My first surgery with Dr. Dulemba was 2/23/18 at Medical City in Denton TX.
I had to be at the hospital to check in for surgery at 6 am. It was again, pouring rain and an intense lighting storm. We thought we were going to get struck on the way from the car to the hospital.
Check in went fast and they brought me back to get ready for surgery. I was definitely a bundle of nerves. Got into my snazzy gown and the wonderful OR prep nurse got the IV in the first try (they have issues with my veins usually). I got scrubbed, prepped and shaved. The anesthesiology team came in and we discussed my nausea after surgery. They would make sure I had zofran after surgery. We went over everything, signed paperwork etc. They were also very nice. Several others were in and out with paperwork, checking my vitals, checking my blood sugar. Dr. Dulemba came in and talked with us. He was very reassuring. They put the happy juice in my IV and I don't remember anything else until I woke up.
The first thing I remember feeling is the catheter, I really don't like them. And being wheeled out of recover into my room, I wasn't really awake yet.
Then I feebly yelled, I am going to be sick. Thankfully they got me a container in time, but that is not fun right after surgery. They got me zofran. I had some pain, it wasn't horrible though. I was really out of it and once I stopped puking and pushed my morphine button a few times I was out. I remember briefly talking to my mom, who said my surgery was about 3 hours and that she would come back later and let me rest. Once I had a good sleep I woke up, feeling quite amazing. I texted my mom saying I am feeling perky. I am sure the morphine pump had something to do with that ;) But really I felt great.
Dr. Dulemba has a very specific routine for his patients. Everyone stays the night. Pain control is big. Catheter stays in until morning. Rest is important. I also had the on-que pain pump which is crazy but amazing. My room was amazing, single room, very very quiet and spacious. My nurses were also amazing. They checked me at midnight and 4 am. And were quick to respond if I used the call button. I did have an issue with the catheter not wanting to drain, but they moved the hose around and it started draining again.
Oh, you probably want to know what he found. Severe adhesions, when he first went in he couldn't even identify any anatomy they were so bad. The mass in question that was in debate about what it was??? It was a mass of endo around my round ligament where it goes into the inguinal canal. There was clearly no hernia. My round ligaments also had adhesions and were stuck to the ovaries and bowels which were also stuck to my vaginal cuff. There was a spot on my sigmoid colon and the right pelvic wall that he also removed that looked like endo. Ovaries were both removed, there was no saving them they had been completely taken over by adhesions. Dr. Dulemba was horrified at what all was going on and that nobody had believed how much pain I had to be in with all that going on.
Yes! I felt vindicated, yet again. I was not crazy, it was not all in my head!
The next morning they took me off the morphine pump and removed the catheter. I got to eat actual food. I must say the hospitals food could use some improvement, but it wasn't horrible. I was able to get up and go to the bathroom and do some walking. Dr. Dulemba came in early afternoon to visit with me and discharge me. He is an amazing surgeon. I was definitely feeling so much better already! He felt that Dr. Arrington had done a great job with my first surgery and that the endo removed was new not missed.
The on-que pain pump stayed in until Sunday, surgery was Friday. Then I had to removed the tubing through the small hole just above my pubic bone. That was a weird experience, but I managed to do it without freaking out too bad ;)
Sunday evening I was feeling good enough to have lunch with my cousin Pete and his wife Nikki who live nearby.
My followup was on Tuesday morning and my second look surgery was scheduled for Wednesday. I will write another post about that soon.
Tuesday, March 20, 2018
Friday, March 16, 2018
Travel Adventures; The loss of my ovaries; Pre-Op
February 21st and 22nd 2018
My mom and I set out late in the evening of the 21st for TX. There are no nice flights out of Montana and it seemed it was butt crack of dawn or middle of the night. We chose late which later we learned would be a mistake.
When we arrived at midnight at DFW in TX, it was threatening to be freezing rain or snow and people were freaking out. By the time we got our bags and took the bus to the rental car station we learned that all the budget employees went home in fear of the storm. But that we could go wait in the very long Avis line, who had 1 customer service rep.....It was late, we were exhausted and hungry. After nearly 2 hours of waiting in line we were finally given a car.
In the dark and pouring rain that was on the verge of freezing we made our way to the hotel. We had trouble figuring out the car headlights, the GPS decided to have us avoid tolls and it was an utter disaster. But we finally got there. Since I would be having to do liquid diet and bowel prep that day we decided to run for a bite to eat. But the only thing we could find nearby open at 3 am was a Jack in the Box in a sketch location....We finally got to bed about 4 am and had to be up for a 9 am Pre-Op Appointment. We were exhausted.
The next morning it is pouring rain and we couldn't figure out how to get to the front entrance of the office building so we climbed the steep back steps up the hillside. So we get to the pre-op appointment and find I was supposed to have had a full bladder for u/s. Nobody told me and but the very nice radiologist just worked with it. On the U/S she clearly noted that both sides of my pelvis were not moving, along with the center as well. Looked like things were all glued together, she showed me on u/s. She would push on my belly while looking with the u/s wand and it was quite visible. My left ovary was nearly impossible to find but she finally found it. What a relief I thought to myself, I at least had some adhesions I thought, it wouldn't be a wasted trip if nothing else was wrong. At the same time I wondered why no other radiologists or doctors had thought to check for adhesions which were clearly visible on U/S.
Then it was into Dr. Dulemba's office where we met him to go over everything. Our visit lasted almost 4 hours. We went over all the details of my issues, treatment plan and everything endo related. It was so reassuring to know I was in good hands. My mom was re assured as well. Dr. Dulemba is very personable, has a sense of humor with some sarcasm but very very knowledgeable about endometriosis and he isn't afraid to go against other doctors who's interest lies in drug companies or failing treatments.
During the treatment planning he pulled out the u/s report to go over it. We had already discussed removing ovaries as they seemed to be a source of pain for me, I did not take this decision lightly and we talked about it a lot. I was secretly hoping that he would find another cause for the pain for my ovaries and that I could keep them. Because facing surgical menopause with PCOS and Endometriosis was scary stuff. He said, from what we can see on the ultrasound you egg supply is gone and your ovaries are atrophying, you are already headed into or are in menopause. I wanted to burst out into tears, seriously. I couldn't believe it. Yes I was considering having them removed, but finding out they were dying and dead was somehow completely horrifying. The realization of menopause seemed horrifying at the age of 38.
Why???? Why were they dead??? I had been having some hotflashes and mood swings the past few months but nothing I thought was menopause. Although my mom looked at me and said "this makes perfect sense for how you have been feeling." Dr. Dulemba's personal thought is that when you take the tubes and leave the ovaries (my hysterectomy and tube removal was about 6 months ago) they are part of the ovary and share a blood supply. He feels that taking just the tubes can contribute to the ovarian failure when that blood supply is cut off. Like I said, he thinks outside the box. I feel like surgeons always encourage taking the tubes as that is where they believe much of ovarian cancer begins. But I was never told there was a risk to it during my first surgery. Here is an article on that https://academic.oup.com/humrep/article/18/10/2175/622722. So it was decided the ovaries would be removed.
I got my prescription for my pain meds and we headed to the hospital to get all registered. This is where we made a big mistake. We thought it was just going to be a little blood work and then we would go eat. Nope lots of paperwork, bloodwork, and surgical counseling. By the time I got done with it all both Mom and I were exhausted, hungry and emotional. Fluctuating between tears and hanger (hungry anger). It didn't help it was still pouring rain and cold! We had skipped breakfast to catch a little more sleep not realizing how long our day was going to be. Well I was on liquid diet, but my support system was hungry. The hospital staff was amazing and kind though and we appreciated their smiling faces. Ryann with the surgical counseling was super sweet and helpful.
So we ran to walmart to get my prescription filled and got some food for Mom and my other bowel prep medicine. Then went back to the hotel and crashed! Awake long enough to do the bowel prep, YUCK, and have a video chat with my sweet kids and husband. I had to report to the hospital for surgery at 6 am. Thankfully the hotel was quiet and the beds were super soft and comfy and despite nerves for surgery I actually slept.
My mom and I set out late in the evening of the 21st for TX. There are no nice flights out of Montana and it seemed it was butt crack of dawn or middle of the night. We chose late which later we learned would be a mistake.
When we arrived at midnight at DFW in TX, it was threatening to be freezing rain or snow and people were freaking out. By the time we got our bags and took the bus to the rental car station we learned that all the budget employees went home in fear of the storm. But that we could go wait in the very long Avis line, who had 1 customer service rep.....It was late, we were exhausted and hungry. After nearly 2 hours of waiting in line we were finally given a car.
In the dark and pouring rain that was on the verge of freezing we made our way to the hotel. We had trouble figuring out the car headlights, the GPS decided to have us avoid tolls and it was an utter disaster. But we finally got there. Since I would be having to do liquid diet and bowel prep that day we decided to run for a bite to eat. But the only thing we could find nearby open at 3 am was a Jack in the Box in a sketch location....We finally got to bed about 4 am and had to be up for a 9 am Pre-Op Appointment. We were exhausted.
The next morning it is pouring rain and we couldn't figure out how to get to the front entrance of the office building so we climbed the steep back steps up the hillside. So we get to the pre-op appointment and find I was supposed to have had a full bladder for u/s. Nobody told me and but the very nice radiologist just worked with it. On the U/S she clearly noted that both sides of my pelvis were not moving, along with the center as well. Looked like things were all glued together, she showed me on u/s. She would push on my belly while looking with the u/s wand and it was quite visible. My left ovary was nearly impossible to find but she finally found it. What a relief I thought to myself, I at least had some adhesions I thought, it wouldn't be a wasted trip if nothing else was wrong. At the same time I wondered why no other radiologists or doctors had thought to check for adhesions which were clearly visible on U/S.
Then it was into Dr. Dulemba's office where we met him to go over everything. Our visit lasted almost 4 hours. We went over all the details of my issues, treatment plan and everything endo related. It was so reassuring to know I was in good hands. My mom was re assured as well. Dr. Dulemba is very personable, has a sense of humor with some sarcasm but very very knowledgeable about endometriosis and he isn't afraid to go against other doctors who's interest lies in drug companies or failing treatments.
During the treatment planning he pulled out the u/s report to go over it. We had already discussed removing ovaries as they seemed to be a source of pain for me, I did not take this decision lightly and we talked about it a lot. I was secretly hoping that he would find another cause for the pain for my ovaries and that I could keep them. Because facing surgical menopause with PCOS and Endometriosis was scary stuff. He said, from what we can see on the ultrasound you egg supply is gone and your ovaries are atrophying, you are already headed into or are in menopause. I wanted to burst out into tears, seriously. I couldn't believe it. Yes I was considering having them removed, but finding out they were dying and dead was somehow completely horrifying. The realization of menopause seemed horrifying at the age of 38.
Why???? Why were they dead??? I had been having some hotflashes and mood swings the past few months but nothing I thought was menopause. Although my mom looked at me and said "this makes perfect sense for how you have been feeling." Dr. Dulemba's personal thought is that when you take the tubes and leave the ovaries (my hysterectomy and tube removal was about 6 months ago) they are part of the ovary and share a blood supply. He feels that taking just the tubes can contribute to the ovarian failure when that blood supply is cut off. Like I said, he thinks outside the box. I feel like surgeons always encourage taking the tubes as that is where they believe much of ovarian cancer begins. But I was never told there was a risk to it during my first surgery. Here is an article on that https://academic.oup.com/humrep/article/18/10/2175/622722. So it was decided the ovaries would be removed.
I got my prescription for my pain meds and we headed to the hospital to get all registered. This is where we made a big mistake. We thought it was just going to be a little blood work and then we would go eat. Nope lots of paperwork, bloodwork, and surgical counseling. By the time I got done with it all both Mom and I were exhausted, hungry and emotional. Fluctuating between tears and hanger (hungry anger). It didn't help it was still pouring rain and cold! We had skipped breakfast to catch a little more sleep not realizing how long our day was going to be. Well I was on liquid diet, but my support system was hungry. The hospital staff was amazing and kind though and we appreciated their smiling faces. Ryann with the surgical counseling was super sweet and helpful.
So we ran to walmart to get my prescription filled and got some food for Mom and my other bowel prep medicine. Then went back to the hotel and crashed! Awake long enough to do the bowel prep, YUCK, and have a video chat with my sweet kids and husband. I had to report to the hospital for surgery at 6 am. Thankfully the hotel was quiet and the beds were super soft and comfy and despite nerves for surgery I actually slept.
What causes pain and stumps doctors? Endometriosis.
You all tired of my saga yet? I know some family and friends are, but I am going to share anyhow.
I am backtracking with these posts a bit. This is from the Middle of February.
After nobody could decide what my inguinal growth was or wasn't. I scheduled a telephone consult with Dr. Dulemba. Because what causes pain and stumps doctors? Endometriosis.
The consult went great. He always know just what to say and what questions to ask. I had also had some bowel issues again and other thing like my painful ovaries that I was mostly set to ignore but he included them in the mix.
We mulled over whether my groin pain could be a hernia, or endo or both. He concluded it would be best to take care of the gyn problems since we knew they existed instead of jumping into hernia surgery that may not even be a hernia. He felt there was a likely chance that I also had adhesions. That 3-6 post op months is when they tend to really start causing drama. We talked about the possibility of removing my ovaries, since I felt that they were a huge source of pain still.
I said to him "I am beginning to feel like this is all in my head again." He reassured me it was not in my head and that he would do what he could to help figure out what the pain exactly was.
So the next morning I emailed his scheduler. He had an opening for surgery the next week. I was shocked as I was sure I would have to wait longer, and if I didn't take the appointment I would have to wait another month for the next opening. After some crazy logistical calculations and discussions we decided to take that surgery date. I have to say that my husband is the most wonderful person! He never questioned it once, or was upset to have to have kids for 10 days or attempt to work from home. He just wanted me to feel better.
My mom was able to take the time to go down and help me through surgery. I am extremely grateful for her help.
Now this is not like planning a normal surgery, in your hometown, where you get to come home after your surgery to your own house. I would be flying from MT to TX and back again 9 days later, after 2 surgeries. SCARY STUFF!
I was able to get a medical rate through Delta for the airfare which helped and the hotel had a hospital discount. This was still not going to be cheap, but at least the surgeon took my insurance.
Over the week waiting for surgery, I felt immense guilt. Guilt that after one surgery that was supposed to fix me up, I was still in pain, still unable to be a good mom and wife, and costing our family more money. I was terrified he wouldn't find anything wrong. Yep, after all those years of being told it was all in my head and to lose weight, it still stuck with me. Even after an official diagnosis. I was terrified of being a hypochondriac. Or that my pain wasn't really that bad.
This says a lot about what its like. https://www.buzzfeed.com/laraparker/what-its-like-to-get-diagnosed-with-a-chronic-illness?
I am backtracking with these posts a bit. This is from the Middle of February.
After nobody could decide what my inguinal growth was or wasn't. I scheduled a telephone consult with Dr. Dulemba. Because what causes pain and stumps doctors? Endometriosis.
The consult went great. He always know just what to say and what questions to ask. I had also had some bowel issues again and other thing like my painful ovaries that I was mostly set to ignore but he included them in the mix.
We mulled over whether my groin pain could be a hernia, or endo or both. He concluded it would be best to take care of the gyn problems since we knew they existed instead of jumping into hernia surgery that may not even be a hernia. He felt there was a likely chance that I also had adhesions. That 3-6 post op months is when they tend to really start causing drama. We talked about the possibility of removing my ovaries, since I felt that they were a huge source of pain still.
I said to him "I am beginning to feel like this is all in my head again." He reassured me it was not in my head and that he would do what he could to help figure out what the pain exactly was.
So the next morning I emailed his scheduler. He had an opening for surgery the next week. I was shocked as I was sure I would have to wait longer, and if I didn't take the appointment I would have to wait another month for the next opening. After some crazy logistical calculations and discussions we decided to take that surgery date. I have to say that my husband is the most wonderful person! He never questioned it once, or was upset to have to have kids for 10 days or attempt to work from home. He just wanted me to feel better.
My mom was able to take the time to go down and help me through surgery. I am extremely grateful for her help.
Now this is not like planning a normal surgery, in your hometown, where you get to come home after your surgery to your own house. I would be flying from MT to TX and back again 9 days later, after 2 surgeries. SCARY STUFF!
I was able to get a medical rate through Delta for the airfare which helped and the hotel had a hospital discount. This was still not going to be cheap, but at least the surgeon took my insurance.
Over the week waiting for surgery, I felt immense guilt. Guilt that after one surgery that was supposed to fix me up, I was still in pain, still unable to be a good mom and wife, and costing our family more money. I was terrified he wouldn't find anything wrong. Yep, after all those years of being told it was all in my head and to lose weight, it still stuck with me. Even after an official diagnosis. I was terrified of being a hypochondriac. Or that my pain wasn't really that bad.
This says a lot about what its like. https://www.buzzfeed.com/laraparker/what-its-like-to-get-diagnosed-with-a-chronic-illness?
Subscribe to:
Posts (Atom)
-
I had an appt. to get established with a new GYN who is local. I was pretty nervous for this appt. And wasn't sure if they would be on... -
Well life got away from me and blogging just didn't happen. So here is a brief recap since my last post. Surgery #2 with Dr. Dulemba a...
-
Here is more of my groin pain saga, this is why it is so important that we keep fighting and keep advocating for ourselves! Yesterday I a...