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Connie's Post Transplant Blog

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Posted 11/27/2011 5:20 PM (GMT 0)
Thanks, guys. I am far from "well," as I'm having major issues with swelling, weakness, side effects from meds (including constipation and tremors), low BP, etc.

I will keep going back to the actual transplant post to update as I can.

Hugs,
Connie
Posted 11/27/2011 6:27 PM (GMT 0)
yeah   yeah yeah yeah   So glad to hear from you.   Take your time friend.  Lot's of thoughts and prayers.......
Posted Yesterday 7:12 PM (GMT 0)
I had a pretty good day yesterday, having dropped 3 lbs. of water weight overnight. Today, I've only lost a pound more. Am having abdominal pain and not able to bend much. The hole in my midriff continues to drain. I feel weak...have to keep sitting down.

Am trying to get a ride to and from Mayo tomorrow a.m. for labs. My friend picked up a few things for me at the store, but she will be working tomorrow.

Hugs,
Connie

P.S. Managed to get a ride to and from Mayo tomorrow, so that's a relief. A cab round trip would be $25.
Posted Yesterday 8:54 PM (GMT 0)
Hang in there Connie! Time goes by fast when you feel good but very slowly when trying to heal from a major operation you have experienced. Before you know it, you will be in the feel good stage. Hope it happens fast for you.
Posted Today 2:55 AM (GMT 0)
Connie, so glad to hear you got a transplant! Wonderful news. I see you're still having some problems, but I hope they resolve soon.
Posted Today 3:23 AM (GMT 0)
Connie, so glad to see your own words here, and just wanted to let you know I have been thinking about you! You've come so far...I know you will pull through. But, you take all the time you need and rest and let your body heal!!

Hugs!
Mer
Posted Today 8:09 PM (GMT 0)
Went to Mayo early this AM for labs. I was tired, as I kept waking up every 2 hours last night. I also dropped off a food/liquid intake log that I've been keeping since last Fri. for the TPC.

I had lost a few more pounds of water weight...a total of 7 lbs. since Fri. So I do feel a little better. I still feel very weak and get short of breath with walking. I have a 2nd spot in the incision that started to drain copiously today. They really look infected to me. I am cleaning with saline solution several times a day and trying to leave open to the air.

At 1 PM, I put in a call to my TPC, asking her to call me when she got the lab results. She called at 2 PM, although the Prograf level wasn't yet available. Everything else is looking good, including platelets, creatinine, protein, etc. Liver enzymes are down. Sodium is good. She will call again when the Prograf level becomes available, and also determine if/when I should come in to be checked. I feel I should be seen by a doctor for the wounds, if nothing else.

Hugs,
Connie
Posted 11/30/2011 7:40 PM (GMT 0)
I never received a call back from my TPC, so I put in another call to her at 1:30 PM today. Left a message for her to call me today. I no longer have any oxycodone left, so am using Lortab. Can only take 4 a day, due to the aspirin content, and therefore I'm having quite a bit of abdominal pain. I don't believe they are going to prescribe anything else, though.

I called the specialty pharmacy and ordered refills of most of my meds. They will mail them and said I should receive them tomorrow. Don't know if they are sending them by Priority Mail or FedEx or what.

I'm still draining at 2 sites, but have lost another pound or so. Still very weak and getting out of breath with minimal activity.
Posted 11/30/2011 8:10 PM (GMT 0)
Connie,
I hope that the drainage, pain, and fluid retention issues can be sorted out and solved quickly. Then you can truly concentrate on your recovery. I am sending you positive thoughts and you are in my prayers every day. So glad to see you back on the forum. You were missed and thought of daily.
Best,
Emma
Posted 11/30/2011 11:57 PM (GMT 0)
Thanks, Emma!

The TPC's assistant called me back, saying that the Prograf level was fine and that there would be no changes in my dosage (currently 4 mg twice a day.) She said that the draining was okay and she didn't feel I needed to be checked. I don't feel comfortable with this on any level. I think I will call on Fri. or Mon. and ask to be seen. Of course, the pain med issue wasn't even addressed.

Tues. is turning out to be a not-so-good day for labs, so I need to see about changing my lab day. Other things going on that I need to be here for.

I got one load of laundry done....have to get it out of the dryer. Very tiring to walk to the laundry room and back, though I'm using a cart for the clothes.
Posted 12/2/2011 4:36 PM (GMT 0)
Improvement is very gradual. Yesterday, weight was stable. Today, I'd lost another pound. There are now 3 spots in my midriff that are open and draining. Yuck. Pain has subsided some. Energy level still very low. Didn't sleep well last night. My BP was so low yesterday that I didn't take any BP med. Today it is high, as is my heart rate, so I did take the BP med. The guideline is if systolic pressure (top number) is less than 120 or diastolic (bottom number) less than 50, I do not take the BP med.

My friend/neighbor is going shopping for me in a few minutes. I pay her, but it's certainly worth it. I'm nowhere near ready to go out and shop.

The weather here has turned cold (30s at night, 50s and 60s during the day...cold for FL), but we are expecting a warmup this weekend and through part of next week. My bones will appreciate that.

I did change my lab day to Wed.

Hugs,
Connie
Posted 12/2/2011 4:59 PM (GMT 0)
Connie-I am sorry that it hasn't been a speedy recovery for you. Kind of that tortoise and the hare...

I always can remember that the diastolic is the bottom number because the "D" is diastolic stands for the downstairs number.

Glad that your neighbor is going shopping for you. I think it is a shame that you have to pay her...I would do it for my neighbor as a kind gesture...since I would be going to the store for myself anyway.

Please continue to take care and post when you can. You are always in my thoughts and prayers.

Best,
Emma
Posted 12/2/2011 5:40 PM (GMT 0)
Hi Connie, I am glad that you made it! I hope you feel better everyday.
Posted 12/2/2011 5:48 PM (GMT 0)
Thanks, Guys.

Emma, this particular person usually takes me shopping once a week and I always pay her, since she is doing it on one of her days off from work, and it's her time and gas. Since she has been with me so much while shopping, and we usually split my list, she is familiar with the brands I like, etc. Makes it easier to send her shopping for me. I have had to cut the amount that I give her in the last year, as my budget has been stretched so tight.

Hugs,
Connie
Posted 12/4/2011 3:40 AM (GMT 0)
Connie, dear friend, glad I was able to check in and hear such great news,,,though I know you will be slow to recoup,,,,:huge hugs: please know I will be praying for you.
Posted 12/4/2011 5:35 AM (GMT 0)
Thanks so much, WDIG! Don't be such a stranger here.

Hugs,
Connie
Posted 12/5/2011 6:17 PM (GMT 0)
Just a little update:

I felt awful yesterday. Just very tired and weak. Better today (so far.) Since the morning of surgery, I have lost a total of 20 lbs. in fluid, some fat and muscle. I'm feeling much more comfortable, though still having some abdominal pain in a couple of spots. I am now thinking the Lasix should be reduced somewhat.

I've put in a call to my Transplant Coordinator (TPC or TC), asking her to call me later today to discuss this, as well as the weakness, shortness of breath, open wounds, etc. I have no appt. to see her this month, as far as I know. I do go in for labs on Wed. AM, and am going to see if she can fit me in that afternoon or later in the week. I would just feel better if someone were keeping an eye on me. It seems that if the labs are good, she sees no reason to check me out. But the whole story is not shown in labs--never has been, with me.

Will add a P.S. later when/if I hear back from her.

Hugs,
Connie

P.S. I never received a call back. However, she may have gotten my message late and didn't have a chance to call.
Posted 12/5/2011 6:42 PM (GMT 0)
MY TRANSPLANT EXPERIENCE....Cont'd

Finally, on Day 8 post transplant, I was discharged. It was supposed to be in early afternoon, but there was delay after delay, as scans and blood were taken, a final instruction in using the glucose monitor and lancets was given, and discharge instructions and meds explained rapidly....really too much to take in in about 15 min. I nearly had a meltdown at this point.

I was finally discharged just before 8 PM. I had already gone ahead and ordered dinner for myself and my sister (Sigi), so we wouldn't have to worry about fixing anything when we got to my place. The nurses were very impatient for the room, and one was flying about throwing my clothes and personal effects into plastic bags (even though I had a big tote bag.) We were given a month's supply of meds and diabetic supplies, which had been delivered to the hospital several days prior by the specialty pharmacy I'm using.

It was good to get home, but the first thing we had to do was to set up the medications. I read off the medications and dosages and my sister was setting them up in a large pill sorter. As tired and confused as we were, we ended up just doing the evening and bedtime meds for that night. It was very confusing and we were both exhausted, so we decided to tackle the remainder of the week the next day.

To be continued....
Posted 12/5/2011 8:41 PM (GMT 0)
Connie-looking forward to a positive update after you hear back from the TPC. I think those draining wounds are worrisome and certainly annoying. Yes, you will feel better knowing that someone is looking after you. I think if any of us could, we would volunteer for the job.

Emma
Posted 12/7/2011 12:51 AM (GMT 0)
Connie,  Thinking about you and getting ready to light a candle for the evening.  Hope you are feeling better.  It sounds so overwhelming.  And not much peaceful rest.  We are sending you "good vibs".  Take care.
Angie1953 and Hubby
Posted 12/7/2011 1:46 AM (GMT 0)
I made another call today to the TPC. Got her asst. who said she had to leave early yesterday and wasn't in today. I suspect her 2-year-old was sick.

I have labs early tomorrow AM. Was a little stressed about who would be able to take me as I couldn't reach any of my neighbors, except one who wasn't sure if she could do it. She called later and said she could, so that's a relief. I'll call the TPC again late tomorrow afternoon to see if she can call me the following day with lab results. Meanwhile, I'm taking the BP med according to readings and cut the Lasix to 20 mg this AM, but will go back to 40 tomorrow after labs (they are fasting and the only med I can take before them is a Lortab.)

I was very tired and weak today. Ate something and slept for an hour, woke up and had dinner and meds, and now am feeling better.

Hugs,
Connie
Posted 12/7/2011 5:45 AM (GMT 0)
Connie, sending you good thoughts for good results on your labs tomorrow. Hope you get to meet with your TPC too.
Emma
Posted 12/7/2011 3:43 PM (GMT 0)
Thanks, Emma and Mary. Emma, I don't expect to meet with the TPC, at least not this week...but do want to get up with her by phone to go over some issues.

Hugs,
Connie
Posted 12/7/2011 3:58 PM (GMT 0)
Connie, I just wanted to wish you good health and I hope your recovery goes well.  Stay warm!

yeah  

Posted 12/7/2011 8:20 PM (GMT 0)
Thanks very much, Lanie!

I was up before 6 AM to go for blood work today. I didn't sleep well last night...was up every 2 hours. So when I got home, I had breakfast, took my meds, and went to sleep for about 2 hours. I left a message on my TPC's voice mail...don't know if she's in today or not.

The weather here has been sunny and warm (high 70s) for days, but this afternoon a cold front came in and the temp is dropping. Hopefully, I can stay in the next few days, though I was going to try to make a trip to Walgreen's with my neighbor on Fri. I've been too weak to go anywhere but Mayo.

Hugs,
Connie
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