It's 4:08 am Saturday morning. I have been tossing around in this bed for a while so decided to write down some of what is going around in my head.
This is a bit out of order for My Family Story which I just can't settle down to finish - even though I am so close to the end - Aunt Nellie is almost done, then Aunt Hannah, Uncle Jim Keohane, and finally my grandfather John Keohane are left. But I can't concentrate on them right now.
February school vacation is a great time to travel. My daughter Mairead went to Seattle for a few days - we had been out there in August on our way to Alaska with my son Dan and his wife Amanda. We all loved Seattle - Mairead had talked about returning again to see more of it - so she did.
My nieces traveled - Ellen to Las Vegas and the Grand Canyon with some fellow teachers - Dan had flown in and out of Las Vegas a couple of times in his quest to travel to all 50 American states.
Katherine and a friend went to Norway for a lifetime of adventures - they went on a reindeer sleigh ride over the snow - that must have been similar to the dog sled ride that Dan and Amanda, Mairead and I took on a glacier in Alaska.
My sister Patty and all the Schiavonis traveled to London - one of my favorite cities. Some of them are heading to other parts of England and Scotland this week. Dan traveled with some of the Schiavonis to England and Scotland when he was in middle and high school - I know he golfed at Old St. Andrew's.
My sister Jody and I had originally thought about going to London - but Mickey had a hip replacement so Jody was otherwise engaged, and because Dan had told me in December that he had decided to have this lung transplant, I pulled out of London to save money for that life changing event.
But I did travel this vacation week as did Dan and Amanda - to MGH - Massachusetts General Hospital - Dan finished up his pre transplant testing, and we attended a transplant class.
Since the day Dan was diagnosed with Cystic Fibrosis - and I can still picture him - a high school sophomore - sitting at a table in the living room on Green St. in Watertown - I got off the phone with Dr Gerry Hayes at St. E's who had told me that Dan had CF and he was referring him to Henry Dorkin, a CF specialist at Floating Hospital - I had to tell Dan, I knew this time would come. I remember thinking then that at least it wasn't cancer.
I had worked with CF babies when I was a visiting nurse in New Hampshire years before - I hardly knew what CF was or what I was supposed to do except to give those babies chest PT - I remember stretching my legs out and laying them upside down on my legs so their heads pointed to the floor. I would cup their little backs and then do their sides and front. Never thought I would be trying to do it to my own son years later when he was a teenager. A PT would come to our house, and I could hear the cupping sound downstairs - it was so loud I thought Dan would come down through the floor! Sometime the PT could not make it - I would try but I didn't have the strength or stamina to do a good job of it for Dan.
Now here we are at MGH listening to a Social Worker, Ann LaFleur telling us that Dan needs 2 caregivers after the transplant. I had always thought that I would be the primary caregiver - for some reason I never thought Dan was going to get married - then he met Amanda and his life changed. So now I am the back up primary caregiver - I told them both I would do whatever they needed.
Ann told us that there will be multiple follow up appointments - at least 2x weekly - Mondays and Thursdays - get there early for lab work - don't take any of the 14 pills before the labs. Then there might be chest X-rays or scans or echoes or bronchs before seeing doctors, nurses, other disciplines - a long tiring day.
But, before all that, comes getting on the transplant list - the evaluation is a long series of tests - Dan had some during Christmas school vacation and finished them up this week. The transplant team meets weekly and reviews the candidate and test results - eventually decides to accept or reject the patient - gives them a score and then he/she is listed on the transplant list. The score is 1-100 - below 30 is considered not ready for transplant - the person is not on oxygen 24/7 or is able to function fairly well. Over 80 is a disqualification - the person is too sick and deconditioned to survive a transplant or will not recover enough to improve his/her quality of life. So between 31 and 79 is the place to be, I guess. The average wait on the list is 22-29 days.
Ann LaFleur went on to say that if you make the list and live over 2 hours from MGH, you should consider staying closer to the hospital while you wait for your lungs. Dan said it took them about an hour and a half to get there from Leominster. Ann said that MGH subsidizes Beacon House where patients and families can stay before and after the transplant - families can also stay while the patient is in the hospital - it is $69/night. LaQuinta hotel is 2 miles away and has a special rate of $100/night for families - they also provide a shuttle back and forth to MGH.
Ann said when Dan gets the call - do not rush in - no need for a police escort - but don't delay. Ann Marie the nurse practitioner explained that when she hears that lungs are available, she goes through MGH's listing to see if there is a match. If there is, she sends out the procurement team to collect the lungs - then she calls the patient and tells them to head in. She needs Dan to give her 3 phone numbers - she starts at the top and calls until she gets someone - so our phones have to be charged at all times and within reach. Ann Marie gets the rest of the team rolling which includes setting up the operating room. When the patient arrives, he/she is whisked away to get ready - and the family gets to wait for an awfully long time - could be over 8-10 hours.
The doctor on the procurement team examines and tests the donor lungs and says yea or nay. If nay, everything stops and the team and patient go home. If yea, there is only a 6 hour window once the lungs are procured from the donor to get them transplanted - and that includes transportation time back to MGH. Ann Marie said they have had patients intubated and ready for surgery then had to cancel because the surgeon rejected the lungs. So when the call comes, it is not definite - it could be a no go.
However, if all goes right, and the transplant is done, Dan would go to ICU from the OR. After he is off the breathing machine, he has to have a speech and swallow exam before he can eat or drink anything so he does not aspirate anything down into the new lungs which could cause infection. Dan is in ICU for 3-5 days then transferred to the transplant floor where he starts real physical therapy, med teaching, and gets ready to go home. He will be in the hospital 3+ weeks. The caregivers meet with a pharmacist, the nurse practitioner, PT, etc for extensive teaching. Dan needs a caregiver 24/7 for at least 1 month at home - he will be on new meds so the caregiver has to watch for any side effects from meds, any signs of rejection or infection plus keep track of med changes as well as take Dan into MGH 2+ times weekly for follow up appointments. And this doesn't include the regular day to day meals, laundry, cleaning, etc!!
Someone mentioned that the high doses of Prednisone might make Dan crabby so we need to be prepared for that. He can't drive for the first 3 months - no swimming or hot tub for a year in case he would swallow the water - but WE can enjoy his pool and new hot tub!!
Preventing infection is tantamount - do not visit if you are sick or have been in contact with someone who is sick. Frequent hand washing is important - and that applies to the flu as well as a transplant. Sarah the pharmacist told us that a lung transplant is different and more delicate than any other transplant because each time Dan breathes, he is exposing his new lungs to the outside air and everything in it. Dan will have lost the protection of the secretions of his original lungs.
Other problems that could arise are diabetes from the Prednisone, kidney disease from all the meds, increased risk of skin cancer.
We also met with a pharmacist and a speech therapist during this transplant class. Everyone said the transplant will be very costly - start fundraising. Ann Lafleur I guess is especially fond of spaghetti dinners from what the others said about her. She also mentioned silent auctions and a patient who had friends who were musicians - they got together one night for a fundraiser,
Someone gave out a list of 14 meds that would be taken postop - Dan is to check with his insurance to see if they are covered and what the copay is - one gentleman at the class said his insurance does not cover Tobi nebulizer which costs $7000/month - so that fellow has to pay out of pocket.
Besides copays for meds or the cost of the meds themselves, there are hospital copays - Dan's was $750 for MGH, but I'm not sure what it is now, parking and meals while he is in the hospital and for the 2+ days per week for follow up testing, a spirometer which is about $500 that he uses at home and insurance does not cover - they also have to maintain their mortgage, utilities, car payment and most importantly their insurance coverage.
Ann encouraged caregivers to work while patients are in the hospital - ask other family members to visit while the caregivers are working - this will cut down the time Amanda and I have to take off from work.
So my traveling this week was a lot different than anything I had done before - but I learned a lot! Now we are waiting for Dan's appointment at MGH in March - he will likely be listed then - and the real countdown will begin!
