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- 3/17/99: Mary is in MUCH better spirits today. Even though they can't go to the Providence clinic in Seattle, she's been getting some very good information from them on the hospital in Houston. (And the woman at Providence who coordinates this stuff is a sister!)
Mary & Bob feel very confident about sending Rob to Houston and the 2nd choice would be UCLA. UCLA has performed 3 bloodless heart transplants on witnesses and the clinic in Houston has done even more.
Dr. Coolie (?) is still a surgeon at the Houston hospital, but he no longer performs transplants. However, his partner does and has an excellent reputation. Now they'll just wait for their Anchorage doctor to return to the office on Monday and let him know they want to work making the arrangements for Houston.
- 3/24/99: Things are back on track again. The Teel's now know that they'll be going to Houston, Texas for sure. The doctor's office in Anchorage has already sent Rob's records to Texas.
The doctors there will review the tests Rob has already had done in Anchorage and confirm if he is in need of a new heart or not. (I suppose that opens the slight possibility that they could disagree with the Anchorage doctor.) Once they agree Rob needs the transplant, then an appt. will be set up.
This initial trip to Houston is strictly for qualifying Rob for the transplant (The 4 step review outlined in the main narrative.) Then after his qualifying tests are done, his name will go on a list...and the waiting begins (or continues I should say).
They're anxious to get out of town! It's been 3 weeks since the doctor initially told them to get down to Seattle, so needless to say they don't want to waste any more time. Mary's had to start being more aggressive with the hospitals and insurance company and it's paid off. It wasn't working to wait around for the nursing staff to get phone calls made, so Mary started doing them herself and it's been better.
- 3/31/99: Mary found out Monday that the doctor in Houston feels Rob's heart is a larger than normal heart, which means it will be very difficult to find a match, which equates into possibly a 2 year wait before he could get one.....and he doesn't think Rob will live that long.
An option described to Mary was installing a pump that would help him along until a heart could be found, but the down side of it is that the surgery to remove the pump and put in the new heart is an extremely high blood loss operation and the doctor doesn't think they'll find anyone that would be willing to do it without blood.
However, Rob's doctor in Anchorage doesn't agree with the Houston doctor's opinion and they need to talk.
At this point we don't know what the outcome of their discussion has been (or if they've even been able to talk yet.)
- 4/8/99: Bro. Irvine (on the
 committee in Anchorage) was able to make some phone calls that eventually ended up getting the Hospital Liaison Committee in New York involved with Rob's case.
They contacted two elders who are on the HLC in Los Angeles and they are going to meet with a doctor at the Univ. of Southern Calif. about Rob.
She had to Fed Ex all his medical records and letters of recommendation on Rob's behalf to USC.
It's one of the hardest things to do to write a letter on behalf of a loved one, basically making the pitch as to why this person should have this surgery! But since Rob has some disabilities, it's critical that they have letters of support showing that despite the disabilities he has, that he's still a functioning and productive person in society.
Dr.Vaugh Starnes at USC has done heart transplants before, but never bloodless, but he's VERY anxious to.
The medical team at UCLA, who has done 3 bloodless transplant surgeries is willing to go over to USC and do the surgery with Dr. Starnes.
This is really the first positive news Mary & Bob have had in awhile.
- 4/15/99: The doctors at USC met yesterday & today regarding Rob's case.
Mary spoke with the business office and provided them with more insurance information and answered a few questions regarding Rob's disabilities.
Questions such as,- Does he work? and
- Does he take his own medication?
She was informed that there's a waiting list just to be evaluated, and that wait could be until June, unless the doctors decide otherwise once their done with their review of his records.
- 4/29/99: Rob has an evaluation appointment at the University of Southern California on May 12, 1999.
- 4/13/99: Mary called me at 3pm today and said that the doctor at USC, Dr. Starnes, wants to keep Rob there and put him at the top of the transplant list. They're waiting for concurrence from Rob's doctor in Anchorage.
As long as he agrees, then they'll be staying in the LA area for a few weeks.
She didn't have a lot of details, but I'm assuming since they want him to stay....that the results of the echogram (the test to rate how bad off his heart is) must have shown he's in dire need.
The fact that he's already there in town was also a factor to see if they can get him one right away.
ASSUMING the doctor in Anchorage agrees with the plan, then when Rob gets on the list they're anticipating it being anywhere from a few days to a few weeks before he might be able to get a heart.
I never stopped to think about it before, but I guess if you have weak organs, flying on an airplane can be difficult, I suppose the pressure or something.
It sounded like they didn't want him flying any more than necessary.
They haven't gotten the results back yet to know what his blood type is.
That will be a major determining factor in how soon they expect he'll get a heart.
Apparently a person with a blood type of "O" can only get an organ from another "O" person, which I guess O's are rare to come by.
But if you have an AB blood type you can accept an organ from anyone.
(It all gets SO technical.) Mary will no doubt get that info tomorrow.
- 5/15/99: I spoke with Mary Saturday morning and things had really sped up since I spoke with her last.
They had already admitted Rob into the hospital on Friday, in preparation for receiving a heart. If he's going to be ready for the next one that comes available they've got to already have him in the hospital and ready to go!
He's in the ICU (intensive care unit) simply because that's where they put transplant patients, not because his case has gotten that bad. He'll be hooked up to monitors and he'll be able to get out of his bed to look out the window, but that's about it.
He won't be able to walk around the hospital or anything like that, at least not on a regular basis. He could be waiting just a couple of days or it could be a couple of months, nobody knows.
Mary & Bob can only stay till the end of this coming week and then they'll need to get back to their jobs. However, if a heart becomes available, they'll obviously stay.
It's amazing how routine this surgery is these days.
Mary said the surgery itself only takes 4 hours and you're only in the hospital for 1-2 weeks afterwards.
Granted, there are a TON of check ups afterwards, but he'll only have to stay in the area of the hospital for 1 month after the surgery (I think I got that right...).
The medication is intense once he's had the transplant and that will be a lifelong routine.
I'll see if I can get a mailing address for Rob at USC.
I know it would make him very happy to receive any kind of communication.
I don't know yet what's acceptable in the ICU, (I've heard you can't have flowers in the ICU, but I'll check on it.) In the mean time you can mail any cards to me & I'll forward them to him.
If/when Mary & Bob have to fly back to Fairbanks without Robert, I know that will be a VERY difficult thing for them, so please keep them in your prayers and thoughts.
Everyone has been so great in continuing to show their love and support.
Thank you. (Oh, one more thing....they found out Rob's heart is an A positive, so he can take a heart from another A or an O, so he's got some options.)
- 5/17/99: ROBERT IS HAVING SURGERY RIGHT NOW!!! Things sure seem to be moving fast with all of this.
Rob is in surgery as I'm typing this.
He went into surgery at 6:15 pm Calif. time tonight.
Bro. Henderson, who is the coordinator at USC for their bloodless program actually went into the surgery room with Rob.
Rob said, "Bro. Henderson will make sure they don't give me blood while I'm in there."
I talked with Rob twice today before he went into surgery.
He'd been prepped and waiting for surgery since noon.
They were just waiting on the final word that the donated heart was a healthy one and would fit him.
They got that word around 6pm and he was in surgery by 6:15.
I'm flying out tonight at 11:30 to be there and my mom (Mary's sister) is arriving Wednesday.
Update as of 10pm. Robert is out of surgery and it went great. It only took 3.5 hours, shorter than expected.
His blood levels and vitals were good throughout the surgery.
- 5/23/99: I made it back from LA Friday night. I stayed an extra day and I'm glad I did.
The day I left they had put Rob in a regular room on the cardiac floor and he was also released to walk around the hospital and even go outside.
He's no longer hooked up to any tubes (other than the standard IV). He carries around a portable heart monitor that looks like the walkman we're used to seeing Rob carry around, so he looks like he's right at home! They refer to Rob as the "miracle" since everything happened so quickly and smoothly for him.
It really is amazing how well it all went.
Rob is scheduled to leave the hospital Monday the 24th. Bob is flying home Tuesday (on standby).
Rob will need to stay for at least 1 month so they can do their weekly biopsy of his heart tissue to make sure it's not rejecting. But it sounds like since he's continuing to do so well that he may not need to stay any longer than that, we'll just have to wait and see.
The congregation in Alhambra (the community where they're at) has been wonderful. One recently divorced sister has been insisting that Mary & Rob come stay with her once he's out of the hospital.
But it looks like Medicaid will pay for housing for them as long as it's coordinated through the people at the hospital. At this point Mary isn't 100% sure of what they'll do, but at least she knows she has a few options.
They'll be at the hotel in Alhambra through Tuesday night. Rob LOVES it when people call him and ask about him.
It's a good thing Rob got his new heart when he did.....he's got a crush on one of the staff at the hospital and I don't know if his old heart could have taken it! : )
Mary's been teasing him that he should have gotten a hormone transplant instead of the heart!!
USC sponsored a huge seminar on transplant surgery that was open to the public and other doctors yesterday. Mary, Bob & Mom were able to attend and Mom said they were able to give a witness.
Dr. Starnes, Rob's surgeon, had an hour speech during the seminar and at the end of his part he had a question and answer session. Bloodless surgery never came up during his speech, so Mom was hounding Mary to come up with something to ask him.
Mom couldn't remember how Mary worded her question, but in his reply he said that it was her organization that was really pushing the doctors to do this kind of surgery and then he mentioned Jehovah's Witnesses from the platform. So Mom was thrilled he'd used Jehovah's name from the platform in front of the very large crowd.
- 6/3/99: Today was Rob's first biopsy of his heart and it showed no signs of rejection! He has a small amount of fluid that's built up around his heart, but it's nothing to be alarmed about and is not unusual.
They've changed his medications, deleted some and added others and have either changed his blood pressure medicine or put himback on it, I'm not sure. But this is only due to the fluid around his heart.
They'll monitor him closely and make sure the fluid goes away within a reasonable amount of time. The doctor said his lungs and heart are both strong.
To do the biopsy they have to go in through Rob's neck, near the collarbone. He said it was pretty painful since it took a couple of tries for them to find the artery.
But Rob continues to be a real trooper with it all. His reply was, "I'm a tough cookie, I'll be just fine."
They have a reservation to return on June 29th, just in time for the assembly and it's looking like they'll be able to keep it.
However, Rob's current doctor told Mary they could leave then if they were in a hurry to get home, but there was a chance he might want them to stay an additional two weeks. She explained how anxious they are to get home for their district convention, but told him they'd stay if that's what Rob needed.
- 6/29/99: ROB & MARY COME HOME!
© 1999 Copyright by Shelley Potter, all rights reserved
reprinted by permission
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Afterword: Rob has passed his check-ups with flying colors.
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