll need more of them when you get a chance.

The Cycler, Another Test & Some Snow

The cycler has arrived and Chris is using it each night.  It's pretty noisy, but he's getting used to it.  One thing that's driving him nuts is the "initial drain."  Chris doesn't have any dialysis fluid in him during the day, but the machine tries (hard!) to drain him before starting.  It won't let us bypass that function, either.

All of last week's lab results were good, so he didn't get EPO or iron shots.

Since the last post, another test has been added to Chris' schedule in SLC:  a cardiac catheter.  This concerns me because it involves injecting him with dye that I fear is harmful to his kidneys.  We checked with Dr. Mallea at the monthly meeting on Thursday, and he said that (a) it won't necessarily do more harm to his remaining kidney function since he's on dialysis and (b) we can't move forward without it so he needs to have it done.

Oh, and as we're prepping for the trip, check this out!  It'll be slushy and snowy and all sorts of fun.  Guess we'll leave extra early for our wee-hour morning trip.  (His first procedure is at noon on Monday, and it's a 5.5 hour drive in good weather/traffic -- according to Yahoo! maps: Distance: 358.34 miles — Time: 5:30 h)

At each of his procedures tomorrow & Tuesday, he'll be seeing different providers.  Each of them will ask him what medications he's taking.   I made up a spreadsheet in preparation for the trip and I will print out a handful of copies.  This comes in very handy and definitely beats trying to remember it all.   On each list, I'm also going to print a request for them to fax the results of the testing to Dr. Mallea.   We'll do a follow-up with him on Monday (Mar. 26th) to see how everything went.

I'll post here during the trip if there's any news.

More Heart Testing on the Horizon

Chris got his expected call from Heidi this morning, but it said that we'd have to wait until next week for a decision.   She got back to us this afternoon, earlier than expected, but not with a "yes" on the surgery.

Dr. Gomez-Abraham wants to see Chris in Salt Lake City before he makes a decision and wants to have three more sets of tests done:

• TEE (Transesophageal echocardiogram) where they stick an ultrasound tube down his throat to get better pictures of the heart
• CT scans of head, neck, and pelvis
• Carotid Artery Ultrasound

Heidi has gotten in touch with the doctor's office to get these tests scheduled.  They're coming up fast...  March 19th and 20th.

Also Coming Up:  Monday afternoon we'll get trained on the nighttime dialysis cycler and take it home to start using it.  Thursday is Chris' big monthly dialysis appointment.

No Cycler Today

We were planning a lengthy training appointment at DaVita today.   Chris was scheduled to get his nighttime dialysis cycler machine.   Unfortunately, Jennifer is sick today and DaVita called to cancel our appointment.

The folks at U of Utah are supposed to be discussing Chris' case with a heart specialist.  We're supposed to find out Friday if:

• they can go ahead with the kidney transplant
• the heart valve needs to be repaired or replaced before the kidney transplant
• the heart people need to see Chris in SLC again before they can decide

His next appointment with DaVita is scheduled for Thursday the 15th.   I don't think he has enough supplies to do his dialysis the regular way until then, so I'll have to go pick some up.  We'll have to let them know when we reschedule to cycler training.