Terri Needs a Heart Transplant and Your Help

March 16, 2019

Unfortunately I have been admitted to Vanderbilt for the 3rd time this year. I had blood work Thursday. My BUN is badly elevated. The BUN tells you how your kidneys are working. Mine are overworking. Good news is my creatinine level is normal so I’m not in kidney failure. Potassium level is also normal. I still have a lot of fluid.

They had a right heart cath planned for the 27th. At which time they said there would be a likely chance they’ll keep me and move me up on the transplant list. This has just caused that to happen a week early.

It looks like I’ll be calling Nashville home until after recovery. I’m suppose to have a heart cath today. They tried yesterday but because of a slight complication it couldn’t be completed. I’m doing fine.

March 8, 2019

The increased dosage of my diuretic has been working to remove the extra fluid I’m holding onto. This is good news for me because I really did not want to be admitted to the hospital again.

March 7, 2019

I had my first Heart Transplant hospital follow up appointment. It went fairly well. My current issue is the same as why I was previously admitted, excessive fluid retention. So far I have delayed being readmitted (YAH). Tomorrow I have to increase my dosage on my serious diuretic. We are hoping for a positive response with it. If I do not see any response from this then Friday I’ll return to Vanderbilt to be admitted for more IV drip therapy. Cross your fingers...say some prayers...and hope that the medication reduces the amount of fluid I’m currently holding on to.

March 1, 2019

Hey everyone! Just a small update.

I saw my PCP today for a hospital follow up. She had labs drawn so hopefully my numbers come back good still. Her concern is for my potassium level. The diuretics that I take can deplete my potassium, which can have major side effects. I’m slowly getting better so I’m confident my potassium level is fine or only a little low.

My Heart Transplant coordinator has sent in a referral for me to start cardiac rehab. I’m looking forward to getting back into a gym. It will start in a few weeks so I still have plenty of time to recuperate from my recent hospital visits.

February 27, 2019

I heard from Vanderbilt Heart Transplant Team today. I will be added to the list. This is definitely good news, but it is still scary. The coordinator said that because of my blood type A I could potentially receive a new heart in a few months.

In the meantime, hopefully, I can start Cardiac Rehab so that I can work on my muscle strength and weight. Dieting is challenging, but I’m determined to lose this weight.

February 26, 2019

Hello Everyone! I'm back being evaluated by the Heart Transplant Team. I've had 2 hospital stays since January. I was hospitalized for a week each time. Being in the hospital has improved my kidney function & got a lot of fluid off to help stabilize my CHF, but my leg & arm muscles have suffered some. I'm currently out of the hospital. My daily goals include watching my salt/fluid intake & work on getting my muscle strength/endurance better. It's currently a waiting game, but I should hear back from the Heart Transplant Team tomorrow (2/27).

March 16, 2016

I have received wonderful news from the transplant team. After my test results last week, they have determined that I am too well to be listed on the Heart Transplant list for now. I will be referred back to the CHF clinic at Vanderbilt to be monitored. The weight loss has definitely helped. I'm going to keep on losing so that I can postpone being added as long as I can.

Thanks everyone!!

January 28, 2016

I went for my check up with the Heart Transplant Clinic and Neurology Clinic today. The heart transplant group is going to continue to follow me. As of right now, they have not made the official decision to add me to the list. There are still factors that they are trying to determine. Hopefully the visit with the neurologist will give the heart doctors insight into my congenital myopathy. The neurologist does not see a reason that my titin congenital myopathy would hinder me with receiving a new heart. The heart transplant will meet and discuss my case in the next 2 weeks. The cardiologist still feels that as long as my health status remains stable then I should be able to postpone the urgency for the transplant. That is definitely a plus. Another plus for me is I have lost 28 lbs. I definitely feel better lately since watching my salt intake more closely.

November 24, 2015

I had my follow up with the Transplant Clinic at Vanderbilt today. It went well. The Transplant Clinic doctors still want to find more information regarding my Titin myopathy and figuring out how my muscle disease may progress in the future. The doctors are also still trying to figure out which causes my fatigue first my heart failure or my muscle weakness. It is a little difficult for me to distinguish between the two sometimes. The doctor I saw today is going to make a few calls to other neurologists that I have seen to try to get the information regarding my muscle disease. As of right now, I have an appointment in January with the neurologists at Vanderbilt. I don't have to follow up for 3 months with the Transplant Clinic.

October 22, 2015

Please check me out on Facebook. https://www.facebook.com/tigtcs12

October 22, 2015

Hello everyone! I had a follow up appointment with the transplant clinic at Vanderbilt today. I feel that the appointment went well. As of right now, it is a waiting game. They are trying to follow up with neurologists to get their view on how my muscle disease may progress in the future. The earliest Vandy can get me an appointment with the neurologist group is January. The transplant clinic is going to try to follow up with my current local neurologist so I will probably get an update of that in a month when I return. On the plus side of my appointment today there is not an urgency to be placed on the heart transplant list. I am feeling well, exercising, and losing weight. I strive to continue this to push off the possibility of a transplant as long as I can. I still need to prepare myself for the day that it will be a necessity so any donation that you are able to provide I will greatly appreciate! ~Terri C~

October 7, 2015

I am in the beginning process of being evaluated to be placed on the heart transplant list. I have a congenital myopathy along with my cardiac issues. My congenital myopathy comes from the Titin mutation that I was born with. The Titin mutation causes both my heart issues and my skeletal issues. My physicians' are currently evaluating how my congenital myopathy will be affected by the heart transplant. Once they gather enough information I will most likely be added to the transplant list. I have been told numerous times in the last 5 years that I may one day need a new heart. I just did not think it would come possibly this soon.