Well, I got home on Sunday. The IV steroids were fine but something happened to my stomach while I was in the hospital. I threw up like 5 times in the hospital, 3 times on my way home and then a couple other times this week. I had horrible stomach pains and GI cramps. Last night, I was awake most of the night in pain plus had my first fever post transplant. I was a little scared and freaked out. I call B&W today and they want me to call and see them if the fever returns over 100.4. The nurse said that something is going around and I probably picked it up.
My lungs feel great. I still have some sternum pain. I will be glad when that is gone. The pain is a different type of pain that I have felt before. It is like a burning feeling. Tylenol seems to get me through the day but by evening I have had enough and take 1/2 of a pain pill. It helps take the edge off.
Brian and I are going to camp this weekend. We both took a few extra days off. The weather looks great. Most of my family will be up there too. This will be my first trip up to camp since September. I am excited to do the things I haven't been able to in years. I wish that my pain was 100% gone but I know it will come in time.
Friday, May 28, 2010
Thursday, May 20, 2010
Little Bump in the road
Any one who has gone through a transplant knows the journey is full of ups and downs. I got a call from my nurse coordinator at the transplant clinic today and I have mild A2 acute rejection found with my biopsy on Tuesday. I don't really feel much different other than a little tired, I breathe a little harder walking up hills and a little pain in my lower ribs/lungs (not really sure where the pain is coming from). So i will be going to Boston for 3 days for IV steroids. This is a little bump in the road and I have nothing but positive thoughts about this. I am so glad we bumped up my biopsy. Thank God for Dr. DD. LOL! She is the one that suggested it after a 5% drop in my lung functions.
This will make the third trip to Boston this week. I should just change my residence. Luckily, I love my transplant clinic and Brigham and Women's Hospital.
My scar is healing and fading nicely, I will post some pictures next week.
I am so happy to say that James got his transplant at PENN yesterday and already has his vent out. I am so excited for him and his family. Thank God for donors and their families.
I got out and went for a nice head clearing walk. Along the way, I stopped at the lake and played with my dogs for about half hour. I really needed a little time to myself.
i am hoping that these steroids make me feel better than I could imagine. I knew last week before I did my PFTs that they would be down. That must have been a sign for me. I guess I need to learn to listen to my body and figure out what it is trying to tell me. This is so different that the past but so worth it. I still would not change anything! I was always told, what doesn't kill you will only make you stronger. I am a true believer in that!
This will make the third trip to Boston this week. I should just change my residence. Luckily, I love my transplant clinic and Brigham and Women's Hospital.
My scar is healing and fading nicely, I will post some pictures next week.
I am so happy to say that James got his transplant at PENN yesterday and already has his vent out. I am so excited for him and his family. Thank God for donors and their families.
I got out and went for a nice head clearing walk. Along the way, I stopped at the lake and played with my dogs for about half hour. I really needed a little time to myself.
i am hoping that these steroids make me feel better than I could imagine. I knew last week before I did my PFTs that they would be down. That must have been a sign for me. I guess I need to learn to listen to my body and figure out what it is trying to tell me. This is so different that the past but so worth it. I still would not change anything! I was always told, what doesn't kill you will only make you stronger. I am a true believer in that!
Thursday, May 13, 2010
New Beginnings
It has been almost two months since my transplant. It is time to start over again. I will be returning back to work on May 17th. Even though I will be working from home, it is still a step in the right direction. I also have started the paperwork for my Non-profit. My deadline to get my business plan done is May 24th. Let's see how I do.
I have been pretty committed to walking everyday. The only days I don't are the days that I have out of town doctor's appointments or go shopping. I haven't been able to start jogging yet because of the sternum. My new goal to start a run/walk program is June 3rd. Hopefully, I will be healed enough to start then. Since I am currently walking every day I am hoping the transition to jogging will be smooth.
Ten months ago, I never thought I would be walking 2-3 miles every day without getting out of breath. I feel so blessed and think of my donor every day as I do the things that I haven't done in years. God bless the donor family for following though with my donors wishes.
I have been pretty committed to walking everyday. The only days I don't are the days that I have out of town doctor's appointments or go shopping. I haven't been able to start jogging yet because of the sternum. My new goal to start a run/walk program is June 3rd. Hopefully, I will be healed enough to start then. Since I am currently walking every day I am hoping the transition to jogging will be smooth.
Ten months ago, I never thought I would be walking 2-3 miles every day without getting out of breath. I feel so blessed and think of my donor every day as I do the things that I haven't done in years. God bless the donor family for following though with my donors wishes.
Tuesday, April 27, 2010
Post transplant thoughts
Great things post transplant:
- Breathing
- Exercising with no oxygen
- Traveling overnight without bringing vest or nebulizer
- Socializing
- Gaining hours a day back because no need for vest or nebulizer
- Being able to load and unload dishwasher without getting short of breath
- Holding my breath
- Talking
- Laughing
- No coughing
- No daily fevers
- No monthly IV antibiotics
Things I can't wait for:
- Driving
- No pain
- Flying
- To be hungry
- To run
Wednesday, April 21, 2010
Scar with no staples!
As of April 20, 2010, I am tube and staple free.
I went to Brigham and Women's yesterday to have my 1 month bronch. To read about my appointment please go to my caring bridge page at http://www.caringbridge.org/visit/stephaniebriggs. I don't want to repeat everything on here that I write on there.
I was suppose to leave with ever other staple still in but once the Surgeon pulled out every other one, he thought it was silly to keep the others in. I love that man. He was not the main surgeon during my transplant but he was an attending. I saw him a lot in during the 13 nights I was in the hospital. He would always come in and make everyone in the room laugh. I don't even know his entire last last because it is long and not a common name. I call him Dr. B. He was also the man that pulled my last drain tube. Yeah!
I am in a lot less pain today. What a difference it makes with no drain tubes. I am going to try and only take 2 or 3 pain pills today. I don't want to just stop them and go in to withdrawal. I went 12 hours last night without any pain pills so I think getting off of them in the next week will be doable.
Sunday, April 18, 2010
Pray for Lungs
I have a group of CF friends that are all waiting for the call for new lungs. One of them got a call this afternoon. She is at Duke and is in surgery as I type. I am so happy for her. She is about to receive an amazing gift exactly one month from me getting mine.
My thoughts go out to Piper, Beth, James, Ashley and Justine. They are all struggling to breathe with their damaged CF lungs and are all active on the lung transplant list. I say a prayer every night that their call comes and they receive the wonderful gift of new lungs. I keep repeating that this is so much better than I ever could have imagined and I am still healing and I can't wait for them to experience this.
I hope Jess is just the continuation of us getting our lungs. I can't wait until we are all chatting and blogging about what amazing things we are all doing with out fantastic new lungs! I am rooting for all of you!
My thoughts go out to Piper, Beth, James, Ashley and Justine. They are all struggling to breathe with their damaged CF lungs and are all active on the lung transplant list. I say a prayer every night that their call comes and they receive the wonderful gift of new lungs. I keep repeating that this is so much better than I ever could have imagined and I am still healing and I can't wait for them to experience this.
I hope Jess is just the continuation of us getting our lungs. I can't wait until we are all chatting and blogging about what amazing things we are all doing with out fantastic new lungs! I am rooting for all of you!
Wednesday, April 14, 2010
DR. DD
Let me tell you about one of my doctor's at my transplant clinic. I will not use her name but her initials Dr. DD. She is one of those people that talks to you like she is better than you. Anyone that knows me understands that this is a major no no!
My first encounter with her was pre-transplant. It was even before I got listed. She was trying to convince me how important it was not to wait too long before going active on the transplant list. you would think this was a good thing but I was still in denial of needing a transplant. I still thought that I could get better. In not the exact words she said...If you don't get listed you will die. Then in the next breath she said but remember this is a serious decision because of 50% of people are alive 5 years after their transplant. Not did she say this one in the visit but 4 times until my husband spoke up and said "we understand the risk and the statistics but you don't need to keep repeating that and if you say it again we are leaving." Keep in mind Brian was trying to get me to go active on the list. The entire visit with her pre-transplant was very negative.
Now fast forward to today. The nurse coordinator, Kathy came in and asked if I was ready to get my last drain tube out. I was happy and couldn't wait. Kathy needed to have the okay from the doctor before we proceeded. So then the attending came in and did my check up. He saw no reason why the drain would not be pulled and would find out about the staples. He left and returned about 2 minutes later with Dr DD. I immediately remembered her from my pre-transplant visit and knew we just did not mesh. She started off by going over my medicines. Saying something about voriconazole and I asked if she was taking about the medication that the pharmacist and I was just talking about valcyte. She quickly let me know that I was confusing voriconazole or v-fend with valganciclovir or valcyte. while doing this she spoke to me in a very condisending tone of voice. I tried to just shake it of. My dad also caught the tone she spoke to me. So I know it wasn't a prednisone overreaction moment.
Of course then I had a few questions. Brian wanted to know what date the limitations started from...my transplant date, my last surgery or when I left the hospital. For example, I should be able to drive in 8 weeks as long as the doctors approve it and I am off all pain killers. We didn't know when that 8 weeks started from. Dr DD answer was "you can drive when we say so!" No kidding that wasn't my question. Then I wanted to know how long I had to sleep at a 30% angle. Her reply "when we tell you that you don't need to." Next question, should I go to my dentist appointment next week to get my temporary crown replaced with the permanent one? Her reply, "Thank you for telling me about your temporary crown since I will be doing your bronch next week and no change your appointment because you are on a super high dose of prednisione." I asked when should I change it to? Her reply, "I don't know, until we tell you it is okay to have oral work done." Thanks for the help Dr DD. I ended up changing the appointment until June 8th. Let's hope my temporary crown will last.
Alright now to the piece that really bothers me. Last week, Dr. Camp the big wig and my surgeon told me my drain tube would becoming out this week along with the staples. Dr DD decided she did not want to do either without talking to Dr. camp tomorrow. He is on a much needed vacation but you would think that she would have brought up my case with him this morning when they did the phone conference with him. I let this pass and figured I didn't want to rock the boat with her especially sine she is the one doing my bronch next week. So to really drive the nail in to the coffin Val, my NP at the clinic called to tell me that I need to increase my prograf again. During the phone conversation I brought up what happened at the clinic. She told me that clinic protocol was to remove any drain tubes that drained less than 30 cc a day for more than 3 days in a row and that herself or Kathy could pull the drain tubes. Then she said it is also protocol to take out staples after 30 day. I have had mine for 28 and she said she would have removed them especially sine Dr. amp and i talked about it last week. So Val is going to make sure my drain tube gets pulled during my bronch appointment and also make sure the staples can be removed.
I have decided I am going to ask for an advance notice of when this Doctor is in the clinic so I can prepare myself from blowing up at her. I love most everyone else I have encountered at my transplant clinic but I could definitely live without her there. Well, I hope you enjoyed me blowing off some steam.
My first encounter with her was pre-transplant. It was even before I got listed. She was trying to convince me how important it was not to wait too long before going active on the transplant list. you would think this was a good thing but I was still in denial of needing a transplant. I still thought that I could get better. In not the exact words she said...If you don't get listed you will die. Then in the next breath she said but remember this is a serious decision because of 50% of people are alive 5 years after their transplant. Not did she say this one in the visit but 4 times until my husband spoke up and said "we understand the risk and the statistics but you don't need to keep repeating that and if you say it again we are leaving." Keep in mind Brian was trying to get me to go active on the list. The entire visit with her pre-transplant was very negative.
Now fast forward to today. The nurse coordinator, Kathy came in and asked if I was ready to get my last drain tube out. I was happy and couldn't wait. Kathy needed to have the okay from the doctor before we proceeded. So then the attending came in and did my check up. He saw no reason why the drain would not be pulled and would find out about the staples. He left and returned about 2 minutes later with Dr DD. I immediately remembered her from my pre-transplant visit and knew we just did not mesh. She started off by going over my medicines. Saying something about voriconazole and I asked if she was taking about the medication that the pharmacist and I was just talking about valcyte. She quickly let me know that I was confusing voriconazole or v-fend with valganciclovir or valcyte. while doing this she spoke to me in a very condisending tone of voice. I tried to just shake it of. My dad also caught the tone she spoke to me. So I know it wasn't a prednisone overreaction moment.
Of course then I had a few questions. Brian wanted to know what date the limitations started from...my transplant date, my last surgery or when I left the hospital. For example, I should be able to drive in 8 weeks as long as the doctors approve it and I am off all pain killers. We didn't know when that 8 weeks started from. Dr DD answer was "you can drive when we say so!" No kidding that wasn't my question. Then I wanted to know how long I had to sleep at a 30% angle. Her reply "when we tell you that you don't need to." Next question, should I go to my dentist appointment next week to get my temporary crown replaced with the permanent one? Her reply, "Thank you for telling me about your temporary crown since I will be doing your bronch next week and no change your appointment because you are on a super high dose of prednisione." I asked when should I change it to? Her reply, "I don't know, until we tell you it is okay to have oral work done." Thanks for the help Dr DD. I ended up changing the appointment until June 8th. Let's hope my temporary crown will last.
Alright now to the piece that really bothers me. Last week, Dr. Camp the big wig and my surgeon told me my drain tube would becoming out this week along with the staples. Dr DD decided she did not want to do either without talking to Dr. camp tomorrow. He is on a much needed vacation but you would think that she would have brought up my case with him this morning when they did the phone conference with him. I let this pass and figured I didn't want to rock the boat with her especially sine she is the one doing my bronch next week. So to really drive the nail in to the coffin Val, my NP at the clinic called to tell me that I need to increase my prograf again. During the phone conversation I brought up what happened at the clinic. She told me that clinic protocol was to remove any drain tubes that drained less than 30 cc a day for more than 3 days in a row and that herself or Kathy could pull the drain tubes. Then she said it is also protocol to take out staples after 30 day. I have had mine for 28 and she said she would have removed them especially sine Dr. amp and i talked about it last week. So Val is going to make sure my drain tube gets pulled during my bronch appointment and also make sure the staples can be removed.
I have decided I am going to ask for an advance notice of when this Doctor is in the clinic so I can prepare myself from blowing up at her. I love most everyone else I have encountered at my transplant clinic but I could definitely live without her there. Well, I hope you enjoyed me blowing off some steam.
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