I apologize for no update since my Mom left off last Weds/Thurs updating my progress post surgery. I've meant to write a note sooner and just had no motivation or real energy to sit down and do it. I've not spent much time on my laptop mostly I guess due to being tired/lack of sleep and just plain putting off this and a few other things I should to get done!
Surgery itself according to the Anesthesiologist took about 10-12 hrs (I cant remember which) this time and was much more complicated than was expected/hoped for (The Surgeon had hoped to only have to re-seat the mechanical aortic valve) due to the issues going on and scar tissue. They had to re-do everything that was done In the last surgery 7 wks ago. As far as scar tissue they where amazed to note that this was a closer equivalent at my being 6 weeks post-op to someone who had, had cardiac surgery at say 3 years old and was then having revision surgery again 10 years later!? I guess in thinking about this after I heard the information I wasn't maybe entirely surprised as my Mom reminded me when I had called her that night that with Dr. Bragg's shunt surgeries she to would often comment how quickly the shunt tubing and pieces where scarred. It was always a similar issue w the shunts being so scarred, so early she typically couldn't visibly see them without dissecting down (something like that) vs in a average patient at say 6 weeks she would be able to identify the shunt location upon incision and remove it. This makes me think then that it has to be something with the MPS storage affecting how our bodies deal with devices or foreign material? In one way I guess it is good in that it means said equipment is less likely to come lose after a few weeks, maybe? The other comment I heard was that there was a large loss of blood (Dr.Taylor, the Anesthesiologist stopped by a bit earlier tonight) Dr.Taylor wanted to share a few things plus ask a few questions. She did share that the blood loss with the cardiac surgery a week ago was equaled to my near total body volume being lost and thus replaced with blood products. Wow, at the amount of blood loss! I also don't think I've ever had to get blood/product transfusion with any of the very many other surgeries in the past including there was minimal blood loss w the 1st cardiac surgery last month so this was a first. Between this loss plus the heart/Lung machine the Anesthesiologist at least wandered if these 2 combinations but especially the Heart/Lung machine would explain the more difficult recovery this time? Last time I believe very little blood was lost and though I don't know the specific amount of time spent on the Heart/Lung Machine this time I wonder if an increased time = increased loss of the synthetic enzyme (replacement, aldurazyme) so nothing to help my body really fight as hard? The Anesthesiologist felt the almost certain complete loss of the synthetic enzyme would have played a part and especially given I had already missed last weeks dose (due to Labor day we would have done it at clinic on Tues, the day of surgery) so less even available to begin with? I did get ERT here on the floor this week (so missed just a 2 wk span) which was complicated but my GC managed to get it done! The 'enzyme/bypass potential issue in MPS I pts was something the Anesthesiologist wanted to explore and I think was going to either talk to or send her findings to my Cardiologist. I am going to email her to see if she would share anything she finds if she does look in to it.
Another issue the Anesthesiologist brought up to me was given how difficult this recovery was (multi-factorial likely) she wondered if she hadn't been wrong about it being better to bring me off of the intubation and sedation at post op day 1 (Weds) vs instead leaving the breathing tube in for 3 days like the 1st surgery 7 weeks ago? Given how much better I sailed through the recovery once I was awakened completely and extubated the 1st time around (better pain control didn't hurt the 1st time either) I am curious if she is right about waiting some? Her thought was maybe it is better to give the MPS body (specifically my body) a longer chance to recover and a little healing time first? She felt this particular surgery due to it's long length would have put extreme un-due stress on the joints/muscles/spine (especially c-spine which is fused), the shunts/hydrocephalus, the Endocrine system (steroid need) and overall affects. She said she also wondered if giving an extra dose of the Aldurazyme before any MPS I pt has cardiac surgery and goes on by-pass could make a difference as there would be essentially extra enzyme there for the body to deal with regardless of the by-pass filtering. She I think was also going to talk to my Cardiologist about this. Hopefully we wont need to find out for the future but is really nice to know how much time she (Anesthesiol) put in to my care, how much fup she did post-op (stopping by daily through Fri night and again this week) and that even though she doesn't have to she wanted to help both now and if needed (hopefully not!) make a difference in out-comes in the future.
Last but perhaps most memorable was this Anesthesiologist when I was lying on the OR table and they where hooking up all the monitors was talking about my MPS I 'chromosome tattoo' and how my Surgeon had taken a picture of it the last surgery. She wondered if I would mind signing a HIPPAA release form for her so she could take a picture and potentially write an article related to her/my experiences with these 2 cardiac valve surgeries and the TEE Anesthesia and she thought the chromosome tattoo would be a nice addition/pictorial for any article. I hope she does write an article as I think it is sorely needed! I've shared her letter/summary here and on fb previously for other MPS Families to potentially use as a draft in order to get copies of their own or their child's Anesthesiologist impression but feel there are sorely needed more medical journal articles on MPS and cardiac issues and cardiac issues/anesthesia!
There has been strong talk of was the valve issues this 2nd time being caused by Bacterial Endocarditis due to the look of it once I was opened up on the table but no official consensus could really be made on this. The Cardiology/Cardiovascular teams initially intended to send me home on 6 weeks of 3-4 time daily IV (hours long) antibiotic but have now opted to do an Oral Med and watch the valve closely. I will fup with them as soon as Monday.
Otherwise the worst issue has been I don't have the energy I had with the 1st surgery but everyone feels this is likely due to this 2nd 're-do' surgery taking so long (10-12 hrs), being on by-pass so long during that as well as flat on my back during the surgery (hard on an MPS body) and that the healing process is just going to take longer till I notice probably even subtle differences and my body can catch up. Breathing has also been an issue but this is also felt to be due to my body adjusting to the new heart function/the surgery and will likely take a few weeks to feel like I don't have to struggle to breathe or more aptly feel like I am suffocating in trying to get air. My oxygen level has been at or right near 100% and Blood pressure hasn't been to out of normal if at all while pulse is pretty high compared to normal but that is being treated with a different beta blocker for now so it really should be just a 'give it time to heal' thing!
Lots going on! Should still be able to get out of the hospital tomorrow (Weds) which is awesome! 2 friends of mine are coming to pick me up and our plan is to go get lunch and ice cream before we head home. We all 3 also have a Sunday School meeting tomorrow night so I am hoping I can either go to my Apt once we get home or hang with one of those 2 till the meeting starts later (6:30).. We'll see how it all plays out!
On a side note my Cardiologist must have asked my Cardiothoracic Surgeon to call me and he did this afternoon, in amongst 1/2 a doz Residents being in my Hospital room but was still a good talk.
Thanks for stopping by,
Erica
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