Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> In the hospital again http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1408966933 Message started by Riverwn on 08/25/14 at 00:42:13

Title: In the hospital again
Post by Riverwn on 08/25/14 at 00:42:13

Im in the hospital right now, have been since last Wednesday. They think my Sjogrens Syndrome is not allowing me to breath deeply and hardening my lungs and bronchioles. They also think I am trying to have another heart attack... so this morning I am going for a Cardiac Cath and posible open heart surgery to try to fix the stents in my heart (3 chromium). Please say a prayer for me today and remember how very much I love you all.
xoxoxo
Ramona

Title: Re: In the hospital again
Post by DeborahW, Founder on 08/25/14 at 03:46:43

Sending you the biggest get well wishes and prayers!!! You go in there and get everything fixed up and then come back here for a celebration! We will be waiting!!! [smiley=thumbsup.gif] :) :-*

Title: Re: In the hospital again
Post by brigitte on 08/25/14 at 05:55:25

Wishing you all the best Ramona. You are in my thoughts and prayers❤

Title: Re: In the hospital again
Post by sarahkay1111 on 08/25/14 at 12:06:57

Hi Ramona,

I'm so sorry to hear that you are going through all of this :'( Are your mast cells staying calm? I will pray for you and wish you the best with everything!

Sarah

Title: Re: In the hospital again
Post by Susan on 08/25/14 at 12:42:41

Ramona, so sorry to hear how you are doing! My thoughts and prayers are with you.

When I first came to the board, I learned so much from you, and am so grateful for that. I just wish you didn't have to have the personal experience to pass on the wisdom.

Title: Re: In the hospital again
Post by Joan on 08/27/14 at 17:55:41

Ramona,

Hoping and sending many prayers for your speedy recovery! Keep us posted! Big hug and lots of loving thoughts!!!!!

Title: Re: In the hospital again
Post by Futurehope on 09/01/14 at 06:48:15

Praying for God's wisdom and for a speedy uneventful recovery.

Title: Re: In the hospital again
Post by angelloz on 09/03/14 at 13:16:11

Sending prayers and hugs!!

Title: Re: In the hospital again
Post by Riverwn on 09/08/14 at 05:43:55

Thank you all so much, your prayers and love helped me through all of it. Well I went thru the cardiac Cath with flying colors and the 3 stents that I have are working well. The downside is, I am suddenly at 30% ejection fraction and now have a very weak heart. The Drs told me, "You are not a candidate for transplant with all the auto-immune things you have going on." and "A pacemaker will not help you, maybe a defibrillator would." "We have done all we can do, there is nothing more to be done." and that was it. My family freaked and so did I. I licked my wounds for a few days and howled at the moon lol. Then we decided to get a second opinion and I transferred to Shands in Gainesville.

They were fantastic. While they agreed with the assessment of my hearts weakness, they did say there were drugs that could help and I now have a Cardiac Failure Dr. They said something I found extremely interesting, "Your Mastocytosis is attacking your heart." We had to come to agreement that I need drugs that are contraindicated with Masto and I have risks on either side; Masto or Heart. Right now I have my Masto more controlled and my risk is critical with my heart, so I am taking the drugs.

I know we want to see our Mast Cell Disease in more positive terms but I think we need to realize that EVERYTHING we go through; i.e. illnesses and traumas will reflect our Masto too because Mast cells rush in to help (that is their job) and they are like a bad dinner guest who doesn't leave. We need to know this to help protect ourselves.

We need to realize that;
1)We will never be able to give blood.
2)We will never be a candidate for any transplant
3)We cannot be organ donors.

Treat yourself with love and take many laugh breaks. Again, thank you all so much for your love, it is irreplaceable :)
Ramona
xoxoxo

Title: Re: In the hospital again
Post by Futurehope on 09/08/14 at 12:41:31

Ramona, I am so glad you went to Shands and got other doctors to give suggestions.

I, too, am going to Shands for my Mast cell disease and my GI distress, though I also am having problems with shortness of breath and tachycardia. My current cardiologist is not a Shands doctor.

I may eventually need a physician at Shands like you have. So, if you do not mind sharing the name of the physician that gave you cardiac suggestions, I'd appreciate it.

Here's to uneventful, healthier days ahead for you.

Title: Re: In the hospital again
Post by sarahkay1111 on 09/08/14 at 16:21:46

Ramona,

I'm glad you made it okay through the surgery and that you are able to take the meds you need. Maybe your EF will improve with the medications! Are they thinking of putting in an ICD, or do they want to wait to see if you improve first? Thank God for 2nd opinions ;D My thoughts and prayers are with you--Sarah