UPDATE: catheter is finally out…

On Friday I went in for a test to check my bladder, ureter and kidney. They hooked up a bottle of contrast to my catheter and it was supposed flow down into my bladder, but it would not go in. They spent over a half hour trying to get the contrast to go into my bladder and it wouldn’t. It was like something was blocking the catheter line, even though I had no problems with it prior. They ended up having to manually inject the contrast into me with a syringe into the catheter line. Which tells me something must of been in the way and the force of the syringe allowed the contrast to get past it. My bladder became full quickly and they started taking pictures with the fluoroscopy machine. I had to roll to each side and get pictures. They were checking to make sure there were no leaks or reflux. Then the fluoroscopy machine stopped working. They ended up having to restart the entire system. I was thinking, “Geeze, why is it everything that can happen seems to happen to me?” The machine got back up and working and they finished taking pictures. Everything looked great! They hooked me back up to my catheter bag and told me they could not take it out. I was pissed and asked them to call the doctor so I could get it out. Meanwhile, the contrast is not coming out of me into the catheter bag. I sat, then stood, then walked and even sat on the toilet and used force and nothing! There had to be something in there blocking it! Finally, the doctor called back and said yes, they could remove the catheter. As soon as it came out of me, I went to the toilet and peed like crazy. What a relief to finally have that out of me after 25 days!

I had feared not being able to pee or having pain, like many people posted after a catheter was in for an extended period of time, but I had no problems at all. No pain either and I no longer had the stabbing pain the catheter caused me. The only issue I have had was the first two nights I was up every single hour to pee, then last night I was up every two hours to pee. My bladder had to stretch again. I made sure I tried to hold my urine when I felt I had to pee for a little bit to help my bladder get back to normal.

I was at my parents house from August 21 until September 2 and it was so peaceful and nice. My parents waited on me so I didn’t do things that I was restricted from. I had no worries really at all while I was there. I want so badly to be back there now!

I haven’t even been home a week and my adult kids have already been at it again. Getting drunk and fighting. I finally said no alcohol is allowed in this house and if you break the rule, your out. I can pack up and move in with my parents and then they will all be homeless when the house is taken away. I don’t even want to be here, but it is the only way they all have a roof over their heads. I don’t even have enough money after bills to buy things I need. Yet, they go out and get what ever they want. Just kills me. They all need a dose of reality. My grandson is the only reason I am here! He is in Pre-K now and in speech therapy.

“B” and I just live like roommates. He doesn’t do anything with me or even spend time with me when I am laid up. I have gotten to the point I just don’t care anymore. That sucks, because once you get here, there is no going back. I have never been to a concert and he won tickets, but I am in recovery and couldn’t go, he went! He leaves Thursday to go up to see his family by himself. He insisted he was going by himself. Can’t even take a vacation with me. He says he loves me, but there is no way that can be true! It sucks! Just have to learn to love to be with me, myself and I. Oh, and my two kitties!

If I lived with my mom she would have someone to do things with. I would get to do things, instead of being stuck here alone and having to listen to my daughter scream and yell.

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So Frustrated…

I have been leaking around the catheter line since the day after I was in the ER and found out I had an infection, even though I was on antibiotics! It seems to be getting worse! I had already resorted to wear a generic form of depends underwear, which suck by the way, because underwear and a pad were not catching all of it and it was running down my leg! Last night I decided I would try wrapping the top of the line where it goes into me with gauze and then secured the exposed part with tape and I put on underwear with a pad. After two hours, my pad was soaked, the gauze was soaked and so was my underwear. I don’t know if it caused more of a leak or I have been leaking that much in the depends underwear, since they hold a lot more than a period pad. So much for thinking I might be able to wear underwear instead of the bulky ass diaper underwear! So frustrating!

Basically, there is nothing I can do about it and I have to have this in until the 10th of September. 30 days total! From what I can tell I will need to wear diapers for a few days while I try to learn how to pee again then. I so want to be done with all of this.

I have been paranoid about getting another infection, so three times a day I wipe it all down with alcohol to sterilize it! My last antibiotic is on Tuesday, I am returning home Tuesday and calling that morning to the doctors office to request they call I more antibiotics to get me until the catheter is removed! I have been on one form or another of antibiotics since July 17th. Yesterday morning and when I just got up there was a line of white urine in the tube. Like watered down milk. I have been passing a lot of white stuff too. I am forcing myself to drink as much water as possible. Did I mention how much I hate water!

Saturday was the first day I did not feel really sick. I actually felt like I had energy too. I even only took one nap. So, I figured the infection finally got beat down enough not to make me sick. Yet, the leaking has increased! I did not leak at all until after going to the ER and finding out I had an infection? Probably just coincidence. I had been thinking the leaking was caused by the infection and that maybe it would go away when the infection went away. I have read though, that when you have a catheter in for over two weeks, it is common for it to leak. The doctor said I would have it one to two weeks. I feel like he lied about every single thing to me. He insists I need it in this long and the benefits out weight the negatives. He doesn’t have to have it in him and hurting him 24/7. Many people say they don’t feel it, but mine hurts at all times, sometimes so bad I want to scream. It’s always a burning and irritated feeling, then it will jab stabbing pains up into me. I have had it in for 20 days and I have 10 more to go! I am having some test done on Friday that checks to make sure your bladder and all is working right and there is no reflux.

I only have two days left here at my parents and then a seven hour car ride back to my home. I so pray my family will be adults and get along and just be a family. I will miss the pure peace and quiet I get here. My parents waiting on me. They show concern for me and talk to me every day. My mom cooks and makes sure I eat right.

I slept about a hour and a half before I just woke and discovered everything wet. So, now I will be up for a bit. At least it is early enough that I should be able to get more sleep. One good thing about being back home is I have a fridge in my bedroom so I can get an ice cold drink when I get up at night. Here, I take a tea to bed and then drink that when I am up in the night and it’s usually pretty warm by then. I love lipton citrus green tea. My parents golf on the weekends. Yesterday they left here at 8:15am and were back at 11:45am. Today they leave at 9am and should be back around noon. Usually when I am here my parents take me out to eat a lot, but since I am attached to a big green bag that holds the big catheter bag, since I can’t wear the leg bag because it causes more leaking and won’t stay up on my skinny legs, I am not really wanting to go out anywhere. On the trip here I had to stop every two hours and get out of the car to move around and carry my bag. People would stare at me. The one bad habit I have is smoking, so I did go into a gas station to get some cigarettes with my bag and had urine run down my leg while I was paying. I have no dignity left.

I really pray I am able to urinate on my own when they take this thing out. I had one in for a couple of hours and I could pee but it burned like hell and took a lot of focus to get the urine out. I was determined though! It seems I get a night of decent sleep the a few where I am up a lot. Send some prayers this way for me, please………….

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………….