Urinary_SystemI’m starting at the end of this story and will flashback for clarity, you know like they do in the movies. ;P

Bottom line: I’m not passing blood and the pain is under control. I have a moderate case of the BK virus, which is causing the Bladder/UTi issue. The only way to treat it is to wait it out and dole out pain meds as needed. It never goes away. Today, it is a hell of a lot better. Sometimes you have to wait and observe something in order to keep it under control (pain is like that). It’s hell while you sit and wait, but once you figure it out, pain management becomes just part of the routine. Your doctors and nurses cannot do this for you, you have to do it for yourself; after all, you feel the pain, they do not. It is almost comical that a Bladder/UTI infection can kick your ass like it did to me, but passing blood and clots really hurts. Well enough of the gross stuff.

We have an appointment to have the Bone Marrow Biopsy on Friday. From those results my Doc and med team will be able come with a plan of action. It appears it is one of two things that I just don’t want to talk about, until we get the results. We all will just have to wait, so don’t bother asking. Lastly, the IV-IG treatment is on hold until we get the BM biopsy results, and that is just how it is. Sometimes you just have to go with the flow, and make the best of the situation.

On the flip side at least all the complaining I did yesterday finally got to the right people and I was visited by every doctor with their various diagnosis as to what is wrong. My Doc showed up last, around 7pm, just to explain the why of what was happening. Before this, no-one bothered to inform me of anything except to tell me what was not happening and the treatment was to give me pain meds until they figured it out.

But just like every doctor I have seen over the past 10+ years they don’t come to the same conclusions using the same evidence. For example, one set of doctors says I had and passed a kidney stone, which caused most of the bleeding. Another set of doctors said that was ridiculous and said it is probably the BK virus. Yea… that’s from Wikipedia, but a good short summary for those of you who want to read about it. Being kept in the dark about everything is very frustrating and scary. Treating someone with pain killers as the Treatment Plan signals to me, Palliative Care. I’m not going down that road, and nothing so far says I should be. Period!

Soapbox Time

The real problem was not what was wrong with me, but that no-one seemed to think they had the time for me (or I was not involved in the decision making process – like we time-warped back to the 1950’s). And for some people that is OK by them… it is not OK by me. I have been misdiagnosed too many times to trust the medical profession and their practice; because it certainly is practice and is not science. Not that science has all the answers. But most don’t pretend to have them when they don’t. General Practitioners are almost always guessing, specialists are often wrong when they don’t have enough evidence or too much, and you rarely get lucky enough to actually see an Expert in the medical field. Rant over!

~Mark

The last several days have been a blur. Other than watching Mark writhe in pain, the most frustrating part is not knowing what is going on and what to do about it. The floor doc was sure he just passed a kidney stone (not to belittle that problem, because I realize passing kidney stones is hell). But that didn’t explain the UTI symptoms he had a week and a half prior. And then after we get to the hospital, there is a lot of shrugging shoulders. His regular med team cancels all his preplanned procedures but no explanations why. So we have no idea what is happening or why, other than they are just going to give him pain killers. Mark complained to everyone that had ears that he wanted to talk to HIS doctor and wanted an explanation for what was going on and what we were going to do about it. He finally got an advocate (an inpatient nurse coordinator) that nagged until his primary team called and talked to him yesterday late afternoon. His doctor did come by and sit down with us and talk over everything. (He walked in and said, “I hear you have been looking for me.” Basically they did not want the biopsy done inpatient because they do not do as good a job as his doctor’s team does outpatient. And they want to hold off on the IV-IG until they get the biopsy results and make sure it is necessary. If they had said that on Monday, it would have alleveated a lot of stress and anger.

The floor doc that had originally said this was all a kidney stone, just came in and confirmed, in his opinion, that this all is related to or caused by the BK virus. It causes or has symptoms of a UTI. It caused inflammation and bleeding in his kidney. The ureter and bladder got irritated. He started passing clots which blocked in the ureter (Hello severe pain!).

So the thing is, there really isn’t anything you can do about the BK virus. No meds to take. The body just has to deal with it. The key to keeping it under control and helping to alleviate the bleeding, clotting and pain is a lot of fluids. Mark is going to be drinking about 2 gallons of fluid a day. They are sending him out with 2 types of pain meds. Two different levels, saving the higher one for just in case. The end result of this episode, drink lots of fluids and manage the pain until the body gets the virus under control.

We come back on Friday for biopsy to get a good look at what is going on and what future plans should be.

I am sorry if I have repeated stuff that Mark has said, but I am typing as quickly as I can so we can update you all right away, 🙂

Thanks for listening and being there for us. Your support with comments and good vibes helps us a lot.

Huli pau!

~terri

water bottle

7 Comments

  1. I know too well the pain of passing clots when I had a bladder tumor, now gone (also years ago with kidney stones). I made myself go to urologists, cardiologists, etc., to avoid relying on GPs.

  2. Linda Senenfelder

    Well happy drinking Mark. Sending lots of prayers and good vibs and some pixie dust added for good measure. Keep us informed don’t worry about repeating. It just makes it clear what is going on. Lots of Love

    • Thanks Linda! Got behind on replies, but we really appreciate your constant support!

  3. me and my Pixie friends drink plenty of water (and as an added treat we sometimes add Lemons) … helps with immune sytems so since you have to have lots of liquids, give lemon water a try too! you’ll be happy you did ! Sending well wishes and sprinkles of healing pixie dust along with a bushel of lemons! When life gives you lemons… drink lemon water! lol HUGGS

    • Thanks Chica!

      Next time we are in world let meet again… I owe you a really big hug!

  4. Well my dear Brother Mark!!! Its been a long while since we talked…Im sorry about this crazy situation you find yourself in..That really sucks!!! Its painful to read and I can empathize with you but cant imagine your suffering..All I know is God chooses special people to go through the fire,yet not to be burned…He will deliver you in His time and unfortunatly we are all in the “waiting” mode of life!!! Be strong and of good courage!! You were always a fighter, but this battle is not yours necessarily so Trust in your Creator!!He will see you through!!!Maybe you are headed to Zion, which I personally think is a better place than this!!! Mom is getting older and cant do alot of things she used to..You are in her thoughts and prayers even if she is not there by your side at least you have a faithful wife to hold your hand!!! Im gonna be a Granmother myself soon!! Eagle-heart is having twin boys in Sept(?)….we are all praying for you and your family!! Love your sons Bright Red Long Hair!!! Miss seeing you all these years…..Anyway God bless and keep you!! love Danna