CB on living with cirrhosis

In November, I started experiencing bleeding in my gums. It wasn’t every day and began to be mainly during the night. I would wake up between 1 - 3:00 AM in the morning and taste blood in my mouth. I also experienced a couple of nose bleeds. Nothing terrible, just associated with changing of weather from hot to cold days. On Christmas day I woke up about 3:00 AM and felt blood clots moving in my mouth. I went to get up and put my hand in blood clots that were on my pillow. I went to the bathroom, and I had blood down my face and in my hair. I knew then I needed to be seen. I thought it was something going on with my gums or teeth. The day after Christmas I called the dentist, and they were able to see me at noon. They did X-rays and determined I had something medical going on. They gave me packs of gauze (thank goodness) and sent me to Urgent Care with things they wanted to test me for (autoimmune, blood disorder). I sat in Urgent Care for 1.5 hours. When called back they looked at the paperwork and said they couldn’t do any of the tests and sent me over to the ED. I walked in and it was the busiest day the ED has had all year. I checked in and then stood (not even a chair to sit in). This was at 2:00 PM and my gums were bleeding. I had to change out my gauze about every hour.

Finally, about 6:00 PM I went back to triage to explain why I was there. Then shortly after I was taken back to get blood work. The nurse when drawing blood asked me were my eyes always yellow. I said no and she responded. “Your eyes are pretty yellow.” Fortunately, or unfortunately, I knew what that meant something was up with my bilirubin. By this time, my husband had come up to sit with me (I had told him not to come since it was crazy up there). My bloodwork showed up on my healthcare app at about 8:30- 9:00 PM. I saw my bilirubin was up and my gums continued to bleed. My husband asked did I want to go home since I had bloodwork and I said no because I needed to find out why my gums were bleeding and see if I could get help with getting them to stop. They didn’t hurt just a lot of blood. Finally, at about 10:30 PM, I was taken back to be seen. At 11:00 PM, the doctor came back and said your platelet counts are low which is why your gums are bleeding but other than that your other levels look fine. He said he was going to refer me to a hematologist, and I could be admitted and be seen the next morning in the hospital, or I could go home, and they would schedule an apt. I said that if I had a choice, I would rather go home, however, my bilirubin was 10 times what it was supposed to be and the nurse that drew my blood said my eyes were yellow – were we not concerned about that? He told me to hold on and left the room. He came back and said he was going to admit me for further blood work.

My first question – why did I have to bring this to their attention? Why am I having to advocate for myself? What if I hadn’t known what yellow eyes meant and went home? I was admitted at 11:30, PM, however, due to the number of people I couldn’t get a bed. I had to stay down in the ED that night. Shortly after being admitted, I was taken back for an ultrasound. The lady did my ultrasound and wheeled me in the hallway and said someone from transport would be by to get me in a few minutes. An older lady came to have an ultrasound and was wheeled out – they got her and took her back to her room. I didn’t think anything of it as she was older, and I was fine laying there a few more minutes. However, 45 minutes later I was still lying in the hallway, and no one was around. Finally, I heard the girl from ultrasound say “Has anyone seen CB? Did someone come get her?” Thank goodness I heard her. I said – “Did you say CB?” She said yes and I said I am over here. I am not sure how long I would have laid in that hallway had she not said something.

I got back to the ED room and got bloodwork done about every hour. They took me up to a room. My thought was why are they wasting a room when I am about to go home at this point. I got to the room and the hematologist came in. All he said was your bilirubin, liver, and platelets are not playing nice together and we don’t know why. We are going to do more bloodwork and maybe you can go home this afternoon.

A little while later the doctor came in. She was rude and hateful. She asked what was going on and I told her about my gums (which had finally stopped bleeding). She poked and prodded in my mouth until they started to bleed again. She asked me questions about how long the bleeding had been happening, etc. I thought she was done and so I said, “They said I may be able to go home today, do you know if I can.” Her immediate response was – “Who told you that?” I said the hematologist. Her response was, “Well you can get that out of your head, you aren’t going home today. Your liver is shot.” She proceeded to say several other things that were not very nice and then started questioning alcohol use. I was honest and told her yes, that I drink beer and a mixed drink here and there. She continued to say several things and pretty much led me to believe I was pretty much facing death. I was so gotten away with it, but after she left, and I thought about it I wish I could have said to her – “If it wasn’t for me, I would not have been admitted.”

I was given antibiotics for a UTI, fluids, vitamins, etc. through an IV. Continued to have various bloodwork done. The nurse was wonderful. The next day she came by and said the doctor would be around soon and immediately said I think you will have much better luck today. He is wonderful – and he was!

My hematologist did more bloodwork. Said this was probably all alcohol-related and he would see me in 3 weeks. The doctor came in, asked questions and was very kind. He said I did have something going on with my liver, but they were really baffled about what caused my issues. He talked to me about no alcohol and that I was going to be referred to a GI for further diagnosis. He asked if I needed counseling and I looked at him and said – if you are telling me I can drink a beer or live, I prefer to live and I was fine. He did more blood work. Bilirubin was reduced and platelets were up - so I went home. I went back to the hematologist. He associated everything with alcohol, did more bloodwork and said he would see me in 3 months. Then went to PCP. She was fantastic. I told her what happened. At the end, she said I feel like you need to go to the hospital and get them to change your medical records. She said that what she was about to tell me was going to upset me. Someone had put in my chart basically that I drank several beers a night and an unlimited amount of vodka. She said I have seen alcoholics, and you're not one. She basically said she felt I had been dismissed as an alcoholic. They didn’t even have me going to a GI doctor until July and come to find out my GI doctor would be my hematologist’s wife. She had me in with a gastroenterologist the next Monday. I asked her – if I was such an alcoholic, could I have left the hospital and not drank a drop without help?

A week before seeing PCP, I started experiencing swelling in my legs and aching. She referred me to Clayton my now gastroenterologist. Again, very pleased with the staff. My physician was very concerned and made me feel better about my situation. I explained what was said about the alcohol and he immediately said not to worry about that, and he was basically here to help me figure out what is going on. I explained about the new issue with aching. I had been up that morning since 1:00 AM due to aching and hurting. My doctor ran 19 blood tests and checked for various things such as Lyme disease, Rocky Mountain spotted fever and more. The next Friday, I received a phone call from him, and all tests were negative, but he wanted to test me for Wilson’s disease because I checked a lot of boxes for having that. I went and picked up stuff to do the 24-hour urine test and had to go for a split lamp test. He explained that it was very rare, and he had never seen or diagnosed it. I was hopeful that this was finally the answer. When I would tell people that this or that tested negative – the response I got was – well that is good. In my mind – I needed a yes to something so I could start whatever the treatment may be. No’s became discouraging. I continued to hurt and ache. I was beginning to feel like I was an 80-year-old woman in some respects due to the way I felt. I felt defeated as I could not do anything that I normally did.

I was not sleeping which resulted in being tired which resulted in a wealth of different emotions. Every time I got down, I brought myself back up by telling myself there were people going through so much worse than what I was. I didn’t complain I just pushed forward. Luckily, I have a wonderful husband, a great work family, and great friends and all were super supportive. While none of them knew the extent of what I was dealing with (which neither did I) they stood by me. My manager and the company I work for were fantastic. Some of the executives knew I was dealing with health issues but were not given specifics as I am the predecessor of my manager. My manager sat in my office and cried with me as he knew the pain I was feeling and knew I was not myself. That support meant so much to me. My husband went above and beyond – cooking dinner, allowing me to rest when needed, and not pushing me. He has been the definition of our vows – through sickness and health. I have told everyone if I never knew what a good husband and friend I had – I had no doubt now.

The next week, my gastroenterologist called and said I did not have Wilson’s disease and I needed to have a liver biopsy. My dad had cirrhosis and I asked – is there a chance I could have this. He did not feel like I would as it takes years to transpire and get to that level and my symptoms had just started in December. I went the next week for my biopsy. The waiting is terrible.

On Monday around lunch, I received the phone call from my doctor. He apologized and kept saying he was sorry, but I had cirrhosis. I fell all to pieces. I was home alone. While it was terrible hearing this, the compassion I was shown being told this was comforting. There are still good doctors who care for their patients in this world. The next statement – being told I was being referred to a transplant doctor was not what I expected at all. That sent me over the edge. After getting off the phone, I pulled myself together and again told myself – there are people going through so much worse and I could handle this. My gastroenterologist did ask was there anything he could do – I again mentioned the hurting, aching, etc. I was experiencing. In my mind, if I could get that under control, I could conquer this, and I would be fine. I had to wait all afternoon for my husband to get home as he was traveling, and I wouldn’t tell him over the phone. That felt like the longest 4 hours. I told him when he got home, and we cried together in the kitchen. His response – I love you and we will get through this.

My husband and I went to see the transplant hepatologist. Again – very pleased with the compassion I was shown. The results of my cirrhosis remain inconclusive, and my new doctor explained they could continue to try to figure it out but at this point, I asked myself why. I have it, let’s just move forward.

I was embarrassed, ashamed, and more. Everyone’s first thought when it comes to the liver is – alcoholic. I drank but I was not an alcoholic. I have been open and honest with all of the doctors. What would it gain for me to lie? Most of the doctors have said I am quite a little puzzle and can’t really figure me out. My friends, co-workers and family joke and say well we could have told them that. Still, no one has really addressed my aching and hurting which right now was the main hindrance for me. It was at this time almost unbearable. I would take a Tylenol PM after several days of little to no sleep. After seeing the transplant doctor, I reflected on my MELD score. He calculated my MELD score from when I was in the hospital, then again based on recent bloodwork that had been done on different days in addition drew blood to get what my current Meld score was in addition to doing a PeTH test. Knowing I had something going on with my liver, did the doctors at the ED not calculate this? My transplant hepatologist said a MELD score of 20 is when they started getting concerned, I was at 20 in the hospital. Why was this NEVER mentioned to me? Were they not concerned; was I being dismissed again? The more I think about these types of things after it happened, it makes me furious. Again – the doctors who cared, stayed on top of my condition and got me in to see other doctors so quick were amazing. What if because they dismissed me, I dismissed myself?

I went over to see the counselor. I felt like a broken record giving my story; however, I understood the importance of me telling it versus it being read in a file – especially since it was misleading and conflicting throughout my file.

The counselor at the end said she did not feel I needed to be seen and felt like I was good. She did explain to me if I was put on a transplant list that I would have to have counseling. I scheduled that to be started.

I ultimately had both a colonoscopy and endoscopy and my gastroenterologist asked me was there any other concerns or issues I had. I again mentioned the hurting and aching I was experiencing. He said to me that he really felt this was something auto-immune-related and was going to refer me to a rheumatologist. He was also going to talk to my transplant physician to see if they could start me on something to see if I could get some relief. My GI physician had prescribed Tramadol, but the hurting was not as bad every night, so I didn’t want to take medicine for the just-in-case scenarios. By the time I realized I needed it, it was too late to take it and I had to be able to get up and go to work.

After my procedures, my gastroenterologist and transplant doctor talked and prescribed me prednisone. I can’t get into a rheumatologist until October, but I started taking the medicine. The relief I have gotten has been phenomenal! I feel the best I have felt in months and am able to function on a day-to-day basis. I can sleep, I can squat, I can get in and out of the car with ease and so much more that I had been struggling with. In between my procedure and transplant hepatologist, I had my first meeting with the counselor. She asked what was the one thing that bothered me the most. I explained the interrogation I have had on alcohol. It is almost like everyone is pushing toward this being cirrhosis due to alcohol, but it is inconclusive. I have chosen to move past this, why can’t they?

If it’s inconclusive, it’s inconclusive and let’s move forward. I am not drinking at all now – have not since I left the hospital. I have been asked if it concerns me to have the PeTH test done each month – I said no. While I understand people lie and I understand for me to have a transplant, should it come to that, they need to know I am going to treat this with respect and value the gift should I need it and get it. I totally get that! However, I am tired of the interrogation. I am tired of feeling like I did this to myself. The persistence and follow-up I have received from my doctors have been amazing. The compassion I have been given has been a breath of fresh air, especially after my ED experience. I feel like doctors sometimes don’t realize the impact they can have – good and bad – based on the way they treat their patients. We all have bad days, but no bad day should be communicated to a patient the way I was in the hospital. While I had a rocky start, I have ended up with a great care team. What I have learned – don’t be afraid to advocate for yourself. Be persistent with symptoms – tell it as many times as you need to. Sometimes it takes that one time that it may make a difference. While I don’t think I was being dismissed about my hurting, I don’t think I was understood.

I also don’t think anyone was realizing the impact it was having on me mentally and physically.

I am a very strong, independent individual and will do what it takes to persevere. However, I also needed someone to realize what this was doing to me in addition to dealing with this disease I had been diagnosed with. I am one of the lucky ones who, as I have mentioned, have a strong circle of people who love me, have encouraged me, and will help me in any way necessary. While I don’t ask for help, I just say thank you and I know if I need it all I must do is say the word. It means a lot. I have surrounded myself with good people and by surrounding myself with these type people and eliminating negative people you tend to have a more positive outlook and become stronger every day.

I choose life, I choose to tell my story and hope that it helps someone else. I have mentioned before I persevere by knowing there are people dealing with so much worse. I also had to realize it is also OK for me to have my occasional breakdown and as bad as I hate to say it – have a moment of feeling sorry for myself. I am human and it is OK.

Again, I am lucky that I have a great care team. I didn’t choose them, they didn’t choose me, but I feel like there is a stronger power that put this team together for me.