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Posts (90)

Mon, Jul 1 11:49am · Liver transplant support group in Transplants

I am a. Heart transplant but do get those cramps occasionally. Usually for me just walking releives the cramp. And the soreness goes away once im up moving around

Tue, Jun 25 7:30am · Packing question: What did you have ready for "the call"? in Transplants

I see above a lot of great suggestions. We were going to stay at a hotel after release so you may want to decide and pack a suit case for after release. The one thing i figured out was packing an extension cord for your cell phone charger. They make a usb male to female cord the will help get the phone end to the bed. The wall outlets are always so far away from the bed. Or buy a cord that is pretty good leanth. I figure at least 6 feet. Hand sanitizer is a must too you can't always wash your hands in bed so i brought a small pump bottle of sanitizer. Pen and paper a must for questions. I find hosp rooms to be cold so maybe a robe to wear while sitting up or covering your backside while walking.

Tue, Jun 25 7:04am · Preparing for a heart transplant in Transplants

@lisalucier hi Lisa, well basically they are a little baffled whay my blood counts are still low and im still getting fevers. They took me of of cellcep and put me on sirilimus think that had something to do with the issues. But in tru Mayo way they have not given up and im confident they will figure it out. Basically i know of 3 virus 2 i had since transplant. CMV from donor heart which has not really caused any issues, Parvo b19 which is one of the culprits and c diff which has been a problem with my bowels. I willl say im starting to feel a little better and hopefully soon we will have it solved.

Tue, Jun 25 6:57am · Preparing for a heart transplant in Transplants

@jbilton i got my heart on Jan 5 and release from hosp jan 17th. My wife and i stayed in a hotel until first week of February. First 2 weeks after discharge i was back at Mayo every day during the week. I live 1.5 hours from Mayo Phoenix so by feb they were only a couple of times a week so we drove from home. Makes for a long day though. I was in heart rehab 2 times a week for 16 weeks. I was able to find a rehab center at another hosp only 40 min from home which cut down the drive. I would still use the hotels on occasion when we had a few days worth of apts. I was lucky tht my insurance reinbursed me for hotels up to 5000. The first year. I hope i answered al your questions. Sorry for the late reply im still in the hosp. But finally trying to get thru all my emails.

Sat, Jun 22 1:51pm · stopping Carvedilol (Coreg): When will the effects wear off? in Heart & Blood Health

Hi i would like to offer what i was always told about water weight. Ive been on diuretics for many years prior to my heart transplant and my drs always said that if my weight jumped 3 lbs or more in a day i was to take an extra dose. Do to my weak heart i was prone to weigh gain from water retention and was on Bumex generic for many years. So in your case o would say a call to the Dr is in order. Coreg i was on that too but never heard it would cause weight gain that sudden. But the 3 lb rule i still live by today i know for me now its usually because i ate out and got way to much sodium. So usually now for me a couple of days after the weight gain it goes back down. I no longer need durietics and diet change helps me.

Sat, Jun 22 1:51pm · stopping Carvedilol (Coreg): When will the effects wear off? in Heart & Blood Health

It sounds like you'll doing fine and yes i take my vitials every morning just to watch trends.

Mon, Jun 17 1:53pm · Preparing for a heart transplant in Transplants

@jbilton hi sorry for the late reply im actually back in the hospital due to a virus but the Hearts doing great. Im 15 months post and the transplant process went smooth. I had a a pretty bad heart coming in to my eval i was already in the hospital trying to save my old heart. During my evaluation my heart got so bad that it came to the point the only option was a transplant. Praise God i got a heart quickly in about 5 days. Being faily weak due to 2 months in the hospital prior to the transplant. But i was driving again about 6 weeks after and by 6 months was walking Long distance and starting to feel pretty normal. By a year i was hiking and playing golf again. Ask any question you have. Good luck

Fri, Jun 14 11:47pm · Months of Chest Pain - Please help in Digestive Health

@slumpkin Hi interesting issue. Im someone who has a histry of arrythmyas and so i know about a few different feelings in the chest area. I have since my arrythmya days received a heart transplant. So back in my arrymyia days i would always get confused between weither it was my heart, stomach or muscle since the all reside i the same area. Usually when i felt any pain tho it usually stomach. On the pounding tho i still get that even with my new heart and im told by my transplant team that is totally normal. I think when you go thru any type of heart issues you become much more aware of what's going on in your body. With me my pounding is usually when im on my side going to sleep and just turning over solves it. But always mention anything that you feel to your doctors.