Post-Transplant Blog, Pt. 9

What David and Ml said!

Connie,

Just get that quitting thought right out of your head tonight! You've had a tough week and more to come...all one step at a time, just like before.

I so wish the timing wAs better while I sat around Jax for all those months, I could have helped you so much more. Little things like driving, cleaning, shopping etc. could have made your life more bearable. You need to pull yourself back up, you are the rock that holds us all together! And since when did you ever take no for an answer???

I don't mean to sound disrespectful but if you start losing hope prematurely, we all will. Sounds selfish, doesn't it? It's your fault. You gave hope to thousands of sufferers, caregivers, family members etc. In fact, you will never know how many folks you saved by your spot-on advice, encouragement and yes, hugs!

Now we wait, we read your awesome blog, and we hope and pray. You WILL be the victor in the end, you already are in my eyes. But when those darker days spoil your sunlight, know that there are brighter days ahead, there has to be. And if one callous doc takes away that hope, there are dozens of others ready to carry the torch my friend. You are the best :)

Biggest hugs of all,
Mae

Do not give up. You got fight in you. Everyone says, you have to be your own advocate. Ask about treatment.

You can do this, as Mae said you are an inspiration to others.

connie, will your dr treat you with all oral drugs that are easier to tolerate? do you have the website i posted for you to get help with treatment, or did it get deleted for posting trials.
i am sure you can get treatment drugs, but your drs have to go to bat for you. im going to search my posts to look for it.

barry

If they know you can get in it could they move your biopsy up so you could get it done sooner? I would think they would want to move things along if you can try the treatment.

"connie, will your drs start tx now."

Barry, did you not read what I posted above? They will NOT consider treatment until after the biopsy tomorrow and after the yearly scans and testing next month. Then they will decide if they think I will benefit from treatment. Of course, I will push for it then.

Hugs,
Connie

No, Barry...it's just that they've made it clear that a decision regarding treatment cannot be made until they have more info...all of which will be available by the 3rd week of Oct.

Hugs,
Connie

I had to get up at 4:30 AM this AM to clean the litter pan and wash my hair before getting ready to go to Mayo. They had scheduled an abd. ultrasound for 8:15 AM. I took the van down there, with plans for my neighbor to meet me in Interventional Radiology at 12:30 PM. After I had completed the US, which took 30 min., I went to Registration to pick up a packet of papers, as I had registered for the procedures on Mon. When I got there, I was told that the US dept. had called and needed one more picture...wanted me to go back there. They are in another bldg. and I was due upstairs, so I told them no way. I am there enough that they can take it some other time if they really need it.

First up was the thoracentesis, but it took 2 HOURS to establish an IV. The person trained in IV placement via US tried both arms and could not get a vein. So the plan was to have the jugular IV established with local anesthesia and then give my meds that way. However, once in the room, there was a change of plans. A doctor came in and said he was going to get an IV started. He tried the inside of the rt. upper arm again using US and a very long needle. After some moving around inside, he got it. Thank heavens.

My O2 sat was low, so I got oxygen via a nasal cannula. I had a pulse oximeter and the IV taped securely. They started the Versed and another drug or two and I don't remember anything until I regained consciousness and the radiologist was still doing the liver biopsy. In a transjugular one, they don't do a punch biopsy, but scrape different areas of the liver. He had done the thoracentesis first. I was later told that they got a liter, which is better than last time. I was positioned on my side for this and the fluid was actually drawn from my lower rt. side. I was able to breathe normally almost immediately. However, it did hurt for about 15 min. as the IR was finishing up the biopsy. Both the rt. neck and back have bulky dressings taped on. The neck one is pulling at my skin.

I was really wiped out by the end of all this. They had me wait 2 hours before allowing me to get dressed to go home. My neighbor arrived at 12:30 PM and had a long wait for me to be finished and released, so she could take me home.

I don't feel as bad as I thought I would, but am definitely heading to bed for awhile.

I hope the testing from this week will provide some needed info to the hep doc and TP coord.

Hugs,
Connie

I'm happy the thoracentesis went well. Hospitals are always hurry up and wait, and then wait some more. Very frustrating much of the time. Rest easy.

Well, I took the phone off the hook and slept for 6 hours--more wiped out than I had thought. And no, I won't have any problem getting back to sleep later on. I have a Netflix movie to watch first, and nothing planned for tomorrow. If Mayo wants me back there again this week--for any reason--they can kiss my patootie!

My neck is hurting...more so than a regular biopsy would be hurting my belly. So for those of you who said transjugular is better--uh, uh--not for me. Of course, it didn't help that I woke up before the IR was finished and they wouldn't give me any more sedation due to low O2, even with the nasal oxygen. I had suggested they do the biopsy first, as I know I can't take a full breath after thoracentesis. I have a lot of congestion tonight and am using the Albuterol inhaler to help break it up. I hope they got the info they needed to make this form of biopsy worthwhile.

Next time I will get the IV established at Infusion Care prior to any procedure that requires an IV. I simply forgot this time, and my TC never remembers. Of course, there were folks on the procedure floor who were trained in US IV access and supposed "experts," but we see how that went. Thank goodness for the doctor who was willing to give it a try.

Anyway, aside from still being tired and sore, I'm doing okay tonight.

Thanks to all of you for your kind words.

David, it's not so much that I mind being offered suggestions, etc., but that it's really completely out of my hands right now. Once all yearly testing is completed, of course I will push for treatment regardless of the results.

Hugs,
Connie

I've slept most of the day today. The thoracentesis site is fine and I am breathing so much better. The congestion has mostly cleared up. The biopsy site is another matter. I was able to take the bulky dressing off today. There is a small lump at the entry site...not a surprise. But my neck is SO sore that I can't turn my head to the right. I'll bet it takes a week for this to go away. With the abdominal biopsy, I'm a bit sore the next day, then fine.

The only result I've been able to find online is the analysis of the pleural fluid they drained. It was good...clear, no infection, no high numbers of white cells, etc.

For biopsy results, I will have to get that info from my TC either by phone or in person...but she will prob. want me to come in and also meet with the hepatologist. That likely won't be until next month, when an appt. is already scheduled.

Meanwhile, I will continue to take it easy the remainder of the week and weekend, except for doing some laundry and usual chores.

Hugs,
Connie

Connie,
I really don't know what to say here,everything is so foreign to me as Mark is not any where,s as sick as you are.

Please just know that I keep you in my thoughts and prayers and hope the Drs can figure all of this out and get you feeling better again !

Hugs,
Robin

Connie.

I hope you feel better soon. I can't begin to imagine the pain and discomfort you are going through. Hopefully, you will get answers soon as well as some relief regarding your symptoms.

Connie

Glad your neck is feeling better today.

And though you hate going over there I'm glad the thoracic guy is going to give you some attention

I am wondering with your overlapping disabilities. --hips etc and this with mobility being one of your problems, whether some in home pt would help set up an exercise program with some isometric exercises or gentle band type exercises that could get you some heart beating and extra energy increasing activities.

I'm trying some things. One of them was to sit on a ball, stabilize my abs, then raise a weighted ball over my head then side to side. I don't move much (was avoiding recent knee injury) but I worked shoulder, , back and abs.

Just a thought

Carol