Personal update...I hate dr's appointments

[Sevetts]

I think the universe is trying to kill me but I just wont go, first the bloodwork from hell 20 years ago, then whatever autoimmune disease I have..dr's don't agree, then chronic kidney stones that are weakening my kidneys, then congestive heart failure,then diabetes, then copd, then afib, then ILD (interstitial lung disease), just to name a few off my seriously long list. Right now I feel like the universe doesn't think I'm dying fast enough so it's going to keep throwing crap at me until I give in.  Not going to happen.  But I know I'm heading for a melt down.  Well  I had the follow up for the mri on my back today.  Good Lord have mercy what is next!!!!!  so both bulging discs are coming through and hitting on nerves, one on the left and one on the right.  BUT the so called cyst in the center of my spinal cord that even the Neurologist at Swedish Hosp. (who use to be head over all spinal stuff at harboview) said a few years ago that he wouldn't touch it, too risky...  Anyways, this cyst is growing, it is now pushing on nerves and they now think it might be cancer and needs to come out.  Not so bad if it was just on my spinal cord.. but it's IN my spinal cord.  Then I was talking to her (my primary care dr) about the results of the liver biopsy and the colonoscopy/endoscopy...  She seemed ALOT more knowledgable than the GI that did it.  He was confused when I asked him what Class the cirrhosis was in.. he said "stage 4"  I said, no, that's what stage liver disease, I know I'm past stage 4 because it's into cirrhosis...what is the childs classification...it is either a b or c.  He had no idea what I was talking about.  Just said again stage 4.  Anyways, from what he had told me, I thought I was in good shape especially with low meld score, which he didn't give me, I looked at my labs and figured it out.  In speaking with Dr today, it isn't good.  Was a HORRIBLE visit.  She said I have multiple cysts in my liver, which could be beginning stages of cancer, I asked her about what class the cirrhosis is in.. I stated I know that class A is beginning and class C is that I need a liver now.  And that I thought I was in class A.  She took a deep breath and said "Shelley, no.  You are in class B and moving quickly to C"  I'm like what the heck.  I said why did Dr Touhy make it sound like I had a very long time, that I was no where near bad problems.  She said that she had gone over my charts, all of my mri's and ct's and labs for the past couple of years and it is progressing quickly especially within the last couple of months.    So I said ok...I have a question... why is this information not effecting me at all.  She asked me how I was feeling about it, I said, I feel nothing, like just one more thing added to the list.  And she said that was good, because theres really nothing that can be done other than treat symptoms...but that she wanted me to understand...REALLY understand that the prognosis does not look good for me.  She repeated this about 4 times during the appointment.  Maybe that's what Dr. Touhy was trying to tell me and I just didn't hear it.  I told her that I'd like to be referred to a Hepatologist at the U.W.  She said she would but first we have to take care of this "cyst" in my spinal cord.  I then asked her if she thought I would be a candidate for a liver transplant and she just repeated again, the prognosis is not looking good for you.  Ahhhhhhhhhhhhhhh!!!!!!!!!!!!!!!!!!!!!!!  Can I get a yes or no answer.  Or is that my no answer?  I know I have 2 different heart things going on and 2 different lung things going on... as well as a host of other things.  I then talked to her about my sleeping issues.. and how often can I take the ambien per week.  She said to take them every night.. I said, is it addictive...she just smiled.. so I said, are you saying that at this point it doesn't really matter...she smiled again and left the room.  I had also told her that Dr Touhy said I was very, very high risk for colon cancer and high risk for liver cancer...she was not in the littlest bit surprised.  I asked her if I could please take a break before going and seeing this neurosurgeon because I'm just so exhausted and so tired of dr's and procedures... she said an emphatic NO.  I have to call and make an appointment tomorrow.  She also told me that yes, I need to start on the lactulose today.  This day really, really ***** bad.  Thank you for letting me vent.  I really needed to.  I'm not telling my family and friends because I don't know what to tell them.

[Sevetts]

Thanks advocate.  I will pm you in a bit.  I am so not giving up.  The universe might be trying to get me.. but I don't think the universe knows quite who it's messing with.  lol    My primary said she wont give me the ref until after this thing in my spinal cord is dealt with.  I will call her after I speak with the neurosurgeon because I know that surgery is in my future.  Well at least my primary is 100% certain of that.  For some reason she only likes to deal with one thing at a time.  I've been on her about my back since this liver thing came up but she wouldn't do anything until after the liver thing was checked into... I actually had to call her office and tell her that if she didn't order an mri or ct that I'd find a dr that would.  Then I got the mri... NOW she doesn't want to deal with anything other than this right now.  But, I will still call her after I see the neurosurgeon and before surgery

[Sevetts]

thank you rivll.  I know the hep. won't touch the spinal cord, I do need to see a neurosurgeon, I just wanted to take a break before seeing anymore doctors right now.  But that's not in the cards.  It was my Doctor I was speaking with, not her nurse... and she said that she will definitely give me a ref. to the U.W. they have a transplant center there, but not until after this "cyst" is taken care of.  

Again, I appreciate you all letting me vent.  I'm feeling much better than I was when I wrote this.  I think the meltdown has been averted.  Sometimes I just get a little bit overwhelmed when it's just one thing after another especially so close together.  I'm use to having new dx's added to me "list" just not so closely together and today just seemed like to much to take in all in one sitting.

[Advocate1955]

Shelley,
I'm very sorry to hear that you had such a difficult appointment with your primary care physician today.  I'm also sorry to hear that you got such upsetting news.  I am glad, however, that your PCP was direct and honest, and appears to know more about liver disease than your gastroenterologist.  Even if the tumor on the spine needs to be addressed immediately, I still think you need the referral to the Liver Care Clinic at UWMC, and need to get an appointment right away.  It can take time to get that first appointment, and only a hepatologist can say for sure exactly what state your liver is in, what your liver prognosis is, and what treatments are available to extend the life of your liver and manage the symptoms of liver disease.  A hepatologist in a transplant center will work closely with your PCP and your neurologist/neurosurgeon so that they are communicating about all of your health issues.  For example, if your neurosurgeon recommends surgery on the spinal tumor, he/she will need to communicate with your hepatologist about the safety/benefits/risks of surgery on your liver and the types of medication that your liver can and cannot tolerate.  UWMC has a great neurosurgery department as well.  I had a very good neurosurgeon at Virginia Mason Hospital & Medical Center when I had several herniated discs removed and vertebrae fused a couple of years ago.  Feel free to PM me to exchange phone numbers or email addresses if you ever want to chat.  Your docs will need to work together to figure out an overall treatment plan to address the most pressing issues first (e.g. ruling out cancer, protecting your liver, etc.).
Don't give up.
Advocate1955

[rivll]

I am so very sorry. This was truly a day of hell for you.
You do need to see a hepatologist but s/he will not touch the spinal cord tumor so your nurse is right, that has to be dealt with. Ideally, you would have a hepatologist that they could consult and work your case with.

The criteria for the transplant list is pretty extensive but the bottom line is you need a liver specialist preferably at a transplant center who can support you and treat your symptoms Whether you get a transplant or not there is much that can be done to extend your life and ease your suffering.

I wish you all the best,