July 10th I was admitted into the hospital because I had such horrible back pain I couldn't sit, stand or walk at all. July 13th I was transferred to a rehab.
About 2- 3 weeks into being at rehab they had me up & walking & ready to go home on Friday. That Wednesday my right leg blew up like a balloon,triple the size of my left leg. I mentioned it to my occupational therapist & he asked at least 3 other therapists. They all agreed it was swollen, he told my nurse who told her boss & a Doppler test was ordered from them telling a Dr. Of course the Doppler test comes out negative- another 4 days of me arguing it wasn't normal for me & something needed to be done because I knew it had nothing to do with my back b/c it skipped my butt & thigh. They end up sending me to my rhematologist thinking it was a lupus or fibromyalgia flare. She ordered an MRI. My fiancé & I get back to the rehab & find out from the Dr. that my insurance denied the MRI. Now honestly, having records & knowing I had been in the hospital & then rehab for the past 21 days they denied my MRI. I lost it emotionally, crying uncontrollably when my future sister in law Karyn walked in & saw how upset we were. I left for therapy & Karyn & Marc (my fiance) went to the social worker. By the time I got back from therapy a meeting was scheduled in my room with the social worker, head of nursing & director of Rehab. Also present was my friend Joelle & her kids. The meeting resulted in me being sent to the hospital with all of us certain I'd at least find an answer. Upon arrival at the hospital the charge nurse barely let the Emt get out why I was here I believe she cut him off after hearing him say her knee, when she laughed & said I hope she has a ride home take her to fast track 12... I believe was the location. We rolled away & I asked what did she just say did she really just laugh & say hope she has a ride home?
From the start I was a joke to that hospital. Marc & my mom arrived I said I needed the bathroom, but I couldn't walk so my mom went to ask for a wheel chair. The nurse or assistant rolled in with a wheelchair & said oh I guess I should have asked what size- I said it's ok I'm fat but I'll fit thanks. The bathroom was only right across from my bed. She rolled me in the bathroom turning me around whacked my leg right into the wall. I screamed so loud my mom & Marc came running. I asked her to leave & my mom stayed & helped me use the bathroom.
Once I was back into the bed a R.N. came in & asked me what was going on. After listening to me explain that my right leg had been this way now for 6 days, hasn't gone down with medicine or ice. She said I belonged in the regular emergency room not fast track. Ordered me pain medicine, blood work, to be moved & apologized for the previous person that rammed my leg into the wall. That was done I was moved. My blood was taking & I was told I needed to provide a urine sample i said ok but I need a wheelchair in order to go. He also said he was giving me dioltin which i then asked for something else because it made me sick when I was in the hospital 20 days ago he just said he'd give me less & i'd be fine. I tried to argue but he wasn't listening. He just didnt care. This is all @ 5-5:30. I also asked if I could eat something because of the dr in the morning & the therapy in the afternoon I hadn't ate. They told me I couldn't eat anything b/c they didn't know what tests needed to be done. Fine.
Around 7 I asked again for a wheelchair & not brought one. By 9 Marc must have gone to the nurses station 5 times asking when a doctor would ever see me. Again at 9 I asked for a wheelchair, doctor & more pain medicine. Nothing happened. So now I'm starving in pain but nauseous from the medicine I didn't want to begin with & had to use to the bathroom.
Finally a little after 10 I yelled out my door at some nurse/dr walking by & that I'd been waiting now for 5 hours for a doctor to see me. Finally at 11 a doctor walks in. He pokes my knee cap looks at my leg & asked me what I wanted him to do about it. I asked for an MRI he said what do you think we have it available 24 hours a day. I said you can't just do nothing you can psychically see something is wrong. But that's just what he did nothing, said he'd call for my transport. I just couldn't believe a hospital wouldn't do anything. This was supposed to be the better hospital, I cant believe they did nothing. 12:30am is when my transport had arrived, still hadn't gone to the bathroom, still hadn't ate, still in pain because I never got any other pain medicine. Then when I said I had been waiting over an hour for transport they said they only got the call a half hour ago. So after waiting 6 1/2 hours for a dr they then decided to wait another hour before calling for my transport. Since I wasn't allowed to leave with my fiancé because I left Belgrove(the rehab) by ambulance & that's how I had to come back.
My insurance had only approved an X-ray of the knee which I knew wouldn't show anything I told them it wasn't my bones, so after they took that X-ray & it came back negative I fought with my insurance to get the MRI approved. There was a 30 day appeal process or 4 weeks I screamed & yelled until someone from care core said they could help me get it approved & it did for that thursday. It took until Monday aug 6th a week from the night I spent at the hospital, a week & 6 days since my leg swelled. To be told that I had a blood clot in my leg. 4 days of bed rest & shots in my stomach morning & night I was able to attempt to walk again & start my healing process all over again. If it hadn't been for the blood clot I would have been out of rehab weeks ago & been back to normal life.
When I first went to the ER by ambulance on 7/10 it was because I couldn't sit, Stand or walk. I was admitted into the hospital for four days during that time I was barely moving & not walking, the fourth day there before they transferred me to rehab I was able to take 3 steps without falling. Not once during that time or at all was there anything on my legs for circulation. I believe this is the reason for these clots as I've been told the clots are from all the time I was laid up & not moving. I could have died in the time it took to diagnosis this clot.
I was recently asked what losses I experienced from this. The following is my answer.
I was released from the rehab on 8/17/12. Monday or Tuesday of that week I asked "When am I going home?" I said if all you're doing is medicating me & psychical therapy, can't I do that from home? At that point I have been in the hospital & then the rehab for over 34 days. I missed the whole summer, my future step sons birthday was celebrated in a rehab instead of a water park as planned. I missed a family tradition that marks only the 3rd time ever missed in my life, my nieces christening & a family reunion just to list a few. These things hurt me so much. Silly to some but priceless to me, especially knowing that maybe just maybe if people had done their jobs thoroughly to begin with I wouldn't be dealing with this still today.
As far as pain it's been tough. I have been so sore & constantly tired & weak. As of now I'm told I'll be on medicine until at least January. Being as my blood levels weren't easy to get where they should be. They sent me home on so much medicine. I swear a dr never even looked at it, just forwarded everything that I was on at Belgrove. Medicine totaling well over $100 my first day out of Belgrove.
Just the walk from the car to the counter at cvs was ridiculous. This was the first place I was told that my birth control can also cause blood clots- you'd think at least one person throughout my 38 day nightmare would say hey wonder if your clots where caused by your birth control. I assured him I'd been on the birth control for the last 16 years never once did I have an issue & couldn't just stop taking it, for health reasons do to previous issues not to prevent pregnancy. He said ok but do they know I said yes I gave everyone a list of my daily medicine & even asked if it was ok I was taking them. To which my response was yeah I'm sure it is, it's in your chart you're taking them.
The 34 days alone at Belgrove was horrible. I'm usually a very upbeat person. Not easily knocked down. Emotional about things sure but I refer to those 38 days as my nightmare because I honestly have no better word for it. I wasn't able to drive again until the swelling in my leg went down. I finally got the approval from my hematologist who I started seeing when I got out & went to on my own. Thankfully I did because the first appt I had with him was a week after I was discharged. The morning I was discharged I gave blood work to check my Coumadin levels, the morning I left belgrove & the following Friday. Never once hearing from the dr that my blood work was going to.
So grateful for my hematologist since he tested my levels right there & realized my levels where only clotting at 1.00 a second when your taking Coumadin your levels should clot between 2.00-3.00 which mine clearly weren't. Thankfully I had followed up with another him after leaving the rehab. Or else I may still be taking the wrong amount of medicine & not healing. My medicine has had to be adjusted twice already since being released.
Which also, to back track a little my primary dr transferred me from the hospital to the rehab yet never once checked on me & when my mom called their office to ask them to do my disability papers the response from the secretary was I don't even know that he would be the one to do them & that it would cost me a $30 fee. Apparently she doesn't know what not getting paid for over a week & having a family that depends on that check means. I don't have an extra $30 for you to do your job. You kept me out of work & transferred me to a rehab fill out the paperwork.
Prior to the rehab when I was in the hospital when the dr walked in his 1st & foremost concern was what I was drinking he picked up my Gatorade bottle & checked its sugar intake. And told me its bad for me & i shouldn't be drinking. Knowing i was confined to the bed & couldnt have gotten It myself. I also shouldn't have had a dr in the room that clearly cared more for that Gatorade than the patient, myself laying in the bed unable to sit, stand or walk.
Belgrove wasn't fun... nothing about it. Don't get me wrong some of the staff....Most that I worked with I was pleased with, but there was a few that continued to argue me when I wanted further testing because as tears streamed down my face I exclaimed there was no way my leg which was 3x's bigger than the left was normal for a 30 year old no one wanted to hear me- until my family got loud. Which would normally be the 1st thing I'd do for myself or whoever it was, I even tried to get angry & mad it didn't work. But turns out I had no strength left to do that. I had no ump left to fight and no one was listening anyway. So why bother.
Everyone says everything happens for a reason. While in rehab one of my Aflac reps mentioned I had coverage for every day I was admitted in the hospital & oh Come to find out I was never admitted I was under observation for 4 days. Unbelievable.
Anyway I thought my reason would be as he mentioned $250/day for the hospital than $150 per day at rehab. 34 days 38 total that's a lot of money. Yeah turns out that wasn't the case for me because my rehab was titled a skilled nursing facility & not a hospital rehab so those 34 days I thought finances would be made up & taking care of- nope. Not a thing. If I'm lucky they can pay for 7 of my psychical therapy sessions.
Also during all this I have been dealing with something else- I had to ween myself off all these drugs they have been giving me for so long. One pain medicine was twice a day daily once in the morning & once in the evening. When coming off of this medicine I experienced horrible horrible withdrawal symptoms. First Night I literally paced my house all night with a walker & all because at that time I still depended a lot on the walker. My arms would go into fits like restless leg syndrome but in my arms completely out of my control. To the point where the next day all my veins in my arm where popped out & that night I had nearly punched myself in the face numerous times.
As of now I usually cannot spend a whole night asleep. If I fall asleep by 10 I'm up easily from 12:30am-7am. Not a chance of sleep. It's rather exhausting. No matter what I do even a trip to the dr requires an afternoon nap. I have no strength. At age 30. It's crazy. And to think it all could have been avoided is what hurts the most. It's unnecessary.
I had to return to work on 10/2/12 or my job was not guaranteed. Nothing like added stress when you have a blood clot. I can't not go back, I need my job. As we all do. So I had to drive again & relearn things that I never had to think of before. Walking up the stairs, kneeling on the floor can't happen at all, sleeping. Every move I make scares me- to think I could trip & fall & bleed to death is kinda unnerving to me. All because of the medicine I'm on to fix me.
This was my summer which I refer to as my nightmare. I'm still going through so much 2-3 drs appointments weekly & hear it could take me at least 3 months to a year to feel like myself again. Every day is a new challenge but always one step closer to being me again. I needed to share this part of my life... Thank you for listening & thank you all for being there for me when I needed you the most. Until next time...Keep smiling *Live*Laugh*Love*Learn*
About 2- 3 weeks into being at rehab they had me up & walking & ready to go home on Friday. That Wednesday my right leg blew up like a balloon,triple the size of my left leg. I mentioned it to my occupational therapist & he asked at least 3 other therapists. They all agreed it was swollen, he told my nurse who told her boss & a Doppler test was ordered from them telling a Dr. Of course the Doppler test comes out negative- another 4 days of me arguing it wasn't normal for me & something needed to be done because I knew it had nothing to do with my back b/c it skipped my butt & thigh. They end up sending me to my rhematologist thinking it was a lupus or fibromyalgia flare. She ordered an MRI. My fiancé & I get back to the rehab & find out from the Dr. that my insurance denied the MRI. Now honestly, having records & knowing I had been in the hospital & then rehab for the past 21 days they denied my MRI. I lost it emotionally, crying uncontrollably when my future sister in law Karyn walked in & saw how upset we were. I left for therapy & Karyn & Marc (my fiance) went to the social worker. By the time I got back from therapy a meeting was scheduled in my room with the social worker, head of nursing & director of Rehab. Also present was my friend Joelle & her kids. The meeting resulted in me being sent to the hospital with all of us certain I'd at least find an answer. Upon arrival at the hospital the charge nurse barely let the Emt get out why I was here I believe she cut him off after hearing him say her knee, when she laughed & said I hope she has a ride home take her to fast track 12... I believe was the location. We rolled away & I asked what did she just say did she really just laugh & say hope she has a ride home?
From the start I was a joke to that hospital. Marc & my mom arrived I said I needed the bathroom, but I couldn't walk so my mom went to ask for a wheel chair. The nurse or assistant rolled in with a wheelchair & said oh I guess I should have asked what size- I said it's ok I'm fat but I'll fit thanks. The bathroom was only right across from my bed. She rolled me in the bathroom turning me around whacked my leg right into the wall. I screamed so loud my mom & Marc came running. I asked her to leave & my mom stayed & helped me use the bathroom.
Once I was back into the bed a R.N. came in & asked me what was going on. After listening to me explain that my right leg had been this way now for 6 days, hasn't gone down with medicine or ice. She said I belonged in the regular emergency room not fast track. Ordered me pain medicine, blood work, to be moved & apologized for the previous person that rammed my leg into the wall. That was done I was moved. My blood was taking & I was told I needed to provide a urine sample i said ok but I need a wheelchair in order to go. He also said he was giving me dioltin which i then asked for something else because it made me sick when I was in the hospital 20 days ago he just said he'd give me less & i'd be fine. I tried to argue but he wasn't listening. He just didnt care. This is all @ 5-5:30. I also asked if I could eat something because of the dr in the morning & the therapy in the afternoon I hadn't ate. They told me I couldn't eat anything b/c they didn't know what tests needed to be done. Fine.
Around 7 I asked again for a wheelchair & not brought one. By 9 Marc must have gone to the nurses station 5 times asking when a doctor would ever see me. Again at 9 I asked for a wheelchair, doctor & more pain medicine. Nothing happened. So now I'm starving in pain but nauseous from the medicine I didn't want to begin with & had to use to the bathroom.
Finally a little after 10 I yelled out my door at some nurse/dr walking by & that I'd been waiting now for 5 hours for a doctor to see me. Finally at 11 a doctor walks in. He pokes my knee cap looks at my leg & asked me what I wanted him to do about it. I asked for an MRI he said what do you think we have it available 24 hours a day. I said you can't just do nothing you can psychically see something is wrong. But that's just what he did nothing, said he'd call for my transport. I just couldn't believe a hospital wouldn't do anything. This was supposed to be the better hospital, I cant believe they did nothing. 12:30am is when my transport had arrived, still hadn't gone to the bathroom, still hadn't ate, still in pain because I never got any other pain medicine. Then when I said I had been waiting over an hour for transport they said they only got the call a half hour ago. So after waiting 6 1/2 hours for a dr they then decided to wait another hour before calling for my transport. Since I wasn't allowed to leave with my fiancé because I left Belgrove(the rehab) by ambulance & that's how I had to come back.
My insurance had only approved an X-ray of the knee which I knew wouldn't show anything I told them it wasn't my bones, so after they took that X-ray & it came back negative I fought with my insurance to get the MRI approved. There was a 30 day appeal process or 4 weeks I screamed & yelled until someone from care core said they could help me get it approved & it did for that thursday. It took until Monday aug 6th a week from the night I spent at the hospital, a week & 6 days since my leg swelled. To be told that I had a blood clot in my leg. 4 days of bed rest & shots in my stomach morning & night I was able to attempt to walk again & start my healing process all over again. If it hadn't been for the blood clot I would have been out of rehab weeks ago & been back to normal life.
When I first went to the ER by ambulance on 7/10 it was because I couldn't sit, Stand or walk. I was admitted into the hospital for four days during that time I was barely moving & not walking, the fourth day there before they transferred me to rehab I was able to take 3 steps without falling. Not once during that time or at all was there anything on my legs for circulation. I believe this is the reason for these clots as I've been told the clots are from all the time I was laid up & not moving. I could have died in the time it took to diagnosis this clot.
I was recently asked what losses I experienced from this. The following is my answer.
I was released from the rehab on 8/17/12. Monday or Tuesday of that week I asked "When am I going home?" I said if all you're doing is medicating me & psychical therapy, can't I do that from home? At that point I have been in the hospital & then the rehab for over 34 days. I missed the whole summer, my future step sons birthday was celebrated in a rehab instead of a water park as planned. I missed a family tradition that marks only the 3rd time ever missed in my life, my nieces christening & a family reunion just to list a few. These things hurt me so much. Silly to some but priceless to me, especially knowing that maybe just maybe if people had done their jobs thoroughly to begin with I wouldn't be dealing with this still today.
As far as pain it's been tough. I have been so sore & constantly tired & weak. As of now I'm told I'll be on medicine until at least January. Being as my blood levels weren't easy to get where they should be. They sent me home on so much medicine. I swear a dr never even looked at it, just forwarded everything that I was on at Belgrove. Medicine totaling well over $100 my first day out of Belgrove.
Just the walk from the car to the counter at cvs was ridiculous. This was the first place I was told that my birth control can also cause blood clots- you'd think at least one person throughout my 38 day nightmare would say hey wonder if your clots where caused by your birth control. I assured him I'd been on the birth control for the last 16 years never once did I have an issue & couldn't just stop taking it, for health reasons do to previous issues not to prevent pregnancy. He said ok but do they know I said yes I gave everyone a list of my daily medicine & even asked if it was ok I was taking them. To which my response was yeah I'm sure it is, it's in your chart you're taking them.
The 34 days alone at Belgrove was horrible. I'm usually a very upbeat person. Not easily knocked down. Emotional about things sure but I refer to those 38 days as my nightmare because I honestly have no better word for it. I wasn't able to drive again until the swelling in my leg went down. I finally got the approval from my hematologist who I started seeing when I got out & went to on my own. Thankfully I did because the first appt I had with him was a week after I was discharged. The morning I was discharged I gave blood work to check my Coumadin levels, the morning I left belgrove & the following Friday. Never once hearing from the dr that my blood work was going to.
So grateful for my hematologist since he tested my levels right there & realized my levels where only clotting at 1.00 a second when your taking Coumadin your levels should clot between 2.00-3.00 which mine clearly weren't. Thankfully I had followed up with another him after leaving the rehab. Or else I may still be taking the wrong amount of medicine & not healing. My medicine has had to be adjusted twice already since being released.
Which also, to back track a little my primary dr transferred me from the hospital to the rehab yet never once checked on me & when my mom called their office to ask them to do my disability papers the response from the secretary was I don't even know that he would be the one to do them & that it would cost me a $30 fee. Apparently she doesn't know what not getting paid for over a week & having a family that depends on that check means. I don't have an extra $30 for you to do your job. You kept me out of work & transferred me to a rehab fill out the paperwork.
Prior to the rehab when I was in the hospital when the dr walked in his 1st & foremost concern was what I was drinking he picked up my Gatorade bottle & checked its sugar intake. And told me its bad for me & i shouldn't be drinking. Knowing i was confined to the bed & couldnt have gotten It myself. I also shouldn't have had a dr in the room that clearly cared more for that Gatorade than the patient, myself laying in the bed unable to sit, stand or walk.
Belgrove wasn't fun... nothing about it. Don't get me wrong some of the staff....Most that I worked with I was pleased with, but there was a few that continued to argue me when I wanted further testing because as tears streamed down my face I exclaimed there was no way my leg which was 3x's bigger than the left was normal for a 30 year old no one wanted to hear me- until my family got loud. Which would normally be the 1st thing I'd do for myself or whoever it was, I even tried to get angry & mad it didn't work. But turns out I had no strength left to do that. I had no ump left to fight and no one was listening anyway. So why bother.
Everyone says everything happens for a reason. While in rehab one of my Aflac reps mentioned I had coverage for every day I was admitted in the hospital & oh Come to find out I was never admitted I was under observation for 4 days. Unbelievable.
Anyway I thought my reason would be as he mentioned $250/day for the hospital than $150 per day at rehab. 34 days 38 total that's a lot of money. Yeah turns out that wasn't the case for me because my rehab was titled a skilled nursing facility & not a hospital rehab so those 34 days I thought finances would be made up & taking care of- nope. Not a thing. If I'm lucky they can pay for 7 of my psychical therapy sessions.
Also during all this I have been dealing with something else- I had to ween myself off all these drugs they have been giving me for so long. One pain medicine was twice a day daily once in the morning & once in the evening. When coming off of this medicine I experienced horrible horrible withdrawal symptoms. First Night I literally paced my house all night with a walker & all because at that time I still depended a lot on the walker. My arms would go into fits like restless leg syndrome but in my arms completely out of my control. To the point where the next day all my veins in my arm where popped out & that night I had nearly punched myself in the face numerous times.
As of now I usually cannot spend a whole night asleep. If I fall asleep by 10 I'm up easily from 12:30am-7am. Not a chance of sleep. It's rather exhausting. No matter what I do even a trip to the dr requires an afternoon nap. I have no strength. At age 30. It's crazy. And to think it all could have been avoided is what hurts the most. It's unnecessary.
I had to return to work on 10/2/12 or my job was not guaranteed. Nothing like added stress when you have a blood clot. I can't not go back, I need my job. As we all do. So I had to drive again & relearn things that I never had to think of before. Walking up the stairs, kneeling on the floor can't happen at all, sleeping. Every move I make scares me- to think I could trip & fall & bleed to death is kinda unnerving to me. All because of the medicine I'm on to fix me.
This was my summer which I refer to as my nightmare. I'm still going through so much 2-3 drs appointments weekly & hear it could take me at least 3 months to a year to feel like myself again. Every day is a new challenge but always one step closer to being me again. I needed to share this part of my life... Thank you for listening & thank you all for being there for me when I needed you the most. Until next time...Keep smiling *Live*Laugh*Love*Learn*
Gosh I am so sorry Doreen, I am praying that the worst is behind you. Did Aflec deny you coverage? Also, you needed the MRI, but it was denied because you didn't have coverage?
Posted by: UglyLikeMe | 10/26/2012 at 10:15 AM
At first Aetna wouldn't approve the Mri- I had to fight for it which delayed the test over a week to be done. I had coverage they just didn't see the reason for it. Nothing like having to literally fight for your life. Thankfully I did & thank you for your prayers <3
Posted by: Secretly lost | 10/26/2012 at 10:27 AM
Prayer..
Posted by: Lingling | 11/04/2012 at 10:27 PM