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Post-Transplant Blog, Pt. 8

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Hepatitis
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Posted 7/23/2013 10:35 PM (GMT 0)
The ongoing saga continues here. On Oct. 27th, I will be 2 yrs. post-transplant, and still experiencing various problems.

Hugs and thanks for following my story.

Connie
Posted 7/24/2013 12:59 AM (GMT 0)
Connie,
Soon you'll get the new Hep C treatment, your back will get cemented and the plastic surgeon is going to fix your wound. Hang on, it's coming...
Posted 7/24/2013 1:52 AM (GMT 0)
 Keep ya head up Connie , Hopefully they'll get you squared away soon .

 Ziff

Posted 7/24/2013 2:14 AM (GMT 0)
Your a tough cookie...you have been through a lot. I hope you feel better soon.
Posted 7/24/2013 3:46 AM (GMT 0)
David, no cementing until after the skin graft.

Thanks, everyone, for the encouragement.

Hugs,
Connie
Posted 7/27/2013 2:06 AM (GMT 0)
To reiterate what I posted last in Part 7: The wound is still not completely closed, so the plastic surgeon told me to stop using the zinc oxide and just use a dry dressing, changing it once a day.

Today, I saw my psychiatrist and got a new Rx for Lexapro. He wrote for #90, which will save me a little money. I see him again in 3 or 4 mos. They will send me the appt.

I had some time to spare today, so picked up the jacket I left at the PS's office on Tues. I also went to the Transplant Center and left a written note for my Transplant Coordinator regarding the SOB I'm experiencing again, from fluid around my lungs. I also asked for an Rx for either Atarax or cholestyramine for the intense itching I've had for some months, which continues to spread.

She called me around 5 PM and said that the liver docs can't continue to manage the fluid and she needs to talk to Pulmonology about it. Also, she said there is no evidence from my labs early this month that I have problems with bile salts. So she said to get Claritin or Zyrtec. I really have my doubts about either of them working, but will hold off until next Fri. since it's the end of the month now and money is scarce. The thing is that my labs have never been a true reflection of what's going on with me or how I feel. And I forgot to tell her that I'm retaining fluid in my belly again. Well, next time we speak.

Hugs,
Connie
Posted 7/27/2013 3:06 AM (GMT 0)
Connie

How pray tell, do you function with all you are going through and yet you still find the time to come here and guide/support and educate so many others, some of whom are much better off than you are?

It doesn't seem fair. There is a special place in heaven for you, but hopefully not for a long time :)

I sure wish someone would come up with some effective salve for the incessant itching! That has to be driving you nuts, I know it is with Bro. Hope you can find some relief. Maybe try the allergy forum for more suggestions.

But most importantly get those fluids in your lungs and belly taken care of if you can. Figures tomorrow is Friday, hope your TC isn't taking a long weekend :)

Hugs

Mae
Posted 7/27/2013 4:06 AM (GMT 0)
Hi Hep93...I agree with Mae. You give fantastic advice and dedicate so much time to help us and guide us on the forum. You do a lot and have been through a lot. I hope the fluid issue subsides soon.and you get it addressed quickly.
Posted 7/27/2013 5:38 AM (GMT 0)
Connie, the Zyrtec does help my itching. Before I was dx the itching was awful but I didn't know what it was. I used to take Zyrtec for it because I assumed it was allergies and it did help a lot. I use the generic from Sam's Club because it is dirt cheap, about $18 for 360 tablets and I sometimes have to take 2 a day for allergies anyway.

Hope some of your other issues start getting worked out soon. And I hope the fluid doesn't get any worse.

Take care! doni
Posted 7/27/2013 7:40 PM (GMT 0)
Thanks to all of you. Mae, "tomorrow" (now today) is Sat. The TC called me Fri. at 5 min. till 5....so she will discuss the pulmonary fluid with pulmonologists on Mon. I'm sure she will set up a chest x-ray, draining, and plan of care/testing after that. I REALLY hope it can be put off until week after next, as this coming week I am free from Mayo appts. and wanted to at least go to the thrift store.

Doni, thanks for the Zyrtec recommendation. Since I know this itching is not allergy, I thought this treatment would not work. I'll be very happy if it does work. I'll post about it.

Hug,
Connie

Post Edited By Moderator (MamaLama) : 7/27/2013 2:28:42 PM (GMT-6)

Posted 7/29/2013 6:50 AM (GMT 0)
Well a little shopping therapy is necessary every now and then! I hope you get a break and get to go to the thrift store this week.
Posted 7/29/2013 5:30 PM (GMT 0)
Thanks, Doni. No word yet, so I think I will go ahead and schedule van rides to and from the thrift store tomorrow. The one where I have the most luck is a long distance from me.

Through the social services liaison here at my apt. complex, I found out that the Lion's Club here at the beach has a contract with Lens Crafters (also at the beach), whereby one who qualifies financially can get an eye exam and new glasses for a $25 donation to the Lion's Club. Sounds like a good deal to me! I have an appt. for the evening of the 13th at the Lion's Club to be qualified and given an appt. with Lens Crafters.

Through the same liaison, I also learned of a low-cost cleaning lady ($8/hr.!!!), who comes highly recommended. She will be coming to do 2 hrs. of cleaning for me on Aug. 15th.

These are 2 services I really need. There is help available if you know how to find it.

Hugs,
Connie
Posted 7/30/2013 7:10 AM (GMT 0)
Well let us know if you make any good finds at the thrift store. I love thrift finds. Can't buy anything now though because I am overstuffed with stuff. I did make $166 at a garage sale 2 weeks ago. Just a little short of paying for the license and title transfer fee for my car. :(

Sounds like the SS liaison is a wealth of resources. That is so nice that you are going to get some help. Things like that can go a long way toward lifting your spirits too.
Posted 7/30/2013 9:29 PM (GMT 0)
Doni, the thrift store was a bust. We got there and it was closed down and empty. I couldn't believe it...I'd been shopping there for over 25 yrs. I had to ride along on the driver's other trips to pick up and drop off people, before he was able to take me back home. A wasted day and $5 down the drain (van fare.) Once home, a neighbor told me that that shop had moved to a shopping mall a little closer east. I will have to get the address, but not sure when I'll be able to go again.

This AM, I called my TC and we decided to move my labs to Mon., Aug 5th and schedule the chest x-ray following that, after which I'll be notified of the proposed draining date. I forgot to mention my belly fluid this AM, as I was half asleep.

Hugs,
Connie
Posted 7/30/2013 10:08 PM (GMT 0)
Connie,I wish I lived closer to you,I would come clean for free,and taking you on your shopping trips !
Thinking of you often,
Robin
Posted 7/30/2013 11:50 PM (GMT 0)
You're very sweet, Robin, but I think you have enough on your plate. wink

Hugs,
Connie
Posted 7/31/2013 12:35 AM (GMT 0)
My plate may get filled,but always have room for dessert ! That is one of my favorite saying !
And when I take care of others,it gets my mind off my own problems !

Robin
Posted 7/31/2013 2:51 AM (GMT 0)
That's one of the big benefits I derive from helping out here...gets my mind off myself and others have much larger problems than I do at the moment.

Hugs,
Connie
Posted 7/31/2013 5:11 AM (GMT 0)
That is a good point. I am so depressed and lonely sometimes and it does help to take your mind off your own troubles when you do something for others that makes you feel useful. When I lived in Denver I took care of my mother in law because she has macular degeneration and can't drive. If she had appointments we always went to lunch and then I did her shopping for her and we would talk up a storm about the kids and grandbabies etc.

When I first moved to IL it was so I could spend some time with my parents and help them out. My mom is 82 and she doesn't get out much so she really enjoyed it when I would take her shopping and out to lunch or to get a manicure. Then when I got sick I started feeling sorry for myself and sitting home crying all the time and I never offer to do anything with her anymore. I am very blessed to have my parents still and they are in pretty good health, but they both have bad arthritis and my dad does have prostrate cancer and oral cancer too. I know they get depressed sometimes and worry too. So I guess I need to snap out of it and try harder to think of others.

So I guess your posts here have helped me to think about something that I needed to be reminded of. Thanks for everything you do here, it really does matter to a lot of people.
Posted 7/31/2013 6:19 PM (GMT 0)
Thanks, Doni. Are your dad's cancers treatable?

Hugs,
Connie
Posted 8/2/2013 1:52 AM (GMT 0)
In addressing how I manage to do it all, by myself, I believe part of it lies in my Aries personality. The same could be said of David. From Linda Goodman's Sun Signs: (Regarding an Aries woman, but also applies to a man.)

"There's practically nothing this woman won't tackle. If it's a challenge or just something she thinks she wants to brighten her life, she'll make some kind of a stab at it whether it's practical or not. I know an Aries woman who was forced for financial reasons to live for several years in two rooms with a husband, five active children and a dog. That kind of an arrangement can get a little cramped, and just contemplating it might give a woman with any common sense a few doubts. Not an Aries female. This one coped somehow, though she may have let it goad her into a few tantrums.

In the middle of the situation, when an astrologer read her natal chart and pointed out that her planetary aspects showed a long period of great hardship in her life, she was puzzled and intrigued. 'When does it look like it might happen?' she wanted to know."

I often vent about fatigue and the frustration of not being able to do things I once did and want to do. I feel like I'm a prisoner in my body. Nobody likes being locked up, but for an Aries it's especially difficult to cope with--but not impossible.

Hugs,
Connie
Posted 8/2/2013 2:19 AM (GMT 0)
           in the 60s everyone had a copy linda goodmans sun signs.  when i read your post, i got a big smile.  i learned how to chart myself and others.  but that era left me with memories of PEACE, LOVE, andHEP C.

                          barry

Posted 8/2/2013 4:38 AM (GMT 0)
"that era left me with memories of PEACE, LOVE, and HEP C."

Ain't it the truth, Barry!? But I love that book. I have my 2nd or 3rd copy...all yellowed and dog-eared. I think her insight into personalities of the various signs is remarkable.

Hugs,
Connie
Posted 8/2/2013 6:26 PM (GMT 0)
Connie

I've only been here a few times but you are always here with level headed advice. I admire your courage to keep trying when so many would have given up...God has kept you wiith us for a good reason and I am grateful for that.

Rock it girl!!

Maggie
Posted 8/2/2013 7:09 PM (GMT 0)
Thanks very much, Maggie!

I bought Walgreen's brand of Zyrtec today for the itching, as recommended by my TC. It seems to be helping a little; i.e., itching not as severe as it was. The med is pricey, though. $6 for 5 extended release pills!!!

Hugs,
Connie
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