Another Infection…

On Monday, I could not stay awake more than one hour at a time. I became very ill Monday afternoon and evening. I had the chills, goosebumps and a fever. I was freezing even outside here and it’s hot here. I felt so very sick and weak. This went on for 3-4 hours, then it went away and I felt better before bed time.

The next morning I called my doctor to let them know and I was called back quickly and told to go to the ER because I might have an abscess. I spent six hours in the ER. They took urine, blood and did a CT scan with IV contrast. It took forever for the doctor to come in with the results. I have two small abscess’ and a acute infection. I had to get an IV push of strong antibiotics. I have been on antibiotics, so how the hell did I get the infection. I guess because of the damn catheter! It took an hour and a half to get the antibiotics in me and I felt super sick on my way back to the house. They gave me an RX for seven days of the antibiotics, so now I have to go home two days early from here, in time to get a RX called in back at my house and have it to take so I don’t miss any days. One thing after another!

So, today I now have urine leaking out around the catheter and running down my leg. My bladder has been hurting horribly and I’m so darn exhausted. So, I have to wear depends instead of underwear and I have to carry a tote bag around that holds the big bag for the catheter, because I can’t use the leg bag. I had to get something in the store so I put on my long dress and my dad drove me there. At check out I bent forward to sign my slip and I felt urine running down my leg. That is why I now have to wear depends too! I came back to the house and cried! I am so tired of the crap. Always something.

I got rid of the blood and clots and then I get super sick and have an infection, then I am leaking urine. I found that it is common when you have a catheter in for a long period of time. What else happens that is common is for your bladder and spasms to get worse. OMG, I can’t even sit still and not be in pain. I took everything I had and after an hour I finally had some relief. I am at my wits end with all of this. Maybe I should sue, lord knows I have been through hell and it all started with the hysterectomy and the doc not taking extra cautions that would of caught the hole in my ureter right then and there and he could of fixed it right there and I never would of gotten deathly ill or had to have a large incision abdominal surgery, etc… Pain and suffering alone……. I may do it. Lord knows I need the money. I just don’t know if I can deal with the stress of it. I can’t sit for too long or my tailbone hurts so bad I can’t stand it. I just need everything to calm down and for my body to heal and this to be all over with!

Awake at 3:00 AM….

Just about every night I am wake from 3-5 am. Sometimes I wake up with horrible cramps in my legs, feet or hands and sometimes I just wake up hurting in my back, side or hips and have to get up.

Having had two major surgeries six weeks apart sure has taken a toll on my body. I am exhausted all the time. Every two hours I have to go lay down and nap. I have aching pain throughout my abdomen and back. My hips feel like they are badly bruised, yet there is nothing on them. I can’t even lay on them due to how badly bruised they feel. The incision line is also causing me a great deal of discomfort! And let’s not forget the damn catheter that constantly hurts!

I try to not dwell on these things. I try to keep my mind occupied with something, but when your exhausted and hurting this much, it’s extremely difficult.

Everyone told me that after my hysterectomy I would be saying it was the best thing I ever did. I supposed that may of been true if I had not had the complications and required another major and even more invasive surgery. If I could, I would go back and never have the hysterectomy. I would deal with the pain I had instead of all of this!

Today would of been 8 weeks from my radical hysterectomy. All the women in my group who had a hysterectomy in that week time frame are now back to work and back to normal. Mine was off from the start though. Usually after a hysterectomy you don’t bleed much, just spot for a bit. I bled more than spotting right from the start, which then became heavy bleeding and then turned to very watery blood coming out of me. Unfortunately for me, it took the doctor way too long to figure out that I had a hole in my ureter and it was leaking out of me through a hole in my vaginal cuff. I guess the force of all the fluid caused my vaginal cuff to open up, so the fluid could escape. I also had a large hematoma in my abdomen. I didn’t feel right from the moment I woke in recovery and over the course of 2 weeks I progressively become more and more ill. Even then, the doctors office ignored my pleas that something was wrong. How do you tell a patient to just watch the large amount of fluid coming out of them. Nowhere can I find where this is ever normal. Due to that, I spent two days getting sicker and then the fluid began to smell like death. Even with CT scans they did not recognize the hole in the ureter for another week. The place that out a stent in from my kidney to bladder, screwed up and it came out the hole in my ureter and was visible through the hole in my vaginal cuff. Nothing but errors over and over again. I do believe the hospital here tries to kill you.

Then I had a large abdominal incision to repair it all right at 6 weeks post-op from the first surgery. I NEVER want to go through that again. I had an epidural and was still in way too much pain! The first two days I just wanted to die. Then you have to get out of bed and move and every movement is horribly painful, but the more you do it, the quicker it eases up.

Now I am at 2 weeks post-op for the last surgery. I am at my parents house in Florida where it is peaceful and quiet so I can recover the best possible way. My house is full of negativity and drama and not a good place to heal. My appetite is better this time. I am actually eating and I was able to have a Bowel Movement after 8 days instead of two weeks like the first time. It just gets hard to push onward sometimes. I get so tired of being so tired and hurting. I want so badly for everything to heal nicely and there be No more problems. I have a catheter in me and they won’t remove it until September 10th and that is if the test they do on the 5th shows everything is working right. I am concerned of what I will face once it is removed. Will I have urine leakage for a while until my bladder works properly? Will I be able to pee on my own? I wish there was something I could to in order to ensure I will be just fine once it is removed. So much on my plate, I have made it through so many obstacles too. I am ready to be whole again, to be me!………….

Foley Catheter and blood clots…

I just wanted to post an update regarding the Foley Catheter I have.

I woke from surgery on August 11th with the Foley catheter in place as well as a drain, an NG tube and a giant incision with over 30 staples.

On Wednesday I saw my doctor to have the drain and staples removed, this was nine days post-op. It burned like hell when they took the drain out. They had me cough hard twice while they did it and the burning pain lasted a solid minute. I did not feel any of the staples as they were removing them. Though they did leave a long hard stitch in my drain area and I kept wondering what was poking me.

When I returned home from the doctors visit I was walking around a lot to pack my things so I could go home with my mother the next morning. That night I started passing blood clots that looked like skinny worms. I continued to have spells where I passed these clots through the next day and it was often followed by some blood. I called the doctors office as soon as I arrived at my parents house. No one called me back, so the next day, I was still passing clots and blood, I called again. I waited all day and no one called me back… Ugh! At 4pm I called my doctors other office and left a message with his nurse, she called me back. I just needed to know if it was normal to pass clots and what I needed to do or watch out for. She said it can be normal to pass clots, but I needed to stop all activity and rest. If the clots got worse or continued after this weekend I was to go to the local ER here. I know the concern is that a clot will clog up the catheter line. I did have a few hours yesterday after noon where I did not have anything coming go out in the catheter bag and I began to worry. The only thing I could of doing was to drink lots of water, to keep it flowing. So, every time I got up I drank a large glass of water. I finally had a whoosh and several clots followed by blood. By the evening I had a bag full of clear urine without a single clot or blood. Yay! And when I dumped I the middle of the night it was also clear with out a single clot. Progress!

I cannot stress enough how important it is to drink lots of water… H2O… To keep the urine flowing and your foley line open. I have to have this catheter until September 10th, which is exactly 30 days. I worry about being able to pee on my own then or any other issue that Can arise from keeping a catheter in so damn long!

I could find anywhere online that told me if the blood clots where normal so I want to make sure I post everywhere I can think of this information. No one should have to sit and worry for days about something. In this day and age we should be able to get answers quickly.

Recovering at My Parents…

I saw the doctor on Wednesday and my mom went with me. They took out the many staples, which did not hurt one bit and then they took out the drain, which felt like a horrible burning pain for a solid minute, then eased off. My mom told my doctor how recovering at my home was not a good place to be and he listened to her. He moved things around and made it so I could go home with her for two weeks, the come back and have a test done to make sure my urinary tract is working right and if so, I will finally get the catheter out on the 10th of September. I am concerned about peeing on my own after so long with a catheter, but I did read about some bladder strengthening exercises you can do to help before it is removed, so I need to look into that! I really hate having this catheter. It is uncomfortable and often hurts. I started passing clots and some blood two days ago, I called the doctor but no one has called back yet so I don’t know if it is normal or not. I don’t like the leg bag as it will not stay up on my leg because I have toothpick legs. I only use it if I have to go out somewhere like the doctor, etc. I just use the big bag and carry it around in a tote bag. It is uncomfortable to sit anywhere, but it need to sit on several pillows. I think one of those donut pillows would help so nothing is pushing on the catheter.

My incision line is very long. It is still weeping some from the staples being removed, but looks good and healed well. I have times through the day where it stings and burns, but for the most part it’s not an issue at all. Which is surprising to me with how big it is. It hurt like holy hell the first couple of days though, even with an epidural. Though I could still feel my legs so I don’t think the epidural was placed right. At least it took some of the pain away.

I finally had a bowel movement today. It seems to take four days of drinking miralax to have one. It took 11 days from surgery, but they did give me something to drink the third day in the hospital that gave me horrible cramps and then I exploded with green diarrhea….. TMI! The colace and miralax make it soft and easy to come out, but a pain to get cleaned off. Ok, enough TMI for now!

Over all, I have decent pain control with some issues in the evenings. I sleep about two hours then wake to leg and foot cramps that keep my up for two hours and then I sleep about two more hours and I am up for the day. I take a nap usually in the afternoon. Not much sleep, but I don’t feel horrible either. I try to walk around a it when ever possible.

I came home with my mother to recover for two weeks in peace. My house is full of negativity and drama. Here it is quiet and peaceful so I will recover much better here, not being stressed out every single day! “B” was pissed I was coming here. He just can’t think of anyone before himself. I came here to spend a couple weeks with my parents back in February and ever since “B” has said he was taking his vacation this year by himself, I guess to punish me, even though I don’t care! And he is taking his vacation by himself next month for a week up by his mother. I don’t understand why he gets so mad about me going to my parents. It is a retirement community and I don’t do anything. Not to mention I can’t even do anything now since I am on rest and recovery for 6-8 weeks. When I am home I am in my room alone, he doesn’t even come in there and talk to me. He sits I front of the TV or computer, but never spends a single minute with me. So, why does it matter if I am there or not. It is like he is happy as long as he knows I am in the house. The only draw back to being here is it is pretty hot, but my father has lowered the A/C for me this time, so I am pretty comfortable as long as I stay where the fan is. It truly amazes me how horrible negative and stressful my house is, just being in it. My mom was warn out just from being there for so long. Heck, one day wears you out. You can feel it in the air. I want everyone to be happy. I have been extremely sick and I need desperately to recover well this time. I would not do things that would upset “B” but I had to think of me first this time. It was a sudden choice I made too, at the doctors office when he and my mom wanted me to have a calm recovery period. So I came home and pretty much dumped it on him. He was instantly pissed, you could see it and feel it and the way he acted. I don’t do that to him when he goes places. When he said he was going to s moms alone I was ok with it, I was a bit upset that he chose to do it during my recovery period when I needed help though. I quickly got over that when I realized he doesn’t really do much to help me anyway.

When we force ourselves to connect against our heart’s
desires, we create false, resentful relationships; when
we disconnect from the people who deplete us, we set
them free to find their tribes while we find ours.

~ Logging Off: The Power of Disconnection

8 days Post-Op of 2nd Surgery…

Today is day 8 of my post-op for the large abdominal surgery to fix all the complications from my radical hysterectomy. Yesterday was a bad pain day, but today I am doing pretty good. The pain changes like the wave of the tide. You can feel pretty good and then, wham, your hurting like nobodies business!

Yesterday I took a shower. After a major surgery, taking a shower wipes you out completely and increases pain levels. This seems to go on for weeks. You have to only plan on taking a shower and then a nap.

Today, my pain has been much better. I don’t have my incision screaming at me like it did yesterday. The catheter is still a huge problem. My entire abdominal muscles wrench up tight through out the day. Sometime while I urinate and sometimes I don’t urinate. The doctor called in a medication that is supposed to help that and turns your pee orange. Actually it’s an orange red color. The problem is, I am still wrenching up. Not as often, but it is still happening. I did, however, get seven hours of sleep last night, so the medication must be helping out some. My catheter bag was filled to the top when I woke at 7:30. I among supposed to lift anything and when that bag is full it is super heavy. Luckily, my mom was right there to carry it into the bathroom for me and dump it. It hurts up in my pee hole all the time. I think my body wrenches up because it is trying to get the damn thing out of me.

The Drain is still painful and I still get stabbing pains deep inside me where it is. It should come out tomorrow at my doctors visit though so that will all stop then. They are also removing my staples. I am going to beg for the catheter to be removed. Tomorrow is 9 days and that is plenty of time for allowing my bladder to rest from the surgery where they had to fix the hole in the ureter and reattach it to my bladder. The longer a catheter is in, the harder it is for you to pee on your own. He said I had to keep it in 1-2 weeks. My incision is very large, it goes a good 4-5″ past my belly button, but it looks very good. So far anyone who sees it is shocked at how big it is. No one has seen an incision this big. My doctor said he needed a lot of room to work and repair everything. They had to manipulate my intestines and clean out all the infection in my abdomen. That scares me, because that is what had to be done to my son when his appendix ruptured and he ended up with scarring on his intestines that would periodically cause blockages and he would be in a ton of pain, go to the ER and end up with an NG tube. I now understand why he hated that tube so much and said he was never having it again. It royally sucks!

I have had major swelling my in my legs and feet. I sleep with my legs propped up and I still have a ton of swelling. The doctor called in two doses of lasix to help expel all the fluid. I took one dose today. I take the other dose tomorrow. Hopefully the swelling will go down. It started on Saturday. They said I have the swelling because they had to pump a ton of fluids in me in the OR to bring my levels up. I was right at needing a blood transfusion. Then they also put a lot of fluid in me cleaning out the infection. Never in my life have I bruised easy or bled a lot, but ever since the hysterectomy surgery I have been anemic and bruise easy and bleed a lot. The doctor keeps saying I had to of been this way before, but is never was. I have some nasty looking bruises on my arms from I don’t know what. I just want to heal and be back to normal! Since I woke today my left hand has been numb and tingly.

I am 7 weeks post-op now from my first surgery. I should be pretty much back to normal, but nothing was right after the hysterectomy. I bled a lot out of my vagina and you normally just spot. This last surgery they closed the hole in my vaginally cuff and I am just spotting like I should of done to begin with. I am on HysterSisters site and everyone who had a hysterectomy in the same time frame as me posts under the same area. Everyone is back to mostly normal. One person had a few UTI’s during recovery and I am the only one who had all kinds of problems. It took my doctor way to long to find all the issues I had going on too. I basically had to tell him that I felt like I was peeing out of my vagina for him to find that I had a hole in my ureter, which most likely happened during my surgery and cause all the other problems, because it was not caught and treated quickly. Ugh… Makes me so mad, but I am trying not to keep dwelling all that negative crap.

I get up around 7am everyday and sit, take my meds and then occupy my mind with email and games for a while, usually two hours. Then I walk around the house slowly and then I have to lay back down with my legs propped up. Every few hours I walk around the house slowly and the lay back down. Often I fall asleep for an hour when I lay down. After major surgery the first 1-2 weeks you sleep a lot. This is my life right now. For 6-8 weeks I cannot do a single thing. Only walk out to the dinner table to eat, lay in bed or sit for a bit. I don’t know what I am going to do when my mom goes home. She is taking me to the doctor tomorrow and I imagine she will not stay here past this coming weekend. She has been here since last Wednesday. She takes care of everything for me. She even makes sure my catheter bag does back up with all the fluid coming out of me from swelling. No one else here would do that. No one even checks on me here. I want to go home with her, but I have a scan next week and another scan the following week and back to the doctor the day after that. I know she is bored out of her mind sitting around here all the time. Normally she golfs and does all kinds of stuff at home. My parents live in a huge and very nice retirement community in Florida called the Villages.

I need to go lay back down in bed, though I really don’t want too, but my feet are blown up like balloons. Guess I will take a nap took………….

My LARGE Abdominal Surgery…

I had a very large abdominal surgery Monday, to fix the hole in my ureter and the hole in my vaginal cuff and remove the large hematoma. When I woke in recovery I was in excruciating pain, even though I had an epidural. My left lower abdomen felt like it was being ripped out of me. I told the nurse and she told me I had meds and I also had surgery so I was going to have pain. I was not supposed to feel anything for two days while the epidural was in me, but I did. She finally figured out that in order for the epidural to cover the spot I was having so much pain from, I had to be tilted to the left and that did help. The epidural helped dull the pain but I still had it. I could feel my legs and move them so it must not of been put in right. For two days I laid in the bed feeling like I was being tortured to death over and over. I had an NG Tube coming out of my nose that went down my throat into my stomach. I did not expect that. I had a drain in the lower right side of my abdomen that was pulling out all kinds of bloody fluid. I did not expect that. I guess I bled a lot and the doctor called me a gusher. I almost needed a blood transfusion. My incision goes from my pubic bone straight up to my belly button, around my belly button and back straight up near the area that my stomach organ is located. It is a very large incision. There are staples all up my belly. I have three types of hard pain I am dealing with. The incision pain feels like a fresh raw cut as well as the drain area. I have a hard stabbing pain going into my abdomen where the drain is located and I am swollen up big with hard cramping worse than child birth. I was not allowed anything by mouth for several days.

On Tuesday through Wednesday, I was allowed ice chips only. They helped the irritation of the NG tube. Let me tell you, NG tubes suck! I had that in until Wednesday morning. It was a relief to be free of the NG tube. The pain was off the charts even with the epidural and I could barely move. Any movement was too excruciating for me to handle. I slept off and on for most of this time and suffered tremendously during my awake times.

On Thursday, they gave me two liquid medication to help my bowels get moving. They said they had to move my novels around a lot. Which scares me of having scarring in the future and blockages. When I asked before the surgery if my bowels would be manipulated in any way, they said NO! I feel so lied to. They let me have clear liquids only on Thursday. In the afternoon I swelled up huge and had horrible gas pains that buckled me over. I kept feeling like I had to have a BM so I had to get to the toilet repeatedly, yet nothing happened. Until, about two hours into this nightmare of pain, that is when I exploded and green liquid filled the porcelain thrown. The gas, severe cramping and deathly ill feeling followed me through the rest of that day. Getting out of the bed was extremely painful. I had wanted to be home by today because my birthday was Friday. They told me I most likely would not be going home until Sunday. How depressing and crappy to add to the most painful experience of my life.

On Friday, my doctor came in and asked if I had a BM, I filled them all in on the nasty details of the pain and explosion. They said how great it was and decided that I could eat actual food on my birthday. I got the nasty cold eggs and unseasoned potato bits. Disgusting jello and a sherbet Popsicle. Oh yeah, I had a cup of coffee for the first time in months, but the milk they gave me was spoiled and as I poured it into the cup of Java it curdled. I checked the exoneration date and it was good until the next day. My mom took the soured milk and my coffee to report it to the nurse. Several people had gotten spoiled milk that morning, my mom did find me another cup of coffee so that was nice, happy birthday to me. I was still in so much pain I couldn’t stand it. I had to get up out of the bed and stand several times, each time the pain ripped down to my bones. When my actual surgeon decided to show his face, he told me if I wanted to go home on my birthday (today) I had to walk two hallways, so I did it, so much pain, but I wanted out of that hell hole, he told me he had to do a bunch of orders, so it would be a few hours before I was released.

I wasn’t sure how I was going to sleep at home. It was hard enough with the hospital bed that raised me up and laid me down. They realized how bad they had done me with my original surgery and my doctor was being extra careful that I did not have any problems. Which is why I wasn’t allowed to eat for four days! I did finally get to go home around 5 pm though. Just the ride home made me cry in pain. Trying to get from the car to my bed was horrible and trying to lay down in bed was the worst of all. I had to keep the very painful drain I me since it was still pulling out fluids. I vow to never have an open abdominal surgery again! I would kill myself before that ever happened again.

They washed out my abdomen with a lot of fluid, so my legs keep swelling and my belly looks pregnant. I’m scared of when I have my first BM at home too. I called and complained of the pain in my drain area and they told me there was no way that was causing me pain. Basically saying it is all in my head. I feel very very sick right now so I need to go……………..

Surgery Tomorrow…

Tomorrow is six weeks from my radical hysterectomy surgery. This last week my bowels finally began to work normally, every day. Due to complication, I will be back in the operating room tomorrow for a big abdominal surgery to repair a hole in my ureter, clean out a hematoma and close the hole in my vaginal cuff. This time I will have a large incision in my abdomen and that is what has me scared! Another 6-8 weeks of recovery, but this time with a large incision and more pain.

I have prepared myself as much as I possibly can for this surgery, yet my nerves are a mess. I am to be at the hospital at 11:30am and the surgery is scheduled for 1:00pm. I have been reassured that everyone is on the same page this time and I will be well cared for with good pain control. So I continue to pray that this is the case and all goes well and I heal with no other issues.

Today I can only consume clear liquids while I do a bowel prep. I have to end the night with an enema and I have to shower twice today with special soap that I scrub into my belly for five minutes. I also have to do this in the morning before I go to the hospital. My blood work is good, so that is reassuring.

I thought I was nervous before my radical hysterectomy with the robot, this is much much more intense. Just so you know, if you ever have surgeries with a robot or laproscopically, don’t worry about horrible pain. The worse I ever had from those were a couple of days of gas pains in my shoulders from the gas they blow up the belly with to see. This time it is the large incision that has me so concerned. I keep telling myself so many others have had it done and made it through just fine. The key is keeping relaxed!

After surgery I will have two days of an epidural to help get me through the first two days that tend to be the hardest pain. In this time I will be focusing on breathing deeply to keep my lungs clear. This prevents pneumonia! I also cannot have anything by mouth these two days, only through IV. When they remove the epidural and start me on oral meds, I will keep calm and get up and walk to get my blood flowing and help me heal! Support my incision with a pillow and be very gentle with it, as to not cause any further trauma to the area. It is extremely important to baby the incision area and the abdominal muscles for a full 6-8 weeks. If you are not careful you can cause a hernia which will result in another surgery and I am not having any more surgeries!

A hysterectomy is normally a very easy surgery to heal from. I just happened to be one of the very few that had something go wrong. What went wrong was not my surgeon, but the staff in recovery who left me in too much pain and did not give me anxiety medications. I went into a full blown panic attack which ripped the stitches inside my abdomen and caused the large hematoma, which caused the hole in my ureter and the hole in my
vaginal cuff. To think tomorrow I would be six weeks out from that surgery and being released from restriction and feeling back to normal. Ugh!

So, here I am today. Trying to keep calm. Get through this day and stick to my well thought out plan for recovery. I am beyond blessed to have my mother coming up to be with me on Wednesday and care for me while I am on strict bed rest with just a few short walking sessions a day for 1-2 weeks. Today I get to eat jello, broth and Popsicles…..lol!

Please, send up prayers and positive thoughts for a speedy healing and a perfect surgery………….