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.

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………….

Another Major Surgery…

I saw my doctor again today. Over night I had a reduction in the fluid coming out of me and my belly swelled. He checked and I still had drainage and an opening so he said not to worry about it. The swelling and aching is most likely from some constipation and the fact I had to walk a lot yesterday and today at doctors office and the hospital.

I am scheduled for major surgery on August 11th. I have pre-op next week and another day I go see the anesthesiologist. I have four appointments next week. He is going in with a large incision going up my belly much like a C-section incision. He needs a lot of room to work. I have always feared having to have that done, but he is putting me one epidural for the first two days and promises I will not be left in pain and I will have anxiety meds. He is going to clean out the large hematoma, repair the hole in my ureter and stitch I a stent for while I heal for 2-3 months. He is repairing the hole in my vaginal cuff too. I cannot eat for two days after surgery so everything will be through the IV and I will have a catheter in me for 1-2 weeks. I will be in the hospital 3-4 days then get to come home and be on complete bed rest for two weeks.

The doctor is pissed at all the BS I have gone through and he reassures me that he personally is making sure I am well cared for and not in pain and treated extremely well. This will be my last surgery and it will fix everything. I just need to get through the recovery.

I had made sure my hysterectomy was done by the end of June so I would be healed by my birthday which is August 15th. But now I will be recovering until October. Oh well I guess. I would greatly appreciate all prayers that you can send my way. Thankfully, my mother is coming yo again to be with me for the first week. I have a week to get ready but I am on strict rest so I don’t even know how I am supposed to get a bag packed. I guess instruct others what to do. I asked the to all band together and get the house thoroughly cleaned for me too. I just need everything to go ok and for me to make it through the pain and healing so I can finally be on my way to recovery………….

Even More B.S….

I went to see my doctor today at 10:00am. I had double checked when they called me earlier in the week and changed my appointment to today that is was today and at 10:00 and at the cancer center. Yes, they told me!

I arrived ten minutes early, at check in they can’t find me anywhere, even though I have been there several times, then discover I am not scheduled there. So I told her repeatedly about the girl calling me and changing my day and time. I had to sit for 30 minutes while a nurse tried to figure out what was going on. She tells me she can’t figure out who called me, but I am to go to my doctors other office at Augusta Oncology Associates (AOA).

So we drive over there and I sit for a half hour, then get called back, sit another half hour and have a intern taking my info that they have already taken every time I have ever been there, sit for another 20 minutes then get told to undress for a vaginal exam, sit for another 20 minutes waiting on the doctor to come in. I have the doctor, his 2nd in charge doctor and the intern all looking up my vagina. I told them they were going to have to start buying me dinner since they all crowd around and peer into my darkness. No laughs with that either! I notice the look on his 2nds face and heard her say to the doctor, is that _____________. He does an internal finger exam and I notice he feels something and says yes. I asked what it was but he refused to tell me until I was dressed and he came back in. So there I waited another half hour for him to come back in my room, completely stressed out!

The look on his face was not good. He said the stent that was put into my right ureter from kidney down to bladder had some how moved and was now in my abdomen and they could see and feel it through the hole in the vaginal cuff. He sends me over to the hospital to have a CT scan with contrast and tells me he will call me as soon as the results are in.

I go to the hospital and sit for two damn hours waiting to be called back. Finally I get an IV put in my arm, then sit another 15 minutes and I am called back. I get on the table and they scan me three times, then inject the contrast into my IV, which always gives me a hot weird taste in the back of my mouth and makes my crotch area very hot. Then they scan me two more times. Then I had to lay there for 15 minutes and they scanned me two more times and I was finally done. I left my house this morning at 9:30am and got home at 3:30pm.

I immediately called my mother and was telling her everything, when the other line beeped in and I said it might be the doctor so hold on. I click over and it is a lady from the other hospital here called University. She says she has me down for 8:00am surgery tomorrow. I said what surgery. She asked if I saw my doctor today and I said yes, what surgery. She asked what the doctor told me and I replied that he saw the stent on the other side of my vaginal cuff. She said, yes! Have you not talked to your doctor since? I said no that I was waiting for his call and again asked what surgery. She refused to tell me and said she would call them and have him call me back. There I sat, stressed in worry for over an hour and my doctors assistant called me. She said that I was NOT having surgery in the morning, but I was having surgery on another day. I asked what surgery and she said she did not know, but my doctor wanted me back in his office tomorrow at 11:45 to go over everything,

The only thing I can figure he would be doing surgery for is to repair the hole in the ureter and get the stent out of my abdomen. It is rushing urine into my abdomen which then runs out the hole in my cuff and I soak a depends every hour now. I don’t think it needs to wait until after the weekend though. I am terrified of having a large incision and the pain of it after. From what I have found, they go in either in your back or your side and it’s a decent sized cut, then they repair the hole. You can end up being in the hospital two weeks and usually are put on a pain pump so you know they expect a lot of pain! Yikes…. You have got to be kidding me! You are also on a catheter for at least a week. EKE…

How in the hell does a stent come out of the ureter and end up in your abdomen. Stents come out sometimes but it is always out through your urethra. I have been unable to find anyone else this has happened to, let alone anyone else that had both a hole in the cuff and a hole in the ureter after a hysterectomy and I also had sepsis and a hematoma that would not come out even through a drain. I almost died then. I do not want to deal with this. Everyone keeps telling me I need to talk to a lawyer because all of it together is just too damn much. I can’t deal with that right now, I have to get better first, but I am thinking about it. I feel I definitely deserve some type of compensation for the many errors on his part that caused me so much pain, suffering and inability to even do a single thing for months. I don’t know though, dealing with that will cause all kinds of anxiety issues for me. Though the money is desperately needed.

I really cannot take anymore bad news. I have had three surgeries before the hysterectomy and never had any problems with them at all. Healed well and no mishaps! My doctor is raved about being the best here by everyone. He never had any error or mishap before me. Why is it always me that the crap happens too anyway?