So this should be a fairly quick update. I saw Cardiology today (no tests other than Labs this week) and went ok. There continues to be fluid around the heart and lungs but my stomach and legs are pretty much back to my normal and weight wise I am back down to 116 pds (I varied between 112-118 pre-heart surgeries) so that is good, is nice that my pants fit again!
The big concern right now continues to be what causes this cough and so Dr.E (Cardiologist) would like an ENT consult (yay, hooray) so they can make sure it isn't an issue with either the voice area (cant remember how he worded it, maybe windpipe?) being partially paralyzed in the last surgery or reflux. None of us (NP, Cardiologist or I) really thinks it is these things as I've never had an issue with reflux (but i'll start a temporary protonix again for a week just to make sure, again not awesome to me) and the other issue would have been most likely to show up right after the 2nd surgery and this cough didn't start until about 12 days post-op and after I was home. We know it isn't a cold so the likely cause is just the fluid around heart and lungs and waiting for that to keep coming off both areas. If it got worse I have to call, hopefully it won't. Not sure I can take worse!
**I just thought of this so came back in to edit and in fact didn't even say anything to my parents as I didn't think of it (being I am at their house yet) but Dr.Earing did say today if the fluid didn't come off on it's own with the large diuretic doses they would likely have to go in and remove it I guess via a needle. He was totally against this for (I think) infection reasons and I was like there is no way in hell anyone is jabbing some big arsh needle in my chest not to mention multiple times if I am awake (I imagine maybe they could use sedation/anesthesia) but like I said this would be total last ditch and not something he is leaning towards at this point. Come on fluid and GO AWAY!!!!
Labs for blood thinner have been all over the place since being discharged this last time; while they where often to low prior to the 2nd surgery so we kept having to increase the Coumadin dose, this time the levels have been to high in all but today's case (4 different labs) causing significant bruising in 2 of the cases and last week a milder, less spread out bruising. Today's lab was back to, to low so the Coumadin dose has been increased and Cardiology will re-check labs (if no issues, God willing) before next Thurs appt and Xray.
Otherwise Cardiologist is happy with this heart surgery out come and thinks energy will slowly come back. Part of my being so much more worn out this time is they believe and I can understand my body just not having had time to recover from the 1st surgery and it being so in-depth and long. I had the option to put off Cardiac Rehab for a few weeks (I really do feel kind of crappy) due to this cough as he was somewhat concerned it would worsen with that but he also gave me the option. I figure we can see how tomorrow goes and since I will only go once this week and once next week due to schedule issues on my part it shouldn't be to much overwhelming and I can always post-pone if needed. In that case the NP just said to let her know and she would talk to the Rehab Nursing staff.
That's about it, I am 3 weeks out from surgery, other than pain from this cough I am not feeling to bad (other than legs are something awful tired and feel very worn out when I walk) but still I am driving, doing my own thing and should be able to go back to my own Apt very soon. I want to clean the carpet but otherwise not much reason otherwise to not go back. :) I taught Sunday School this past Sunday for the 1st time this yr (our 2nd wk) and we have 6 girls and 1 boy. I had 2 of the kids in SS last year, 4 of the other girls in VBS and 1 new girl - all seem to have liked it despite my coughing to no end. :) Should be a good year.
Thanks for stopping by,
Erica
Tuesday, September 24, 2013
Wednesday, September 18, 2013
1st Post-op Cardiology Fup, Fluid everywhere
As fairly easy as the 1st heart surgery was this one has literally felt like it is kicking my butt, not only tired but short of breath with stairs or semi-longer distances, swelling (10 pd+ gain over a few days though thankfully seem to be getting that off fairly well now.) On top of that loveliness have been dealing w and very un-successfully trying to control since the weekend a progressively hacking (dry) cough that feels like it is going to rip my chest wires apart. Super uncomfortable. I feel miserable is what it comes down to and have to admit even though I know it is wrong to do so have questioned why does one thing after another have to keep piling up? Can't I just feel ok for awhile? - Late last week I think after I got discharged from CHW there started pretty extensive swelling and bruising with the bruising going from the sternum incision down the entire L side of my upper body and then going across the abdomen. The swelling was in my stomach (think few months preggo look) and ankles/legs and cont'd to get worse Fri so I finally called the Cardiology Nurse.
I Talked to Dr.E's (Cardiologist) Nurse on Fri and initially they increased meds and I had to call Dr.Earing on Sat. morning. He at first wanted me to go to the ER but I was able to convince him we should just watch it for another day on the new doses. Sunday I called again per his wishes and he adjusted another med + instead of seeing them Tues I saw them today (mon) after ERT which made for a long day! Chest and Abdomen Xrays along w an Echo showed there is Fluid building up around the heart (there was a small amount when I was discharged but this has increased some, as well as fluid around the lungs and throughout the abdomen. So far since I was able to get some fluid off in a few days w the med adjustment we are just watching this and will stay on the increased diuretic (gets fluid off) meds which are Lasix 40mgs 3x's a day and Aldactone 25mgs 2x's a day.
Labs also showed that the INR (blood thinner level) is also very high so does explain a lot of the bruising. This med dose was decreased from 6mgs 5 days a week, 4 mgs 2 days a week to 2 mgs until Thurs when they will re-check labs and if needed adjust dose. I can do those labs while I am at an outside but connected hospital. With the last heart surgery this Coumadin (blood thinner) dose was the opposite when I came home with us having to increase the strength at each weeks Echo/Cardiology Appt but likely has to do w the surgery and other things going on + not as great of an appetite due to this cough.
I follow up again with more Labs next Tues and Appt with Dr.Earing + the NP and not sure if they will tack on an Echo at the end again.
The week that I was discharged from CHW the Anesthesiologist stopped by my room again and has asked me if I would take some pictures for her to use. She also asked me if I would be interested in a Therapeutic Yoga program that is run at the same center she goes to for Yoga as she wondered if this wouldn't help some with overall body discomfort/joint issues. I said I was (why not I guess) and so she is going to get back to me with that info. I do PT and starting Cardiac Rehab but figure anything that might help is worth at least looking in to at worst it wouldn't be something i'd be interested in and at best would be useful. She wants to use the pics I've put together and am taking over the next 7 days (mouth opening as she suspects based off the 2 surgeries and having done both anesthesia intubations that having had ERT the day before surgery the 1st time helped w jaw opening vs the 2nd time I had missed the day before due to the holiday and so it had been a week). The other pic is the MPS chromosome tattoo. I don't know if she will end up having time but she said she would still like to write an article of her findings and what she used with these 2 heart surgeries and though she might not get a chance to do it till later in Fall she asked me to send her a copy of these pics. If she is able to write the article that will be good for the MPS community and is non-identifying so no one would know who it was written about.
I'll try to update at least after next weeks Cardiology Appt.
Thanks for stopping by,
Erica
I Talked to Dr.E's (Cardiologist) Nurse on Fri and initially they increased meds and I had to call Dr.Earing on Sat. morning. He at first wanted me to go to the ER but I was able to convince him we should just watch it for another day on the new doses. Sunday I called again per his wishes and he adjusted another med + instead of seeing them Tues I saw them today (mon) after ERT which made for a long day! Chest and Abdomen Xrays along w an Echo showed there is Fluid building up around the heart (there was a small amount when I was discharged but this has increased some, as well as fluid around the lungs and throughout the abdomen. So far since I was able to get some fluid off in a few days w the med adjustment we are just watching this and will stay on the increased diuretic (gets fluid off) meds which are Lasix 40mgs 3x's a day and Aldactone 25mgs 2x's a day.
Labs also showed that the INR (blood thinner level) is also very high so does explain a lot of the bruising. This med dose was decreased from 6mgs 5 days a week, 4 mgs 2 days a week to 2 mgs until Thurs when they will re-check labs and if needed adjust dose. I can do those labs while I am at an outside but connected hospital. With the last heart surgery this Coumadin (blood thinner) dose was the opposite when I came home with us having to increase the strength at each weeks Echo/Cardiology Appt but likely has to do w the surgery and other things going on + not as great of an appetite due to this cough.
I follow up again with more Labs next Tues and Appt with Dr.Earing + the NP and not sure if they will tack on an Echo at the end again.
The week that I was discharged from CHW the Anesthesiologist stopped by my room again and has asked me if I would take some pictures for her to use. She also asked me if I would be interested in a Therapeutic Yoga program that is run at the same center she goes to for Yoga as she wondered if this wouldn't help some with overall body discomfort/joint issues. I said I was (why not I guess) and so she is going to get back to me with that info. I do PT and starting Cardiac Rehab but figure anything that might help is worth at least looking in to at worst it wouldn't be something i'd be interested in and at best would be useful. She wants to use the pics I've put together and am taking over the next 7 days (mouth opening as she suspects based off the 2 surgeries and having done both anesthesia intubations that having had ERT the day before surgery the 1st time helped w jaw opening vs the 2nd time I had missed the day before due to the holiday and so it had been a week). The other pic is the MPS chromosome tattoo. I don't know if she will end up having time but she said she would still like to write an article of her findings and what she used with these 2 heart surgeries and though she might not get a chance to do it till later in Fall she asked me to send her a copy of these pics. If she is able to write the article that will be good for the MPS community and is non-identifying so no one would know who it was written about.
I'll try to update at least after next weeks Cardiology Appt.
Thanks for stopping by,
Erica
Tuesday, September 10, 2013
Cardiac Surgery - Take II (Finally, An update from last weeks surgery!)
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
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
Thursday, September 5, 2013
Wednesday, September 4, 2013
It is still Mom updating tonight. Erica had a fairly uncomfortable day today. Breathing tube out but everything else still on and in. They are changing her pain meds tonight so hopefully she will get some rest. She did get to drink a little soda this afternoon and I think it tasted pretty good! One day at a time and hopefully -- moving forward all the way this time!
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