The trip to Santa Clara was a little rough on Mr. Elliott. He slept in 45 minute to an hour bursts, and then cried no matter what we did for about 45 minutes, and it just kept alternating like that. In all I think we stopped four times on the way up and twice on the way back (thankfully he slept soundly for the second half of the trip home).
I was so happy to have my parents with me yesterday. It was fun to spend time together on the road and in the waiting rooms, and it was wonderful to have them there to process the results of the appointment.
The meeting with Dr. Weisshaar was so helpful. I really love that she tells it like it is, very directly and frankly without leaving things vague or implied. She has a great understanding of my condition and heart failure in general and is very skilled at explaining things clearly.
Our appointment together was quite lengthy. First I gave a summary of what I knew about my condition. Then she asked me a lot of questions about my medical history and current symptoms, and did a physical examination to check my blood flow, fluid levels and pulses at various points of my body. Next she gave a synopsis of what hypertrophic cardiomyopathy is and how it can lead to death.
1) Through sudden cardiac death from fatal arrhythmias. I'm not at high risk for this.
2) Through heart failure as the muscle thickens and stiffens and loses the ability to pump blood.
She explained how they assess the risk of death from heart failure. The best prognostic tool they have right now is the VO2max and VE/VCO2 slope, which I explained in the previous post. My numbers there are quite bad, which is why she recommends seeking transplantation sooner than later to give me the best chance to live, and a renewed quality of life.
She explained that waiting for a heart transplant is like waiting to board a plane with Southwest. There are different lines for each of the blood types, and then within that line there are three risk categories: 1A = imminent death within a few days to weeks without a transplant, 1B = on IV medication or hospitalized with symptoms, and 2 is for everyone else who is sick enough to need a transplant but not sick enough to be a 1A or 1B. The O line is the longest because it's the most common blood type.
Each time a heart becomes available it goes down the priority list until a match is found. The first person on the list may need a bigger or smaller heart than what is offered, or have antibodies against the heart that is offered, and so they'll keep checking down the list until the right match is found. There are about 4100 people on the heart transplant list right now, and only about half of them will get a heart this year, mostly 1As and 1Bs, but rarely some 2s.
She talked to us about screening first degree relatives. I'm in the midst of having genetic counseling and testing done. If they can identify a gene related to my cardiomyopathy, then they will test my siblings and kids for that gene. Those without the gene are free and clear, those with the gene will require echocardiograms every two years through puberty and five years thereafter to screen for evidence of disease. If they don't identify which gene it is, then all first degree relatives will need to be screened on that schedule, because given my paternal grandfather and aunt's medical history with heart failure, it's clearly genetic even if we can't pinpoint the gene.
She explained some of the transplant workup process and some of the recovery process. After I get on the transplant list I need to be seen once per month, but some of those can be video appointments as long as I go to Santa Clara at least once every three months.
I did some research into the IV drugs that I will likely be given during my likely upcoming hospital stay, which is scheduled for Thanksgiving week. There are three choices of inotropes that may be given. I called Infant Risk to find out their compatibility with breastfeeding. Two of them are L2 - Possibly Compatible with Breastfeeding. One of those has a risk of reducing milk supply. The third drug is L4 - Possibly Hazardous to the Baby. This means it should only be used in a lactating mother in a life or death situation, and it's best if breastfeeding is interrupted while the drug is administered and be resumed after the drug passes from the blood, in this case 8 hours after the last dose.
My breastfeeding relationship with my boys is very important to me. I'm OK with Zachary being done at this point although I will miss having that tool to comfort and connect with him, but I'm really not ready to wean Elliott. I'm going to do everything I can to avoid weaning for as long as possible. I will pump milk for when we are separated, try to minimize our separation, ask that the L2 drugs be tried first, and other strategies.
After Dr. Weisshaar and I finished talking, then she sent in a case worker and a nurse and one of the other cardiologists to meet me. By the time we were done and headed to the lab for the first round of blood work, it was already 3:45. The first step of the workup process was to give about 12 vials of blood, some of which had to be sent to Stanford for analysis. We had to wait quite some time while they figured out if they could get it to Stanford in time. I was relieved that my blood flowed well and quickly and I didn't feel woozy at all.
Once the blood work was done we went down to the lobby for a final potty and nursing break before hitting the road. After I washed my hands in the restroom I noticed a woman in a wheelchair behind me, trying to make the automatic paper towel dispenser work. She seemed to have cerebral palsy or something similar that made it difficult for her to control her movements, so I offered to help and waved my hand in front of the red light and pulled the towel off for her. She asked me if I would pick up her purse which slid off her lap and fallen to the floor below the sink area. We were the only ones in the restroom, so I offered to hold the door open for her as well. I felt so glad to be able to help her, but when I came out of the restroom my parents told me they had been worried that I passed out in there!
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