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Surgery...
- Thread starter starryeyedtiger
- Start Date
- Thread Starter Thread Starter
- #82
Thankyou
It's been a rough day for me health wise- this not being able to breathe well stuff well...it sucks.
I've talked to some other doctors this week and was advised by two different doctors to seek legal advise becaues these medical issues may be permenant. Jack's mom is an attorney (she specializes in medical malpratice & environmental law) so I know I can talk to her. One of my other friends that I used to help with plays/musicals back in the day is also good friends with a wonderful lawyer so at least I have some options as far as that goes if it becomes necessary (I hope I don't have to go that route, but if it does, it's good to know I can get some good advise). At this point I'm just feeling a little overwhelmed...I can't work or do clinicals and that affects my future career/wellbeing/income. I'm unable to breathe and move around well. I'm also unable to drive much right now (i won't drive more than a few miles from home just for safety reason, so I'm depending on friends/family for rides and that inconviences everyone), and lets not even get into the insane medical bills as a result of everything.
I have an appointment tomorrow with the cardiologist. My dad is going with me tomorrow and I have a list of questions about a mile long that I want asnwered about the surgery and these complications; he owes me some answers and an explanation for neglecting to get me in for an appointment until now, knowing that I have phrenic nerve palsy and a collasped lung because of the surgery he did. I think that's rediculious! I'm planning to write down as much as I can. I go on Monday to the Pulmonologist- so I think once I have talked with the pulmonologist and have a better idea of how permenant this may or may not be and what I need to do as far as pulmonary rehab, I will go from there.
awww nikki that isnt good but continued
Nikki - it's a fine balancing act you're managing now, but I'm really glad to see you finally got some sleep!
I'm really glad you've got someone going with you tomorrow.
I'm sending vibes for you to GET better, to FEEL better, for the antibiotics to work and to not make the C. Diff. worse, AND for strength to deal with this Doctor and to get some answers!
I'm really glad you've got someone going with you tomorrow.
I'm sending vibes for you to GET better, to FEEL better, for the antibiotics to work and to not make the C. Diff. worse, AND for strength to deal with this Doctor and to get some answers!
Originally Posted by StarryEyedTiGeR
.Sorry to complain, I just need to vent a little bit. To sum it up- all of this could have been prevented had the doctor not hit my phrenic nerve during surgery. I'm pretty sure he didn't do that intentionally, but eithor way- I'm now stuck with this.
Words cannot convey how sorry I am. This just isn't right at all, you've been through so much, and I hope beyond all hope, that you just get a break ASAP
- Thread Starter Thread Starter
- #86
Well...I guess today went "ok". On a positive note- my EKG was normal for the first time in my entire life- I had a NORMAL sinus rythm and my heart and heart rate looks good- thank God; at least that part of the surgery worked!! My dad went with me to the cardiologist this morning. The doctor admitted that the phrenic nerve palsy and the right lower & right middle lobe lung collaspes were directly related to the heart surgery he preformed back in August. He said even though he did an EP study before the cryo ablation, sometimes you can still hit the phrenic nerve since it's soo close to the area he was ablating, and not know it until after the fact- )it can take a while for damage to show, which is why it wasn't picked up on right away.) He answered every single question my dad and I threw at him (and believe me, I had a LOT!) He even drew a little diagram to show us exactly how he damaged my phrenic nerve during the procedure
(to sum it up, the dark circle is one of the areas he was ablating...the phrenic nerve is exceptionally close to that area he was working on, and it was somehow got ablated during the procedure)
The doctor said that it will heal, but it can take up to a year even with pulmonary rehab (apparently I will have to go at least 3 days a week for the next year or until it's completly healed
) I insisted that the doctor give me an IS so I can work on my lung exercises (thank goodness I've done rotations as a student RCP and at least know what to do/look out for so I can take care of myself while I heal!) and also talked to him about oxygen therapy/etc for me at night since I can't breathe well...he had me do a few tests there at the office and is trying to get my insurance to cover it, so keep your fingers crossed./ When I asked him if this would effect my future ability to safely become pregnant (I'm concerned about carrying a child if I have significantly diminished lung capacity), he said that my lung & phrenic nerve should heal in about a year or less so I should be safe to concieve a child when the time is right and I shouldn't have to worry about that. That's good news; I'm going to run that by the pulmonologist as well though just to see if he agrees. I've already had soo many setbacks, I'm just ready for a somewhat "normal" life as soon as possible (I'd love to graduate, remarry, and start a family when the time is right, I'm just ready to have my biggest "worry" be choosing a house to live in or a baby name...not if I should sue my physician for damging my body. Ok rant over now!) /I'm also having the cardiologist draw up a note stating that I am currently unable to work/ attenend school/etc as a direct relation to the surgery complication and that my recovery can take over a year- so that if I need to try and get financial assistance or legal advice, I will at least have that on my side. I'm still not sure what or if I'm going to do anything legally yet- I'm going to decide more after I talk to the pulmonologist on Monday.
After we left there, my dad took me by this speciality store that sells Wedge pillows and he got me one so that it will keep my head/chest elevated....hopefully I can get some sleep now! I can't wait to try it out! I had two days in a row of decient sleep earlier in the week (pretty sure it was due to sheer exhaustion) but the last few nights I haven't been able to sleep, and last night I didn't sleep at all...I'm going to take a nap in a little bit and see how the new pillow works
Thankyou everyone for the prayers and vibes
They are very much needed and appreciated. I still feel a little overwhelmed with all of this, but I'm just trying to take it a day at a time (hour by hour) and I'm attempting to be positive (last night was just a really rough night for me; thankfully my best friend came over for a visit and her company + chinese food really cheered me up!)
(to sum it up, the dark circle is one of the areas he was ablating...the phrenic nerve is exceptionally close to that area he was working on, and it was somehow got ablated during the procedure)
The doctor said that it will heal, but it can take up to a year even with pulmonary rehab (apparently I will have to go at least 3 days a week for the next year or until it's completly healed
After we left there, my dad took me by this speciality store that sells Wedge pillows and he got me one so that it will keep my head/chest elevated....hopefully I can get some sleep now! I can't wait to try it out! I had two days in a row of decient sleep earlier in the week (pretty sure it was due to sheer exhaustion) but the last few nights I haven't been able to sleep, and last night I didn't sleep at all...I'm going to take a nap in a little bit and see how the new pillow works
Thankyou everyone for the prayers and vibes
Oh Nikki, what a mess. I'm so sorry this happened! Sending vibes for fast and easy recovery...
- Thread Starter Thread Starter
- #89
Ok so today went well
I went to see the pulmonologist and he was wonderful
I also have a standing job offer when I'm able to heal up and finish school!!
He offered me a job today
As far as the medical issues go- He said that the damage to my phrenic nerve & the lung collaspe are significant, so I honestly will have to wait about a year and see if it heals (it could heal, it could heal partially, or since there's a significant amount of damage, it may never heal..time will tell.) I really think that attitude has a lot to do with outcome though, so I'm trying to stay positive through this. I've been very consistant about doing my breathing treatments, IS exercises, singing (used to be a vocal preformer when I first started college- and singing is awesome for helping collasped lungs), and taking my other meds,etc. I start pulmonary rehab soon- it will be 3x a week for 6 weeks (more if needed). / My overnight pulse oximeter came in today, so I will be doing that test tonight to see if I can qualify for home oxygen at night to help me breathe better for a while (that'd be awesome!). The pulmonologist wants to give it a years time to see if the phrenic nerve heals up (nerve damage can take a long time to heal). I go back to see him in a few months for more x-rays & CT scans...hopefully I'll get some good news when I go back. The doctor said that if things had not improved in a years time, he will be sending me to Vanderbilt to have a pacemaker implanted underneath my diaphragm to help with the Phrenic Nerve Palsy issues (the pacemaker inervates the diaphragm to move up and down and can greatly help improve my quality of life if I wind up needing it....lets hope I don't need to worry about that, but at least the option is there!)
In a bit of good news I did ask the doctor about future pregnancies (I'm not pregnant, just thinking about the future and wondering about safety if I were to concieve or if I should persue other options if my health isn't adequate to safely carry a little one). Anyways, I wanted to know if from a respiratory standpoint if I would put my life in danger or a future babies life in danger if I wanted to concieve a child down the road when I'm ready. He said I would be high risk (because of the heart issues/etc), but I could absoutely have a child safely!
Reason being, the damage to my lung is mechanical and the result of the heart surgery, not disease, so even if it never heals up, I could still safely carry a child since the issue isn't related to disease or lack of oxygenation! He said I would probably be very uncomfortable, but that I could easily figure out how to manuver when I sleep/etc to work that out. So thinking on the bright side- even if my lung never heals, I can still safely have a child..and best case scenario -if my lung heals partially or at best, fully- that would be even better!
I needed that good news today!
In addition to the other medications I'm currently taking, the doctor also put me on Spiriva twice a day to try and help things along as well...so hopefully that will make a difference. His main concern right now is that the right lung doesn't collaspe anymore (2/3 lobes are collasped on the right side at the moment- and infection could further that). So the biggest thing he's concerned with is infection prevention (and doing lung exercises/using meds/ pulmonary rehab should help prevent those issues).
Anways, that's my update for today. I know I've already asked for a ton of vibes and prayers, but if you guys could continue to send those my way, it'd be much appreciated while I heal!
I'm just trying to stay positive and hope for the best.
As far as the medical issues go- He said that the damage to my phrenic nerve & the lung collaspe are significant, so I honestly will have to wait about a year and see if it heals (it could heal, it could heal partially, or since there's a significant amount of damage, it may never heal..time will tell.) I really think that attitude has a lot to do with outcome though, so I'm trying to stay positive through this. I've been very consistant about doing my breathing treatments, IS exercises, singing (used to be a vocal preformer when I first started college- and singing is awesome for helping collasped lungs), and taking my other meds,etc. I start pulmonary rehab soon- it will be 3x a week for 6 weeks (more if needed). / My overnight pulse oximeter came in today, so I will be doing that test tonight to see if I can qualify for home oxygen at night to help me breathe better for a while (that'd be awesome!). The pulmonologist wants to give it a years time to see if the phrenic nerve heals up (nerve damage can take a long time to heal). I go back to see him in a few months for more x-rays & CT scans...hopefully I'll get some good news when I go back. The doctor said that if things had not improved in a years time, he will be sending me to Vanderbilt to have a pacemaker implanted underneath my diaphragm to help with the Phrenic Nerve Palsy issues (the pacemaker inervates the diaphragm to move up and down and can greatly help improve my quality of life if I wind up needing it....lets hope I don't need to worry about that, but at least the option is there!)
In a bit of good news I did ask the doctor about future pregnancies (I'm not pregnant, just thinking about the future and wondering about safety if I were to concieve or if I should persue other options if my health isn't adequate to safely carry a little one). Anyways, I wanted to know if from a respiratory standpoint if I would put my life in danger or a future babies life in danger if I wanted to concieve a child down the road when I'm ready. He said I would be high risk (because of the heart issues/etc), but I could absoutely have a child safely!
In addition to the other medications I'm currently taking, the doctor also put me on Spiriva twice a day to try and help things along as well...so hopefully that will make a difference. His main concern right now is that the right lung doesn't collaspe anymore (2/3 lobes are collasped on the right side at the moment- and infection could further that). So the biggest thing he's concerned with is infection prevention (and doing lung exercises/using meds/ pulmonary rehab should help prevent those issues).
Anways, that's my update for today. I know I've already asked for a ton of vibes and prayers, but if you guys could continue to send those my way, it'd be much appreciated while I heal!
im sooo pleased it went well Nikki continued
