On Monday I had a regularly scheduled follow up with Dr Weisshaar, my main cardiologist at Kaiser. We were able to have the appointment by video chat, to save me the stress of travel.
During the appointment we discussed how I have been doing. In essence, we came to the same conclusion that the ER doctor at Kaweah did. I am slowly declining . I get tired more quickly, and take longer to recover. I'm having more payback days.
Dr. Weisshaar was concerned about this because she doesn't want me to lose so much capacity or muscle mass before I am transplanted that I have a hard time recovering.
She explained that as a Status 2 priority Type O candidate, I could be facing a wait time of up to two years due to the shortage of organ donors. The only way to get a transplant sooner is to move up to a higher priority status level.
Quick review of the status levels: Status 1A means that a person is in the hospital and urgently needs a transplant. 1b is for those who can stay at home, but are on invasive external support like a left ventricular assist device or continuous IV medication. Status 2 is everyone else who needs a heart transplant.
She said there were two ways for me to be upgraded to the next level, status 1b. The long shot way is we could petition the national organ transplant organization and ask that they make an exception and categorize me as 1B, just because I'm declining quickly. Or two, we could start me on IV medication which automatically gives me 1B status.
I agreed to the second plan, and Polly who has been helping me with the house and kids, drove me up to Santa Clara on Tuesday morning.
When we arrived at the heart failure clinic, they informed us that there were no beds available, and to come back after 3 o'clock once more patients had been discharged. So Polly and I had a very pleasant afternoon in Santa Clara and environs. First, we went to a very good Mexican restaurant and enjoy a long leisurely lunch. Then we drove down El Camino Real through Sunnyvale and mountain view, and headed south on Highway 85 and back east on homestead. Homestead took us right past apples news office complex under construction in Cupertino. We finished off our afternoon enjoying decaf mocha frappuccinos on the patio at Starbucks.
Back at the clinic bed finally became available and the room was clean and ready for me by 530 or so. They started me on the dopamine through a regular IV.
I began running a low grade fever probably related to engorgement, and also became nauseated which may be a side effect of the dopamine. After a dose of Zofran I felt much better. However I did not sleep well that night between discomfort of engorgement and a nagging cough from the tail end of a cold.
The next morning I was visited by Dr. Nishime and a Fellow from Stanford during rounds. She prescribed cough syrup with codeine to help me rest. It kicked in right away and I slept from 10 to 2. Around 4 o'clock, the technician came to put in my PICC line.
I declined the cough syrup with codeine the next time it was offered but took it again at bedtime. I slept from 10 to two again, and woke up coughing when this syrup for us. Wore off. I was awake for about an hour after that calming down my cough, relieving some of my engorgement, and getting my vital signs checked. Just before 3 I took a second dose of syrup with codeine and slept hard until 715.
Then this morning I found out that there was some miscommunication between Cedars-Sinai and Kaiser, and I have not been placed on the list yet, pending the results of the additional testing requested. So I got an emergency appointment at the Women's Clinic in the medical office side to have the Pap smear completed. Normally pap smear results take 1 to 2 weeks to process, but the OBGYN said she would see if she could get it expedited for us. The other tests have already been completed.
Not being listed yet just means that I have not been accruing wait time. How long a candidate has been waiting is one of the factors that goes into determining who is offered available organs. I know God has control of the timing regardless, so this does not bother me.
Everything is on track for me to be discharged tomorrow after they fit me with a life vest (external defibrillator) and teach Adam and I everything we need to know about the continuous IV pump.
During the appointment we discussed how I have been doing. In essence, we came to the same conclusion that the ER doctor at Kaweah did. I am slowly declining . I get tired more quickly, and take longer to recover. I'm having more payback days.
Dr. Weisshaar was concerned about this because she doesn't want me to lose so much capacity or muscle mass before I am transplanted that I have a hard time recovering.
She explained that as a Status 2 priority Type O candidate, I could be facing a wait time of up to two years due to the shortage of organ donors. The only way to get a transplant sooner is to move up to a higher priority status level.
Quick review of the status levels: Status 1A means that a person is in the hospital and urgently needs a transplant. 1b is for those who can stay at home, but are on invasive external support like a left ventricular assist device or continuous IV medication. Status 2 is everyone else who needs a heart transplant.
She said there were two ways for me to be upgraded to the next level, status 1b. The long shot way is we could petition the national organ transplant organization and ask that they make an exception and categorize me as 1B, just because I'm declining quickly. Or two, we could start me on IV medication which automatically gives me 1B status.
I agreed to the second plan, and Polly who has been helping me with the house and kids, drove me up to Santa Clara on Tuesday morning.
When we arrived at the heart failure clinic, they informed us that there were no beds available, and to come back after 3 o'clock once more patients had been discharged. So Polly and I had a very pleasant afternoon in Santa Clara and environs. First, we went to a very good Mexican restaurant and enjoy a long leisurely lunch. Then we drove down El Camino Real through Sunnyvale and mountain view, and headed south on Highway 85 and back east on homestead. Homestead took us right past apples news office complex under construction in Cupertino. We finished off our afternoon enjoying decaf mocha frappuccinos on the patio at Starbucks.
Back at the clinic bed finally became available and the room was clean and ready for me by 530 or so. They started me on the dopamine through a regular IV.
I began running a low grade fever probably related to engorgement, and also became nauseated which may be a side effect of the dopamine. After a dose of Zofran I felt much better. However I did not sleep well that night between discomfort of engorgement and a nagging cough from the tail end of a cold.
The next morning I was visited by Dr. Nishime and a Fellow from Stanford during rounds. She prescribed cough syrup with codeine to help me rest. It kicked in right away and I slept from 10 to 2. Around 4 o'clock, the technician came to put in my PICC line.
I declined the cough syrup with codeine the next time it was offered but took it again at bedtime. I slept from 10 to two again, and woke up coughing when this syrup for us. Wore off. I was awake for about an hour after that calming down my cough, relieving some of my engorgement, and getting my vital signs checked. Just before 3 I took a second dose of syrup with codeine and slept hard until 715.
Then this morning I found out that there was some miscommunication between Cedars-Sinai and Kaiser, and I have not been placed on the list yet, pending the results of the additional testing requested. So I got an emergency appointment at the Women's Clinic in the medical office side to have the Pap smear completed. Normally pap smear results take 1 to 2 weeks to process, but the OBGYN said she would see if she could get it expedited for us. The other tests have already been completed.
Not being listed yet just means that I have not been accruing wait time. How long a candidate has been waiting is one of the factors that goes into determining who is offered available organs. I know God has control of the timing regardless, so this does not bother me.
Everything is on track for me to be discharged tomorrow after they fit me with a life vest (external defibrillator) and teach Adam and I everything we need to know about the continuous IV pump.
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