Post-Transplant Blog, Pt. 10.

You will not get refills of oxy. So that would be a hassle for you.

Wow Connie, as you were welcoming me as a new member and giving me support, I had no idea you were going through all this - to take the time to reply to me when you are having so many troubles makes me realise what an amazing person you must be. I wish you all the very best and send you lots of light and love x

I've had a pretty good weekend. I've gotten quite a bit done, though I can't stay on my feet long. My leg swelling has gone down, but the right leg around the drainage site is severely inflamed...like a bad burn. I'm putting Neosporin on that red area and changing the dressing (sanitary napkins, actually, as they're absorbent) several times a day. My feet and legs still hurt so much I can barely walk....blistered, reddened areas just from soft bedroom slippers rubbing on my swollen feet, or just being in them. I have to go to Mayo on Wed., which will be the coldest day of the year here so far...high of 53, dreary, windy, dampish. I don't know what I will put on my feet. Hospital socks won't even fit.

Neighbors have been getting my garbage out and picking up my mail and getting mail out for me.

My PT usually comes late in the day, but I switched his usual Tues. to Mon., so to fit me in he has to come at 9 AM. So I'm off to bed. It's going to be another busy week, but I did get some rest this weekend, watched a movie, read some magazines. I have to keep my feet elevated a lot.

Hugs,
Connie

Deb, if that doctor hadn't taken me off Lasix, I would be doing great right now. I'm angry about that, as I should not be going through this.

Waiting for PT. Gorgeous day here. Wed. looks to be sunny and dry...just very cold.

I am going to attempt going grocery shopping tomorrow (I can use an elec. cart), if I can get something on my feet (structured slippers that look like shoes.)

Hugs,
Connie

Deb, they would find me frozen to death in that weather. I have gotten used to relatively mild winters in NE Florida. We get a blast of cold from time to time, but it usually warms up quickly. Jan. and Feb., it usually gets and stays cold until at least March. This is far from Miami, so we do have cold weather here.

There are no food delivery services here (aside from pizza joints and a couple of other restaurants that deliver. I am not able to go shopping tomorrow. My neighbor will do it for me, for about the 3rd week in a row. I will be lucky to make it down the hall to do some laundry.

The PT is contacting my hep doc to order home nursing...just to have someone check on my feet and legs. And that's all I will let them do, aside from a dressing, maybe. I've been through this before...even went to wound care clinic for quite awhile. But then it was infected and this isn't yet. Intervention, such as debridement, can make matters worse.

Hugs,
Connie

I finally have an opportunity to update and tell you about Wed.'s appts at Mayo, where I had an infusion of albumin and an electroencephalogram (EEG.)

I was given a time of 11 AM for infusion on the phone. I got my itinerary the evening before, and it said 9:30. My transportation arrangements with the van service had already been made, so I didn't get there until 10:45 and had to register and get an armband. I took my walker, but could barely walk with my feet and legs so painful.

The infusion itself went well. The nurse got the IV on the 2nd try. I was in a private treatment room in a comfortable recliner and a big-screen TV in front of me. I got 2 small bottles of albumin (not sure how much) and the whole thing took about an hour or so, including IV placement and setup of everything. I did have to wait a good 20 min. before getting in there. My legs on the bottom part of the recliner were so raw that it hurt a lot just to have them laying there. They gave me ginger ale and graham crackers, which sustained me for the day, as I never had a chance to eat.

On to EEG. I was sent to 2 other floors before finding that the correct one was the same floor I had just left. I had about a 20 min. wait there. When they took me back, I was placed in a chair and 28 electrodes placed on my head and high neck. The tech was in the other room communicating with me. Asked questions first to establish clear thinking. Then I was instructed to close and open eyes a lot, and close them for a longish series of a flashing light that got closer and faster as time went on. It lasted about 15 min. This sitting and not moving caused bad tension and pain in my neck and shoulders (old whiplash.) I took a muscle relaxant and took a nap when I got home, and that helped a lot. There is sticky stuff that was placed before every electrode and it was like rubber cement. She got some of it out, but it needed to be washed and I wasn't able to do that for 2 days.

I don't have the results of EEG yet. Probably next Fri. when I return to Mayo to see my hep docs and get another infusion.

Just writing all this for my own records and to share with anyone who may need these procedures in the future.

My PT and cleaning lady both canceled on me Thurs. Both should be here on Mon. I don't think nursing has been approved. I don't really need it, except for some supplies, which are becoming very costly for me. The swelling was considerably reduced the day after albumin, but has since returned. Still have sores and open areas on feet and legs. Using wound cleaner and Neosporin. Still draining from the right and going through a large number of gauze pads, although I top them when sanitary napkins.

Hugs,
Connie

Carol, I'm not at all anxious about the EEG results. I don't think there's anything wrong. Remember that the CT of my head was clear. This test was just a matter of them covering their behinds.

I AM concerned about my legs. Also my voice, which I've basically lost. I can talk in a whisper and that's about it. I will push for home nursing next Fri. They will probably send me to Wound Care Clinic, as they did before, and I really don't want to go 2-3 times a week...or at all. I also want them to prescribe an antibiotic. Have other things on my list for them next week, also.

Hugs,
Connie

SOB has improved greatly since I've been draining. Drainage is still at 600 ml every other day. I went 3 days last time and still only got 600 ml. This works on suction and only will go to 650 at most. They don't want me to do more than 600. Albumin again next Fri.

My legs and feet are still killing me, making it near-impossible to walk.

Hugs,
Connie

 I know it doesn't help you but I, like David think they aren't doing proper aftercare. This makes me ill when I see what you've gone through so far. Somebody needs to get a ear full over there.

 Ziff  

A big day at Mayo, starting with Transplant Coordinator RN and hepatologist. As mentioned, they hadn't seen my legs until today. The doctor was pushing for me to go into the hospital today. I managed to talk him out of it until after Mon. When I left there, they had me go for labs. Then I went for infusion of albumin. While I was in there, the TC came in with results. My potassium is high, creatinine and INR high. To my surprise, they added 40 mg of IV Lasix after the albumin. They really don't want me taking it, but know it's dangerous not to.

Also, had set up with their pharmacy for me to get 4 bottles of Kayexolate to all be taken today, to lower my potassium. Also a prescription for Keflex antibiotic and a lower dose of metoprolol (BP med.) My insurance covered the last two, but not the potassium lowering one. It would be $53 out of my pocket. So my TC worked with the SW and Mayo bought the drug for me. Thank goodness. It is just a one-time drug.

The van service had messed up today. They claim there was no arrangement made for van service for me for today, either to or from Mayo. I have the confirmation numbers, so of course it was booked. But nobody showed up today, so I had to wake my neighbor up early and she got dressed fast and got me down there. In my haste, I left my purse in her car, with everything in it. I had to call her to bring it back. I went on to my appt., and the fellow at Mayo's front door brought it up to me when it arrived.

I later called the van service to see if they could pick me up after I was finished, and they said it might be later. So I called my friend to come get me. Meanwhile, they showed up, but I was getting Rxs filled and expecting my friend. So, I had to tell them that I would have to cancel it. Hopefully, they have it right for Mon., when I go to Wound Care Clinic.

So I am hoping I can avoid hospitalization. I have Wound Care on Mon.

Hugs,
Connie

Connie, what an ordeal. As great as it is to have those van service programs it can be so frustrating, too. We have three or four choices now. Some are more reliable than others.

If you have ambulance coverage, just use it. This is nothing to fool around with, especially if it's infected. Kitty will be ok for a few days on its own. That's the great thing about cats - they're independent.

While you're in there getting healed, let go a little and let God ... and feel us all loving you and hoping for the best possible outcome.

I wish distance wasn't a factor - I'd be there in a heartbeat to help - as I'm sure we all would.

They also want me to have labs again Mon. AM, prior to Wound Care. If things have not improved, the hep doc will be the one to admit me. No action necessary by me. I do have to set someone up for the cat care prior to Mon., just in case. Here's the problem:

My cat cannot be left alone longer than overnight or a full day at most. He eats only wet food...a certain brand and flavor. And treats. I also give him dry, but he will only eat a nibble. No, this is not a cat who will "eat it if you leave it there." He goes on a hunger strike and yowls at the top of his lungs. I know. I spoiled him rotten, because I felt so sorry for his awful beginning in life, from which I had rescued him. He was basically feral when I got him. No one could get close to him. He would spend his time under the bed. He has come a long way, but food was the way to gain his trust. He eats 3 times a day. I'm trying to cut them into smaller portions.

The other problem is that he urinates excessively. I think he has a small bladder, as I've never had a cat pee so much. He doesn't drink excessive, so I don't think he has diabetes...and he didn't when I got him and he's always been this way. I don't use clumping litter...too expensive and I don't like it. He goes though a 20-lb. bag of Tidy Cats a week. I've started using baking soda on the damp spots to absorb odor, then cover with a little litter. The pan has to be COMPLETELY cleaned out and washed with Lysol cleaner and a brush, then dried and filled with fresh litter and baking soda.

When I was in the hospital about a month ago, my neighbor Larry agreed to take care of Mac. Well, the cat survived, but Larry would feed him a whole can of food once a day...on top of old food. He eats a can of food, but not all at once. What dried out, he wouldn't eat. Larry dumped the litter, but didn't clean out the pan before adding fresh litter. He completely filled a large bowl to overflowing with kibble. I was not happy when I saw this, but the cat did survive. And Larry will probably do it again. I really have no other person who can do it for me.

Deb, ambulance visits are covered for emergencies, going to the ER...which wouldn't be covered or practical in going to an appt. It makes far more sense to get a neighbor to take me, or even take a cab. Mayo is less than 10 miles from me...or 12 min., whatever the mileage is on that.

After yesterday's IV meds and 4 bottles of Kayexalate at home, along with 5 doses of Keflex, the redness has visibly reduced and is really faded out on my feet. The sores are still there, but healing. My feet/ankles are nearly normal in size, but calves remain enormous. I do elevate them a lot. I'm doing leg exercises on my own, as they do help and certainly make my feet and legs feel better. They stretch the muscles that are tight because of the fluid, and help push the fluid upward. My PT is on vacation next week, so a replacement will come, but probably only once--and not at all if I am in the hospital.

Hugs,
Connie