Saturday, August 27, 2011

My OHSS Story - Part V

. . . The tests that followed, the measuring, the weighing--all confirmed again that I was far beyond severely hyperstimulated.  Ovaries are supposed to be the size of eggs, about 2-3 cm.  Severe hyperstimulated ovaries are the size of grapefruits.  My largest ovary was, in hospital analogies, the size of an IV bag.  The largest measurement was 20.5 cm, with an estimated volume of 1170 mL.  The follicles, or cysts, we all know are ideally measured at 1.8-2.3 cm.  I had numerous cysts covering my ovaries, the largest measuring 5.5 cm.  Unbelievable.

The fluid had begun to move into my lungs, thus the trouble breathing.  Because of the fluid, my lungs weren't able to expand as much as they should.  So, when I was feeling like my breath was cut off half way through my inhalation, it was.  The lungs had hit a wall and could expand no further.

For the entire time I was in the hospital, my belly was measured and I was weighed daily.  Until the very last day, their long tape measure couldn't even come close to fitting around my hard, swollen belly.  The fluid was nearly all in between my ribs and my knees.  I felt huge.  I looked huge.  When I could finally get up one day and shower, it was a scary sight to see my body.  I had sent my husband out to get some nightgowns so I wouldn't have to wear those lovely hospital robes.  Though I would normally get smalls, I told him to be sure to get mediums for me with the swelling.   In mid shower, I was tearfully yelling out to my mother, "Please call!  Tell him to get large!  Tell him to get large!"

When all was said and done, in less than a week I gained 27 lbs, all falling between my ribs and knees.  It was scary.  So scary.

Now, I am on the other side of this nightmare.  My ovaries began to shrink on Monday.  Though there was still a significant amount of fluid affecting my lungs and my liver enzymes were off, they decided I could be released from the hospital with regular monitoring at the clinic.  The first day home was the hardest.  It was exciting to be home, be able to sleep in my own bed, but it was also misleading.  I was home, I could do more, right?  Wrong!

The night we got home, I started bawling on the sofa all because I wanted a water.  I had been getting up and down, getting drinks for a few hours and it had begun to take a tole on me.  Even getting situated was hard.  Here at home there were no nurses to bring you nice, cold drinks whenever you wanted, I couldn't pull a tray right up to my mouth in order to eat my food, there were no bars around to help me pull myself up, and (perhaps the most difficult) whatever I sat on was not mechanized for easy resituating!  So I went through a box of Kleenex and bawled my eyes out.  Even the glasses and plates that I had to lift at home to eat and drink were heavy and causing strain.  How pathetic!

It has been a struggle to learn how to deal with my still enlarged ovaries over the last week or so.  There are still times when my ovaries ache or seem to cramp up, though the sharp, debilitating pain is gone.  I have been walking slow and eating smaller portions, in order to not upset my insides.  Now, with movement coming easier, when I forget to take such precautions and take it slow, my insides rudely let me know!  I am still getting my stamina back.  Having just returned to work as a teacher, the days are very long and I usually head home for the lunch hour to nap.  It is a wonder I can get back up and get through those long meetings that follow.  But when I come home, I collapse again, literally sound asleep in less than 5 minutes.  Breathing is easier with the fluid subsiding and while I am still shrinking bit by bit, I have lost 22 of those 27 pounds I put on.  Follow-up ultrasounds show that the ovaries, though still grossly enlarged, can actually be told apart at this point and continue to shrink.  My liver enzymes are still a bit off, but continue to normalize.  My body is generally more sore all over as I can't stretch or exercise as I normally do.  Indeed, without my back exercises, my back is a mess and causing much pain!

Hubs says I am shut down until after Labor Day and while it is hard, I suppose I agree.  When I think about it, this will mean that I have really been "shut down" for the entire month of August.  I have missed out on so many fun plans this month with friends and family, but I know my health is the most important thing.  Normally, I would push myself far beyond what I should, but with the risks so high--torsion or rupturing of an ovary--I know that I can't.

I feel very lucky to be on the other side of this ordeal intact.  I know that OHSS can turn out so much worse.  With the size of the ovaries being so mind-boggingly huge, I am just as shocked that it did not get worse, that I am intact, and that more than likely there will be no real long-lasting residual effects.

The emotions are pouring out of me in so many ways, on so many fronts.  But for now, I am spent.  I will have to explore those emotions later and nap now!  Goodnight!

6 comments:

E and R said...

I am so sorry you had to go through all of this - I can't even imagine. I am glad you are on the mend and hope that the rest of the healing is fast!

embracingtherain said...

Thanks for commenting on my blog. I am so sorry you had such a horrible experience. I hope you continue to feel better and that you get much better medical care from here on out.

Joys Truly said...

I am so sorry to hear of your ordeal. I hope you are still taking it easy and getting your health back to where it should be.

mommyodyssey said...

Wow, what a story!
I'm really happy to hear you're getting better. I'm glad you shared this story. I also learned the hard way that taking control of your care and listening to your body is critical. It sucks that you had to learn the hard way, but it's amazing that you're sharing the story so hopefully other women can learn from it.
xoxo!

Sybil said...

I am so sorry you have had to deal with OHSS. I have PCOS and knew that I was at a higher risk for it but nothing can prepare you for that pain and realization that it is happening to you. I hope you are seriously considering changing clinics. My husband is an ICU physician and I am so grateful for that. I also feel my clinic mis-managed my case and if it weren't for my ICU husband, the situation would have been far worse. So far I have gotten OHSS 3 times - once sent me to the hospital. My 2nd RE is wonderful and for my 2nd IVF (1st with his office), we used a Lupron trigger and froze all 11 of the embryos. I still had a bit of OHSS (8lb gain in 48hrs) and I was in bed for 3 days following the retrieval...but there was no comparision to the immense pain & breathing issues before. The OHSS is primarily caused by the Hcg shot. If you take another Hcg shot and have several follies, this WILL happen again (unfortunately, I know this by experience). Again, I am so sorry that you have had to experience this. It is not a fun club to be in.

angryuterus said...

OMG. I'm just speachless... I'm so, so sorry you had to go through this! :(

Saturday, August 27, 2011

My OHSS Story - Part V

. . . The tests that followed, the measuring, the weighing--all confirmed again that I was far beyond severely hyperstimulated.  Ovaries are supposed to be the size of eggs, about 2-3 cm.  Severe hyperstimulated ovaries are the size of grapefruits.  My largest ovary was, in hospital analogies, the size of an IV bag.  The largest measurement was 20.5 cm, with an estimated volume of 1170 mL.  The follicles, or cysts, we all know are ideally measured at 1.8-2.3 cm.  I had numerous cysts covering my ovaries, the largest measuring 5.5 cm.  Unbelievable.

The fluid had begun to move into my lungs, thus the trouble breathing.  Because of the fluid, my lungs weren't able to expand as much as they should.  So, when I was feeling like my breath was cut off half way through my inhalation, it was.  The lungs had hit a wall and could expand no further.

For the entire time I was in the hospital, my belly was measured and I was weighed daily.  Until the very last day, their long tape measure couldn't even come close to fitting around my hard, swollen belly.  The fluid was nearly all in between my ribs and my knees.  I felt huge.  I looked huge.  When I could finally get up one day and shower, it was a scary sight to see my body.  I had sent my husband out to get some nightgowns so I wouldn't have to wear those lovely hospital robes.  Though I would normally get smalls, I told him to be sure to get mediums for me with the swelling.   In mid shower, I was tearfully yelling out to my mother, "Please call!  Tell him to get large!  Tell him to get large!"

When all was said and done, in less than a week I gained 27 lbs, all falling between my ribs and knees.  It was scary.  So scary.

Now, I am on the other side of this nightmare.  My ovaries began to shrink on Monday.  Though there was still a significant amount of fluid affecting my lungs and my liver enzymes were off, they decided I could be released from the hospital with regular monitoring at the clinic.  The first day home was the hardest.  It was exciting to be home, be able to sleep in my own bed, but it was also misleading.  I was home, I could do more, right?  Wrong!

The night we got home, I started bawling on the sofa all because I wanted a water.  I had been getting up and down, getting drinks for a few hours and it had begun to take a tole on me.  Even getting situated was hard.  Here at home there were no nurses to bring you nice, cold drinks whenever you wanted, I couldn't pull a tray right up to my mouth in order to eat my food, there were no bars around to help me pull myself up, and (perhaps the most difficult) whatever I sat on was not mechanized for easy resituating!  So I went through a box of Kleenex and bawled my eyes out.  Even the glasses and plates that I had to lift at home to eat and drink were heavy and causing strain.  How pathetic!

It has been a struggle to learn how to deal with my still enlarged ovaries over the last week or so.  There are still times when my ovaries ache or seem to cramp up, though the sharp, debilitating pain is gone.  I have been walking slow and eating smaller portions, in order to not upset my insides.  Now, with movement coming easier, when I forget to take such precautions and take it slow, my insides rudely let me know!  I am still getting my stamina back.  Having just returned to work as a teacher, the days are very long and I usually head home for the lunch hour to nap.  It is a wonder I can get back up and get through those long meetings that follow.  But when I come home, I collapse again, literally sound asleep in less than 5 minutes.  Breathing is easier with the fluid subsiding and while I am still shrinking bit by bit, I have lost 22 of those 27 pounds I put on.  Follow-up ultrasounds show that the ovaries, though still grossly enlarged, can actually be told apart at this point and continue to shrink.  My liver enzymes are still a bit off, but continue to normalize.  My body is generally more sore all over as I can't stretch or exercise as I normally do.  Indeed, without my back exercises, my back is a mess and causing much pain!

Hubs says I am shut down until after Labor Day and while it is hard, I suppose I agree.  When I think about it, this will mean that I have really been "shut down" for the entire month of August.  I have missed out on so many fun plans this month with friends and family, but I know my health is the most important thing.  Normally, I would push myself far beyond what I should, but with the risks so high--torsion or rupturing of an ovary--I know that I can't.

I feel very lucky to be on the other side of this ordeal intact.  I know that OHSS can turn out so much worse.  With the size of the ovaries being so mind-boggingly huge, I am just as shocked that it did not get worse, that I am intact, and that more than likely there will be no real long-lasting residual effects.

The emotions are pouring out of me in so many ways, on so many fronts.  But for now, I am spent.  I will have to explore those emotions later and nap now!  Goodnight!

6 comments:

E and R said...

I am so sorry you had to go through all of this - I can't even imagine. I am glad you are on the mend and hope that the rest of the healing is fast!

embracingtherain said...

Thanks for commenting on my blog. I am so sorry you had such a horrible experience. I hope you continue to feel better and that you get much better medical care from here on out.

Joys Truly said...

I am so sorry to hear of your ordeal. I hope you are still taking it easy and getting your health back to where it should be.

mommyodyssey said...

Wow, what a story!
I'm really happy to hear you're getting better. I'm glad you shared this story. I also learned the hard way that taking control of your care and listening to your body is critical. It sucks that you had to learn the hard way, but it's amazing that you're sharing the story so hopefully other women can learn from it.
xoxo!

Sybil said...

I am so sorry you have had to deal with OHSS. I have PCOS and knew that I was at a higher risk for it but nothing can prepare you for that pain and realization that it is happening to you. I hope you are seriously considering changing clinics. My husband is an ICU physician and I am so grateful for that. I also feel my clinic mis-managed my case and if it weren't for my ICU husband, the situation would have been far worse. So far I have gotten OHSS 3 times - once sent me to the hospital. My 2nd RE is wonderful and for my 2nd IVF (1st with his office), we used a Lupron trigger and froze all 11 of the embryos. I still had a bit of OHSS (8lb gain in 48hrs) and I was in bed for 3 days following the retrieval...but there was no comparision to the immense pain & breathing issues before. The OHSS is primarily caused by the Hcg shot. If you take another Hcg shot and have several follies, this WILL happen again (unfortunately, I know this by experience). Again, I am so sorry that you have had to experience this. It is not a fun club to be in.

angryuterus said...

OMG. I'm just speachless... I'm so, so sorry you had to go through this! :(