Finally Back at Home!

Got home from the hospital yesterday about 4:00PM. What a day!! Told we were going to be going home early in the morning and then had to wait most of the day to get all the paperwork and arrangements taken care of. But that is normal I guess. All I know is that I was ready to come home!!

The week started out all wrong. We checked in at Duke Hospital on Monday afternoon around 5:00, as instructed. It took about an hour to get checked in and into a room. Mid morning Tuesday we were told that they would not be able to do the feeding tube surgical procedure until Wednesday. Well, that didn’t make me happy at all but then my body kicked in and decided to get a migraine. This one made me very nauseous so there was no way to do it that day. That night (Wednesday) they put in the nose tube and I don’t care what anyone says, I would rather give birth!! The only good thing about this was that they could use it to put in the barrium and I did not have to actually drink it. I was hoping to have my surgery early Thursday morning but it was 2:20PM before they took me in. I was back in the room at 3:45PM.

Not a long surgical procedure at all but….. now the healing begins and there is a lot of soreness at the site of the surgery. We learned how to do the feedings, had everything ready to go and finally got to leave the hospital about 3:00.

It was so good to get home and see my fur babies. They seemed happy to see me too! The supplier for my oxygen came last night at 9:15PM to get us set up and trained on how to use the pump, stand and bags for the feedings. I will be getting fed 12 hours each night and this will supplement my diet with an additional 900-1000 calories per day plus a lot of other vitamins and nutrients that I probably need,

Now my goal is to get all healed up so that I can get back to a more normal routine and do some things for myself again. Not sure when I will get back to the fitness center yet but hope it will not be too long.

Stay tuned and thanks for stopping by!!

Off to the hospital!!

Well, I will be checking in at Duke Hospital this afternoon. Will be getting a feeding tube inserted so that I can finish gaining the weight the doctors want me to gain before they will list me for a transplant.

Needless to say, I am not looking forward to this but I am sure it will go fine. Just want to get in there, get it done, and get back home with Charley and my fur babies as soon as possible!!

Stay tuned and I will report in when I get home!!

Quick Update

Just found out that my feeding tube surgery has been postponed until next week. Something related to insurance….. who knows…..

Will post more later this week.

Guilty!!

I feel so bad that I have neglected our blog the last two weeks!! It has been rather hectic for us. Lots of doctor visits, tests, and exercise along with a couple of days that found me not feeling too well.

Last week we received news from our coordinator at Duke that led us to believe that we were on the verge of being listed. That got us so excited!! BUT, it was not to be. She tells us that the transplant team changed their minds and decided that I had to continue to focus on gaining weight and that my goal is 105. I weighed 95 at my last doctor visit. So 10 pounds to go. To help me with this goal they are scheduling the procedure to insert a feeding tube so that I can supplement what I am doing even more. We are waiting on our coordinator to let us now when. We think I may have to be in the hospital overnight but not really sure.

We are continuing to enjoy our stay in Spring Hill Park. The folks here are very nice and helpful. One of the ladies who lives here permanently has agreed to help us out with our fur babies when I have to be away for any length of time and also when I get called for my transplant. She is so nice!

We were hoping to have some great news by now. I know that Duke is doing everything they can to make sure that my transplant will be a complete success so I am trying not to be too disappointed with the further delay!

Hope everyone out there in blog land is doing well!! Safe travels to you all!!

Spinning Wheels?

Well, sometimes it feels like we are spinning our wheels at Duke Medical, but I don’t think that is the case. They are just so thorough and keep testing, testing and re-testing. Guess it is normal to get a little anxious to find out when I might get listed for the transplant.

I have a test scheduled for this Monday, a barium swallow to check my diaphragm, and another pulmonary follow up on 4/11 with all the labs and breathing tests and everything. Outside of that I think everything has been done. So we are continuing to wait.

As far as our trip to see the kids last weekend, it was great. We had a wonderful time and got to spend the weekend with them all at our son’s house.  We had lots of fun, lots of good food and lots of hugs!

Those grandchildren of ours are growing so fast!! Wish we could slow that down a little because they are going to start outgrowing their grandparents as they get older!!

And Cheyenne and Sadie had a grand time too, visiting with the whole family including the 4 fur babies!!

Thanks for stopping by!

Our Update for This Week

Well, this has been a pretty busy week!! I had some appointments at the Duke Clinic. One was to start over on my Hepatitis B shots. The first series did not take. And this for a person who absolutely hates getting shots!! Oh well, we do what must be done…..

The other clinic visit was with an ear, throat and nose doctor to check my trachea. The pulmonary transplant doctors saw something on one of my tests from December and again in March. They could not determine what it was and wanted this doctor to check me out. So here we go again!! He numbed up my mouth an throat and here comes the tube down my nose again!! But it was worth it – everything looked good so nothing to worry about there.

Based on what we have learned this week I will not be held up from being listed due to my weight any further. Hurray!!!! And, according to our coordinator, if the trachea looked okay then everything was done. So that tells me I could get listed very soon, possibly right after their Tuesday meeting this coming week. Wouldn’t that be something? If we get listed we will not be able to leave the Durham/Chapel Hill area so we had to plan a trip to see the kids and grandkids!!

After the doctor visit yesterday we returned to our 5er and packed up our stuff and the fur babies and headed for SC. We got here around 4:45 and the hugs from our 2 oldest grandkids were wonderful!! And the youngest joined in when she got home!!  Stacey and Lee (daughter/son-in-law) are coming to our son’s house for the weekend also so it will be a family affair for sure.

If we get listed next week there will be a special blog update to announce it to you folks who have been so supportive through all this!! So stay tuned!!

More Road Blocks

Unfortunately, we have not had a good week. We both came down with colds, me first and then Charley. Tried a couple of times to go to the fitness center and work out but it just wasn’t meant to be. So we spent most of this week recuperating and going to the clinic so that they could check me over to make sure this was nothing more serious. And it wasn’t…..

They did put me on a zpac (antibiotic) and increased my prednisone, just to be sure to knock out any infection that might be present.

I did have to have a follow up CT Scan this week also. I wish all of the tests were as easy as this one!!

We have not yet heard what my weight gain goal is to be but I do know they are working on it. Got emails with some questions about the history of my weight so that they could take that into consideration. Hopefully I will get this information from them soon. It will help to know what to shoot for!!

Thanks for stopping by!! Have a great week.