Strange things are going on

[dreamcatchinglady]

Hi everyone,

Sorry for being away from the board for a while. I've been stressed lately and a whole lot has been going on. I don't know really where to start. I have 3 doctors appts tomorrow which include an echo to make sure I don't have a blood clot, a biopsy and clinic to talk to the transplant nurse and one of the doctors.
I was very sick last Saturday and had to go to the er. I got up about 7 and was immediately very lightheaded and dizzy. I didn't know why and my mom suggested we go out for coffee and maybe I would feel better. Well I didn't. I was having problems breathing, a lot of shortness of breath. We came home and my mom being the wonderful nurse she is listened to my heart and it was going so fast she couldn't count the beats then it would slow down and speed up again. We called the cardiologist on call in Boston and he told me to go to the er. So I went to a local hospital here in New Hampshire. They hooked me up to a heart monitor and ran lots of tests but then my heart was in regular rthyhm. They observed me for 6 and a half hours and nothing was found. They wanted to keep me overnight but I told them no since I have clinic tomorrow. Now things are being discussed for a holter monitor and everything else. I guess I am just frustrated but at the same time thankful that I have my heart. I just hope my doctors can figure something out. Thanks for letting me vent. God bless you all.

[Burton Borrok]

Vent away dear Kim, vent away.
Sometimes I think it does more good then all the drugs combined. You say you've been away for awhile - well so have I so let's welcome each other back.

Now that you're back, maybe you could keep in touch a bit more. We all care about you here and would like to hear how you are doing.

Hope all is under control now,
Burt

[Midge Rollins]

Kim, I am sorry you are going through this but at the same time I am glad to hear that I am not the only one who has some episodes of this. It seems that sometimes my heart is really rapid. I do get sob if I get up too fast and move too quickly. We have to remember when we exercise to start slow as our hearts have no nerve connections. I ( to keep myself sane) blame most every thing on the medicines. Please let us know how your appt's go. I have my next check up in March and even though I am 2 years out I have lots of questions for them. Good luck.

[Pam Alexson]

Kim,

Sorry to hear of your struggles following your transplant. I pray that they find some answers and that they can help stop the issues that are occuring. There really is a lot to consider when one has had a transplant and I am sure it can cause lots of fluctuating emotions.

I send you prayers for strength and peace.

Pam

[Laoshur]

Kimberly and Midge,

I admire both of you very much for your courage and will power. I will pray that you will both see a quick end to your rhythm problems so that you can enjoy the new hearts that you have been given. Kimberly, I will especially pray that you do not have a blood clot, as I know how debilitating that can be.

Rhoda

[shirleymahoney]

Kimberly

I'm learning more and more about these transplants, and I hope you start feeling better soon and please let us know what the doctor tells you, I hope it is something minor and it won't be any set back for you or Midge


Shirley

[karen cicconetti]

I'm sorry you haven't had a smooth ride but I hope things will get better soon. I am almost 8 years post transplant and still have some of the same symptoms you described. Their has even been times that my heart rate was so fast they thought I was in a-fib. I was not.
I had a lot of tests and for me my heart rate goes up when I'm do for my period. I have had every hormone level known to man done and it was confirmed!! It is due to hormones At first they didn't think it was possible. It doesn't happen as often but it still occures.I hope they can find what the reason is for you, maybe it's just going to take some time. Have faith and stay well. If you need to talk you know where I am.


Love Karen

[dreamcatchinglady]

Thanks everyone,
Your thoughts mean a lot to me. I love this HCMA board and the wonderful people on it. It is blessed truly. Welcome back Burt it is great to have you back :D Midge and Karen Thanks it helps to know that I'm not the only one this happens to. All of us who have or have had HCMA and all of us who have had transplants are heart warriors. Truly we are.
Ok well I had my echo, my biopsy and clinic on Thursday in Boston at Brigham and Women's. They can't figure out last Saturday's episode but I will be receiving a holter monitor in the mail and I have any bad symptoms again I can hook up. So I thought things were set or so I thought. Well I got a voice mail on my cellphone yesterday from the transplant nurse yesterday and she said call her back. So I called her left a message then she called me back and said do you want the good news first? And I said yes she said the echo looked good. I wasn't prepared for the bad news. The biopsy showed rejection. It was a 2-3 rejection so she said right in the middle.This is my first rejection I've had since transplant. So she told me to go up on the cellcept,pravachol,cyclosporine, Magnesium and called in a scrip for Potassium. So many pills. So starting today I had a VNA come in and I have very bad veins and she couldn't get the iv in so I had Brigham call a local hospital near my home and I had them put the iv and start the solu-medelorol. I get 3 doses I got one today and one tomorrow and one Monday. My mom will do the doses tomorrow and Monday. I am so exhausted and the nurse told me on the phone that this will do that to you. Lucky her she got to fly to Hawaii today and miss this blizzard. I am trying to remember this rejection is just one little bump on the way I think I'm right. I'm sorry if I'm sad it's just this is all new to me. God bless you all. Thanks for your thoughts I am blessed with all of you. 8-)

[Midge Rollins]

Kim, Yes rejection is a bump in the road. The Dr's may think it is a small one but when it happens to you it is huge. I had mine a 3 A one month out. I too had the 3 days of massive solumedrol. the good news is it takes you out of rejection. the bad news is it makes you feel crummy for a while. It is great they have meds to take care of all of us. I sometimes feel like a pill popper. big time. Consider our alternative I will take 25 pills a day. Good luck with all of this. Keep us posted.

[Pam Alexson]

Kim,

You are in my thoughts and prayers. I am glad we have Midge,Karen and others that have gone on before you to offer you the support and encouragement that they can. I can only sit here and imagine how scarey it all is and offer you my care, concern and well wishes.

Pam

[karen cicconetti]

I KNOW A LOT OF PEOPLE WHO HAVE HAD 2-3 REJECTION AND ARE JUST FINE . ME FOR ONE I HAD A 3A REJECTION AND THEY UPPED THE PREDNISONE AND SINCE THEN NOTHING. this WAS THE FIRST WEEKS AFTER TRANSPLANT. IT JUST YOUR IMMUNE SYSTEM TELLING YOU IT'S STILL THERE. I HAVE A FRIEND WHO IS TEN YEARS OUT AND IN THE BEGINNING HE HAD REJECTION EVERY BX FOR SIX MONTHS THEY PLAYED WITH HIS MEDS AND NOTHING SINCE.
HE EVEN POWERS WALKS THE NYC MARATHON. SO TRY NOT TO WORRY THE DOCS KNOW WHAT TO DO. STAY WELL AND CONTACT ME IF YOU NEED ME

HAPPY HEART DAY
KAREN :big_heart