Saturday, April 21, 2012

Week #5

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 Well, it certainly was a busy week! Sunday I stayed in and rested after a busy week and having to say goodbye to Eddie on Saturday. Then I got showered and dressed for my brother &  sis in law coming to visit. We sat and chatted a bit then went too dinner at The Grand Lux. That is such a cool place, and good food. I had Asian Nachos, yumm-o! Comes with 8 nachos and rice in the middle. I ate 4 of the nachos, not much rice and had a banana pudding dessert. Leftovers on Monday were just delightful!

So, Monday I had the heart catheterization! After getting all prepped for it, a young woman doctor (fellow-in other words, beginner!) came in to talk to me about the procedure and explained what was going to happen and then an elderly doctor (about 80, I kid you not) came in to see me too and go over everything again). No one said who was going to be doing the actual procedure, but I found out soon enough. Then you go in this room with lots of funky looking machines that remind you of a good horror scientific movie scene! Well, maybe not that bad, but pretty intimidating, nonetheless. You lay on this skinny bed--slab might be a better definition, they even have to add arm holders on the sides so your arms just don't drape over the edge and wrap them to your sides and I even hooked my thumbs under my bottom so they wouldn't fall off (not my thumbs, but the arms off the bed)! Then they cover you with (thankfully warm) blankets and remove your beautiful gown! I have already been shaved on both sides of groin in case they need to move from one side to the other to do the procedure (we were able to stick to the right side). Next both doctors come in and the fellow is the one going to do the procedure with the elder by her side, whispering all the while. She did a great job in my opinion and I'm sure she will be a very good cardiologist or whatever when she comes through all her schooling. The needle pinch and lidocaine that burns a bit going in I'm sure is better than not having it at all but it didn't hurt as much as when the port catheter that was put in my neck for the stem cell harvest - location location location must have something to do with that reaction. Ok, so then they poke open to place the line wire to go up to the heart. That doesn't feel too bad and I was able to watch it on the tv. Once they got it to the heart the tvs and other machines moved around a lot so I didn't get to see as much. It felt a bit weird from time to time just moving around in there and when she pushed the dye in to color the blood to see the actual arteries I got a see a few of those shots, that looked really neat; like a tree with the roots going down in the ground. It took quite some time as I imagine there are a lot of places they have to check, so you lay there and lay there. During both my procedures I just kept asking Jesus to hold my hand and keep me calm - the song that came to my mind was "Jesus, take the wheel" by Carrie Underwood! In the end, though, all went well and the elder doctor says to me on his way out "Just stay away from stress tests!" That made me laugh! Later, the younger woman doctor reported to me that my heart looked beautiful and my arteries were like ones they don't get to see very often there! Yippee!! Good report!

So, the next procedure was on Wednesday to have my PICC line put in which is where all the meds, chemo, blood draws will come out of! Yea, no more needle sticks; I look like a pin cushion. 

What a story to tell about this whole situation. The man that brought me in was named Anthony and he was a such a blessing to me all morning. He had cancer and worked through that situation successfully with the Lord's help and we had a nice chat. But, while he was bringing me in to the "holding stall" so I shall call it, he was saying my name for identification purposes and a woman across the hall heard it and thought to herself, "I know that name!" She kept quiet a while during the time I was changing into the gown for the procedure but soon we were chatting and she said, I know you from facebook! Well, imagine my surprise at that! Her son was in for a procedure that was not going to be able to get done at that time and they had been there all morning. It turns out that we are friends because she has the same disease I do and she lives about an hour south of here. Her name is Teresa Richert and her son is Brad. We chatted quite a bit and got some good hugs in too! We both are faith filled women and had some nice "God talk" too. We both felt it was meant for us to meet even though it was an inconvenience for and her son, but hopefully his situation will be able to get fixed so he can get what he needs and they learned a bit more about his problems.

The PICC line went in after having to try two different places (the 2nd one worked just fine; and what's one more poke in my arm anyway?). It bothered me most of all the things as it ends up right in the middle of your chest and feels funny. I lay on my left side to sleep mostly and I can really feel it, so I've had to adjust to that but last night I could actually lay on my left side fairly well and not notice it. 

Okay, we are up to admission day, Thursday. Early day, 7:30am to be at hospital. I hope you all got to see the pictures of the room and my view of Lake Michigan. I think I have the best room on the floor! Room 1566 in the Prentice Women's Hospital. Top two floors are for transplant patients, rest of the hospital is for the babies! 


Got started with Rituxan which is a immune suppressant so it doesn't fight the stuff coming in. In the evening I got a dizzy spell for about a 1/2 hour and the call button was across the room (we've learned to put it where I am sitting) but I knew the nurse was coming soon to give me my evening meds, so I just patiently waiting rather than risk getting up and falling. When she came in, I got up carefully and went to the bathroom to get ready for bed and laid down and went to sleep. All was well after that. I get those episodes every once in a while (about twice a month at no particular time or reason; meds, time of the month, whatever) so I don't know if it's CIDP or just me. 

Friday, getting Rabbit ATG, which is a T cell suppressant. Since I woke at 3am this morning, I was looking forward to the Benedryl nap, but the Rabbit "juice" likes to bubble up and there were lots of beeps to keep me awake and the nurse kept having to come in and fix the line. Then when that was cleared up, about 6 times at least...Then the allergist folks came in to check to see if I was still allergic to Penicillin. I was very young diagnosed with that, and they say in about 10 years you can be over it and since it was probably over 40 years ago, the chances are good that I'm not anymore. Lots of pin pricks and jabs into skin (like the TB  test) and that went on for about 2 hours, so needless  to say, no nap for Wendy today! Hopefully, a good nights sleep coming! The good news is there was no reaction to the test, so they will be able to give me the meds they want to when I may need them from the penicillin family. 

Today, Saturday is the day I start the chemo (Cytoxan) and lots of other drugs to keep away nausea, headaches, etc. The chemo is now in me and so is the Benedryl, so I'm getting sleepy again. I feel fine otherwise, but lots of folks say it after day # of chemo the reactions start, so we will see. I am so covered with prayer and I know God is right here with me; I will handle it all with His grace and help!


I'm gonna stop here and maybe take a nap! Talk to all you good folks soon, I hope!

God bless you all!
Wendy :)



8 comments:

  1. Sleep well Wendy. I found that the more I slept the quicker time passed so I tried to sleep as much as possible. They will probably prescribe you the drug ativan for nausea. It also has a strong sedation effect. May I suggest you make the most of it. I also found the marinol made me sleepy but was also the only thing that gave me the strength to stomach any food. I made the mistake of trying the "as few drugs as possible" route. A big mistake. They're there to help. Don't be afraid to use them. Cheers A:)

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    1. Wendy: I continue to be amazed how you keep everyone informed as you go through your daily treatments. I'm actually loss for words - not doing a good job. I just want you to know you are loved. We will continue to pray for you. Miss you so much. Take care of Wendy.
      Love Virginia

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  2. Thanks again for a wonderful update Wendy! I am so glad everything came out ok, and you get to proceed! What a small world it is to have met a facebook friend! I continue to pray for you and hope you are doing as well as can be expected right now. Looking forward to your next post!

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  3. Hi Wendy,

    I hope all is well. Can't wait to hear another update from you!

    My Dad's insurance has approved him for the SCT and he's headed out to Chicago on June 6th for his evaluation!! Prayers are being answered! Do you have any advice for him and my Mom?

    Thinking of you always!

    Mindy

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    1. Mindy,
      That is awesome!!! Congrats!!! I am past 6 days after my transplant and things are going as expected. Today I needed platelets and just got my 2nd batch. Not a surprise at all to need these. I had to have 2 units of red blood on Saturday, also not a surprise. I am doing really well, but not blogging so much as typing isn't what I need to be doing right now. Rest, recuperate, relax and let the docs and body do what they are supposed to. God has seen me thru every step and is guiding my path! Holding me in the palm of his hand! Thanks for your prayers!
      I have a suggestion for you; in facebook, go to "CIDP and stem cell transplant" and look under DOCS at the top for a plethora of info and there is a question/answer page in there about when you go see Dr. Burt.
      Hope that helps enough.
      God bless!
      Wendy

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  4. Hope everything is going well Wendy! My Mom & Dad fly out to Chicago on Tuesday, June 5th for his evaluation! :)

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  5. Hi Wendy
    How are you? I am interested in hearing how the procedure went. This post is dated April...I didn't see any link to email you on your blog. My blog is http://theseed9811.blogspot.com/. You can email me at theseed2000@gmail.com

    God bless
    Melissa

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  6. Oh my gosh! I'm just a bit over 2 months post SCT and doing GREAT!!
    I am working on my blog, as I spoke in a tape recorder almost each day while at the hospital. I got a rash after transplant that irritated my whole body, so it has taken a while to get rid of it and kept me from working on this. Now, I am trying to stay motivated to work on it and it's difficult. But, I will do it!! I promised God, myself and others that after I finish my blog it's on to a book!
    Just working on strength and stamina at this point. I am so glad I did the SCT! Feel SO much better! I'm gonna check out your blog next. God bless you too!

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