We have detected that JavaScript is currently disabled. CaringBridge is best viewed with JavaScript enabled.

Charlie’s Story

Site created on June 29, 2012

This page was started in hopes of keeping all of you updated about my health condition. As you know, or have just found out I'm in need of a liver transplant. I'm accepted & on the list at the U of M Medical in Minneapolis. I'll be trying to get on a 2nd list, as it will increase my chances of receiving a liver sooner. My general health is deteriorating so the sooner the better.

I apologize for the impersonal way I've chosen to communicate, but it is the best way to keep everyone updated w/o making several phone calls. Cells do not work well in the hospital. So it makes talking to you individually even harder.

The problem all began July 2011. I noticed my feet & legs were swollen, however in years prior my ankles had always swollen in the hot summer months, so I did not take much notice.

I got firewood all August & September and still was swollen & the weather was getting cooler. A bit unusual for me but not unheard of, so on I went.

About Thanksgiving I noticed a significant change in weight & my belly started to look odd. No pain but bigger. I went to the nutritionist explained I had not been hungry & barely eating in the prior month & a half. He suggested more protein to reduce the swelling & increase blood albumin. I started slow adding the protein powders to smoothies and cereal. It seemed to be working well & I was feeling better & eating again. But the swelling remained.

In Dec. the swelling continued to get worse, and by Christmas time it was becoming debilitating. I decided to see a doctor in Jan. The doctor immediately sent me to the Emergency Room. I did have a significantly elevated Thyroid hormone which was diagnosed as Hypothyroidism. My liver enzymes were normal so they ran a CT scan with dye and sent me up to a room.

We did a parenthesis tap the next morning where they drained 800 ml off my abdomen. My numbers improved & were indicating early improvement, I was sent home with diuretics. They weight continued to go rapidly and I had another tap to get rid of the remaining 700 ml of fluid. I felt better to be 92lbs lighter.

We continued on researching what could be causing problems. We did a upper endoscopy & the bleeding varices which almost killed me in '04 looked perfect, the only thing of notice wad a hiatal hernia.

We did a liver biopsy which revealed cirrhosis, low Alpha 1 Antitrypsin, high amounts of copper and iron in the liver, high antinuclear antibodies.

My blood labs continued to improve and my doctor thought I may be showing very slow but early improvement. What he did not like is a fluctuating MELD score (Model for end-stage Liver Disease). He suggested I get on a liver transplant list. He told me to check with my insurance & find out what options were available.

My choices were L.A., San Fran, U of Minnesota, Detroit, Pittsburgh, Cincinnati, Cleveland, Boston, NY, Florida & D.C. I chose Minnesota because it was closest, least expensive, smallest city. Their survival rate was very good at 89% & the waiting list was better than most.

I flew out to Minnesota May 21st (my generous parents took on pet duties while I was gone). First day of interviewing & testing went well & I was scheduled for a the second day. I went to the hospital met with a nutritionist to go over diet pre and post transplant, attended a class on transplants, and met with my surgeon who suggested keeping my own liver and using steroids as a possible therapy. (That was the last we ever talked about that form of therapy). The surgeon explained I was too sick to get a partial liver from a donor & would need the whole organ from a deceased donor. He also said the system sucks, and patients (like myself) will have to become much sicker to make it higher on the list, thus compromising recovery. After the interview, my nurse said there was something wrong w/ my echo cardiogram & I missed the scheduled EKG yesterday. She sent me in for a EKG & an appointment w/ a cardiologist that afternoon. The cardiologist said he needed to run a right heart catheter to rule out pulmonary hypertension (until cleared I was not considered for the list) & w/ my sodium blood levels, he was surprised I was there now.

Sent to the hospital that night & I was set up with vit. K injections to improve my blood clotting, since they were going to run a trans jugular line into my heart. Meanwhile the other team was working on improving my sodium.

Next morn they decided to do the heart cath. I heard a nurse say "heparin" (an anticoagulant) I stopped them & said no way should I have heparin. They called a dr. (I thought was my cardiologist) & the dr. said proceed. It went well & I was back to my room. My Cardiologist came in that morning to explain we were waiting on the test until my INR improved. I said it was done, and further more they gave me heparin. Shocked, & furious he looked at the results and said I was fine.

I was in the hospital for a week & a half to get my NA to an acceptable level, I was released to a motel w/ daily testing. My Mom & I stayed until the docs cleared me. 3 days & no problem until afternoon of the third, I felt really weak, my temperature spiked that night to 102 & I was back in the ER. I received another transfusion, improved & was sent to the motel again for daily observations. Everything started to improve and I was allowed to go home.

Newest Update

Journal entry by Patches O'Houlihan — Jan 15, 2021

I finished all final testing and procedures today. 😁 The liver team will meet on Thursday and Friday to discuss my candidacy for getting listed for another liver transplant. As best as I can interpret I believe I cleared all cardiac, radiology and pulmonary tests, It is difficult for me to interpret those reports on MyChart.

The most tell tale tests of liver health was the ERCP and the Fibroscan. The scan indicated stage 3 fibrosis (which from my knowledge) is unchanged from my last punch liver biopsy years ago. This made me cautiously optimistic, but perhaps it should not be.

The ERCP was 66% successful, Dr. Shah was able to access 2 of the 3 bile ducts. He increased the opening of two to improve bile flow and prevent infections, the other one is completely blocked and we are hoping the increased size of the other two ducts will be able to clear the bile of all three (or at least that’s what I understood, but I was still pretty sedated and sick to my stomach with a really sore throat).

I hope this will buy me some more life with my existing liver and I can postpone a transplant. Technology is improving all the time. Colorado is perusing some very interesting new therapies with successful results. Seems they may just need some fine tuning to make them better less painful options.

The team at Colorado was very nice and incredibly laid back. I was at ease right from the beginning. I will know a lot more on Thursday and Friday of next week after the entire team discusses my case.

Read More of the journal titled "January 15, 2021"

Patients and caregivers love hearing from you; add a comment to show your support.

Help Charlie Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Charlie's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser

Support Links

Helpful Requests

Go to Ways to Help