dannyg Posted February 14, 2019 Report Share Posted February 14, 2019 Long story, and I can't believe it myself. I'm 54 , went to the doctor every 6 months. Kept records and a diary. Back in November 2017 went for my checkup. Told the doctor I had a tenderness sometimes below my belly button. He gave me an Antibiotic to take and told me it's probably a bladder infection. May 2017, same thing, gave me an Antibiotic. November 2018, same thing, gave me an Antibiotic. It came and went, never big pain or anything, just felt a little tender once in a while. November 2018 .......... After taking the Antibiotic, a week later I was getting ringing ears, and light headed. Went to the doctor, he sent me to an ENT. ENT sent me for Vesitbular Theropy. She told me I don't have Vertigo, I have a medical condition causing the problem. Dec. 3rd I had a "seizure" and felt like I was dying. Went to the ER, they did an Echo test, blood work, everything excpet a mid section CT Scan. Everything came back good. December 2018 ........ Mid december went to the hospital again for 3 days. Had another seizure went to a Different hospital. They did a Nuclear Stress Test and found nothing wrong. Told me to see a Nurologist. Blood work, urine test, all came back perfect. January 2019....... New Years eve back in the ER with an attack. 4 days in, they did nothing. Laid there. I found out I had POTS right before I went because Pulse was shooting up to 140 when I checked it at home. After all this time, I stood up at home, and found out I had POTS. All the trips to the ER, and stays in hospital, nobody ever checked my stats standing up ! I did at home and found it. The 4 days I was in, right before my PCP and Cardio doc let me out I told them I stopped using the bathroom number 2. They just left and didn't say a word. My PCP did tell me to not move around to much in the room because when my pulse goes to 120 it sets off the alarm and the nurses get upset. About January 6th I found a new PCP. Told him about the bathroom issue. He sends me for a mid section CT scan and a blood and urine test. I did it in the ER. They "cleaned me out" and I had yellow diarhia. All yellow. The ER doc comes back in and tells me "see a urologist ASAP and a GI doctor right away". He said I have a Cyst thats pretty big on my bladder on the top outside front. The ER did blood and urine work and mine were always perfect. This time, in 1 week, my Protein in my urine went from trace to 5. I went to the urologist and GI doctor. Urologist had me get clearance for Surgery from the Cardio doctor because of my POTS. Urologist said "it's a har mass on my bladder, not a cyst". I go to the Cardio doctor, get the ok. Went to the GI doctor, he said I have blood in my stool and sends me for a Colonoscopy. He sends me for blood and urine work, now my Protein in my urine is 10. 7 days, from 5 to 10. A few days later I called the GI doc cause Im still not using the bathroom. He sends me to the ER. I go, they took urine and blood, and basically told me they can't do anything. The ER doc wanted me to get a CT scan. I told her I just had one last week. She said she would go look at the Scan and tests and come back. While I'm waiting, I asked the nurse about my urine test. She say's my Protein is now 20. That's the star of Kidney failure. I know that, she didnt have to tell me. ER doctor comes back in and asks me right away .. "who is your oncologist". I told her I don't have one. She said to see my PCP right away. She checked my rear end and a few things and said "it didn't spread to your spine so that's good news". Heck, I knew right away when the last ER doc said about my bladder it wasnt good. I go back to the Urologist with the ok for a biopsy. A Cystoctopy. He dont want to do it with me awake with POTS, and I dont want to be awake, so I'm going on Feb.24th to get knocked out to get it done. He said it's a growth on the inside, didn't say how big and I forgot to ask, and a cyst on the outside. The cyst is easy to fix. If it's not cancer i the bladder. I go get the Colonoscopy, he removed 3 polyps, sent them in for testing, and told me my "Apendix is Enlarged" and he didn't find any blockage or reason Im not using the bathroom. He told me to call his office, see him in 4 to 6 weeks, and he will set it up to do a scope from my throat to see what's going on. Now remember, I haven't used the bathroom since January 2nd. I eat a little, take a Laxative to go a few hours later. Then it's diarhia, and not much. Sometimes brown, sometimes green. Everyday since January 2nd, and see him in 4 to 6 weeks and I'm not using the bathroom ? 4 to 6 weeks then schedule a test ? Last 3 days, since Jan 14th I'm getting more light headed, can't eat cause I get blown up fast, Laxative ain't working anymore, and I'm trying to explain to family and people It's the bladder and probably cancer causing all of this. Since 2017 until now with my bladder. The Urologist even said "it's been there on my bladder for quite a while". So, here is where I'm at so far ........ Since November, I lost 65 lbs., havent had a bowel movement really since Jan. 2nd, Pee is not much and very cloudy dark yellow 80% of the time, Protein went from 0 to 20 in 3 weeks because Kidney's ain't working right, I have to have a scope to see if he can figure out my Intestines are failing which I already know, my Apedix has to come out now, I can't eat or drink much because I get blown up and will end up in the ER, and all my doctors still do not agree the bladder has anything to do with all these other problems. Why ? Because it's about the money. By the time next week comes for the Cystoscopy, then a week to get the results, it will be to late. Look all that happened in 3 months. Then maybe 6 weeks to do a scope and that won't show my Intestine is failing. Freinds and Family's thoughts on this.... A lot of help. They are busy, work, and live far away. I have POTS and can't drive anymore. I can't walk 50 feet before I want to fall, I get a ride from my 78 year old neighbor about 20 times now. He is old and can't keep doing it. I'm not rich and can't afford to pay UBER or someone $50 a ride to go to the doctors and maybe eventually all these surgerys, and Chemo if it comes up. All the medical bills I paid and I'm broke. And still ..... nobody will conclude its my bladder. My brother tells me "oh that's good they found the Appendix problem, they can remove that".... Thing is I never had any problem with my Appendix ! So ..... like I told them all, if I have late stage bladder cancer that caused all of this and my body is shutting down, does it make sense to remove my Appendix, get Kidney Diolosis possibly, then get a bypass to use an Ostomoy bag ? And what's their answer ? "Get the Cystocotpy done 1st stop worrying, the bladder has nothing to do with any other issues your having"..... LOL ! I guess it's just a coincidence that my Kidneys are failing, my Appensidx is enlarged, Intestine stopped working, I can't Pee much and blow up and it's very dark cloudy yellow, I'm getting weaker, and there is something in my bladder growing for over a year.... They tell me "quit playing docotr and stay off the internet, one of it's true".. Lol ! I'm no doctor, but I think a 10 year old kid could figure this one out. The doctors don't want to. They want to make as much money as possible before they tell you "we found the problem and it's to late". Like I told everyone, I'm very affraid about what's t come, BUT .... I will still have POTS all my life no matter what. If I get my bladder removed, all the surgerys, bypasses, Chemo, sell my house to pay for all of it, then what ? I can live a longer life just being able to walk maybe 50 feet at a time, not being able to go to the store, drive, go on vacation, depend on my nephew across the street to bring me some soup and things from the store, and go from the bed to the sofa like I been doing for 3 months. And my "getting out" is to go to a doctor IF I can get a ride and walk in the door without falling down. Family tells me to go to the University of Chicago or Northwetern University. 25 miles away. Like I can drive, or walk in the buildings. They can't take me, I can barley walk to a car let alone sit in one for an hour. I been through this for 3 months with 20 different doctors. Call and tell them it's an emergency, I havent had a bowel movement in 4 weeks, and they tell you "I can get you in sometime in April".... Every doctor, new or not. I live alone, have about 3 people still around that call me and come around maybe twice a week to check on me. Next week I go for the Cystoscopy, then it will be a week or so to get the results, ( which aint hard to figure out since my body is shutting down), then in 4 weeks to schedule a scope for the bowels. and I have people tell me to go to different doctors. Start all over again from square 1 ? I hear "hang in there, don't give up"........ I wish I can tell my body that and it would listen but they don't understand how fast all this happenend, and how fast things are progressing. It's not up to me. When it's my time to go, I have no control over it. I called places for a Nursing home, or probably even Hospice care in the near future, I can't afford it because I'm no on Medicare or Medicaid, and they wont take me because I have to many problems. I have to have documents from the doctors anyway to be in a place like that, and if it takes 3 or 4 more weeks to get that done, time is not on my side wih all that has happened. January 4th I had POTS, blood, urine, everything was still perfect, 5 weeks later now....... time is not with me. I find out I have POTS, the next week they find my bladder problem, go to get that looked into, they find a new problem with my kidneys, go to get that looked into, they find a problem with blood in my stool, get that looked into, he finds my Appendix is enlarged.. Every week, something new, and NOW they will do a test and see if it's the bladder causing the problem. AFTER it damaged everything else. 3 weeks ago the Urologist said "we have time, if its cancer it didnt spread cause my blood and urine are coming back good". 2 weeks ago ER doc looks at results and asks "whos my oncologist" and checks my spine to see if it got in my spine......... all of this because back in November of 2017 when I had something going on with my bladder, the doctor failed to do a urine test, or send me for a scan.......... Gave me antibiotics Thank you for letting me vent........... Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted February 14, 2019 Report Share Posted February 14, 2019 I'm so sorry you're going through all of this. I hope you can get some resolution and that it doesn't turn out as bad as you think. I'm thinking about you. Quote Link to comment Share on other sites More sharing options...
dannyg Posted February 14, 2019 Author Report Share Posted February 14, 2019 Thank you.... Quote Link to comment Share on other sites More sharing options...
edriscoll Posted February 14, 2019 Report Share Posted February 14, 2019 I'm so sorry to hear you are going through all of that. Medical issues can be so overwhelming and especially so when there are multiple issues going on at the same time. I hope you get some relief soon and some answers. Hospitals all have social work departments that have patient advocates that can really help you speak to the doctors and sort out what the priorities should be for your care. They can also help with things like rides to appointments. If you haven't done so, you may want to call the hospital where you are having your testing done or where the majority of your doctors are and explain that you don't have family available and you need help. Telling them the story you have shared with us, may help you get the assistance you need. I hope you get help soon and find some relief from your pain. Take care. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 14, 2019 Report Share Posted February 14, 2019 I am sorry all of this is happening. I think what you are going through is a big fear for all of us. That being said I may have a sliver lining for you. IF you have cancer AND it is causing all of these other issues, it MAY be causing your POTS as well. I remember reading on my research of underlying causes that cancer can cause POTS. Not sure why or how. It was something I thought was interesting and kind of filed it away. Cancer does not mean death immediately. It is something my hubby has a hard time understanding. My mom had cervical cancer and they estimated she had it for 4 years. Only reason they found it was because her iron was really low. She is now cancer free. My husband's grandfather has leukemia. Has had it since I met him 8 years ago. Doctors told him he will die of old age before his cancer kills him. Have you looked into getting yourself an oncologist? Since a doctor suggested it maybe it won't be such a bad thing to have one that can oversee all this stuff going on. Keep your chin up, and try not to stress. We all know what that does to our bodies. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 14, 2019 Report Share Posted February 14, 2019 Dear @dannyg - I agree with what other members have suggested: ask to speak to a case manager at the hospital where you get your procedures done, it is their job to help people just like you. Also - my father-in-law had prostrate cancer that spread to his bladder and after surgery and radiation he is now a 15 year survivor ( was told he had 5 years ). Keep seeing your doctors and follow their instructions. Best wishes!!!! Quote Link to comment Share on other sites More sharing options...
JimL Posted February 15, 2019 Report Share Posted February 15, 2019 There's a lot of bad medicine out there. I am sorry to hear this. Have you challenged your doctor's timeline? I mean it's ridiculous. Quote Link to comment Share on other sites More sharing options...
haugr Posted February 15, 2019 Report Share Posted February 15, 2019 I am so sorry man. Those docs really dropped the ball. I cant even begin to imagine what you must be going through. Quote Link to comment Share on other sites More sharing options...
dannyg Posted February 15, 2019 Author Report Share Posted February 15, 2019 Thank you everyone ... Very frustrating for me. Have to wait for the biopsy thursday coming up, them maybe a week from then get some answers. I think I know the answer already though since it has to be the cause of all my other issues like the bowel problem and now Appendix issue popped up. I don't have an oncologist yet since they officially havent done a biopsy yet. That will be next thursday. My urologist last time I saw him a week ago when he told me about this biopsy and scheduled it he said "we still have time because it dont look like it spread because it isnt showing up in my blood or urine". That makes no sense. I dont think its a coincidence that 2 months ago a was in great health, then they found the bladder problem, then the next week its my kidneys not working right, then my bowels, then my Appendix. 4 doctors saying each one has nothing to do with the other.... It has to be. Common sense. All I can do is hang in until next week and see what happens. Im wiating for the official biopsy from my Colonoscopy. I did get an Email with tbe doctors report. He took 3 biopsys of Polyps. 1 said "high grade dyslasia". I looked it up. Dont sound good. By the time they sample my bladder and tell me thats the problem, I think it will be way to late.. I will keep everyone posted... Quote Link to comment Share on other sites More sharing options...
dancer65 Posted February 15, 2019 Report Share Posted February 15, 2019 Sorry to read of your troubles ,sending best wishes x Quote Link to comment Share on other sites More sharing options...
JimL Posted February 16, 2019 Report Share Posted February 16, 2019 7 hours ago, dannyg said: Thank you everyone ... Very frustrating for me. Have to wait for the biopsy thursday coming up, them maybe a week from then get some answers. I think I know the answer already though since it has to be the cause of all my other issues like the bowel problem and now Appendix issue popped up. I don't have an oncologist yet since they officially havent done a biopsy yet. That will be next thursday. My urologist last time I saw him a week ago when he told me about this biopsy and scheduled it he said "we still have time because it dont look like it spread because it isnt showing up in my blood or urine". That makes no sense. I dont think its a coincidence that 2 months ago a was in great health, then they found the bladder problem, then the next week its my kidneys not working right, then my bowels, then my Appendix. 4 doctors saying each one has nothing to do with the other.... It has to be. Common sense. All I can do is hang in until next week and see what happens. Im wiating for the official biopsy from my Colonoscopy. I did get an Email with tbe doctors report. He took 3 biopsys of Polyps. 1 said "high grade dyslasia". I looked it up. Dont sound good. By the time they sample my bladder and tell me thats the problem, I think it will be way to late.. I will keep everyone posted... High grade dysplasia is precancerous. If they removed the polyps, it's ok as far as that goes. I hope things aren't as bad as they appear. Keep us informed. Quote Link to comment Share on other sites More sharing options...
dannyg Posted July 5, 2019 Author Report Share Posted July 5, 2019 It has been a long time since I posted in the group. I thought I would update everybody. A lot has happened since February. I have been to 13 doctors, three hospitals, two CT scans, on MRI, and many blood and urine test. Things have gotten worse since this all started. It took all this time but I finally had surgery. They removed 8 inches of my sigmoid colon, my appendix, and a growth from my bladder. I just had this done last week. All came back benign no cancer. I have a catheter now I have to have till next week. The growth that was on my bladder was a growth of abnormal cells. Not cancer just infected bad cells. I have begged doctors all this time to remove that from my bladder. They kept insisting it's just a cyst. And it's not doing anything. I have lost all this weight, my immune system is shot, circulatory system, and I feel much worse with the pots. Maybe in time it will improve I'm not sure. 2 months ago I started having urinary tract infections, that I could not get rid of. Then that thing on my bladder made a hole in my bladder. He fix that and sealed it up and I have to see this week with a test that everything is working and get the catheter removed. Since the surgery my pulse has been higher with the pots. I still insist this growth on the bladder messed up my whole system and cause my pots. They are telling me no it's not related. If I get better and recover from the surgery, then I will start to look into the rest of this pots issue. I look very weak, lost all my muscle mass, and then very thin skin and bones. I am grateful, and everyone is very happy for me that it turned out that don't have cancer. With my pots getting worse, body not absorbing food, and being very weak all the time, and mostly homebound unless I go to doctors, I'm taking day by day and doing what I can. I had diverticulitis that will not go away, I have malabsorption, and infection after infection. I hope soon as I recover from surgery, things will improve for me. I'm not expecting to be 100%, but I would like to be able to get around again somehow. Thank you everyone for all your help, looking forward to catching up on the comments and help I could get dealing with the pots. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted July 5, 2019 Report Share Posted July 5, 2019 Hi dannyg, Thanks for coming back to update. I am sorry you are still struggling with POTS. I'm glad it wasn't cancer. (I know we'd all take that over not being able to stand or walk, but dealing with both is just TOO MUCH!) I hope you can begin healing now. Given there was something obvious, a mass or chronic infection plus weight loss that seemed to trigger your POTS, and that has now been removed, I still think there is some hope for you to improve as you become stronger. B xxx Quote Link to comment Share on other sites More sharing options...
dannyg Posted July 5, 2019 Author Report Share Posted July 5, 2019 That is my hope to. That now that this is gone from my bladder, things will start to improve for me. The surgeon even said the same thing. He said to give it a month or two, and maybe things will improve for me. My urologist isn't saying much about it I haven't seen him really. He assisted with the surgery. But my surgeon did say the thing they remove for my bladder was like Jell-O, like a bunch of strange cells. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 5, 2019 Report Share Posted July 5, 2019 @dannyg - first of all: I am also very relieved that all pathology came back negative. - It is expected that POTS will get worse after surgery, and you had several. I always need a lot of recovery time from surgery or infection. Both are a stressor for the body and therefore will wreak havoc with the POTS. Be patient and be kind to yourself. I always bounced back, no matter how bad it got - You can too. --- Regarding the diverticulitis and the growth on your bladder - it is possible that both of these conditions put your immune system in overdrive all this time, making your POTS worse. Therefore you very well might improve once your body recovered and you have reconditioned yourself. Just hang in there!!!!! Quote Link to comment Share on other sites More sharing options...
dannyg Posted July 5, 2019 Author Report Share Posted July 5, 2019 Thank you Pistol, I have a lot of hope it will get better. I never had trouble with my bowels until 2015. I had diverticulitis. I didn't know it , I just stopped using the bathroom. I had a colonoscopy they said had diverticulitis they cleared it up and from 2015 until November oh, my stool was always flat. I told my GI doctor about it he said it's okay so I never worried about it. Then then I stopped having bowel movements this year again, they did say I had blood in my stool, did a colonoscopy but didn't find anything wrong. Then they found a growth on the bladder. I'm blaming the bladder for the whole thing one might have been my intestine all along. They say 80% of your immune system and everything is your intestines and your bowels. It probably was a combination of both for me and his bladder got more infected as time went on. I did notice I went through all my medical records a few months ago, and my white blood count was always at 11 for 2 years. It's still considered normal but it's the high end of normal being at 11. In November when I went to the doctor for my checkup I told him I had tenderness they gave me antibiotics to take and I noticed my white blood count was at 16. But I never was sick or ran a temperature. So you are correct for at least two years my body has been trying to fight something off. Probably both the bladder and my restricted sigmoid colon. My GI doctor told me don't worry about flat stool it's okay yeah, but it might have been a problem all along that I never knew about. Quote Link to comment Share on other sites More sharing options...
Hen's Teeth Posted July 6, 2019 Report Share Posted July 6, 2019 What a nightmare. I'm glad you seem to be approaching some sort of resolution. I have a suggestion for your transportation issue. Have you looked into para-transit? If you are unable a use the city bus system, they are required to provide an alternative. You might be eligible for door-to-door taxi service at a bus fare price. It is a bit of a bother, and you have to plan ahead and make reservations for all your trips. But it is a great service. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.