Quick update before I blab about what's on my mind. My INR level has reached therapeutic level! At least yesterday it did, today its down again. I'm guessing because they lowered my dose... why I don't know since I was just at therapeutic not too high. The concern is my oxygen saturation still dropping into the 80s and heart rate still in the hundreds... still as high as 150 when just doing something like brushing my teeth. Of course every time the doctors look- at that specific moment it is fairly normal. A watched kettle doesn't boil. They claim my oxygen dropping that much is ok because with PE it won't get better for a while. Oh really? Pretty sure oxygen dropping into the 80s means your organs aren't receiving enough oxygen... heart and brain being of most concern. They also want to send me home with oxygen but can't with insurance unless they witness the drop. The nurse witnessed it but unfortunately their 1 minute "exam" per day doesn't allow enough time to witness it. They finally realized I'm no dumby and since have repeatedly told me how intelligent I am, shocked at how knowledgeable I am in the medical field. Perhaps I should be the doctor here... ok ok I digress. Unfortunately I just have way too much experience from the patient end.
Over night I abruptly got this horrible pain in my knee. See I have this little raised bruise like thing on my one knee. It appeared a few years back and doctors can't agree on what it is, so it just stays there because it doesn't really bother me. Well I've never had this pain before like burning and stinging with pressure feeling under it. It hurts more when I walk and when I bend it there is this huge mountain under it! What the heck! Of course again the doctors don't know or care. Dr. Heather thinks its a raised blood vessel with bursitis underneath it... just a guess but no one else seems to know so I'm already a step ahead on my own diagnosis once again. I'm starting to sound arrogant and I'm not at all but I am annoyed with how little attention I receive. Remember if I wasn't persistant and pushed and pushed and researched and denied the diagnosis "just anxiety" I never would have got my MG diagnosis or the PE diagnosis or the Sjogrens diagnosis.
Anyways, if all goes well, and please pray that it does, I have a tentative discharge date of tomorrow. After that its back to clinic every couple days to check my levels to make sure I stay in therapeutic range. After about 1-2 weeks if it is stable I can go a little less often.... for 6 months til I can hopefully then get off this medicine.
So this is the thought I wanted to get at. Everyone goes through problems in life... health, financial, marital, job, family, etc. But when it happens we tend to think the whole "why me" especially when everyone else we know seems so healthy or happy or wealthy etc. We compare our negatives to everyone elses positives. We compare our private life to everyone elses social/public life. And then we tend to hide the problems we are going through... perhaps because of embarrassment or upset or not feeling up to par with the rest of the family or friends... or pride or ego. Who knows. Point being, why do we do this? Why is everyone SO secretive? Why is such a problem perceived as so negative when everyone goes through these problems at some point or another. Yes some people have it better, some people have it worse, some people deal with it differently. But what would happen if suddenly everything private became public? Would we feel as bad? Would we want to help others more than focus on ourselves because we could "see" their problems? Would we strive to be better people?
Personally I think when things are private it is because someone did something that would be seen as wrong. You don't want people to know if you did something wrong. You want your outer image to be the best it can be. But if your outer image doesn't match your inside or your actions, is it anything more than fake? If I had my choice, everything in life would be public. I do think we would be better people because of it. I also think we would be healthier because of it, understanding we are not alone in what we struggle through. Maybe it would even bring people together. But, again I digress, because society is what it is. I can post this blog about my own personal life in regards to health, but nothing more, nothing more because as soon as it involves any other person and can be perceived as negative, I will be looked down upon. Been there, done that. So I have to fit into this box called society.
But if you take away that box, take away privacy, what do you have? Basically you have a portion of what God has- as God can see everything. God can see what you try to hide, God can see what your hidden thoughts and actions are, God sees and knows everything. And if we are trying to live in the likeness of Jesus, most of what is hidden we shouldn't do. But we can't "see" God, so perhaps we tend to forget there is already someone who can see everything. Perhaps we should pretend others can see everything because maybe just maybe it would make us better people. Maybe we would remember more that we aren't alone in our struggles. Maybe we would have conversations rather than arguments, laughter rather than anger, and support rather than competition.
I'm going off on a tangent because its lunch time and I've lost my focus. But I think you get my point for today. So how about this. Maybe you're not ready to be public, actually it will probably never happen in this lifetime... but maybe you can open a door, take down a wall, share a little more, communicate a little more, let others know they aren't alone and realize you aren't either. Spread the love, receive the blessing... its right behind that closed door.
Saturday, April 27, 2013
Wednesday, April 24, 2013
PE update 2
Hi all. I'm still in the hospital... been here a month all together now, with 4 days home in between. I really want to get out of here. Please pray that all my levels and vitals reach where they need to and remain there so I can go home. Now for the details...
The original plan and everything I've read and been told by every doctor other than my main team is that you need to stay on heparin until the warfarin level reaches therapeutic range otherwise its as if you're not receiving treatment... because heparin only stays in your system about 4-6 hours and warfarin takes at least a few days to kick in. Yet Saturday they decided to stop the heparin and then start the warfarin, going against this. I still don't understand why or like that the surgery team is treating a pulmonary embolism. I'm also seeing neurology, hematology, cardiology and pulmonology... all of which agreed with original plan... and GI but that's most likely, hopefully unrelated. Yet here it is the surgery team making all the decisions and overriding the other decisions.
Saturday night, just hours after stopping heparin I started having a lot of trouble. It was a really really rough night. I was worried. It was just as bad if not worse than in the emergency room. I was coughing to catch my breath, levels were dropping even with oxygen, I could barely sleep because it was so hard to breathe. No one seemed to care. Of course whenever any doctor or nurse would look at my oxygen saturation it would be fairly normal. The primary/surgery team kept seeming to make up excuses to back up their decision to pull the heparin. I don't buy into any of it, especially when the other teams reconfirm my thoughts on this.
Well these oxygen drops went on for a few days. Prior to this I was improving and could walk to the bathroom and back without oxygen... it would drop but I could make it and put the oxygen on upon returning. I was walking the halls with oxygen on. But then Saturday night came and back to oxygen saturation dropping and needing oxygen again while just sitting in bed. They claim it has nothing to do with stopping the heparin... sorry but I call BS.
Well, look who's right. Yesterday I got put back on the heparin drip. Surprise surprise I couldn't do without it. Today I'm doing better again. I am walking the halls without oxygen!! It is still dropping but only occasionally and oxygen brings it back up. My heart rate is still way too high though. And the bad part is the only way I can walk and breathe is either hooked up to heparin iv drip or oxygen. I know I can't rush the process but it does scare me a little that I'm not there yet. And so we wait while I get heparin 24/7. Baby wipes and dry shampoo are my friend right now.
We are waiting for my INR (Warfarin levels) to get within 2-3. I was at 1.0, 1.1, 1.1, 1.4 and now 1.5. It's going slow but I really hope we can get there soon. When we get there then its no more heparin iv. I just also hope that by that time I can breathe on my own sitting and walking because I really don't want to be sent home with oxygen which they've already been talking about.
So I'll add a little info I never included yet. Heparin is a blood thinner and warfarin is an anticoagulant aka pretty much lessens your risk of blood clotting. This means you have to be extra careful not to bump, bruise or bleed. I also need to maintain a very consistent level of anything containing vitamin K aka green vegetables. I am a big fan of greens and green drinks so eliminating them all together for 6 months as first suggested was not an option for me. I just have to make sure I consume the same every single day. Vitamin K ups the clotting factor so sometimes more warfarin is needed. I also need to eliminate a lot of supplements, some of which I regularly take like flax seed/fish oil, ginger, etc. I remember this medication always listed on just about any other medication I took and always thought it would stink to be on that... and here I am. It is what it is I guess.
Lastly to finally answer how I got this. Simplest answer is its a risk after surgery. However, there is a chance it could have been happening for a while now, developing small clots and this just put it over the edge, especially since I've had breathing trouble for years now. In that regard I somewhat hope that is the case in that 6 months from now should mean I will be able to breathe better than I have in 3 years. Another possibility is it happened from/after plasmapheresis as there is a risk of clotting/bleeding as well as air getting in when pulling the tube out. Lastly, there are several genetic and autoimmune conditions which basically make you prone to PE and you have to be on medication for it all your life. Please pray its not that last one, especially since with one autoimmune condition, or in my case two, you're much more likely to get more and more autoimmune conditions.
I was going to type some thoughts to ponder but at this point this post is pretty long and I'm pretty tired and the biggest reason... I forgot what they were. Perhaps another day. Please pray my INR gets within 2-3, my oxygen saturation stays above 95%, my heart rate stays around 60 and of course that my myasthenia stays under control during all of it... so that I can get the heck out of here as soon as possible. I can't wait to eat some non-processed healthy food!
Thank you for reading, thank you for praying, thank you for your support and thank you for keeping in touch with me! Hugs!
The original plan and everything I've read and been told by every doctor other than my main team is that you need to stay on heparin until the warfarin level reaches therapeutic range otherwise its as if you're not receiving treatment... because heparin only stays in your system about 4-6 hours and warfarin takes at least a few days to kick in. Yet Saturday they decided to stop the heparin and then start the warfarin, going against this. I still don't understand why or like that the surgery team is treating a pulmonary embolism. I'm also seeing neurology, hematology, cardiology and pulmonology... all of which agreed with original plan... and GI but that's most likely, hopefully unrelated. Yet here it is the surgery team making all the decisions and overriding the other decisions.
Saturday night, just hours after stopping heparin I started having a lot of trouble. It was a really really rough night. I was worried. It was just as bad if not worse than in the emergency room. I was coughing to catch my breath, levels were dropping even with oxygen, I could barely sleep because it was so hard to breathe. No one seemed to care. Of course whenever any doctor or nurse would look at my oxygen saturation it would be fairly normal. The primary/surgery team kept seeming to make up excuses to back up their decision to pull the heparin. I don't buy into any of it, especially when the other teams reconfirm my thoughts on this.
Well these oxygen drops went on for a few days. Prior to this I was improving and could walk to the bathroom and back without oxygen... it would drop but I could make it and put the oxygen on upon returning. I was walking the halls with oxygen on. But then Saturday night came and back to oxygen saturation dropping and needing oxygen again while just sitting in bed. They claim it has nothing to do with stopping the heparin... sorry but I call BS.
Well, look who's right. Yesterday I got put back on the heparin drip. Surprise surprise I couldn't do without it. Today I'm doing better again. I am walking the halls without oxygen!! It is still dropping but only occasionally and oxygen brings it back up. My heart rate is still way too high though. And the bad part is the only way I can walk and breathe is either hooked up to heparin iv drip or oxygen. I know I can't rush the process but it does scare me a little that I'm not there yet. And so we wait while I get heparin 24/7. Baby wipes and dry shampoo are my friend right now.
We are waiting for my INR (Warfarin levels) to get within 2-3. I was at 1.0, 1.1, 1.1, 1.4 and now 1.5. It's going slow but I really hope we can get there soon. When we get there then its no more heparin iv. I just also hope that by that time I can breathe on my own sitting and walking because I really don't want to be sent home with oxygen which they've already been talking about.
So I'll add a little info I never included yet. Heparin is a blood thinner and warfarin is an anticoagulant aka pretty much lessens your risk of blood clotting. This means you have to be extra careful not to bump, bruise or bleed. I also need to maintain a very consistent level of anything containing vitamin K aka green vegetables. I am a big fan of greens and green drinks so eliminating them all together for 6 months as first suggested was not an option for me. I just have to make sure I consume the same every single day. Vitamin K ups the clotting factor so sometimes more warfarin is needed. I also need to eliminate a lot of supplements, some of which I regularly take like flax seed/fish oil, ginger, etc. I remember this medication always listed on just about any other medication I took and always thought it would stink to be on that... and here I am. It is what it is I guess.
Lastly to finally answer how I got this. Simplest answer is its a risk after surgery. However, there is a chance it could have been happening for a while now, developing small clots and this just put it over the edge, especially since I've had breathing trouble for years now. In that regard I somewhat hope that is the case in that 6 months from now should mean I will be able to breathe better than I have in 3 years. Another possibility is it happened from/after plasmapheresis as there is a risk of clotting/bleeding as well as air getting in when pulling the tube out. Lastly, there are several genetic and autoimmune conditions which basically make you prone to PE and you have to be on medication for it all your life. Please pray its not that last one, especially since with one autoimmune condition, or in my case two, you're much more likely to get more and more autoimmune conditions.
I was going to type some thoughts to ponder but at this point this post is pretty long and I'm pretty tired and the biggest reason... I forgot what they were. Perhaps another day. Please pray my INR gets within 2-3, my oxygen saturation stays above 95%, my heart rate stays around 60 and of course that my myasthenia stays under control during all of it... so that I can get the heck out of here as soon as possible. I can't wait to eat some non-processed healthy food!
Thank you for reading, thank you for praying, thank you for your support and thank you for keeping in touch with me! Hugs!
Saturday, April 20, 2013
PE update
It seems like I got a little worse before hopefully getting better. Yesterday was a tough day. Oxygen was dropping a lot. Walking to and from the bathroom it dropped to 79... extremely scary. For anyone super healthy and therefore doesn't know too much about vitals and whatnot... goal is 100 for oxygen but for my age it really shouldn't be less than 98. Under 95 is concerning. Under 90 is very dangerous. So I kept telling them this was happening and yet they want me to walk so how am I supposed to do that? One doctor or nurse would basically say I'm making that up and it can't be that low, another would say they would order an oxygen tank to walk with, another said its ok just walk, another said don't walk at all. See the lack of communication at this place and thus the lack of confidence I have in my care here? I kept pushing for an oxygen tank so I could walk (my oxygen is connected to the wall) and it took an entire day to get it because no one was placing the order. The red tape here is also insane.
Then my heart rate. Still pretty scary high but seems like the average rate is slowly going down a bit. Again for those that don't know heart rate for my age and such should be around the 60s at rest, low hundreds when exercising. Well its constantly around the 90s going up to 100s and then upon "exertion" which I put in quotes because my "exertion" is walking a few feet to the bathroom it goes to like 150, past what my exercise level should even be. Again, its a PE thing, but it's scary. Heart palps all the time aren't fun either.
I've started getting more pains... here and there all in my chest. The worst is that blockage feeling though. When you feel like someone placed a baseball in your chest and no air will flow to your lungs, it's not a comforting thing. You don't ever want to experience it, I hope you never do.
As for the care here, myself and my parents have continued talking to the patient-something department people consistantly, yet still it seemed like nothing was getting done. The problem is one doctor says one thing, another says another, no one charts and then nurses do what they want. There is no communication here. And a lack of care feeling from just about everyone. Yesterday I decided if it doesn't improve over the weekend and I'm still here during the week I'm going to be looking to transfer. I felt as if my life really is in jeopardy as each wrong move, lack of attention to patient adds up. The problem to begin with was this is the hospital with the best robotic surgeon, and there are not many of them to begin with- especially experienced in thymectomy which they must be. Then also was needed at the same hospital a neuro experienced in MG. That pretty much left this as the best and almost only option. So here I am. But as we get farther away from surgery, and especially after my stiches get removed the end of this coming week, then the surgery part leaves. Then I just need a hospital experienced in MG which is very hard to find but it just so happens the one across the street is and very top rated.
So then last night after midnight (because I can't get any sleep here) I remembered its my grandma's birthday today. I asked her to please help, please make things better for me. This morning in walks my nurse... same name as my grandmas! And she was so nice to start! I was like, thank you Nani! (what I called my grandma). It's still been a little rough but things seem to be a little better today. I got to talk with the doctor on call who has been better than any of the others I've had for this. She explained everything in a way that was very clear to me. If what she says actually happens, I'll be ok with that. If not (which is what the other doctors say) then I won't. The whole medication is still the biggest problem. When you're dealing with blood thinners, there is not room for error. When you're dealing with PE, there is NOT room for error! I understand adjustments, finding the right rate/dose etc. but not doing the wrong thing because of lack of protocol or care.
So as of now we are continuing the antibiotics and also starting the second blood thinner and pulling the first blood thinner. This all goes against what I was originally told and comfortable with but after talking with the doctor today I just pray it will be ok. When my vitals get stable, rest and while walking, and my blood thinner levels are consistently in therapeutic range then I can get released to continue treatment at home with frequent visits to clinic 3-6 months or life, hopefully not life.
In the mean time, I've been doing a lot. I've been playing basketball... throwing kleenex into the garbage can. I've been teaching the nurses about the equipment/machines I'm using... scary when the patient knows more than they do. I've been keeping the baby wipe companies in business... can't shower with a 24/7 IV infusion. I've even started interior decorating... not too sure they're fond of that one.
But really I'm trying not to think much about this anymore. If God were to pull you, or me, from this world at any moment... I don't know about you but I want to be able to have a clean slate, feel good, be happy- not be upset, depressed, angry, bitter, selfish or any negative qualities. So I'm just doing what I can, how I can, when I can in the way I can. And one thing I can do is blog. I've received multiple messages from other MG patients that they are so happy I shared this because they learned so much or are passing it on to their family/friends to teach them because my site is easily understood. That makes me so happy. I originally said if I can touch one person from this, teach one person or help one person, I will have felt like I did something good. Well, 4000 views, wow. Thank you SO much everyone. Please keep promoting awareness. I know PE is not directly related to MG but it is a known possible risk/complication after thymectomy. If I have to go through it all to help others, then so be it. If I'm still going through it it means I'm strong enough to handle it. (please remind me of that when I say I can't do this anymore)
Smile! :) No really, smile... watch how it can change your day.
Then my heart rate. Still pretty scary high but seems like the average rate is slowly going down a bit. Again for those that don't know heart rate for my age and such should be around the 60s at rest, low hundreds when exercising. Well its constantly around the 90s going up to 100s and then upon "exertion" which I put in quotes because my "exertion" is walking a few feet to the bathroom it goes to like 150, past what my exercise level should even be. Again, its a PE thing, but it's scary. Heart palps all the time aren't fun either.
I've started getting more pains... here and there all in my chest. The worst is that blockage feeling though. When you feel like someone placed a baseball in your chest and no air will flow to your lungs, it's not a comforting thing. You don't ever want to experience it, I hope you never do.
As for the care here, myself and my parents have continued talking to the patient-something department people consistantly, yet still it seemed like nothing was getting done. The problem is one doctor says one thing, another says another, no one charts and then nurses do what they want. There is no communication here. And a lack of care feeling from just about everyone. Yesterday I decided if it doesn't improve over the weekend and I'm still here during the week I'm going to be looking to transfer. I felt as if my life really is in jeopardy as each wrong move, lack of attention to patient adds up. The problem to begin with was this is the hospital with the best robotic surgeon, and there are not many of them to begin with- especially experienced in thymectomy which they must be. Then also was needed at the same hospital a neuro experienced in MG. That pretty much left this as the best and almost only option. So here I am. But as we get farther away from surgery, and especially after my stiches get removed the end of this coming week, then the surgery part leaves. Then I just need a hospital experienced in MG which is very hard to find but it just so happens the one across the street is and very top rated.
So then last night after midnight (because I can't get any sleep here) I remembered its my grandma's birthday today. I asked her to please help, please make things better for me. This morning in walks my nurse... same name as my grandmas! And she was so nice to start! I was like, thank you Nani! (what I called my grandma). It's still been a little rough but things seem to be a little better today. I got to talk with the doctor on call who has been better than any of the others I've had for this. She explained everything in a way that was very clear to me. If what she says actually happens, I'll be ok with that. If not (which is what the other doctors say) then I won't. The whole medication is still the biggest problem. When you're dealing with blood thinners, there is not room for error. When you're dealing with PE, there is NOT room for error! I understand adjustments, finding the right rate/dose etc. but not doing the wrong thing because of lack of protocol or care.
So as of now we are continuing the antibiotics and also starting the second blood thinner and pulling the first blood thinner. This all goes against what I was originally told and comfortable with but after talking with the doctor today I just pray it will be ok. When my vitals get stable, rest and while walking, and my blood thinner levels are consistently in therapeutic range then I can get released to continue treatment at home with frequent visits to clinic 3-6 months or life, hopefully not life.
In the mean time, I've been doing a lot. I've been playing basketball... throwing kleenex into the garbage can. I've been teaching the nurses about the equipment/machines I'm using... scary when the patient knows more than they do. I've been keeping the baby wipe companies in business... can't shower with a 24/7 IV infusion. I've even started interior decorating... not too sure they're fond of that one.
But really I'm trying not to think much about this anymore. If God were to pull you, or me, from this world at any moment... I don't know about you but I want to be able to have a clean slate, feel good, be happy- not be upset, depressed, angry, bitter, selfish or any negative qualities. So I'm just doing what I can, how I can, when I can in the way I can. And one thing I can do is blog. I've received multiple messages from other MG patients that they are so happy I shared this because they learned so much or are passing it on to their family/friends to teach them because my site is easily understood. That makes me so happy. I originally said if I can touch one person from this, teach one person or help one person, I will have felt like I did something good. Well, 4000 views, wow. Thank you SO much everyone. Please keep promoting awareness. I know PE is not directly related to MG but it is a known possible risk/complication after thymectomy. If I have to go through it all to help others, then so be it. If I'm still going through it it means I'm strong enough to handle it. (please remind me of that when I say I can't do this anymore)
Smile! :) No really, smile... watch how it can change your day.
Thursday, April 18, 2013
Pulmonary Embolism
I last wrote on Saturday. I was hoping to go home soon. Saturday I had nausea so they kept me. Sunday I had increased breathing trouble so they kept me. Both nights I needed to get back on oxygen. I kept saying I'm having more breathing trouble, I kept requesting imaging of my chest/lungs but they kept refusing. On Monday they sent me home. My breathing trouble was still happening. I couldn't sleep much and definitely not laying flat- not because of the surgery pain but because of the breathing.
Wednesday morning I awoke to absolutely horrible breathing trouble... the worst I've ever felt besides coming out of surgery. It was as if there was a blockage stopping my air from going all the way. I didn't know what to do and all that went through my head was I really don't want to put my parents through any more trips to the hospital. But I decided to email my doctor. Though my surgeon was the one most recently treating me, something told me not to email his team but instead to email my neurologist. If I thought it was a serious emergency I would have gone to the ER or at least called, but I thought most likely would be MG getting worse and I need more plasmapheresis or pain/breathing trouble from the surgery. My neurologist emailed right back telling me to go right to the ER, and better if I'm able to get to the one at the hospital I was at because they know my case. Off we went.
They took me in to the ER immediately and did an EKG- normal for anything that even involves chest pain. Then they took vitals and found I had a fever. Next I was put on a bed, tons of blood was drawn and a chest xray was taken. Before any of that even happened, I constantly insisted I get a chest and possibly even abdominal CT. I was not going to leave until they did that. Well the blood work was fairly normal but the chest xray showed abnormality they couldn't quite make out so they said they would do the chest CT. Thank God. Laying on the table getting injected with dye I thought it'll be normal and we'll move on to figuring out what else it could be, but in the back of my mind lied pulmonary embolism. Literally minutes after returning to my ER room, the doctor came in. When the doctor comes in quickly you know its bad news. She said "You have a PE." (pulmonary embolism) Without thinking, words spewed out of my mouth saying "Oh my God, I'm going to die."
Then doctor after doctor came in and all I could do was cry. Why? Why God? Why another thing? Why something so serious? When if ever will things turn around for me? At one point I did say to one of the doctors I don't want to fight anymore. I said I've been fighting for 3 years and it gets too hard and I don't want to fight. They said I have to keep fighting. I listened.
My PE has multiple blood clots in my lungs- not one, not two- many on both sides of both lungs. In addition to the PE I also have a lung infection and/or collapsed lung. This means 2 blood thinners for the PE, 2 antibiotics for the infection, and an antifungal to counteract/try to prevent recurrent thrush. Once again this hospital proved to be a joke. My ER nurse was really mean. To start the blood thinners they had to give me a shot in the stomach. The shot itself isn't too bad but the injection burns and hurts a whole lot. I was scared about it and she yelled at me and told me it's not funny anymore. I told her I'm not trying to be funny I'm scared. She basically said she doesn't care and she has 3 other patients. Oh really. Well that was the last string for me. I was already upset and couldn't take it anymore. I said if she didn't want to deal with patients being scared and in pain she shouldn't have become a nurse. I said of course she has 4 other patients, that's her job, and right now I am her patient and that is her job. Again if she didn't want to deal with any of this and wants to complain about 4 whole patients, don't become a nurse. By the time she gave me the shot I was terrified she was going to make it hurt on purpose. Oh it hurt... for a while. Then the nurse tried to put me on antibiotics that are on the no for MG list after the doctor said he was changing them to something else. So she decided she would do the other one. Even that one I said was not the one the doctor told me. She just continued to have attitude and not listen to the patient, as they all seem to do here. She was having lots of troubles hooking it up and just after it started in ran the doctor again saying that's not the right medication. Wow. I just kept saying "stop the iv stop the iv" until they did. Unbelievable. Finally they figured out which antibiotics to start me on and would start them in the morning. All that for nothing.
So I get readmitted and they then decide to switch me from the blood thinner shots to the blood thinner iv drip. I said that's fine but I already got the shot so shouldn't the iv drop start at my next due dose tomorrow. They again didn't care what I had to say and basically decided to double dose me. Doesn't sound smart when I bleed and bruise easily, which I discovered can happen concurrently with blood clots. I'm also on oxygen and hooked up to a monitor for heart rate and oxygen level. My heart rate has been ridiculous. No lower than low 70s and barely ever there. Mostly high 90s and 100 something all the way to 150. They said that's what PE does.
I'm still 3.5 weeks later, 3 admissions later, having issues with the nurses and my medications. They try to tell me I can't have my MG med, try to refuse me tylenol and give me something stronger that makes my MG worse. Last night all night the nurse fought me on it. I got no sleep, maybe 1 hour. I'm exhausted. Every time they say they'll get it straightened out and every time it happens again. I'm astonished. Today my parents and I talked to some people who have something to do with patient relations or advocacy or administration or something. Anyways we explained everything, nothing left to imagination. I think they were shocked to hear us be so blunt but thanked us saying otherwise they never know. We saw them talk with the nurse. I just hope this resolves something, but I can't hold my breath... no literally, I can't that wouldn't be a good idea, haha.
So the plan right now is to continue to blood thinner drip and give me antibiotics and antifungal. I can't start the blood thinner pill til the antibiotics are out of my system because they interact. At some point they might switch me from the iv drip back to the shots because the shots can be done at home. Once the antibiotics are out of my system they will start the blood thinner pill and once that reaches a certain level they will discontinue the iv drip and/or shots. The point is the drip/shots work quickly but the pill doesn't. They want something quickly in my system until the pills kick in and then I can continue pills at home. I will have to be on the blood thinner pills 3-6 months and if that doesn't work, possibly for life. They said once my symptoms and vitals become stable they can send me home so I can do treatment at home rather than staying here. But I have to return anywhere from every couple days to every couple weeks to get everything checked because of all the risks involved with all of this.
I'm fairly stable right now all things considered, not stable enough to go home but stable. On oxygen my oxygen level is normal, my heart rate isn't stable but seems to be slightly decreasing with time/blood thinners, my breathing feels a little better, still hard. My chest pain is still there but not quite as bad. The biggest/best thing is my MG symptoms seem so much better!!! I can actually hold my leg up in the air (sounds weird but I couldn't do that before). I can walk a bit longer, last a bit longer. We don't know if its from the plasmapheresis or I'm a rare one that the thymectomy brings on improvement immediately rather than months to years later. Either way it is a very good thing I'm MG stable because of everything else going on. I still pray I'm going into permanent remission but even just improvement enough to get me through all this PE stuff I'll be grateful for.
I'm trying to remain positive, not worry or even think much about all this. But that doesn't mean its not scary. It doesn't mean I didn't initially totally freak. It doesn't mean I'm not sad. I have the right to all my emotions, but I try to let them come and go and remain level headed. I think I have an angel watching over me. Yesterday morning when I had such breathing trouble I thought I should contact my surgeon whos most recently overseeing me or my neuro. Something told me not to contact the surgeon, instead to contact the neuro. My neuro may have saved my life by insisting I immediately go to the ER. I have a feeling my surgeon would have said it was surgery related and let it pass... it wouldn't have passed though. And then when I was trying to figure out what to do the outside started pouring enormous size hail... it was absolutely insane! I thought how the heck would we drive in this. And my dad was out golfing. But because of the hail he came home, and shortly after the hail stopped. Everything cleared for us to drive to the ER. Then once there with the nurse almost putting me on the wrong meds but the machine acting up and thus my not receiving much med before the dr said stop. God certainly is watching over me in the midst of all this struggle.
I should probably try to sleep now. Hopefully I can and they only wake me up about 6 times instead of 100. Anyways, I want to add, right now more than ever (and yes I've said that before but it continues to add on)... right now more than ever I could use support... from family- all family, friends- all friends. I admit I am the type of person who really needs to hear/see that people care, and it GREATLY helps me. There are a lot of people I really miss, and I don't know if they even know or really even care. But if you are someone who's stopped talking to me, barely talks to me anymore or changed your relationship/communication pattern/interaction with me- you are probably one of the ones I miss. I pray every day for certain people to reenter my life, for relationships to be strengthened, renewed, reconciled, for love, for forgiveness, for peace. I pray that it happens soon and that it happens while it still can. Life is precious. Yours, mine, everyones. Peace be with you all. Always.
Wednesday morning I awoke to absolutely horrible breathing trouble... the worst I've ever felt besides coming out of surgery. It was as if there was a blockage stopping my air from going all the way. I didn't know what to do and all that went through my head was I really don't want to put my parents through any more trips to the hospital. But I decided to email my doctor. Though my surgeon was the one most recently treating me, something told me not to email his team but instead to email my neurologist. If I thought it was a serious emergency I would have gone to the ER or at least called, but I thought most likely would be MG getting worse and I need more plasmapheresis or pain/breathing trouble from the surgery. My neurologist emailed right back telling me to go right to the ER, and better if I'm able to get to the one at the hospital I was at because they know my case. Off we went.
They took me in to the ER immediately and did an EKG- normal for anything that even involves chest pain. Then they took vitals and found I had a fever. Next I was put on a bed, tons of blood was drawn and a chest xray was taken. Before any of that even happened, I constantly insisted I get a chest and possibly even abdominal CT. I was not going to leave until they did that. Well the blood work was fairly normal but the chest xray showed abnormality they couldn't quite make out so they said they would do the chest CT. Thank God. Laying on the table getting injected with dye I thought it'll be normal and we'll move on to figuring out what else it could be, but in the back of my mind lied pulmonary embolism. Literally minutes after returning to my ER room, the doctor came in. When the doctor comes in quickly you know its bad news. She said "You have a PE." (pulmonary embolism) Without thinking, words spewed out of my mouth saying "Oh my God, I'm going to die."
Then doctor after doctor came in and all I could do was cry. Why? Why God? Why another thing? Why something so serious? When if ever will things turn around for me? At one point I did say to one of the doctors I don't want to fight anymore. I said I've been fighting for 3 years and it gets too hard and I don't want to fight. They said I have to keep fighting. I listened.
My PE has multiple blood clots in my lungs- not one, not two- many on both sides of both lungs. In addition to the PE I also have a lung infection and/or collapsed lung. This means 2 blood thinners for the PE, 2 antibiotics for the infection, and an antifungal to counteract/try to prevent recurrent thrush. Once again this hospital proved to be a joke. My ER nurse was really mean. To start the blood thinners they had to give me a shot in the stomach. The shot itself isn't too bad but the injection burns and hurts a whole lot. I was scared about it and she yelled at me and told me it's not funny anymore. I told her I'm not trying to be funny I'm scared. She basically said she doesn't care and she has 3 other patients. Oh really. Well that was the last string for me. I was already upset and couldn't take it anymore. I said if she didn't want to deal with patients being scared and in pain she shouldn't have become a nurse. I said of course she has 4 other patients, that's her job, and right now I am her patient and that is her job. Again if she didn't want to deal with any of this and wants to complain about 4 whole patients, don't become a nurse. By the time she gave me the shot I was terrified she was going to make it hurt on purpose. Oh it hurt... for a while. Then the nurse tried to put me on antibiotics that are on the no for MG list after the doctor said he was changing them to something else. So she decided she would do the other one. Even that one I said was not the one the doctor told me. She just continued to have attitude and not listen to the patient, as they all seem to do here. She was having lots of troubles hooking it up and just after it started in ran the doctor again saying that's not the right medication. Wow. I just kept saying "stop the iv stop the iv" until they did. Unbelievable. Finally they figured out which antibiotics to start me on and would start them in the morning. All that for nothing.
So I get readmitted and they then decide to switch me from the blood thinner shots to the blood thinner iv drip. I said that's fine but I already got the shot so shouldn't the iv drop start at my next due dose tomorrow. They again didn't care what I had to say and basically decided to double dose me. Doesn't sound smart when I bleed and bruise easily, which I discovered can happen concurrently with blood clots. I'm also on oxygen and hooked up to a monitor for heart rate and oxygen level. My heart rate has been ridiculous. No lower than low 70s and barely ever there. Mostly high 90s and 100 something all the way to 150. They said that's what PE does.
I'm still 3.5 weeks later, 3 admissions later, having issues with the nurses and my medications. They try to tell me I can't have my MG med, try to refuse me tylenol and give me something stronger that makes my MG worse. Last night all night the nurse fought me on it. I got no sleep, maybe 1 hour. I'm exhausted. Every time they say they'll get it straightened out and every time it happens again. I'm astonished. Today my parents and I talked to some people who have something to do with patient relations or advocacy or administration or something. Anyways we explained everything, nothing left to imagination. I think they were shocked to hear us be so blunt but thanked us saying otherwise they never know. We saw them talk with the nurse. I just hope this resolves something, but I can't hold my breath... no literally, I can't that wouldn't be a good idea, haha.
So the plan right now is to continue to blood thinner drip and give me antibiotics and antifungal. I can't start the blood thinner pill til the antibiotics are out of my system because they interact. At some point they might switch me from the iv drip back to the shots because the shots can be done at home. Once the antibiotics are out of my system they will start the blood thinner pill and once that reaches a certain level they will discontinue the iv drip and/or shots. The point is the drip/shots work quickly but the pill doesn't. They want something quickly in my system until the pills kick in and then I can continue pills at home. I will have to be on the blood thinner pills 3-6 months and if that doesn't work, possibly for life. They said once my symptoms and vitals become stable they can send me home so I can do treatment at home rather than staying here. But I have to return anywhere from every couple days to every couple weeks to get everything checked because of all the risks involved with all of this.
I'm fairly stable right now all things considered, not stable enough to go home but stable. On oxygen my oxygen level is normal, my heart rate isn't stable but seems to be slightly decreasing with time/blood thinners, my breathing feels a little better, still hard. My chest pain is still there but not quite as bad. The biggest/best thing is my MG symptoms seem so much better!!! I can actually hold my leg up in the air (sounds weird but I couldn't do that before). I can walk a bit longer, last a bit longer. We don't know if its from the plasmapheresis or I'm a rare one that the thymectomy brings on improvement immediately rather than months to years later. Either way it is a very good thing I'm MG stable because of everything else going on. I still pray I'm going into permanent remission but even just improvement enough to get me through all this PE stuff I'll be grateful for.
I'm trying to remain positive, not worry or even think much about all this. But that doesn't mean its not scary. It doesn't mean I didn't initially totally freak. It doesn't mean I'm not sad. I have the right to all my emotions, but I try to let them come and go and remain level headed. I think I have an angel watching over me. Yesterday morning when I had such breathing trouble I thought I should contact my surgeon whos most recently overseeing me or my neuro. Something told me not to contact the surgeon, instead to contact the neuro. My neuro may have saved my life by insisting I immediately go to the ER. I have a feeling my surgeon would have said it was surgery related and let it pass... it wouldn't have passed though. And then when I was trying to figure out what to do the outside started pouring enormous size hail... it was absolutely insane! I thought how the heck would we drive in this. And my dad was out golfing. But because of the hail he came home, and shortly after the hail stopped. Everything cleared for us to drive to the ER. Then once there with the nurse almost putting me on the wrong meds but the machine acting up and thus my not receiving much med before the dr said stop. God certainly is watching over me in the midst of all this struggle.
I should probably try to sleep now. Hopefully I can and they only wake me up about 6 times instead of 100. Anyways, I want to add, right now more than ever (and yes I've said that before but it continues to add on)... right now more than ever I could use support... from family- all family, friends- all friends. I admit I am the type of person who really needs to hear/see that people care, and it GREATLY helps me. There are a lot of people I really miss, and I don't know if they even know or really even care. But if you are someone who's stopped talking to me, barely talks to me anymore or changed your relationship/communication pattern/interaction with me- you are probably one of the ones I miss. I pray every day for certain people to reenter my life, for relationships to be strengthened, renewed, reconciled, for love, for forgiveness, for peace. I pray that it happens soon and that it happens while it still can. Life is precious. Yours, mine, everyones. Peace be with you all. Always.
Saturday, April 13, 2013
Goodbye Thymus!
Hi everyone!! This is the first day I've had my laptop... first day I was strong enough to use it. I couldn't wait to get on here and blog lol... I really do love writing.
So, my thymus is gone!! Woooo! I waited so long for that day to come, what a relief for it to be over with. Tuesday morning I had to be at the hospital at 5:15am. It was a very stressful start. Stress 1- The house alarm went off at 3am... quite the wake up call... no worries though just the storm. Stress 2- Then we get to the hospital only to find the doors locked and a sign saying they open at 5:30am. Well excuse me but I was very clearly told to go through the main doors at 5:15am and that the doors would be open. Fortunately, there was a security woman nearby who let us and another women in the same problem inside. Stress 3- Because they technically "weren't open" yet there were no wheelchairs around. The worst thing for me to do would be in addition to all these stressors, walk my way up to where I needed to report to and exhaust myself right before surgery. I sat down as my mom insisted the security guard find a wheel chair. She called transportation only to tell my mom there was no answer and they must not be there yet. My mom told her that there has to be a wheel chair somewhere, perhaps ER, and someone needs to bring it over here. So we finally got the wheel chair and got me to where I needed to report to just in time. Stress 4- The receptionist asked my name, looked through the binders of patients charts and mine wasn't there. Not what I needed to hear, but luckily they finally found me. Time after time this hospital proves to just not have it together. But again I reminded myself I'm here for the surgeon, nothing else.
So they prepped me, kicked my mom and dad out, and said they were giving me my "first cocktail to make you a little tipsy." I guess it was something to begin the anesthesia/sedation process as they wheeled me through the white halls. Then they strapped me down to the surgery table, marked my surgery site and the last thing I remember is them putting a mask on me. About 3 hours later I remember waking up as they took the breathing tube out. The first thought that went through my head was "I made it, Oh my God I'm alive." I didn't doubt this surgeon's ability but there is never any promise of anything. I then remember them wheeling me through the halls to icu as I was thinking to myself I really want to start a conversation with every person we pass but I probably shouldn't. Oh the fun times of anesthesia. They put an oxygen mask on me and I don't remember much else.
About an hour and a half later I finally asked if my parents were allowed to see me yet. The nurse told me they had no contact for them. I said yes they do and I will tell them the number again. I did and they called and moments later my parents arrived. My parents were never told they could come see me, they had no idea! Goodness this hospital is a mess. But my parents were visited by the surgeon after surgery and they told me the surgeon said everything went as well as it could have, no complications. Thank you God! How amazing! But, the surgeon said my thymus actually was enlarged! See some people with MG have an enlarged and/or tumorous/cancerous thymus... and in those cases there is no option, your thymus must be removed. On my CT that was 7 months ago it showed my thymus as very small, thus this surgery was an option not a requirement. At that time I was told if I didn't choose surgery that I need to get a repeat CT every 6 months to check if it changes. When I told that to them around the 6 month mark they said it's ok we don't need to. So we had no idea it had enlarged in that time... meaning I would have needed to get this surgery even if I didn't want to! The good news is the surgeon thinks that since it was enlarged there is a good chance it had to do with how bad my MG was and thus a better chance of improvement or remission in my future by having it taken out! (It is still pretty much a guessing game as to how/why/if the thymus really does affect MG but they find removing it can help).
The first 2 days I couldn't eat on my own... I mean I could swallow luckily since MG affects swallowing but the pain from the surgery and chest tube was horrible and I was too weak to lift my arms to eat. I was confined to the bed and experienced my first sponge bath the second day. Oh how fun. So needless to say I wasn't using the computer or phone or anything, pretty much just laying there sleeping when I could. Removing the chest tube was horrible! Ahh! They gave me extra pain meds right before and it still really hurt and then felt so weird like there was a huge hole in my chest... which pretty much there was. I was picturing this little tube like the size of an IV... well it was a tube that was like half the size of my wrist! How that fit through my ribs I have no idea. The next day they removed the catheter and after that I was helped up for the first time. Honestly, I was pretty amazed at how strong my legs were... not strong as normal people know, but strong in regards to MG and just coming out of surgery. And then yesterday I was walking around the room on my own for short periods of time. Also, yesterday I was moved out of ICU. Apparently I would have been moved possibly 1 day sooner but my surgeon was insisting on a private room and none were available in the step down unit. Well my new room is enormous!! Apparently this is the room they use for Bariatric surgery patients. There is another bed in here set aside that expands to 3 times the size of a real bed, and another toilet in here about 3 times the size, and a thing on the ceiling that is a lift from the bed to the bathroom to move the patient. I guess it's the only room they had, or my surgeon is really nice to me and gave me lots of space. Though my dad says I should just tell people that Bariatric surgery REALLY worked for me!
The worse part is figuring out how to control my pain. Because so many meds make MG worse and on top of that I have extreme sensitivity to meds, theres barely anything out there for me. They would only give me a very low dose of morphene and it really didn't help. Then they tried something else that also didn't help. So I finally asked for regular tylenol but a higher dosage. It's helping slightly but we really don't know what else to do. This morning my nurse insisted I try norco again and I didn't want to but listened to her. Well that was before eating breakfast and then shortly after breakfast I started feeling really sick. I couldn't eat lunch and have just been sipping gingerale and snacking on crackers. I'm not sure if it was the norco on an empty stomach (that I tell them I shouldn't do but they insist its ok) or the bad food here again, or side effects of anesthesia or something else. Regardless, the nausea along with the pain and still some breathing issues made my doctor decide he wants to keep me here longer to monitor me. Originally he thought I might get to go home today. I want to go home (or parents home rather), but I want to be well before that happens, so I'm ok with staying until then. The pain is a little better at my surgery and chest tube site but I've developed this pain on the other side of my chest/upper abdomen that feelings like a blockage to my getting a full breath. They were doing xrays the first couple days because there is a high risk of pneumonia after this surgery, but ever since the pain they haven't done another xray. It's like hello I'm having new onset chest pain on the opposite side, I can't breathe quite right and I've had pneumonia twice before... perhaps you should do an xray to make sure! No one listens to me. So I'm just hoping that pain and the stomach pain/nausea go away... and of course the surgery pain but I know that will take longer.
The good news is my vitals have been fairly stable, which is not normal for me. My blood pressure was actually 100something over 70something today! Crazy! My fever went away since asking everyone for prayer about that, thankful. Blood test results are fairly normal but that's another thing I wish they would test after new symptoms come on. I hate having unexplained symptoms. The other good news is apparently I have good genes... once again people think I'm like 18 if that. I've heard as low as 14... that's half my age! I mean I'm sure I look younger without make up but geeze. Hopefully those good genes will show up when I'm 40...better yet how about 80! And then there's a moment I have to share that I couldn't help but laugh. My surgeon, an Italian man, comes in with his "team", two other Italian men. The surgeon says he wants to listen to my lungs, you know to me that means he walks over and puts the thing up to me for a listen. Well instead all 3 walked over so I have 3 Italian men hovering above me. One says "how should we do this?" Another starts unsnapping my gown, and then my surgeon moves in for a listen. I don't know why this was funny but I couldn't help but laugh at the situation and my mom found it humorous as well.
So, overall my stay at this hospital has not been a pleasant one, BUT with that said I have zero regrets. It seems as if my surgeon did an amazing job and that's what matters. He also takes good care of me and basically whatever he says goes. Everyone here knows him to be the BEST doctor and you're almost treated better once they know he's your surgeon. The fact that he resembles a younger version of my grandpa makes it all the more comforting that I made the right choice. Only time will tell if this surgery did me any good, but at least I can't look back and say I wish I did that while I could. I did it, and I did it within the 3 year mark of onset- 3 years to the date.
Thank you again SO much to everyone who has been so supportive. When my mom posted updates to my facebook and saw that I had over 60 "likes" it made me smile LOL. It made me smile because 60 people care enough to "like" that my surgery went well. To those 60 and so many more than aren't on facebook, thank you. This battle is not over, but you all have helped move me further through it. Blessings and much love to you all.
The best has yet to come.
So, my thymus is gone!! Woooo! I waited so long for that day to come, what a relief for it to be over with. Tuesday morning I had to be at the hospital at 5:15am. It was a very stressful start. Stress 1- The house alarm went off at 3am... quite the wake up call... no worries though just the storm. Stress 2- Then we get to the hospital only to find the doors locked and a sign saying they open at 5:30am. Well excuse me but I was very clearly told to go through the main doors at 5:15am and that the doors would be open. Fortunately, there was a security woman nearby who let us and another women in the same problem inside. Stress 3- Because they technically "weren't open" yet there were no wheelchairs around. The worst thing for me to do would be in addition to all these stressors, walk my way up to where I needed to report to and exhaust myself right before surgery. I sat down as my mom insisted the security guard find a wheel chair. She called transportation only to tell my mom there was no answer and they must not be there yet. My mom told her that there has to be a wheel chair somewhere, perhaps ER, and someone needs to bring it over here. So we finally got the wheel chair and got me to where I needed to report to just in time. Stress 4- The receptionist asked my name, looked through the binders of patients charts and mine wasn't there. Not what I needed to hear, but luckily they finally found me. Time after time this hospital proves to just not have it together. But again I reminded myself I'm here for the surgeon, nothing else.
So they prepped me, kicked my mom and dad out, and said they were giving me my "first cocktail to make you a little tipsy." I guess it was something to begin the anesthesia/sedation process as they wheeled me through the white halls. Then they strapped me down to the surgery table, marked my surgery site and the last thing I remember is them putting a mask on me. About 3 hours later I remember waking up as they took the breathing tube out. The first thought that went through my head was "I made it, Oh my God I'm alive." I didn't doubt this surgeon's ability but there is never any promise of anything. I then remember them wheeling me through the halls to icu as I was thinking to myself I really want to start a conversation with every person we pass but I probably shouldn't. Oh the fun times of anesthesia. They put an oxygen mask on me and I don't remember much else.
About an hour and a half later I finally asked if my parents were allowed to see me yet. The nurse told me they had no contact for them. I said yes they do and I will tell them the number again. I did and they called and moments later my parents arrived. My parents were never told they could come see me, they had no idea! Goodness this hospital is a mess. But my parents were visited by the surgeon after surgery and they told me the surgeon said everything went as well as it could have, no complications. Thank you God! How amazing! But, the surgeon said my thymus actually was enlarged! See some people with MG have an enlarged and/or tumorous/cancerous thymus... and in those cases there is no option, your thymus must be removed. On my CT that was 7 months ago it showed my thymus as very small, thus this surgery was an option not a requirement. At that time I was told if I didn't choose surgery that I need to get a repeat CT every 6 months to check if it changes. When I told that to them around the 6 month mark they said it's ok we don't need to. So we had no idea it had enlarged in that time... meaning I would have needed to get this surgery even if I didn't want to! The good news is the surgeon thinks that since it was enlarged there is a good chance it had to do with how bad my MG was and thus a better chance of improvement or remission in my future by having it taken out! (It is still pretty much a guessing game as to how/why/if the thymus really does affect MG but they find removing it can help).
The first 2 days I couldn't eat on my own... I mean I could swallow luckily since MG affects swallowing but the pain from the surgery and chest tube was horrible and I was too weak to lift my arms to eat. I was confined to the bed and experienced my first sponge bath the second day. Oh how fun. So needless to say I wasn't using the computer or phone or anything, pretty much just laying there sleeping when I could. Removing the chest tube was horrible! Ahh! They gave me extra pain meds right before and it still really hurt and then felt so weird like there was a huge hole in my chest... which pretty much there was. I was picturing this little tube like the size of an IV... well it was a tube that was like half the size of my wrist! How that fit through my ribs I have no idea. The next day they removed the catheter and after that I was helped up for the first time. Honestly, I was pretty amazed at how strong my legs were... not strong as normal people know, but strong in regards to MG and just coming out of surgery. And then yesterday I was walking around the room on my own for short periods of time. Also, yesterday I was moved out of ICU. Apparently I would have been moved possibly 1 day sooner but my surgeon was insisting on a private room and none were available in the step down unit. Well my new room is enormous!! Apparently this is the room they use for Bariatric surgery patients. There is another bed in here set aside that expands to 3 times the size of a real bed, and another toilet in here about 3 times the size, and a thing on the ceiling that is a lift from the bed to the bathroom to move the patient. I guess it's the only room they had, or my surgeon is really nice to me and gave me lots of space. Though my dad says I should just tell people that Bariatric surgery REALLY worked for me!
The worse part is figuring out how to control my pain. Because so many meds make MG worse and on top of that I have extreme sensitivity to meds, theres barely anything out there for me. They would only give me a very low dose of morphene and it really didn't help. Then they tried something else that also didn't help. So I finally asked for regular tylenol but a higher dosage. It's helping slightly but we really don't know what else to do. This morning my nurse insisted I try norco again and I didn't want to but listened to her. Well that was before eating breakfast and then shortly after breakfast I started feeling really sick. I couldn't eat lunch and have just been sipping gingerale and snacking on crackers. I'm not sure if it was the norco on an empty stomach (that I tell them I shouldn't do but they insist its ok) or the bad food here again, or side effects of anesthesia or something else. Regardless, the nausea along with the pain and still some breathing issues made my doctor decide he wants to keep me here longer to monitor me. Originally he thought I might get to go home today. I want to go home (or parents home rather), but I want to be well before that happens, so I'm ok with staying until then. The pain is a little better at my surgery and chest tube site but I've developed this pain on the other side of my chest/upper abdomen that feelings like a blockage to my getting a full breath. They were doing xrays the first couple days because there is a high risk of pneumonia after this surgery, but ever since the pain they haven't done another xray. It's like hello I'm having new onset chest pain on the opposite side, I can't breathe quite right and I've had pneumonia twice before... perhaps you should do an xray to make sure! No one listens to me. So I'm just hoping that pain and the stomach pain/nausea go away... and of course the surgery pain but I know that will take longer.
The good news is my vitals have been fairly stable, which is not normal for me. My blood pressure was actually 100something over 70something today! Crazy! My fever went away since asking everyone for prayer about that, thankful. Blood test results are fairly normal but that's another thing I wish they would test after new symptoms come on. I hate having unexplained symptoms. The other good news is apparently I have good genes... once again people think I'm like 18 if that. I've heard as low as 14... that's half my age! I mean I'm sure I look younger without make up but geeze. Hopefully those good genes will show up when I'm 40...better yet how about 80! And then there's a moment I have to share that I couldn't help but laugh. My surgeon, an Italian man, comes in with his "team", two other Italian men. The surgeon says he wants to listen to my lungs, you know to me that means he walks over and puts the thing up to me for a listen. Well instead all 3 walked over so I have 3 Italian men hovering above me. One says "how should we do this?" Another starts unsnapping my gown, and then my surgeon moves in for a listen. I don't know why this was funny but I couldn't help but laugh at the situation and my mom found it humorous as well.
So, overall my stay at this hospital has not been a pleasant one, BUT with that said I have zero regrets. It seems as if my surgeon did an amazing job and that's what matters. He also takes good care of me and basically whatever he says goes. Everyone here knows him to be the BEST doctor and you're almost treated better once they know he's your surgeon. The fact that he resembles a younger version of my grandpa makes it all the more comforting that I made the right choice. Only time will tell if this surgery did me any good, but at least I can't look back and say I wish I did that while I could. I did it, and I did it within the 3 year mark of onset- 3 years to the date.
Thank you again SO much to everyone who has been so supportive. When my mom posted updates to my facebook and saw that I had over 60 "likes" it made me smile LOL. It made me smile because 60 people care enough to "like" that my surgery went well. To those 60 and so many more than aren't on facebook, thank you. This battle is not over, but you all have helped move me further through it. Blessings and much love to you all.
The best has yet to come.
Sunday, April 7, 2013
Home for a few days
Well I get a few days at home in between the end of the plasmapheresis treatments and the surgery. It's so nice to sleep in a more comfortable bed, eat much better food and get a few things done. I say this time and time again, but really don't take anything for granted. Those "little" things turn out to be the most important.
So Friday was such a stressful day. I had a new nurse and yet again my medication was messed up. I think it is absolutely ridiculous that pharmacy only sends like 1 dose down to the floor at a time. When I need that does every 3.5 hours, being even 20 minutes off is a problem let alone the 2 hours I had to wait the other night. Ridiculous. On top of that even after almost 2 weeks there I still had a nurse argue me almost every single day on when I need to take my meds. I hate when they do that. I am mentally with it and I know when I take my meds. Good thing I am mentally with it, God help all the people that aren't and are probably over or under medicated or given the wrong thing. I mean one night I was woken up to take codeine- codeine in the middle of the night with no food, when I have GI problems, and having never taken it before. I wasn't even in pain. Un-be-lieve-a-ble!! This hospital stay was the absolute worst I've encountered to say the least. And that's from someone who's been in 4 different hospitals in just over a year.
Anyways, then the food made me feel sick again- 4th time. And then they finally removed the line- hours after they said they would. It was just kind of a weird experience, not painful though fortunately. The doctor prepped me, then basically told me to hum and hold it until he told me to stop as he pulled out the line. They said that was so no air gets in- I don't know how it works, but I listened. Line was out and he put pressure against me for a while, then bandaged me up and had me lay flat for 30 minutes. I don't know the reason behind that either but I'm guessing to clot the blood or make sure I don't faint or all of the above. About an hour and half after going down to IR I was taken back to my room. But then I got really lightheaded and my blood pressure dropped again. Could be from getting sick from the food earlier. So they put my feet above my head once again. My dad got me a delicous Fontano's sub and after eating my blood pressure went up enough and they prepared everything to discharge me. I got home shortly after 8pm... and was surprised by flowers waiting for me :) Thank you.
Just in time to celebrate my birthday at home!! I mean there was talk of a super awesome hospital party in the works... but I think sleeping in a comfortable bed with good food beats that. All things considered, it was a pretty darn good day. Starbucks at breakfast, got some flowers and balloons, and got to GO OUT for dinner!! That's kind of a big deal lol. Those moments I feel strong enough to go out are just about the best. My day was filled with a bunch of little things that made me smile. Thank you to everyone who sent messages, texts, calls, cards, flowers, etc. and made my birthday special.
Today I've been trying to get stuff done- you know super fun medical bills/claims... and laundry. Probably shouldn't have done as much as I did so soon because I'm already feeling it. I just hope it doesn't set me back and that all goes well to go into surgery. Really that's all I'm focused on at this point. Just get me to the OR and operate. I have waited and waited and once this is over I will be so very happy. I will no longer be quite as concerned with making sure I stay far away from anyone with the slightest cold, and no longer have to fear that a flair up will delay this, and can hopefully move forward in life with remission around the corner- hopeful!! Of course they want to put me on immune suppressants after and then I have a much higher risk of all of those problems, but at least I don't have to worry about the surgery coming up and a hospital stay will be a regular hospital stay... and not at this hospital!
Tomorrow I look forward to hopefully taking a regular shower for the first time in 2 weeks and for the last time in probably even longer than that. Because of the central line I had to be extremely careful showering with my chest/neck covered. Washing your hair without getting your neck or chest wet is pretty darn hard. Even after removing the line I've still had to keep the area covered and dry. Tomorrow I can remove this and hopefully it looks ok so I can shower normally. Then its back to not due to having to keep my chest dry from the surgery. Again, those little things, like a regular warm shower- so delightful.
This will probably be my last post before surgery. I need to call tomorrow afternoon to find out my instructions but they said it will most likely be a 4am admission on Tuesday. Crazy! I don't know how soon I'll feel up to getting back on here after surgery. Just as a recap, my surgeon will be doing robotic surgery- 3-4 side incisions to remove my thymus located in the center of my chest. Hopefully he will not have to spread any ribs as he mentioned that is a risk with a smaller framed person. He has to collapse one lung to get through. The surgery is expected to be about 3 hours start to finish. As long as I am breathing ok coming out of surgery I will not be put on the vent after waking up. I will have tubes coming out of me for draining and will be sent to the ICU with expected time of about a day before moved to a regular room. Then expected to be there a few more days until my pain is well controlled and I am able to move around on my own. If the surgery makes the MG go out of control, which it can, then they are talking about more rounds of plasmapheresis before discharge. Sooo depending on how everything goes I should be in the hospital anywhere from a few days to a few weeks. Still hoping for the best!
A lot of people have been asking what they can do, what they can bring me. Know that I sincerely appreciate everything... it brightens my day and reminds me you care. Thank you to everyone who made me feel loved and showed support while I was in the hospital. Most of my family and friends know I hate asking for help or asking for anything. But a friend in San Antonio once told me that by denying help I am denying that person's joy... because being a blessing to another brings joy to oneself. So to answer the question a lot of people have asked me... here's what I think would be the best help after surgery... healthy food. No joke. The hospital food is the worst hospital food I've had... not extemely bad in taste but just SO unhealthy, all pre-packaged, chemically altered stuff. When I'm trying to get well that's the last thing I want. So if anyone is looking to do anything I think a healthy meal or healthy snack would be best. I know I'm a picky eater but I've gotten a lot better and at this point probably the only thing I definitely won't eat is seafood and mushrooms. The biggest thing is just making sure I am able to eat a regular diet because first they need to make sure my swallowing is functioning ok. Even shortly after getting discharged meals are probably still the best thing. My parents have been doing SO much to help me out and I know when I'm first discharged I'll probably require a lot of help and thus taking anything off them as little as preparing a meal I know would be a huge help. One other thing would be just to help get me anything I need from the store since I don't know how long it will be til I can get out on my own and again that's something my parents have really taken on. But really, anything, even a message to say hello, means a lot to me. Thank you.
Off topic for a minute but I posted a few pictures on facebook of my stay in the hospital. Most anyone with a chronic "invisible illness" knows how much "you look fine" drives us nuts. So for the first time I decided to post some pictures that show me not looking "fine." I would post some here but didn't because of this being public versus facebook being private. If anyone isn't on facebook and cares to see, I'm happy to share them.
Another thing I posted on facebook I'm going to share here to wrap up... just a thought to ponder or such. Of course we're hoping for the best possible outcome with surgery, but you just never know. Here's what I said. "For some reason we all have this misconception that life will last well into the 80s, 90s or more. The truth is we have no idea how long any life will last. So leave every room with a smile, end every visit with a hug, every conversation with love. No matter the person, no matter the problem, no matter the mood. I challenge you this- right now, reach out to someone you have some sort of problem with, a grudge against, angry at, abandoned.... and make someone smile, rekindle a relationship, apologize, heal a damaged heart. Be the one who makes it not about the amount of years in your life but the amount of life in your years. Love and be loved. Always."
Blessings to you all.
Thursday, April 4, 2013
Inpatient week 2
Nothing much eventful this week... don't even remember much of what happened that's how uneventful it was... up until yesterday.
So my first 4 plasmapheresis treatments I felt pretty confident about. Of course I was nervous getting started, but my gut feeling was everything would be ok. Yesterday, the day of my 5th treatment, I had an uneasy feeling, that sense of intuition. I tried to ignore it but clearly it was right. My blood pressure was normal going into it and I started getting the tingling I've already experienced so they upped the calcium as usual. But I started getting really tired... I mean so tired even though I was watching a movie my eyes were closing, and I can never nap during the day. I was also feeling pretty lightheaded. I didn't think much of it since these symptoms aren't really out of the ordinary for what I experience. But all of a sudden the tech said he's going to lay me all the way down and raise my feet. I asked if everythings ok. He said my blood pressure dropped quite a bit. So he did that and he started testing the blood pressure more often but it wasn't going up. So he lowered the rate of treatment, still wasn't going up. He gave me fluids, still wasn't going up. So he had to completely stop the treatment and thank God it then came back up. So he started it back up and kept it very slow. Oddly enough I wasn't too concerned even though it was pretty scary. Afterwards the tech said to me he's been doing this for 11 years but I had him scared for a while there. Yikes. But hey I made it through! I think the worst part for me was because we had to stop and go so slow I was dying to get to the bathroom... drinking as much water as I do is not fun during these treatments haha.
At least I had an awesome. It was my second time having him. He asked if I'm Puerto Rican because of my last name, because he is... I had to laugh because I'm about as German looking as you can get. So that broke the ice and got us talking and he just said so many words I needed to hear. He reminded me of one of my favorite guys at the rehab hospital in San Antonio. There are just some people I swear God places in your path for a reason. And it's just so crazy how you can connect deeply with people you just meet. To me it feels like a refueling... someone says what I need to hear at that moment, reassures me or redirects me, and I'm off to go again. So tech-thank you.
On top of that yesterday, my afternoon was just a joy... not. My regular neurologist came in (she works out of the same hospital but has another doctor following me here). She decided she wanted to do another nerve conduction study/EMG. The first one was bad enough but this one was slightly different in that you get shocked multiple times in one place, and one needle in one muscle for like 45 minutes while having to move/flex that muscle. Painful! I remember during it I wanted to scream at the top of my lungs... the pain wasn't THAT bad... but I wanted to do it to freak her out and to make myself laugh. LOL. I contained myself and didn't do that though. If she ever puts me through it again I think I will. My parents were in the room the whole time and when I was done I asked who's next. No one volunteered but I'm not surprised.
She wanted to do this because unfortunately once again I am not responding very well to treatment. The point of the plasmapheresis was to boost me up for the surgery. The line placement set me back so I have had improvement since inpatient... but I'm only at the point I was at while at home, possibly even slightly weaker. No one, including myself, really knows what to think of this- why I'm not responding. So basically she wanted to prove for the billionth time that this really is MG. Well yet another test was positive for it and yet again it was reconfirmed. But yet again there is still the question of- is there something else out there yet to be found. I think they first want to get me through surgery and then go from there. So she decided to add one more plasmapheresis treatment.
I just finished my 6th treatment about a half hour ago. This time they had me lay down from the start, gave me some fluids to begin with. When I dropped to 88 over 50 she stopped it before it could drop lower, gave me more fluids and once I got back to the 90s started again. It was going alright then until the end, she gave me more fluids and I looked to be ok... she even said "You did it Heather! Wooo wooo wooo! No crashing this time!" LOL but when everything was detached and my blood pressure checked for the last time it was 86 over 46... those are the numbers that scare me. So once again feet above my head. At this point we have it back to 90s over about 50, but my body seems to be saying stop doing this to me.
This tech was awesome too. She was shocked and impressed at how great of an attitude I have. You know, I love when people tell me that? I love it because never in my life did I hear that until within the past 9 months. Things often seen as negative can with effort be turned into positive. But I attribute my change of attitude to God. It's not quite anything you can put into words but if you have it you'll know it. And if you don't, I'll pray that you will.
Unless I hear otherwise, this will be my last pre-surgery plasmapheresis treatment. As of now, the plan is for line removal tomorrow (God, please don't let it cause as much pain as placing it caused). And if I'm stable for a while after removal they will discharge me tomorrow... just in time to spend my birthday at home and a couple more days in a more comfortable bed with a regular shower... to return for surgery on Tuesday. Of course, I never hang on to any words anyone at a hospital says because plans change so often.
In 5 days I will have a robot inside my chest. That's a pretty exciting way to look at it right?
Keep calm and carry on.
So my first 4 plasmapheresis treatments I felt pretty confident about. Of course I was nervous getting started, but my gut feeling was everything would be ok. Yesterday, the day of my 5th treatment, I had an uneasy feeling, that sense of intuition. I tried to ignore it but clearly it was right. My blood pressure was normal going into it and I started getting the tingling I've already experienced so they upped the calcium as usual. But I started getting really tired... I mean so tired even though I was watching a movie my eyes were closing, and I can never nap during the day. I was also feeling pretty lightheaded. I didn't think much of it since these symptoms aren't really out of the ordinary for what I experience. But all of a sudden the tech said he's going to lay me all the way down and raise my feet. I asked if everythings ok. He said my blood pressure dropped quite a bit. So he did that and he started testing the blood pressure more often but it wasn't going up. So he lowered the rate of treatment, still wasn't going up. He gave me fluids, still wasn't going up. So he had to completely stop the treatment and thank God it then came back up. So he started it back up and kept it very slow. Oddly enough I wasn't too concerned even though it was pretty scary. Afterwards the tech said to me he's been doing this for 11 years but I had him scared for a while there. Yikes. But hey I made it through! I think the worst part for me was because we had to stop and go so slow I was dying to get to the bathroom... drinking as much water as I do is not fun during these treatments haha.
At least I had an awesome. It was my second time having him. He asked if I'm Puerto Rican because of my last name, because he is... I had to laugh because I'm about as German looking as you can get. So that broke the ice and got us talking and he just said so many words I needed to hear. He reminded me of one of my favorite guys at the rehab hospital in San Antonio. There are just some people I swear God places in your path for a reason. And it's just so crazy how you can connect deeply with people you just meet. To me it feels like a refueling... someone says what I need to hear at that moment, reassures me or redirects me, and I'm off to go again. So tech-thank you.
On top of that yesterday, my afternoon was just a joy... not. My regular neurologist came in (she works out of the same hospital but has another doctor following me here). She decided she wanted to do another nerve conduction study/EMG. The first one was bad enough but this one was slightly different in that you get shocked multiple times in one place, and one needle in one muscle for like 45 minutes while having to move/flex that muscle. Painful! I remember during it I wanted to scream at the top of my lungs... the pain wasn't THAT bad... but I wanted to do it to freak her out and to make myself laugh. LOL. I contained myself and didn't do that though. If she ever puts me through it again I think I will. My parents were in the room the whole time and when I was done I asked who's next. No one volunteered but I'm not surprised.
She wanted to do this because unfortunately once again I am not responding very well to treatment. The point of the plasmapheresis was to boost me up for the surgery. The line placement set me back so I have had improvement since inpatient... but I'm only at the point I was at while at home, possibly even slightly weaker. No one, including myself, really knows what to think of this- why I'm not responding. So basically she wanted to prove for the billionth time that this really is MG. Well yet another test was positive for it and yet again it was reconfirmed. But yet again there is still the question of- is there something else out there yet to be found. I think they first want to get me through surgery and then go from there. So she decided to add one more plasmapheresis treatment.
I just finished my 6th treatment about a half hour ago. This time they had me lay down from the start, gave me some fluids to begin with. When I dropped to 88 over 50 she stopped it before it could drop lower, gave me more fluids and once I got back to the 90s started again. It was going alright then until the end, she gave me more fluids and I looked to be ok... she even said "You did it Heather! Wooo wooo wooo! No crashing this time!" LOL but when everything was detached and my blood pressure checked for the last time it was 86 over 46... those are the numbers that scare me. So once again feet above my head. At this point we have it back to 90s over about 50, but my body seems to be saying stop doing this to me.
This tech was awesome too. She was shocked and impressed at how great of an attitude I have. You know, I love when people tell me that? I love it because never in my life did I hear that until within the past 9 months. Things often seen as negative can with effort be turned into positive. But I attribute my change of attitude to God. It's not quite anything you can put into words but if you have it you'll know it. And if you don't, I'll pray that you will.
Unless I hear otherwise, this will be my last pre-surgery plasmapheresis treatment. As of now, the plan is for line removal tomorrow (God, please don't let it cause as much pain as placing it caused). And if I'm stable for a while after removal they will discharge me tomorrow... just in time to spend my birthday at home and a couple more days in a more comfortable bed with a regular shower... to return for surgery on Tuesday. Of course, I never hang on to any words anyone at a hospital says because plans change so often.
In 5 days I will have a robot inside my chest. That's a pretty exciting way to look at it right?
Keep calm and carry on.
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