Thursday, August 25, 2011

My OHSS Story - Part IV

. . . Once in the ICU things started happening quickly.  It was a whirlwind.  I suppose they are used to having to do things at top speed in the ICU and they were true to form.  In no time at all I had an IV drip, sensors for EKG were slapped on me and I had machines monitoring my pulse, heart, and oxygen continually.  Maybe blood pressure too?  I can't remember.  I had x-rays and blood draws and another ultrasound in no time at all.  I was in between being panicked from the sense of immediacy and just thankful that I could finally get help.  I am not sure if this is how others feel, but when I was admitted I was just as fearful as I was relieved.

I was in the ICU until the following night.  The pain was still radiating and bodily functions still painful.  The staff there was good.  Different nurses and doctors would come and check on me, but it was there that I first started hearing the questions.  How did this happen to you?  Why is the treatment for this an IV?  Why are you swelling?  At that point, this was only from one whacky nurse, but really?
 
The night I was moved out of ICU though, I started having more complications.  As friends and family visited throughout the night, I reclined in my amazing mechanical bed feeling fairly fine.  The laughter hurt, but other than that, I was feeling decent.  But after everyone left and I got up to use the bathroom, I was shocked to find that the swelling had now moved down into my legs.  They were stiff and rock hard just like my abdomen and I could barely move them to walk.  Other parts were swollen as well.  So swollen.  A quite irreverent nurse put it the best as she examined me saying, "Oh, it's like you grew a pair, huh?"  So inappropriate, but so hilarious.  It was terrible and rivaled the moderate pain of my ovaries themselves.  In the middle of the night, I started having trouble breathing.  When my husband would pull me up or help me change positions, I couldn't breathe.  When I would try to take a breath, my windpipe seemed to be abruptly cut off half way through and I would be sent into a coughing fit.  I was scared.

The following days brought more frustration.  Though I felt good about being at a hospital in case something happened, my care really didn't seem consistent.  Having never been hospitalized, perhaps this is the norm, but I was surprised that my clinic sent a different OB to see me every day.  At the same time, they could treat me and my ovaries, but they could not treat the lung problems I was having.  Nor did they really seem to know much about how to treat my body chemistry that was completely off-balance.  It was frustrating and for good reason.  I will say that if you ever go through hyperstim, it is difficult because there is no treatment.  Still, you do have to be monitored and receive supportive therapy to ensure nothing does happen.  This can be frustrating because you really don't feel as if anyone is necessarily acting as your doctor.  Different doctors would come in, all with varying degrees of bed-side manners, ask how I was doing and then more or less leave.

One day, I just lost it.  Yet another OB doctor came in, asked how I was doing, and then proceeded to ask me what the plan was and if any other doctors were assigned to my case.  What?  You're asking me?  Isn't this stuff in my chart?  Didn't you just review it?  He, quite unprofessionally went on to question why I had an IV and asked who ordered it.  He discussed how he thought it was an overreaction to put me in the ICU.  He told me how the pulmonary specialist that had been seeing me in the ICU had been called after my breathing had worsened and had questioned why he should see me at all.  I wasn't his patient.  He didn't want to come down.  After this frustrating conversation, I laid down.  My heart was racing, my breath so short.  I was upset, but still relatively calm, so I didn't see any reason for this distress.  In a minute, I had called the nurses asking if my oxygen level could please just be monitored as I was having so much trouble breathing.  Enter OB doctor.  Cue respectful tirade which went something like this:

"I know that I've never been in a hospital or in this situation before and don't want to be disrespectful of how things work, but I'm not feeling comfortable here.  I see a different OB every day who asks me about my symptoms and then asks me about the treatment I'm receiving.  I can't answer the question of why I am on an IV.  I can't answer the question of why I was admitted to the ICU.  I can't answer the question of why I did not receive any attention while I was calling and even in clinic Sunday through Wednesday.  But I'm here and there are issues.  I understand that there isn't any treatment and I can only receive supportive therapy, but I feel as though I am receiving more questions from healthcare professionals than I am receiving answers.  I don't know if my ovaries have shrunk.  I don't know what my lungs look like.  I haven't had an ultrasound nor a chest X-ray since Thursday.  Again, I don't want to be disrespectful, but consistency would definitely make me feel a little more at ease here.  Or even to feel like someone knew my case and cared to look over my chart and see me.  I'm having issues breathing, I need to see a doctor for that.  After everything that has happened over the last week and the lack of response from the clinic, we are feeling so vulnerable right now.  We want to put our trust in the healthcare professionals here, but don't really know who that is."

Within about 5 minutes, I was hooked up to a box that monitored my pulse rate and oxygen.  Within 10, I was wheeled down for a chest X-ray and ultrasound.  And, to say the least, I was feeling quite empowered for the rest of the day.

To be continued . . .

4 comments:

bodegabliss said...

Thank you for your comment on my blog, it really meant a lot.

You're an incredible woman, I hope you know that. I am so sorry that you have had to go through this. I can't imagine how scared you must have been or what this all must have been like for you.

I'm just so sorry. None of this is fair.

A. said...

I am so sorry for the nightmare you've been through with the OHSS and it is so unnerving and frustrating to just read about the lack of consistency and follow-up in your medical care...I can't imagine what that must have been like for you. I am thinking of you and rooting you on always.

angryuterus said...

Wow! Did they not think that with your legs and genitals being so swollen that maybe, just maybe you might have been going into pulmonary edema?? Maybe slowing or stopping the IV would have helped, or maybe giving a diuretic to help take off some of the fluid? I don't know a lot about the treatments of OHSS, or about OHSS itself, so maybe a diuretic would have been contraindicated, but really? What shitty care. (Sadly though, if you're in a OB group with a lot of doctors, they like to pass you around like a hot potato, which is why I will only go to a small office or a private office.) I'm sorry you had to go through that. I would never return to that hospital again, nor would I return to that OB or infertility practice again. :(

angryuterus said...

(Oh, my bad... flash pulmonary edema...)

Thursday, August 25, 2011

My OHSS Story - Part IV

. . . Once in the ICU things started happening quickly.  It was a whirlwind.  I suppose they are used to having to do things at top speed in the ICU and they were true to form.  In no time at all I had an IV drip, sensors for EKG were slapped on me and I had machines monitoring my pulse, heart, and oxygen continually.  Maybe blood pressure too?  I can't remember.  I had x-rays and blood draws and another ultrasound in no time at all.  I was in between being panicked from the sense of immediacy and just thankful that I could finally get help.  I am not sure if this is how others feel, but when I was admitted I was just as fearful as I was relieved.

I was in the ICU until the following night.  The pain was still radiating and bodily functions still painful.  The staff there was good.  Different nurses and doctors would come and check on me, but it was there that I first started hearing the questions.  How did this happen to you?  Why is the treatment for this an IV?  Why are you swelling?  At that point, this was only from one whacky nurse, but really?
 
The night I was moved out of ICU though, I started having more complications.  As friends and family visited throughout the night, I reclined in my amazing mechanical bed feeling fairly fine.  The laughter hurt, but other than that, I was feeling decent.  But after everyone left and I got up to use the bathroom, I was shocked to find that the swelling had now moved down into my legs.  They were stiff and rock hard just like my abdomen and I could barely move them to walk.  Other parts were swollen as well.  So swollen.  A quite irreverent nurse put it the best as she examined me saying, "Oh, it's like you grew a pair, huh?"  So inappropriate, but so hilarious.  It was terrible and rivaled the moderate pain of my ovaries themselves.  In the middle of the night, I started having trouble breathing.  When my husband would pull me up or help me change positions, I couldn't breathe.  When I would try to take a breath, my windpipe seemed to be abruptly cut off half way through and I would be sent into a coughing fit.  I was scared.

The following days brought more frustration.  Though I felt good about being at a hospital in case something happened, my care really didn't seem consistent.  Having never been hospitalized, perhaps this is the norm, but I was surprised that my clinic sent a different OB to see me every day.  At the same time, they could treat me and my ovaries, but they could not treat the lung problems I was having.  Nor did they really seem to know much about how to treat my body chemistry that was completely off-balance.  It was frustrating and for good reason.  I will say that if you ever go through hyperstim, it is difficult because there is no treatment.  Still, you do have to be monitored and receive supportive therapy to ensure nothing does happen.  This can be frustrating because you really don't feel as if anyone is necessarily acting as your doctor.  Different doctors would come in, all with varying degrees of bed-side manners, ask how I was doing and then more or less leave.

One day, I just lost it.  Yet another OB doctor came in, asked how I was doing, and then proceeded to ask me what the plan was and if any other doctors were assigned to my case.  What?  You're asking me?  Isn't this stuff in my chart?  Didn't you just review it?  He, quite unprofessionally went on to question why I had an IV and asked who ordered it.  He discussed how he thought it was an overreaction to put me in the ICU.  He told me how the pulmonary specialist that had been seeing me in the ICU had been called after my breathing had worsened and had questioned why he should see me at all.  I wasn't his patient.  He didn't want to come down.  After this frustrating conversation, I laid down.  My heart was racing, my breath so short.  I was upset, but still relatively calm, so I didn't see any reason for this distress.  In a minute, I had called the nurses asking if my oxygen level could please just be monitored as I was having so much trouble breathing.  Enter OB doctor.  Cue respectful tirade which went something like this:

"I know that I've never been in a hospital or in this situation before and don't want to be disrespectful of how things work, but I'm not feeling comfortable here.  I see a different OB every day who asks me about my symptoms and then asks me about the treatment I'm receiving.  I can't answer the question of why I am on an IV.  I can't answer the question of why I was admitted to the ICU.  I can't answer the question of why I did not receive any attention while I was calling and even in clinic Sunday through Wednesday.  But I'm here and there are issues.  I understand that there isn't any treatment and I can only receive supportive therapy, but I feel as though I am receiving more questions from healthcare professionals than I am receiving answers.  I don't know if my ovaries have shrunk.  I don't know what my lungs look like.  I haven't had an ultrasound nor a chest X-ray since Thursday.  Again, I don't want to be disrespectful, but consistency would definitely make me feel a little more at ease here.  Or even to feel like someone knew my case and cared to look over my chart and see me.  I'm having issues breathing, I need to see a doctor for that.  After everything that has happened over the last week and the lack of response from the clinic, we are feeling so vulnerable right now.  We want to put our trust in the healthcare professionals here, but don't really know who that is."

Within about 5 minutes, I was hooked up to a box that monitored my pulse rate and oxygen.  Within 10, I was wheeled down for a chest X-ray and ultrasound.  And, to say the least, I was feeling quite empowered for the rest of the day.

To be continued . . .

4 comments:

bodegabliss said...

Thank you for your comment on my blog, it really meant a lot.

You're an incredible woman, I hope you know that. I am so sorry that you have had to go through this. I can't imagine how scared you must have been or what this all must have been like for you.

I'm just so sorry. None of this is fair.

A. said...

I am so sorry for the nightmare you've been through with the OHSS and it is so unnerving and frustrating to just read about the lack of consistency and follow-up in your medical care...I can't imagine what that must have been like for you. I am thinking of you and rooting you on always.

angryuterus said...

Wow! Did they not think that with your legs and genitals being so swollen that maybe, just maybe you might have been going into pulmonary edema?? Maybe slowing or stopping the IV would have helped, or maybe giving a diuretic to help take off some of the fluid? I don't know a lot about the treatments of OHSS, or about OHSS itself, so maybe a diuretic would have been contraindicated, but really? What shitty care. (Sadly though, if you're in a OB group with a lot of doctors, they like to pass you around like a hot potato, which is why I will only go to a small office or a private office.) I'm sorry you had to go through that. I would never return to that hospital again, nor would I return to that OB or infertility practice again. :(

angryuterus said...

(Oh, my bad... flash pulmonary edema...)