Linda Gates - phaware® interview 270

Pulmonary hypertension patient Linda Gates on being diagnosed at age 55 and how this rare disease impacted her retirement plans.

I'm Linda Gates and I'm a pulmonary hypertension patient.

I had symptoms several years before I was diagnosed. My husband and I had gone to Yosemite and I attributed my not being able to walk 10 feet without catching our breath to being sedentary as a secretary and my age and being overweight. I didn't come home and go to the doctor and say I had a problem. At 55, my primary care physician said it was time to do a stress test. I thought I did okay. I didn't pass out or fall off the treadmill, but evidently they saw something that wasn't normal.

So, after that they did several other tests. After the third test I said, “what are you looking for and what's wrong?” They told me about pulmonary hypertension. And of course as most people do, you Google it and you are very shocked, which I was. They also listed all the steps and the tests that you go through to rule out other diseases or other problems. The final diagnosis was made after a right heart catheterization.

At that time, I felt lucky because I was diagnosed right after the first oral medication had been approved. I told my doctor at that time that I wanted to try the oral medication first and if that didn't work then we would move onto the other intravenous things.

At 55, my husband and I were looking forward to retirement and a life of travel. So a diagnosis like this was very devastating, but we changed some of our plans. I was diagnosed 15 years ago, so that diagnosis, that two to three years or five years prognosis didn't hold for a lot of our patients.

Since I was diagnosed, I have become a support group leader. The first support group meeting I went to in the beginning, most of the patients were intravenous patients, because the first oral had just been approved. I saw that those people were going through a lot of things, but they were still living and they were still able to do the things that I hoped my husband and I would be able to do.

So after about a year, the support group leader at that time was not in good health, so I offered to help and then wound up taking over the support group. So it's been a long journey, but it's one that we've been able to adjust our life to do the things that we dreamed of doing when we retired.

Well, I've been very lucky. I've only been on oral medication. They have adjusted some things or whatever, but I'm doing very well. After diagnosis, my husband and I have been to Alaska. We flew to Alaska, made arrangements for a 52 pound oxygen concentrator, which I was only on oxygen at night, delivered to the hotel. We had it brought to the train that takes you three days down through the parks in Alaska down to a cruise. We were able to get tanks delivered to the ship, so we were able to do something that we had planned on doing.

We have been to Iceland, we didn't see the Northern Lights, but we made it to Iceland. We've been to Italy, to Spain, to England, Greece, every one of the 50 states. We have been able to do all the things that we planned on doing. We've had to adjust things. I'm on a small concentrator now, so it's easier to carry around and get to the places that we need to go. We're able to do all the things that we planned to do. We've made adjustments along the way and we don't get around as easy as we once did, but we feel very lucky and blessed that we've had this journey with PH.

It does take planning and we usually ahead of time try to figure out where we're going to go. You have to make arrangements through the airline. We've learned to ask for wheelchair assistance because it never fails the concourse where you have to get on the plane as the last one at the end of the thing. That helps you get through security and customs quicker. We've learned that we have to take all the equipment that we might need. You need to need have a one and a half times battery life for your concentrated on the plane. If you don't have enough batteries, there are companies that rent them, as well as concentrators and you can have them delivered to a location if you're going to be there for any length of time, if you don't have your own equipment. But we've learned to adjust.

In the beginning, we changed our plans from buying a camper when we retired and traveling in a camper. We decided that we would do better in a hotel. We were looking for a smaller car that would hold my 52 pound concentrator. My husband built a box the same dimensions of the concentrator and we carried that box to all the car dealerships to make sure that it would fit in the back without having to put seats down and adjust anything. So we've made adjustments, but I like to say I'm living with PH and that's what we intend to do.

I'd like to say that the support groups are the key for PH patients. Medication and doctors are important, but your attitude and hope makes the biggest difference. You can get that in a support group and you just need to make sure that you participate. We've learned so much about so many things through support groups that I just can't understand any patient that would not be able to get something from a support group.

I'm Linda Gates and I'm aware that I'm rare.

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